the-introduction-of-individual-budgets-as-a-resource-allocation-system-for-disability-services-in-ireland

Disability Services in Ireland

The Funding of Specialist Disability Services in Ireland

In Ireland, the Department of Health & Children delegates the responsibility for health and personal social services to the Health Service Executive (HSE) The HSE's services, including their types and volumes, are detailed each year in a National Service Plan.

The HSE has allocated a budget of €1.467 billion for health and personal social services aimed at children and adults with disabilities These services are primarily provided in collaboration with non-statutory voluntary service providers, although some are delivered directly by the HSE The disability budget is distributed to the 32 Local Health Offices (LHO) across the country and to select larger voluntary service providers at the regional level.

In 2010, the HSE allocated €450 million for direct disability services, while non-statutory voluntary organizations received a budget of €1.026 billion for similar services.

In 2010, the disability budget allocation revealed that €858 million was designated for services related to intellectual disabilities and autism spectrum disorders, while €551 million was earmarked for physical and sensory disability services Additionally, €56 million was assigned to various other services, and €10 million was allocated for allowances.

In 2009, nearly 75% of total disability expenditure was allocated to two primary sectors: residential supports, which accounted for 48%, and adult day care services, representing 26% The remaining funds were directed towards various essential services, including allowances, multidisciplinary teams, early intervention teams, personal assistant services, respite care, transfers from unsuitable placements, aids and appliances, and other rehabilitative efforts.

8 Review of Disability Services under the Value for Money and Policy Review Initiative 2008-2011 - press release http://www.dohc.ie/press/releases/2009/20090918.html, Accessed 14th February 2011.

In 2010, the Human Rights Commission published an inquiry report addressing the human rights issues related to the operation of a residential and day care center for individuals with severe to profound intellectual disabilities in Dublin The report highlights critical concerns regarding the treatment and rights of residents within such facilities.

The Health Act 2004 designates the Health Service Executive (HSE) with the primary responsibility of providing health and personal social services; however, a clear definition of these services has yet to be established (HRC, 2010).

11 Health Service Executive (2010) National Service Plan 2010 Dublin, Health Service Executive Available at http://www.hse.ie/eng/services/Publications/corporate/NSP2010.html, Accessed 14th February 2011.

In 2007, approximately 1,500,000 was allocated for disability services, with over half (55% or 820,000) distributed through Local Health Office (LHO) regions, while the remaining 45% (680,000) was directly given to service providers, according to Vega et al (2010) in their work on developing a Resource Allocation Model for health services in Dublin.

13 Health Service Executive (2010) National Service Plan 2010 Dublin, Health Service Executive Available at http://www.hse.ie/eng/services/Publications/corporate/NSP2010.html, Accessed 14th February 2011.

The National Disability Authority's 2010 advice paper highlights the allocation of funds within the disability budget managed by the Department of Health and Children, indicating that many expenditures do not align with the definition of 'health care' recognized in other countries.

The annual provision of disability-specific services, as specified in the National Service Plan, is informed by two key national databases: the National Intellectual Disability Database (NIDD) and the National Physical and Sensory Disability Database (NPSDD).

The National Physical and Sensory Disability Database (NPSDD) provides crucial insights into the current state of specialized health and personal social services, while also assessing future needs over the next five years However, the voluntary enrollment of individuals and the lack of a standardized needs assessment have raised concerns from the Comptroller and Auditor General regarding the databases' effectiveness for service planning.

The National Disability Authority (NDA) has expressed concerns regarding the voluntary nature of disability service databases, questioning whether they provide a complete overview of service delivery and the overall need for such services Additionally, the NDA highlights the focus on individuals aged 66 and younger, noting that disability incidence significantly increases with age These issues raise critical questions about the effectiveness of the current databases in planning disability services, prompting calls for their integration with other disability databases maintained by the Health Service Executive (HSE) to enhance data comprehensiveness and coverage.

Funding of Non-Statutory providers under the Health Act 2004

The Health Act 2004, specifically Sections 38 and 39, outlines the legislative framework for funding non-statutory disability organizations Section 38 allows for funding applications from organizations delivering services on behalf of the Health Service Executive (HSE) Currently, this funding is restricted to 26 organizations within the HSE Employment sector.

15 Department of Health & Children disability service programme expenditure 2009 as presented in Table 2, National Disability Authority (2010) Advice paper to the Value for Money and Policy Review of Disability Services

Programme Dublin, National Disability Authority.

In their 2010 report, Brick et al examine the critical aspects of resource allocation, financing, and sustainability within the healthcare sector The study, commissioned by the Expert Group on Resource Allocation and Financing in Health, highlights the need for effective strategies to ensure the long-term viability of health services The findings emphasize the importance of evidence-based approaches to optimize resource distribution, ultimately aiming to improve health outcomes and equity in access to care This comprehensive analysis serves as a vital resource for policymakers and stakeholders in the healthcare system.

17 http://www.hrb.ie/health-information-evidence/disability/, Accessed 14th February 2011.

19 Comptroller and Auditor General (2005) Provision of Disability Services by Nonprofit Organisations http://www.audgen.gov.ie/documents/vfmreports/52_DisabilityServices.pdf, Accessed 14th February 2011.

20 National Disability Authority (2005) Submission to the Department of Health and Children Strategic Review of Disability Services Available at: www.nda.ie/website/nda/cntmgmtnew.nsf/0/003B7BEBA64D2240802570BB005878C3/$File/

Submission_on_Strategic_Review_of_Disability_Services.doc, Accessed 14th February 2011.

The Comptroller and Auditor General (2005) emphasizes the need for improved integration between the disability databases overseen by the Health Research Board and the Rehabilitative Training Database managed by the Health Service Executive (HSE).

23 http://www.irishstatutebook.ie/2004/en/act/pub/0042/sec0038.html, Accessed 14th February 2011.

Section 39 of the Control Framework 24 applies to organizations offering services similar to those provided by the HSE The key difference between Section 38 and Section 39 funded organizations lies in their relationship with the HSE: Section 38 organizations deliver services 'on behalf of' the HSE, while Section 39 organizations do so 'with the assistance of' the HSE However, experts have observed that there is minimal distinction in the types of services offered by organizations receiving funding under both sections.

Section 38 and Section 39 provider organizations can be contracted by HSE for disability services without a tendering process, resulting in 'contracts of indefinite length.' However, many international jurisdictions are moving towards alternative funding models, such as block grants linked to standard unit prices, competitive tendering, and individualized funding based on standardized assessments of need These models create more opportunities for new market entrants and offer individuals with disabilities increased flexibility in choosing their service providers.

Capital costs for Section 38 and Section 39 organizations can receive funding through the HSE Capital Programme, which is negotiated on an ad-hoc basis However, the negotiation process for non-capital costs is currently undergoing changes Until 2009, these costs were regulated annually through Service Level Agreements, which have faced criticism for their inconsistent application across organizations, the weak connection between service delivery and funding, and the inability to calculate unit costs for each type of service provided.

In light of these criticisms, negotiations between HSE and provider organisations are now transferring to regulation via new Service

Arrangements The Service Arrangements comprise two parts, firstly a standard set of terms and conditions and secondly, a suite of ten schedules

24 http://www.hse.ie/eng/services/Publications/Non_Statutory_Sector/, Accessed 14th February 2011.

26 Power, A., (2010) Individualised Resource Allocation Systems: Models and lessons for Ireland Centre for Disability Law and Policy, National University of Ireland, Galway.

The Welsh Assembly Government provides detailed guidance on procurement for public services, including social care and housing support, through a comprehensive Procurement Route Planner available at http://www.buy4wales.co.uk/PRP/social-care/contents/index.html, as of February 14, 2011.

29 National Disability Authority (2010) NDA Advice Paper to the Value for Money and Policy Review of Disability Services Dublin, National Disability Authority.

The Health Service Executive (HSE) collaborates annually with service providers to establish Service Arrangements, monitored through a newly implemented National Register system Organizations are required to submit comprehensive information to the HSE each year, including contact details, funding levels, service quantities, performance monitoring protocols, quality standards, personnel numbers, insurance coverage, and complaint handling procedures.

Detailed non-capital costs are captured under Schedule 3 (Service Delivery Specification) of the new Service Arrangement The National Business

The Support Unit of the HSE has created standardized templates for the submission of Schedule 3 data from provider organizations These include a Minimum Data Set template for detailed non-capital cost data at the service unit level, a generic resource allocation model template for more comprehensive information, and a Disability Review 2010 template designed for the Review of Disability Services under the Value for Money and Policy Review Initiative (2008-2011) The National Business Support Unit is currently working on collecting the initial returns of non-capital costs for the financial year.

2009 using a combination of the Disability Review 2010 template and the Minimum Data Set template 36

The financial insights derived from Service Arrangements offer enhanced transparency about the costs and scope of disability services in Ireland compared to the previous Service Level Agreements However, the lack of data on individual service needs and associated costs represents a significant oversight.

From Incremental Determination Processes of Funding to Individual Budgets

of Funding to Individual Budgets

Service Level Agreements (SLAs) have been established between service providers and their respective Local Health Office areas or directly with HSE regional areas, including Dublin Mid Leinster, Dublin North East, West, and South The HSE utilized aggregated estimates of non-capital costs outlined in these SLAs to determine the annual block allocation for service providers.

33 http://www.hse.ie/eng/services/Publications/Non_Statutory_Sector/Section_38_Generic_Schedules_-

_Version_4.doc, Accessed 15th February 2011.

34 http://www.oireachtas.ie/documents/committees30thdail/pac/additional_documents/20101014-3.1.pdf, Accessed 15th February 2011.

35 http://www.hse.ie/eng/services/Publications/Non_Statutory_Sector/Schedule_3_Template_-_Disability_Agencies_- _Compulsary_Minimum_Data_Set_2010.xls, Accessed 15th February 2011.

The generic resource allocation model template, although not currently in use, outlines the collection of 'service outcome' data essential for monitoring and evaluating anticipated service results It emphasizes the growing importance of focusing on outcomes, such as the number of individuals engaging in supported employment and helping service recipients achieve their full potential.

In 2010, the Human Rights Commission published an inquiry report addressing human rights concerns linked to the operation of a residential and day care center for individuals with severe to profound intellectual disabilities in Dublin.

The allocation of block funding within the provider organization is distributed to units and centers, but not to individuals This funding follows an 'incremental determination process,' relying on previous annual funding to estimate the necessary budget for the upcoming year A critical aspect of this process is the initial budget, which serves as the foundation for future allocations For more established service providers in Ireland, this baseline may originate from decades past, making the original rationale for funding allocation less transparent.

The HSE recognizes that Ireland's historical funding allocation processes have resulted in a lack of standardized unit costs for services, making it impossible to establish a national average cost per service place Estimates, such as the average €80,000 per residential place used for the multi-annual investment programme (MAIP), are only intended for guiding specific initiatives and do not reflect the individual support needs of service recipients.

Financial data collected through Schedule 3 templates may exhibit bias, as calculating unit costs relies on historical staffing levels rather than reflecting individual support needs.

A comprehensive review by the Comptroller and Auditor General in 2005 raised concerns about the incremental determination processes used to allocate disability funding in Ireland The report highlighted that this approach risks weakening the connection between core funding and actual needs over time Additionally, it found significant variations in per capita allocations for disability services across different geographical regions and service providers, indicating a failure to accurately reflect the true differences in service needs.

The Department of Health and Children, along with the Economic and Social Research Institute, refers to the concept of 'historical budget with incremental spend' as outlined in their 2010 report This approach, as noted by the authors, allows for the inclusion of incremental spending while also permitting potential downward adjustments to budgets.

The Human Rights Commission's 2010 Enquiry Report addresses critical human rights issues linked to the operation of a residential and day care center for individuals with severe to profound intellectual disabilities in Dublin Chapter 8 of the report highlights significant findings and recommendations aimed at improving the care and rights of these vulnerable populations.

40 The National Federation of Voluntary Bodies produced costings of day and residential services for intellectual disabilities in 2004 - these costings have been used elsewhere as 'ball park' figures http://www.fedvol.ie/_fileupload/File/Analysis%20of%20Need.doc, Accessed 15th February 2011.

41 http://www.audgen.gov.ie/documents/annualreports/2009/ReportVol2_09_rev2.pdf, Accessed 15th February 2011.

The 2010 National Disability Authority's report highlights significant discrepancies in expenditure per person among various providers, as noted by the HSE Working Group on Congregated Settings This historical resource allocation method has faced criticism for reinforcing existing inequalities within the system.

In 2010, the Comptroller and Auditor General's report highlighted that the HSE's resource allocation strategy remained unchanged since 2005, continuing to rely on historical funding levels without adequately addressing individual support needs The National Disability Authority pointed out that the inconsistent completion of new Service Agreements complicates the understanding of service provision, including details on who receives services, the personnel involved, and associated costs.

Dissatisfaction with current funding structures has sparked a growing demand for significant reforms in the funding of disability support services in Ireland A recent public consultation by the Office of Disability and Mental Health, part of the Value for Money & Policy Review of Disability Services, highlights the need for change The report advocates for a shift towards individualized support models, where state funding is allocated based on individual needs This approach would allow individuals to choose between receiving a direct payment budget to purchase services themselves or utilizing a brokerage system that offers choice and control while having a broker manage the budget and commission services.

Provider organizations have expressed concerns about the traditional funding methods for disability services, highlighting that block funding hinders the adoption of person-centered support approaches In response, some organizations are working to 'unbundle' these block grants to create more personalized support arrangements for their clients Additionally, various umbrella organizations representing providers, family members, and advocates are actively involved in addressing these funding challenges.

43 Department of Health & Children Economic and Social Research Institute (2010) Evidence for the Expert Group on Resource Allocation and Financing in the Health Sector Department of Health and Children, Dublin.

45 http://www.audgen.gov.ie/documents/vfmreports/52_DisabilityServices.pdf, Accessed 15th February 2011.

46 National Disability Authority (2009) Submission to Expert Group on the system of resource allocation within the health service in support of the health reform programme Dublin, National Disability Authority.

47 Department of Health and Children (2010) Report on Public Consultation: Efficiency and Effectiveness of Disability Services in Ireland Available at http://www.dohc.ie/publications/pdf/vfm_consultation_report2010.pdf?direct=1, Accessed 15th February 2011.

Proposals for Resource Allocation in the Irish Health Sector

The introduction of an individual-based resource allocation model for persons with disabilities in Ireland must consider two pivotal reports from 2010, which advocate for significant reforms in funding distribution within the Irish health sector Notably, the Staines Report highlights the need to address the nationwide budget for Primary, Continuing, and Community Care services.

The allocation of resources from the Health Service Executive (HSE) to the 32 Local Health Offices (LHO) in 2007 revealed significant challenges in understanding how resources are distributed among care groups The report highlighted that current budgets do not accurately reflect service provision for the population at the LHO level, indicating a lack of a systematic approach to resource allocation To address these issues, the study recommended implementing a new resource allocation model at the LHO level, utilizing proxy age and gender-specific estimates of health service usage within each geographical region.

Specifically addressing the allocation of funding to disability services, which in

In 2007, the largest share of the PCCC budget, at 19.6%, was allocated to disability services, with the Staines Report revealing that over half (55%) of the disability-specific budget was distributed by the HSE to 32 LHO areas across the country Notably, 45% of the disability budget was directly funded by the HSE to larger non-statutory voluntary service providers, bypassing the traditional LHO funding route The report emphasizes the need to address this allocation pattern if future resource distribution is to occur at the LHO level, concluding that "any effective resource allocation system will have to ensure budgetary stability for these providers" (p.68).

50 http://www.npsa.ie/TakingControl/Guide.html, Accessed 15th February 2011.

51 NDA (2010) Individualised supports and mainstream services; attitudes of people with disabilities and other stakeholders to policy proposals by the Department of Health and Children Dublin, National Disability Authority

52 Vega, A., O'Shea, S, Murrin, C., & Staines, A., (2010) Towards the development of a Resource Allocation Model of Primary, Continuing and Community Care in the Health Services Dublin, Dublin City University.

The Report of the Expert Group on Resource Allocation and Financing in the Health Sector highlights the need for improved resource allocation in Ireland's healthcare system Tasked by the Minister for Health and Children, the Expert Group identified guiding principles from successful resource allocation systems in other countries, advocating for a shift from block funding to a model based on patient casemix Their 32 recommendations emphasize the urgent development of a resource allocation model that supports a five-year planning cycle, utilizing health predictors like age and social deprivation for equitable funding distribution The report stresses the importance of separating purchaser and provider roles, linking reimbursement to quality standards and nationally-agreed care protocols Notably, the Expert Group recognizes Ireland's 'late mover advantage' in learning from international best practices and recommends establishing an independent implementation body to oversee the new resource allocation model.

The Expert Group highlighted that disability services represent the largest portion of expenses in community and continuing care programmes Furthermore, there is a global shift in disability service provision from a medical model of care to a social model, which prioritizes self-determination for individuals with disabilities.

55 Department of Health and Children (2010) Report of the Expert Group on Resource Allocation and Financing in the Health Sector Department of Health and Children, Dublin.

The report highlights that the existing health funding allocation in Ireland may discourage individuals from utilizing health services as intended by health policy Specifically, those in need of care might opt for lower-cost emergency department services instead of primary and community care settings To address this issue, the report calls for reform in the resource allocation system and presents a framework based on an analysis of models from eight international jurisdictions This framework suggests a tiered approach to primary care subsidization, consisting of four entitlement categories that consider varying income and health circumstances.

The Expert Group's guiding principles emphasize the need for a transparent resource allocation system that prioritizes population needs and is consistently applied at the local level to prevent disparities It advocates for service delivery in the most suitable settings, encourages the integration of services across primary, hospital, and community care, and ensures that financial incentives foster good health and well-being The system should aim for effectiveness and equity while guaranteeing sustainable expenditures that provide value for money.

58 NDA Conference Report Note (2010) Resource Allocation, Financing and Sustainability in Healthcare 19 October

59 McDaid D, Wiley M, Maresso A & Mossialos E (2009) Ireland: Health system review Health Systems in Transition,11(4) 1 – 268.

60 http://www.esri.ie/news_events/latest_press_releases/publication_of_report_of_/index.xml, Accessed 15th February 2011. community based settings, the Expert Group proposed that local level HSE personnel will have a 'major role' in co-ordinating care provision, albeit a development that will take 'some time to complete, as it has done in other countries' 61 The introduction of individualised funding options within the community and continuing care sector was supported by the Expert Group who called for further potential for more individualised solutions 62

The Expert Group has proposed the establishment of Integrated Service Areas (ISA) to optimize national funding from the HSE in response to population needs These ISAs are a key component of the new HSE Integrated Care Model, with eight regions defined and more under consideration While ISAs aim to cover a broader population than the Local Health Office (LHO) areas suggested by the Staines Report, both initiatives share the goal of localizing funding allocation based on community needs A significant challenge lies in integrating funding for larger non-statutory voluntary providers, which currently receive direct allocations from the HSE rather than through regional distribution as per LHO guidelines In 2009, €458.4 million was allocated to non-statutory disability providers under this existing system.

The Staines report and the Expert Group on Resource Allocation report propose a new resource allocation model for the health sector in Ireland, emphasizing the need for regional assessments, individualized care solutions, and enhanced transparency and equity in service access It is essential that any changes to resource allocation in disability services align with the implementation of this new system within the wider health framework.

62 Department of Health and Children (2010) Report of the Expert Group on Resource Allocation and Financing in the Health Sector Department of Health and Children, Dublin Section 5.2.16.

63 The new HSE Integrated Care Model proposes the delivery of services across Integrated Service Areas (ISAs) where one individual will be responsible for all hospital and community services The delivery model aims to place the person at the centre of a four level system comprising Primary Care Teams (Level 1), Community Health & Social Care Networks (Level 2), Integrated Service Areas (including secondary care hospitals; Level 3) and Tertiary Care (Level 4) To date eight ISAs have been defined and further work is underway in other regions The design of ISAs will be based on catchment area, road network, primary care team design, spatial planning and local authority boundaries HSE is currently in negotiations with large non-statutory providers regarding the configuration of ISAs Health Manager, Journal of the Health Management Institute of Ireland Available at http://journal.hmi.ie/?pe4, Accessed 15th February 2011.

64 Expenditure is sourced via a HSE personal communication 01.04.2010.

In 2009, a €458.4 million grant allocation for large disability voluntary providers raises concerns, especially when compared to the €676.7 million funding for disability services reported in 2007 by the Staines Report as 'Non-LHO' based expenditure This significant discrepancy highlights the need for clarity regarding the expenditure and the recipients of direct grant funding from the HSE to non-statutory voluntary providers.

66 Ruane, F., (2010) Towards a better and sustainable health care system - resource allocation and financing issues for Ireland Economic and Social Research Institute, Working Paper No 358.

The Assessment of Need for People with Disabilities in Ireland

To ensure proper funding allocation that meets individual support needs, a comprehensive assessment is essential The Disability Act 2005, Part 2, mandates the evaluation of needs for those who perceive themselves as having a disability, irrespective of the associated costs or service provision capabilities Consequently, any implementation of individualized funding for individuals with disabilities will likely align with the existing Assessment of Need legislation and practices.

The Assessment of Need process, initiated in June 2007 for children under five, is governed by standards set by the Health Information and Quality Authority (HIQA) According to Part 2 of the Act, children with disabilities are entitled to an independent assessment and an annual review of their health and educational needs Applicants receive an Assessment Report detailing whether they have a disability, the nature and extent of that disability, their health and educational needs, the necessary services to address those needs, and the timeframe for service delivery.

Upon receiving an Assessment Report from the HSE that confirms the suitability of health and educational services for the applicant, a Service Statement is created within one month This statement outlines the specific services to be provided and the timeline for their availability, while ensuring that costs do not exceed the allocated budget for the Executive's service plan for the financial year Additionally, an annual review of the Assessment Report is required Applicants dissatisfied with their application outcomes can seek redress through the Office of the Disability Appeals Officer.

67 http://www.oireachtas.ie/documents/bills28/acts/2005/a1405.pdf, Accessed 15th February 2011.

In the definition of disability, "substantial restriction" refers to a permanent or likely permanent limitation that significantly impacts communication, learning, mobility, or cognitive processes This condition necessitates ongoing services for the individual, regardless of age, or, in the case of children, requires early intervention services to help mitigate the effects of the disability.

69 http://www.hiqa.ie/media/pdfs/standards_for_need_assessment.pdf, Accessed 15th February 2011 Six standards are defined: person centred approach, information, access to assessment of need, involving appropriate education and health staff in the assessment of need process, co-ordinated assessment of need, monitoring & review

70 Disability Act, Part 2 (11 (6e)) states 'a service statement shall not contain any provisions relating to education services where the subject of the statement is a child'.

71 Section 7(e) Part 2, National Disability Act 2005.

72 http://www.odao.ie/, Accessed 15th February 2011.

The HSE must keep detailed records of assessments for their annual report, which includes the total number of individuals identified as needing services that are not listed in their Service Statement This report should specify the timeline for delivering these services and provide an estimated cost for their provision.

The Department of Health and Children acknowledges the challenges in implementing Part 2 of the Disability Act, particularly in determining disability in young children and providing comprehensive Assessments of Need within the required timeframes Despite the legislation, the HSE reports that the completion of assessments within the statutory timeframe remains low, with significant variations across different Local Health Office areas Furthermore, gaps in support provision have been identified by parents, while health professionals have noted the Assessment of Need process has impacted early intervention teams, shifting focus from intervention to assessment The full implementation of the Disability Act 2005 and the Education for Persons with Special Educational Needs Act 2004 for children aged 5-18 years has been delayed due to substantial resource requirements, with only Part 2 of the Disability Act commenced for children aged 0-5 years, and no clear timeline for extension or implementation of EPSEN amidst financial constraints.

Further challenges are acknowledged by HSE who are charged with producing an annual publication on the Assessment of Need process

The challenges in quantifying unmet needs led to a one-year delay in the release of the 2008 Assessment of Need data, resulting in the publication of both 2008 and 2009 data in a single report in 2010 This report indicated that there were 2,535 applications for Assessment of Need in 2008 and an additional 2,525 in 2009 It also highlighted the significant resources needed by clinicians to conduct these assessments, estimating that by 2012, approximately 182 clinicians would be necessary to meet the growing demand for assessments.

73 http://www.dohc.ie/publications/pdf/disability_sectoral_plan2009.pdf?direct=1, Accessed 15th February 2011.

74 Health Service Executive (2009) Corporate Plan Report: Report against the HSE Corporate Plan 2008-2011 (July

- December 2009) Dublin, Health Service Executive

A survey conducted by Muldoon (2009) examined the experiences of parents with children receiving early intervention services in Limerick City and County The study explored their perceptions of the services provided and assessed the impact of the Disability Act on these families This research was part of a thesis submitted for the Diploma in Health Services Management at the University of Limerick.

76 Payne, C., (2009) The experiences of staff of the Assessment of Need in Early Intervention Services Research completed in partial fulfilment for the Psychological Society of Ireland's Expert Validation Committee's

77 http://www.dohc.ie/publications/word/disability_sectoral_plan2009.doc?direct=1, Accessed 15th February 2011. therapists whose sole focus would be the completion of these assessments This estimate reflects the highly clinical nature of the assessments of needs being undertaken to date The report estimates that multidisciplinary teams of clinicians are spending an average of 26 hours clinical input on each assessment

A diversion of clinical work may be more likely to arise among Early

Intervention Teams recommend the Assessment of Need process as the primary method for service delivery However, some Early Intervention Teams utilize a dual assessment system, allowing certain children to be referred through the Assessment of Need process while others may be referred by an Area Medical Officer or Public Health Nurse This alternative route, free from the strict time limitations of statutory assessments, enables clinicians to conduct evaluations more flexibly within the context of their clinical practice.

Recognising the challenges in how the needs assessment process is implemented, efforts are underway to address these.

The Role of the Assessment of Need process in determining Individual Budgets

process in determining Individual Budgets

Despite the challenges in implementing the Assessment of Need process, the rights established by Part 2 of the Disability Act and the coordination through Local Health Offices are essential for creating a resource allocation system tailored to individual support needs This part of the act grants individuals the right to an independent assessment of their health and education needs, with 'health services' encompassing personal social services This inclusion is crucial for the Assessment of Need system's role in determining individual budgets Global trends indicate that individual budgets often prioritize personal social services funding, enabling individuals to have increased control and choice over their supports In regions where individual budgets are available, direct care support is typically allocated, while health supports are accessed through mainstream services Therefore, clinical assessments within the Assessment of Need process may be better suited to ongoing evaluations by clinicians.

In a 2009 thesis by B Muldoon, a survey was conducted among parents of children receiving early intervention services in Limerick City and County The study aimed to assess parental perceptions of the services and evaluate the impact of the Disability Act on these interventions This research was part of the requirements for a Diploma in Health Services Management at the University of Limerick.

80 http://www.in-control.org.uk/site/INCO/Templates/General.aspx?pageid7&cc=GB Accessed 15th February 2011. intervention work, while more holistic assessments could be undertaken to determine an individual's overall support needs.

Adopting a holistic assessment approach presents the significant advantage of standardizing assessment tools across various clinicians and multidisciplinary teams Currently, the use of diverse assessment tools can lead to inconsistencies, where individuals in similar situations receive varying evaluations and services Implementing a standardized assessment tool as part of the resource allocation process would help minimize these inequities, ensuring that individuals have access to fair and consistent services based on their needs.

An existing infrastructural framework for assessing needs is currently limited to children within the 32 Local Health Offices (LHOs), where Assessment and Liaison Officers assist applicants through the process The challenges faced in implementing a clinical assessment nationwide present an opportunity to explore more holistic approaches that prioritize overall support needs rather than solely focusing on clinical requirements With nearly three-quarters of disability specialist service expenditure allocated to residential supports and adult day care, a broader assessment for adults with disabilities is essential This approach would evaluate the necessary support to enable individuals with disabilities to live as independently as possible.

The HSE's Disability Information Unit manages the Assessment Officers' System (AOS) Database, which supports the assessment of need process for disability services Currently, the Department of Health and Children and the HSE are discussing the integration of this database with three other disability databases: the Rehabilitative Training Database, the NIDD, and the NPSDD This collaboration aims to create a more comprehensive understanding of individuals requiring disability support services across the nation and to address concerns about the effectiveness of the NIDD and NPSDD in planning and costing these services Furthermore, incorporating Assessment of Need data as the system expands to various age groups will enhance the overall effectiveness of disability service planning.

82 http://www.citizensinformation.ie/en/health/health_services_for_people_with_disabilities/ assessment_of_need_for_people_with_disabilites.html Accessed 15th February 2011.

83 Department of Health & Children disability service programme expenditure 2009 as presented in Table 2, National Disability Authority (2010) Advice paper to the Value for Money and Policy Review of Disability Services

Programme Dublin, National Disability Authority.

84 Department of Health & Children Progress Report Year 3 Review (2009) Sector Plan under the Disability Act http://www.dohc.ie/publications/pdf/disability_sectoral_plan2009.pdf?direct=1, Accessed 15th February 2011. would provide a mechanism for including individual support need data within the planning process.

One significant benefit of utilizing the Assessment of Need framework for support needs assessments is the independence it provides This structure helps to avoid potential conflicts of interest, particularly when the individuals responsible for conducting the assessments and allocating budgets are also providers of disability support services, as they could stand to benefit from the outcomes of their own assessments.

Reframing Disability Service Provision in Ireland

There is a growing momentum in Ireland for transitioning to individualized supports for people with disabilities, as highlighted by the initial findings from the Review of Disability Services This approach emphasizes a personal social service that encompasses a variety of assistance and interventions, enabling individuals to fully integrate into their communities Individualized supports are characterized by their flexibility and are tailored to meet each person's unique needs, primarily determined by the individual themselves The Review advocates for an independent assessment of needs to develop a personalized support plan and establish an "individualized budget," which is a designated sum of money allocated to provide the necessary supports and services for each individual.

Implementing an individualized support system for people with disabilities in Ireland will create a clear connection between available resources and support needs, offering genuine choices for support options Currently, per capita allocations for disability services in Ireland differ significantly based on geographical location and service providers, a situation highlighted by the Comptroller and Auditor General as one that "perpetuates existing inequalities."

The transition from disability services to individualized supports will significantly affect organizations currently offering disability support, necessitating substantial reallocation of financial resources and personnel The following chapters of this report outline the experiences related to this shift.

85 Office for Disability and Mental Health (2010) Summary of Key Proposals from The Review of Disability Policy Available at http://www.dohc.ie/publications/pdf/key%20themes%20paper_summary2010.pdf?direct=1, Accessed 15th February 2011.

The National Disability Authority's 2010 report highlights significant discrepancies in expenditure data from the HSE Working Group on Congregated Settings, revealing wide variations in costs per individual among different service providers.

The Expert Group on Resource Allocation and Financing in the Health Sector highlights that Ireland possesses a "late mover advantage" in reforming its health services By observing and learning from other jurisdictions that have advanced further in delivering individualized and equitable support services for people with disabilities, Ireland can enhance its approach to service transformation.

Ireland: Key summary points

In Ireland, the funding of disability services is primarily governed by the National Disability Databases It is essential to evaluate the function of these databases, along with related systems, in facilitating the advancement of self-directed services for individuals with disabilities.

 Currently, almost three quarters of all disability funding is spent on residential and adult day care services

Funding for non-capital costs is managed through Service Arrangements between disability service providers and the HSE These updated arrangements will offer enhanced insights into service usage and associated costs, surpassing the level of detail previously accessible.

 Service Arrangements currently apply a traditional incremental determination process of block funding to disability service providers.

 Funding via commissioning, competitive tendering or individualised funding options is not available Unit costs, where available, are based on historical staffing levels and not on level of support need.

Recent reports from the Comptroller and Auditor General, the Office of Disability and Mental Health, and the National Disability Authority advocate for a fairer, individualized resource allocation system, moving away from traditional incremental determination methods.

 Recent reports examining resource allocation models across the wider Irish Health Sector call for a system that is based on need, is equitable and promotes individualised care solutions

 The Assessment of Need process may provide the independent framework required for the development of individualised services and the allocation of individual budgets based on independently assessed need

 A move from professionally-led clinical assessments to holistic assessments of support needs would reflect international trends

Ireland is poised to leverage its 'late mover advantage' in developing individualized support services for individuals with disabilities By collaborating with countries that have successfully implemented similar systems, Ireland can enhance its approach and improve outcomes for people with disabilities.

Implementing the nationwide introduction of personal budgets: Experiences

Disability Support Funding

The UK has a comprehensive system of publicly funded support for individuals with disabilities, with social care playing a vital role This encompasses a variety of services aimed at helping people maintain independence, engage fully in society, and navigate complex relationships, particularly in vulnerable situations In England, around 1.75 million adults benefit from social care, delivered by approximately 25,000 providers across public, private, and voluntary sectors, at an estimated annual cost of £19 billion.

Social care in England is financed through local councils, drawing from multiple sources such as central government funding, council tax, and individual contributions to care packages To access social care services, individuals must undergo an eligibility assessment based on the criteria established by the UK Government's 'Fair Access to Care' framework.

The Fair Access to Care Services (FACS) guidelines outline the support needs for individuals and their carers, categorizing them into four levels: 'critical', 'substantial', 'moderate', and 'low' Local councils have the discretion to determine the level of social care provided, with most offering support primarily to those with 'critical' and 'substantial' needs However, some councils extend their services to individuals with lower levels of need.

The UK Government recognizes the concerns of councils regarding individuals who should receive support but are no longer eligible Evidence suggests that restricting eligibility criteria has only a minimal and temporary impact on spending To tackle this issue, the Government's Green Paper, 'Shaping the Future of Care Together,' proposes a national assessment system that ensures individuals across England can have their needs evaluated.

89 Department of Health (2006) Our Health, Our Care, Our Say Cm 6737 London: DH Available at www.dh.gov.uk/en/Healthcare/ourhealthourcareoursay/index.htm, Accessed 15th February 2011.

90 ACEVO (2010; Association of Chief Executives of Voluntary Organisations) An Introduction to Personal Budgets Available at https://www.acevo.org.uk/Document.Doc?idw4, Accessed 15th February 2011.

91 Also termed local authorities, unitary councils and county councils.

92 Department of Health (2010) Fair Access to Care Guidelines Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4019641.pdf, Accessed 15th February 2011.

93 In Control Fair Access to Care Services Factsheet 26.

94 HM Government (2009) Shaping the Future of Care Together (Green Paper) Available at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_102338, Accessed 15th February 2011.

95 Department of Health (2010) Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care Guidance on eligibility criteria for adult social care, England 2010 Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/ dh_113155.pdf, Accessed 15th February 2011. same manner, irrespective of location Individuals will also have a right to know the proportion of their support costs that will be paid for, and this amount will remain stable regardless of where the individual resides in

England As such the assessment will be 'portable' and the funding will 'follow the person'

A community care assessment (CCA) evaluates an individual's presenting needs, as mandated by the NHS and Community Care Act 1990, to identify barriers to independence and well-being Needs that meet local council eligibility criteria are classified as 'eligible needs' Recent revisions to the FACS guidance stress that eligibility decisions should occur post-assessment, ensuring that all individuals seeking assistance receive a thorough evaluation This person-centred approach encourages collaboration with carers and the use of self-assessment tools, while allowing flexible timescales for relationship building The shift towards empowering individuals and focusing on holistic support aims to create a more efficient assessment process By prioritizing high-quality initial assessments and regular reviews, the goal is to develop tailored support plans that minimize the need for re-assessment Additionally, proposals for a Common Assessment Framework are being explored to enhance coordination and reduce assessment duplication across social care services.

Personalisation of Disability Supports

Once a local council has identified that the presenting individual has an

'eligible need', the council has a duty to offer the individual either direct service provision or to support the individual to self-direct his or her own

96 Department of Health (2010) Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care Guidance on eligibility criteria for adult social care, England 2010 Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/ dh_113155.pdf, Accessed 15th February 2011.

97 Department of Health (2010) Impact Assessment of the revision of the Fair Access to Care Services (FACS) Guidance Available at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsLegislation/ DH_113157, Accessed 15th February 2011.

98 Department of Health (2010) Fair Access to Care Guidelines Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4019641.pdf, Accessed 15th February 2011. services 99,100 While traditionally, social care supports were provided by services offered by local councils to eligible individuals 101 , self-directed supports are now strongly endorsed by the UK Government as a method of enabling people with support needs to exercise control in their own lives 102 Putting People First 103 , launched in 2007, provided a commitment for reform of adult social care in England by proposing a unique collaboration between central government, local government, service providers, regulators, service users and carers 104 Among many recommendations contained in the document are:

 the introduction of joint strategic assessments between local statutory, voluntary and private sector organisations undertaken via local area agreements;

 the use of commissioning to incentivise and stimulate high quality provision;

 a common assessment process to determine individual support needs using self-assessment;

 the mainstreaming of personal centred planning and self-directed services;

 the promotion of family members and carers as experts;

 and the introduction of 'personal budgets for everyone eligible for publicly funded adult social care support (other than in circumstances where people require emergency access to provision)'.

Local councils are actively working to implement recommendations aimed at transforming adult social care services A key focus is the introduction of personal budgets, which, as highlighted by Transforming Social Care, is anticipated to significantly enhance the structure and delivery of these services.

99 In Control Fair Access to Care Services Factsheet 26.

Local authorities evaluate 100 eligible individuals to assess their financial situation and decide if they need to contribute to the cost of their care This process is part of the Control Fair Access to Care Services initiative, as outlined in Factsheet 26.

Eligible individuals for support include older adults, people with intellectual, physical, or sensory disabilities, individuals who have experienced accidents, those facing mental health challenges, and those suffering from long-term illnesses.

(2009) Funding adult social care in England Briefing March 2009 Available at http://www.kingsfund.org.uk/publications/briefings/funding_adult_social.html, Accessed 15th February 2011.

103 HM Government (2007) Putting People First: A shared vision and commitment to the transformation of adult social care Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/ digitalasset/dh_081119.pdf, Accessed 15th February 2011.

104 Following from key publications such as the Social Care Green Paper 'Independence, Well-being and Choice'

In 2005, the White Paper 'Our Health, Our Care, Our Say; A New Direction for Community Services' set a target for 30% of recipients to utilize personal budgets by March 2011 While progress varied across local councils, late 2009 figures indicated that 14,000 individuals from 61 councils were using personal budgets, a number that rose to 93,000 when including those receiving direct payments A December 2010 survey highlighted significant growth, revealing that up to 244,000 individuals with ongoing support needs were now receiving personal budgets, representing approximately one in four eligible individuals.

Personalised Funding Options

In the UK context, the terms personal budget, individual budget, and direct payment are often used interchangeably, but they have distinct definitions These three funding options empower individuals receiving social care to self-direct their services.

Personal budget 108 - an 'upfront' allocation of social care resources based on an assessment of the individual's need for non-residential social care

After assessing individual needs, an indicative budget is calculated to estimate the potential personal budget amount A financial assessment determines if the individual must contribute to this budget Subsequently, a support plan is created to specify how the personal budget will be utilized to achieve outlined outcomes Since individuals learn their budget before finalizing their support plan, this method is known as a 'prospective' approach to resource allocation Individuals can either request the local council to arrange necessary support services or opt to receive the personal budget as a direct payment to purchase their own supports.

Individuals can opt for a combination of services where certain arrangements are made by the local council, while the rest of their personal budget is provided directly to them as a direct payment Local councils are required to notify individuals about any contributions they may need to make towards their personal budget.

105 ACEVO (2010; Association of Chief Executives of Voluntary Organisations) An Introduction to Personal Budgets. Available at https://www.acevo.org.uk/Document.Doc?idw4, Accessed 15th February 2011.

106 ADASS (2010) Councils on track to meet 30 per cent target of personal budgets Press release, 7th December

2010 Available at http://www.adass.org.uk/index.php?option=com_content&view=article&idf5:adass-councils-on- track-to-meet-30-per-cent-target-for-personal-budgets&catid7:press-releases-2010&ItemidA9, Accessed 15th February 2011.

107 The King's Fund (2009) Funding adult social care in England Briefing March 2009 Available at http://www.kingsfund.org.uk/publications/briefings/funding_adult_social.html, Accessed 15th February 2011.

108 Department of Health (2009) Fairer Contributions Guidance Calculating an Individual's Contribution to their Personal Budget Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/ digitalasset/dh_119406.pdf, Accessed 15th February 2011.

An individual budget in the UK combines local council social care funding with various other funding sources, aiming to streamline the assessment process across different funding streams These streams may include social care, integrated community equipment services, Disabled Facilities Grants, housing-related funding such as Supporting People Grants, Access to Work funding, and the Independent Living Fund Recipients can either receive a cash payment or request their local council to purchase services on their behalf, up to the allocated budget amount A pilot program has successfully involved 959 individuals benefiting from this approach.

The IBSEN project, which examined individual budgets across 13 local authorities, found that while self-assessment tools were available for determining budgets and support plans, some councils preferred to use traditional community care assessments for new referrals This approach was favored as it provided better assistance for applicants, offered more detailed information on carers, included risk assessments, and maintained the standards upheld by social workers The pilot study concluded that individual budgets were more cost-effective than standard care arrangements, although efforts to consolidate various funding streams faced significant legislative and administrative hurdles Recipients of individual budgets reported enhanced quality of life due to increased control over their supports, while concerns were raised by caregivers about safeguarding vulnerable populations.

Direct payments in the UK refer to cash payments that match the value of a social care package Since 2003, local councils have been required to offer eligible individuals the option of direct payments as an alternative to direct service provision Most councils implemented this option well before the statutory deadline.

110 Glendinning, C., Challis, D., Fernandez, J-L., Jacobs, S., Jones, K., Knapp, M., Manthorpe, J., Moran, N., Netten, A., Stevens, M., & Wilberforce, M., (2008) Evaluation of the Individual Budgets Pilot Programme Final Report Social Policy Research Unit, University of York.

112 Social Care Institute for Excellence (SCIE, 2009) The implementation of individual budget schemes in adult social care Research Brief 20

113 HM Government Office for Disability Issues (not dated) Right to Control: a guide for local delivery agencies Available at http://odi.dwp.gov.uk/docs/wor/rtc/right-to-control-local-agencies.pdf Accessed 15th February 2011.

114 Social Care Institute for Excellence (SCIE, 2009) The implementation of individual budget schemes in adult social care Research Brief 20

116 Department of Health (2009) A guide to receiving direct payments from your local council: a route to independent living Available at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_104845, Accessed 15th February 2011.

Section 57 of the Health and Social Care Act 2001 establishes a mandatory framework that requires local authorities to provide direct payments to eligible individuals, ensuring they have access to necessary support services (Glendinning et al., 2008).

118 National Survey of Direct Payments Policy and Practice (2007) Available at http://www.pssru.ac.uk/pdf/dprla.pdf,Accessed 15th February 2011.

Most individuals assessed as needing social care have the right to direct payments, but they are not obligated to accept them if they prefer services arranged by their local council To qualify for direct payments, applicants must demonstrate their ability to manage these funds and ensure that the services purchased adequately meet their assessed needs While local councils provide guidance on permissible uses of direct payments, funding for permanent residential accommodation is prohibited Typically, direct payments are utilized to hire support staff directly or to purchase services from support organizations However, the uptake of direct payments varies significantly across local councils in the UK, with England experiencing more than double the rates of uptake compared to other regions, likely due to more effective implementation policies.

In the UK, the term 'personal budget' is increasingly favored to describe the funding allocated to individuals for managing their own services, either independently or with the assistance of a service provider.

The UK Department of Health has updated its terminology, now referring to 'personal budgets' instead of 'individual budgets' for funding allocated to eligible individuals A direct payment is one way to receive a personal budget, allowing individuals to manage cash payments directly Alternatively, funds can be managed by local councils or third parties through an Individual Service Fund (ISF), enabling self-direction without the burden of direct budget management Individuals can choose to combine these support payment methods or opt to use their personal budget for traditional 'in-house' services, thereby maintaining the status quo For those seeking more tailored solutions, there is the option to employ personal staff and create customized services to better meet their specific needs.

Developing an Individualised Resource Allocation System

Local councils across England are implementing new Resource Allocation Systems (RAS) to shift from traditional, professionally-led assessments to self-assessment processes that lead to personalized support packages and indicative budgets A fundamental principle of these RAS is equity, requiring councils to apply a single model to all individuals eligible for support, regardless of their specific needs The UK Department of Health guidelines emphasize that RAS systems should include essential components to ensure fairness and consistency in the allocation of social care resources.

1 an outcome-based self-assessment/supported-assessment questionnaire 128

2 a resource allocation calculator (often based on a points system which determines how much money to allocate on the basis of a person's response to each item on the questionnaire)

3 a database of people taking up self-directed support

4 tools to monitor and adjust the funding allocations over time.

The RAS provides a preliminary estimate of support costs for individuals, which is finalized upon agreement of the support plan detailing how needs will be met Local councils have discretion in determining final allocations and are encouraged to include a contingency of 15%-25% Some councils have observed that individuals with high support needs can distort the resource allocation model, leading them to consider excluding these individuals from the process.

126 ADASS Directors of Adult Social Services (2009) Common Resource Allocation Framework Available at http://www.dhcarenetworks.org.uk/Personalisation/Topics/Latest/Resource/?cidc76, Accessed 15th February 2011.

127 Department of Health (2009) Resource Allocation Tool 1: Purpose Principles and Challenges & Resource Allocation Tool 2: Step by Step Guide Department of Health.

In situations where individuals receive assistance from family, advocates, or staff while completing a self-assessment, the terms 'supported assessment' or 'mediated self-assessment' are applicable Conversely, the term 'self-assessment' is utilized regardless of whether the individual had help in the process.

129 Contingency levels as used in pilot of local councils reported in ADASS (2009).

(e.g those with support costs in excess of £60,000) or may impose a

'maximum figure' for the indicative allocation, however concern has been expressed that the latter strategy may be open to legal challenge 130

To aid local councils in effectively implementing their resource allocation systems, several user-friendly guidelines have been developed The Association of Directors of Adult Social Services (ADASS) has created a Common Resource Allocation Framework, informed by the experiences of 18 local councils This framework includes essential components such as principles and policy advice, a template personal needs questionnaire, a scoring sheet, a financial framework for determining indicative budgets, and a systems map that illustrates how these elements integrate into the existing social care system of the council.

ADASS recommends that councils enhance their Resource Allocation Systems (RAS) by collecting data from a suitably sized and representative sample of local individuals This involves gathering two types of data: support needs data from personal needs questionnaires and resource usage data, which includes current services received and their estimated costs In England, two primary self-assessment tools are utilized to evaluate support needs: the ADASS self-assessment questionnaire and the In Control questionnaire Notably, the ADASS instrument is derived from the In Control assessment, and some councils opt to combine both methods The self-assessment tool is concise and designed to be user-friendly, emphasizing ease of use for individuals.

Control website, is attached in Appendix A

The questionnaire items are connected to specific outcomes, each associated with a 'pound per point' fee calculation that varies among councils These fees may differ based on the respondent's category, such as individuals with disabilities or older persons Additionally, depending on the complexity of the Resource Allocation System (RAS), a single questionnaire item can link to multiple funding streams, which can be integrated into the resource allocation model or indicate eligibility for targeted funding that necessitates further assessments.

An allocation table is created from the data, displaying scores ranging from 0% to 100% along with the corresponding indicative allocations for each score Various methods can be employed to establish the relationship between these scores and individual performance.

131 Personal communication, Claire King Team Leader, Support Planning and Brokerage Team, Leicester City Council 20 July 2010.

The Department of Health's Resource Allocation Tools, specifically Tool 1 and Tool 2, outline the purpose, principles, and challenges of budget allocation in social care In the current model, RAS 5, a non-linear approach is utilized, where budget allocation is determined based on percentiles For instance, if 50% of individuals score below 48 points and have social care costs under £6,000 annually, a person scoring 48 points will receive a budget of £6,000 per year.

Costs are initially based on the services individuals currently use, following a pre-RAS system, which often results in historical costs that have a low correlation to actual support needs As individuals adopt personal budgets, these historical costs are replaced with those reflecting personal budget allocations Continuous monitoring and adjustments of these systems are essential to ensure that indicative budgets adequately meet needs and accurately represent incurred costs.

The shift from historical to personal budgets presents significant challenges, particularly in the calibration of needs versus funding The UK Department of Health recognizes that the link between funding and actual needs is often tenuous Local councils frequently struggle with budgeting, leading to allocations that are either excessive or insufficient without a clear pattern to rectify Additionally, funding tends to favor individuals with the highest support needs, potentially neglecting those with lesser requirements This situation necessitates careful consideration, especially when adjusting a person's budget downward from existing levels as determined by RAS 134.

The implementation of personal budgets in England has been evaluated through three key studies: the ongoing In Control evaluation, the 2008 IBSEN Individual Budgets Pilot Study, and the 2007 National Survey of Direct Payments Policy and Practice These evaluations, although based on a small sample of 196 individuals from the early In Control study, indicated positive or neutral changes in eight life areas for those receiving personal budgets Participants experienced enhanced quality of life, increased community participation, and improved choice and control However, concerns were raised regarding the suitability of the In Control Resource Allocation System (RAS) for the diverse population of social care recipients, particularly older adults.

134 Department of Health (2009) Resource Allocation Tool 1: Purpose Principles and Challenges & Resource Allocation Tool 2: Step by Step Guide Department of Health

135 Carr, S., & D Robbins, (2009) The implementation of individual budget schemes in adult social care Research Briefing 20 Social Care Institute for Excellence Available at http://www.scie.org.uk/publications/briefings/briefing20/index.asp, Accessed 15th February 2011.

136 Hatton, C., Waters, J., et al., (2008) Evaluation Report: Phase II of In Control's work 2005-2007 London: In Control or persons with higher support needs were differentially disadvantaged by the system 137

A recent evaluation by In Control 138 highlights findings from Richmond and Barnsley councils, indicating high overall satisfaction among personal budget recipients in key quality of life areas The report reveals a significant increase in the uptake of personal budgets, growing from around 60 individuals in 2006 to approximately 30,000 in 2009 Of those receiving personal budgets, over half (53%) are older adults, nearly a quarter (23%) have physical disabilities, just under one fifth (18%) have intellectual disabilities, and the remaining 6% are individuals with mental health challenges Personal budgets in this context are defined as cases monitored for this evaluation.

 individuals know how much money they can use for their support

 are able to spend the money in ways and at times that makes sense to them

 know what outcomes must be achieved with the money.

The recent addition of National Indicator NI 130 to the National Indicator Set for English Local Authorities highlights the significance of personal budgets in promoting self-directed services This indicator mandates that local governments report on the number of social care clients receiving self-directed support per 100,000 population, reflecting the ongoing transformation of local government in England.

Evaluative data from the implementation of direct payments and individualized budgets revealed significant system-level issues, particularly concerning the inconsistent nationwide application of these initiatives, which was evident in varying uptake rates The role of frontline staff was crucial, as many had not received adequate training on these programs, while those who did often still faced challenges in their execution.

137 Commission for Social Care Inspection (2009) The State of Social Care in England 2007/2008: Executive Summary, London: Commission for Social Care Inspection.

The impact of transitioning to self-directed services

The shift from direct service delivery to self-directed service delivery represents a significant paradigm change, with no single model applicable across England; instead, there are approximately 150 varied approaches to individualized support among local councils This transition will greatly impact how commissioners and service providers operate The UK Department of Health advises the discontinuation of block contracts in favor of more strategic direct commissioning, allowing local councils to adopt 'spot' purchasing for tailored support packages Effective commissioning should be multi-tiered, addressing regional needs with a three to ten year perspective, local needs within a one to two year timeframe, and individual needs through self-directed commissioning.

142 Fernandez, J.L et al., (2007) Direct payments in England: factors linked to variations in local provision Journal of Social Policy, 36, 1, 97-121.

143 Davey, V., Fernandez, J.L., Knapp, M., Vick, N., Jolly, D., Swift, P., et al., (2007) Direct payments: a national survey of direct payments policy and practice London PSSRU London School of Economics.

145 National Council on Disability (2004) Consumer-directed health care: How well does it work? Washington DC: National Council on Disability.

146 Leadbeater, C., Bartlett, J., Gallagher, N., (2008) Making it personal, London: Demos.

147 Hatton, C., Waters, J., et al., (2008) Evaluation Report: Phase II of In Control's work 2005-2007 London: In Control.

148 Audit Commission (2006) Choosing well: analysing the costs and benefits of choice in local public services London: Audit Commission.

150 Carr, S., (2010) Personalisation: a rough guide (revised edition) Social Care Institute for Excellence, Adults' Services Report 20 SCIE: London.

Trends in the UK indicate a shift from traditional residential services to self-directed options, with individuals increasingly opting for mainstream tenancies and seeking personal assistants and informal support There is a growing interest in purchasing services related to leisure activities, such as gym memberships and evening classes, alongside a small number of individuals using their budgets for innovative supports like football season tickets Despite these changes, there remains a limited demand for traditional service provision However, research by Deloitte & Touche highlights that the infrastructure to support this new model is likely to lag behind, pointing to a 'temporary gap' in essential services like advocacy and information.

Service providers must adapt to the evolving landscape by focusing on the needs of their service users As the shift from large block contracts to individualized contracts for personal budgets occurs, there will be an increase in administrative costs To effectively manage these changes, robust accounting and IT systems are essential for monitoring personal budget usage in line with support plans and facilitating payments Additionally, potential service users require clear and comprehensive information about available services, including new support packages and their associated costs This necessitates a detailed breakdown of service provision costs, ensuring they are accurate, competitive, and transparent, while also considering hidden expenses like volunteer time Ultimately, this information should be presented in an accessible and user-friendly format.

The emergence of personal budgeting systems is likely to advance with the growth of brokerage services According to a UK Department of Health publication on best practices in brokerage, brokers play diverse roles including assisting with assessments, developing personalized plans, identifying funding sources, arranging housing, and accessing community supports They also coordinate support, vet personal assistants, negotiate with service providers, and manage monitoring and administrative tasks.

152 Deloitte & Touche research cited in ACEVO (2010; Association of Chief Executives of Voluntary Organisations)

An Introduction to Personal Budgets Available at https://www.acevo.org.uk/Document.Doc?idw4, Accessed 15th February 2011.

154 Department of Health (2009) Good Practice in Support Planning and Brokerage available at http://www.dhcarenetworks.org.uk/_library/Resources/Personalisation/Personalisation_advice/

Local councils can either block fund organizations or utilize an individual's personal budget for services However, critics raise concerns about potential conflicts of interest when service providers act as brokers, as they might benefit from the personal budgets they help individuals secure To address these issues, some councils, like West Sussex, have implemented protocols to maintain the independence of brokerage services, while others, such as Lancashire and Cheshire, are focusing on developing accreditation and training programs in this field.

The introduction of personal budgets is set to transform the social care workforce, expanding the definition of support workers to include personal assistants, carers, volunteers, advocates, and brokers This shift is likely to give rise to 'hybrid roles,' where professionals, such as social workers, will engage more in non-traditional support areas like housing and employment, rather than solely focusing on assessments However, for those employed directly by individuals as personal assistants, critical issues surrounding employment rights, salary scales, and health and safety must be thoroughly addressed In the UK, concerns have been raised about the working conditions of personal assistants and homecare agency staff, who often face limited training opportunities and poor pay The current workforce profile reveals a predominantly female migrant demographic with high turnover rates Consequently, as support personalization increases, there is a risk that staff from the statutory and voluntary sectors may transition to the private sector, where job availability is higher but working conditions are often less favorable.

Regulatory bodies and systems will also need to take cognisance of the changes in support services 157 The Care Quality Commission (CQC) in the

The UK is in the process of creating a new regulatory framework for health and adult social care that encompasses public, private, and voluntary sectors Under this framework, all health and adult social care services will be required to register with the Care Quality Commission (CQC) and will be monitored for compliance with newly established essential standards of quality and safety Notably, the current registration does not account for situations where individuals receive support from family members or friends Further details about this new framework are anticipated by May 2011, while the regulation of personal assistants is being examined by the General Social Care Council.

156 Eborall, C., & Griffiths, R., (2008) The state of the adult social care workforce in England 2008: The third report of Skills for Care's skills research and intelligence unit, Leeds: Skills for Care.

158 http://www.cqc.org.uk/usingcareservices/anewsystemofregulation.cfm, Accessed 15th February 2011.

159 http://www.cqc.org.uk/aboutcqc/whatwedo/licensingandmonitoringcareservices/adultsocialcareassessment.cfm, Accessed 15th February 2011.

Department of Health are clear that 'ultimately the local authority has a statutory duty of care' 160

Local councils must establish robust governance structures to effectively manage risks, prevent fund misuse, and implement suitable auditing practices Additionally, they are urged to monitor both organizational and individual outcomes Organizational outcomes encompass factors such as cost, risk management, choice, control, and the alignment of self-directed services with broader council objectives Individual outcomes should be assessed through personalized support plans that are compared against baseline evaluations.

The Right to Control

The "Right to Control" initiative, part of the Welfare Reform Act 2009, aims to empower adults with disabilities by enhancing their choice and control over service provision This legislation allows for the development of pilot projects over three years to evaluate the effects of these new initiatives on the lives of individuals with disabilities and the financial implications for relevant authorities.

Five million sterling has been allocated to seven local councils participating in the pilot program, with five councils starting in December 2010 and two more set to begin in spring 2011 These councils, known as Trailblazers, will provide eligible individuals with various support options through a streamlined process that requires only one assessment and review, regardless of the number of grants they qualify for Legislation mandates that Trailblazers inform individuals of their 'right to control' and connect them with local organizations offering independent advocacy and brokerage services Individuals are entitled to understand their eligible support levels, have autonomy over their choices, and determine the desired outcomes of their support Additionally, Trailblazers are responsible for creating detailed support plans that outline the individual's budget, expected outcomes, and purchased supports.

160 Department of Health (2007) Independence, Choice and Risk: a Guide to Supported Decision Making Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/ dh_074775.pdf, Accessed 15th February 2011.

161 Audit Commission (2010) Financial management of personal budgets: Challenges and opportunities for councils. October 2010.

162 Welfare Reform Act 2009 Available at http://www.legislation.gov.uk/ukpga/2009/24/contents, Accessed 15th February 2011.

163 Office for Disability Issues (nd) Right to Control: A guide for local delivery agencies Available at http://www.officefordisability.gov.uk/docs/wor/rtc/right-to-control-local-agencies.pdf Accessed 15th February 2011.

164 http://www.odi.gov.uk/odi-projects/right-to-control-trailblazers.php, Accessed 15th February 2011. which the budget will be managed or contributed to, and the process of review

Right to Control provides an opportunity for further refinement to the transformation of self-directed services for people with disabilities in the UK

This article will investigate the use of outcome-based performance indicators centered on individuals' top three personal goals, such as gardening, traveling to France, or utilizing library resources, as a more effective alternative to traditional metrics like the number of people receiving support or assessment wait times It will engage a diverse range of stakeholders through a web community that facilitates the sharing and support of experiences across pilot sites Furthermore, an extensive evaluation will be conducted through a feasibility study, which may implement either a matched area control design or a randomized control trial design.

The UK's commitment to personalising social care is exemplified by initiatives like Right to Control, which align with the 2007 concordat 'Putting People First: A Shared Vision and Commitment to the Transformation of Adult Social Care.' This transformation focuses on shifting from professionally-led organisations to self-direction, empowering individuals to enjoy greater choice and control over their lives Notably, these advancements are now being applied beyond adult social care, extending into NHS health services.

The Department of Health is set to pilot a direct payments system in healthcare, aiming to enhance support for individuals with disabilities The Green Paper, "Shaping the Future of Care Together," emphasizes the need for a new support system that is fair, simple, affordable, and personalized to individual needs, while ensuring national rights This initiative marks a significant period of transformation in the UK health and social care sector, offering valuable insights for other regions pursuing similar personalization efforts.

165 Bennett, T., Cattermole, M., & Sanderson, H., (2009) Outcome Focused Reviews Department of Health: Putting People First Delivery Available at http://www.puttingpeoplefirst.org.uk/_library/Resources/Personalisation/ Personalisation_advice/OutcomeFocusedReviews2.pdf, Accessed 15th February 2011.

166 Communities of Practice for Public Services at http://www.communities.idea.gov.uk/welcome.do, Accessed 15th February 2011.

167 Purdon, S., Sprowston, K., Geraghty, Ranasinghe, J., Ward, L., (2009) Making Choice and control a reality for disabled people Office for Disability Issues Available at http://www.odi.gov.uk/docs/wor/rtc/rtc-feasibility.pdf, Accessed 15th February 2011.

168 Department of Health (2010) Liberating the NHS: Legislative frameworks and the next steps Available at http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/ dh_122707.pdf, Accessed 15th February 2011.

169 HM Government (2009) Shaping the Future of Care Together (Green Paper) Available at http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/

DH_102338 ,Accessed 15th February 2011 and http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/documents/digitalasset/dh_102732.pdf, Accessed 15th February 2011.

UK: Key summary points

The UK adult social care system is experiencing a significant shift towards personalisation, allowing individuals to have their needs assessed uniformly This transformation ensures that people are informed about the share of their support costs that will be covered and enables them to utilize these funds flexibly, regardless of their location.

 A Common Assessment Framework is being considered to coordinate and reduce duplication of assessments conducted in social care and related services

Assessments are evolving from a traditional, professional-led model to a more individualized, person-centered approach This new method involves collaboration with caregivers, incorporates self-assessment tools, and allows for flexible timelines to better meet individual needs.

Local councils are required to provide eligible individuals with the choice to self-direct their services They are currently implementing resource allocation systems that focus on personal budgets for non-residential social care A goal has been established to have 30% of eligible individuals transitioned to personal budgets by March 2011.

 The determination of personal budgets uses a prospective model whereby an indicative budget is calculated prior to the development of a support plan

 Individuals may choose from a number of options regarding the manner in which their budget will be managed, including requesting the local council to arrange their support package, establishing an

Individual Service Fund where the budget is held in account, to self- commissioning of services via options such as direct payments

 Resource Allocation Systems (RAS) vary across local councils but typically apply either the ADASS or In Control model; in fact, the

ADASS model emanates from In Control

Evaluative data on the cost of personal budgets is considered inconsistent; however, some small-scale studies indicate that support package costs may decrease by around 10% These studies also highlight that the implementation of a new scheme tends to reveal unmet needs, which can lead to an increase in demand for services.

 The impact of transitioning to self-directed services for specialist disability providers has been pervasive

 Clear descriptors of support options, with respective costs, are now required by budget holders as they develop support plans

 New services have emerged including advocacy, brokerage and information services.

 Issues of governance, regulation, and the impact of self-direction on employees are currently under consideration.

 Investment in pilot initiatives such as Right to Control continue to refine the new system of personalised supports.

Implementing the nationwide introduction of individual budgets

Publicly Funded Disability Support Services

Disability services throughout the United States are largely funded via

Medicaid 170 is a federal grant-in-aid funding program overseen by the Centers for Medicare and Medicaid Services (CMS), part of the U.S Department of Health and Human Services While CMS sets federal guidelines for Medicaid funding, individual states are responsible for local implementation Notably, Medicaid serves as the largest purchaser of long-term services and supports for individuals with disabilities and older adults.

US, accounting for almost half of all expenditure on long-term services By

2006, Medicaid expenditure for long-term care services approached 100 billion 172

Historically, Medicaid funded institutional care for individuals with disabilities through the Intermediate Care Facility for People with Mental Retardation (ICF/MR) program, which saw significant growth from 1971 until the early 1990s, after which funding began to decline This shift has led to a substantial reallocation of Medicaid resources towards Home and Community Based Services (HCBS) waivers, introduced in 1981 under Section 1915(c) of the Social Security Act, allowing states to provide alternatives to institutional care by waiving certain funding criteria Currently, about 75% of Medicaid HCBS waiver expenditures support individuals with developmental disabilities requiring 24-hour assistance, while the remainder aids those with physical disabilities and older adults, benefiting an estimated 560,000 individuals with developmental disabilities.

Medicaid waivers nationwide 176,177 Individuals seeking HCBS funding from Medicaid must be assessed as requiring a level of support that would deem

170 Medicaid section of CMS website is available at https://www.cms.gov/home/medicaid.asp, Accessed 15th February 2011.

The Tax Equity and Fiscal Responsibility Act of 1982 (TEFRA) allows individuals with disabilities to bypass the 'low income' requirement for Medicaid services, provided their need for services extends beyond 30 days and they have a documented disability Although not primarily linked to disability, TEFRA has paved the way for families with higher incomes to access Medicaid waiver funding for their children with disabilities, as noted by Matthew Bogenschutz, a Post Doctoral Fellow at the University of Minnesota.

172 Thompson Healthcare Medicaid Long-Term Health Care Expenditure in FY 2006 Available at http://www2.ancor.org/issues/medicaid/09-13-07_Medstat_Memo.pdf, Accessed 15th February 2011.

173 Zaharia, R., & Moseley, C., (2008) State strategies for determining eligibility and level of care for ICF/MR and Waiver Program participants Rutgers Center for State Health Policy.

The 1915(c) Home and Community Based Medicaid waiver program, created by the Omnibus Budget Reconciliation Act of 1981, consolidated 57 federal grant programs into nine flexible state block grant programs, enabling states to tailor their program designs to better meet local needs.

According to Eiken and Burwell (2008), Medicaid Home and Community-Based Services (HCBS) waiver expenditures saw significant growth from FY 2002 to FY 2007, as individuals eligible for Intermediate Care Facilities for Individuals with Mental Retardation (ICF/MR) increasingly opted for community-based supports By the year 2000, spending on HCBS equaled that of ICF/MRs, and this trend of increased funding for community-based services has continued, surpassing ICF/MR expenditures by 2007.

$42.3 billion, comprised 41.7% of all Medicaid long-term services expenditure 180

Medicaid waivers play a crucial role in the provision of disability services across the United States, fostering flexible and innovative support options These waivers come in two main types: Support Waivers, with average annual allocations around $14,000, and Comprehensive Waivers, offering more significant funding of approximately $47,000 States have the authority to design their own waiver programs, adhering to CMS guidelines that require the waiver's per-person cost to be less than that of ICF/MR services However, states determine eligibility criteria, which can limit coverage to specific populations or regions Typically, eligibility for individuals with disabilities is assessed through an admissions process that evaluates diagnoses and the need for ICF/MR-level support, often using either categorical or functional criteria.

176 Kimmich, M., Agosta, J., Fortune, J., Smith, D., Melda, K., Auerbach., & Taub, S., (2009) Developing Individual Budgets and Reimbursement Levels using the Supports Intensity Scale Portland, Human Services Research Institute.

177 Lakin, C., Larson, S., Salmi, P., & Webster, A., (2010) Residential Services for Persons with Developmental Disabilities: Status and Trends through 2009 Research and Training Centre on Community Living, University of Minnesota Available at http://rtc.umn.edu/docs/risp2009.pdf, Accessed 15th February 2011.

178 Such as the need for 24 hour support and continuous and active treatment Department of Social & Health Services Washington State (2010) Assessment Findings for Persons with Developmental Disabilities served in institutional and community settings Washington Available at http://publications.rda.dshs.wa.gov/1399/ , Accessed 15th February 2011.

179 Walker, P., Hewitt, A., Bogenschutz, M., & Hall-Lande, J., (2009) Implementation of Consumer-Directed Services for Persons with Intellectual or Developmental Disabilities: A National Study Policy Brief, Vol 20 (1) University of Minnesota.

180 Crisp, S., Doty, P., Flanagan, S., & Smith, G (2010) Developing and Implementing Self-Direction Programs and Policies: a handbook Robert Wood Johnson Foundation Retrieved from http://www.rwjf.org/files/research/cchandbook090316.pdf, Accessed 15th February 2011.

The article by Braddock et al (2005) discusses public spending for developmental disabilities in the United States, highlighting the financial implications and outcomes of community services for individuals with intellectual disabilities Published in the book edited by Stancliffe and Lakin, this work emphasizes the importance of adequate funding and resource allocation to improve the quality of life for affected individuals The insights provided in this chapter are crucial for understanding the broader economic impact of supporting developmental disabilities within the community.

State strategies for assessing eligibility and care levels for ICF/MR and Waiver Program participants are crucial, as many individuals with developmental disabilities experience significant functional limitations that necessitate support beyond family care Currently, publicly funded developmental disability services in the United States reach only 20-25% of the estimated five million individuals in need.

Demand for publicly funded disability support services is increasing

The Development of Consumer-Directed Services

provide greater choice and control to those seeking services while ensuring that resources are allocated more efficiently and equitably to meet individual support needs 187

3.2 The Development of Consumer-Directed Services

The traditional funding model for disability services in the US, characterized by 'fixed dollar contracts' between state agencies and service providers, faces criticism for limiting market entry for new providers and hindering individuals with disabilities from changing their service providers This conventional approach is increasingly being supplanted by individualized services, which enhance choice and control for people with disabilities The concept of 'consumer-directed' services has gained prominence across the United States, reflecting a global shift towards more personalized support.

184 Smith, G., Agosta, J., & Daignault, J., (2008) Gap Analysis: Services and Supports for People with

Developmental Disabilities in Illinois Human Services Research Institute, Oregon.

The article by Braddock et al (2005) discusses public spending for developmental disabilities in the United States, highlighting the financial implications and resource allocation for community services It is featured in a comprehensive work edited by Stancliffe and Lakin, which examines the costs and outcomes associated with services for individuals with intellectual disabilities This research underscores the importance of effective funding strategies to improve the quality of life for people with developmental challenges.

186 McNichol, E & Lav, I (2008) State Budget Troubles Worsen Center on Budget and Policy Priorities

In Illinois, developmental disabilities are addressed through self-directed service options, emphasizing consumer-directed services Key components of these services include person-centered planning, individualized budgets, self-directed support, and a focus on quality assurance and improvement.

The shift towards consumer-directed services in the US was significantly driven by the advocacy of individuals and their families, grounded in the principles of normalization, self-determination, and person-centered supports.

In the 1970s, parents of individuals with severe intellectual disabilities in Woodlands, British Columbia, initiated a groundbreaking movement for individualized funding, advocating for the deinstitutionalization of their family members They argued for direct allocation of community living funds based on individual needs Simultaneously, individuals with physical disabilities in Berkeley, California, repurposed state funds for residential support to hire personal assistants in their communities These innovative models of individualized funding marked a global shift towards self-directed services, transforming the funding structure from state-funded services provided by organizations to direct funding for individuals, empowering them to either purchase services or hire personal assistants.

190 Department of Health & Human Services (2003, July) Independence Plus: A CMS initiative to promote self- direction Washington, DC: Author.

191 Wolfensberger, W., (1972) The principle of normalisation in human services Downsview, Ontario, Canada; National Institute on Mental Retardation.

192 Wehmeyer, M., & Stancliffe, R.J., (2003) Self-determination across the lifespan In M.L Wehmeyer, B.H Abery, D.E Mithaug & R.J Stancliffe (Eds), Theory in self-determination: Foundations for educational practice (pp 299-

193 O'Brien, J., & Lyle O'Brien, C., (Eds) (1998) A little book about person-centered planning Toronto, Ontario, Canada: Inclusion Press.

195 Dowson, S., & Salisbury, B., (1999) Individualised Funding: Emerging Policy Issues Roeher Institute Available at http://www.communitylivingbc.ca/what_we_do/innovation/pdf/IF_Policy_Implementation_issues.pdf, Accessed 15th February 2011.

196 Laragy, C., (2002) Individualised funding in disability services In T Eardley and B Bradbury, (Eds) Competing Visions: Referred Proceedings of the National Social Policy Conference 2001 (263-278) SPRC Report 1/02 Social Policy Research Centre, University of New South Wales Available at http://www.sprc.unsw.edu.au/media/File/NSPC01_Laragy.pdf, Accessed 15th February 2011.

197 Lord, J., & Hutchison, P., (2003) Individualised support and funding: building blocks for capacity building and inclusion Disability and Society, 18, (1), 71-86.

198 Dowson, S., & Salisbury, B., (1999) Individualised Funding: Emerging Policy Issues Roeher Institute Available at http://www.communitylivingbc.ca/what_we_do/innovation/pdf/IF_Policy_Implementation_issues.pdf, Accessed 15th February 2011.

Consumer-directed options in Medicaid Home and Community-Based Services (HCBS) began in the 1970s with the introduction of personal assistants in a few states Throughout the 1980s and 1990s, the availability of self-direction through Medicaid-funded programs expanded significantly across more states A key aspect of this development was a series of initiatives aimed at enhancing self-direction options for beneficiaries.

In the early 1990s, the Robert Wood Johnson Foundation funded 'Determination' demonstration projects, starting with an experimental initiative in New Hampshire in 1993 The goal was to empower individuals by implementing person-centered planning and individual budgets, allowing for greater control over their services Support Broker Services were created to help participants choose and manage their support packages, while 'fiscal intermediaries' were introduced to facilitate the employment of support staff These demonstrations provided early evidence that individualized funding increased choice and control for people with disabilities without incurring additional costs.

The Robert Wood Johnson Foundation, in collaboration with the US Department of Health and Human Services' Office of the Assistant Secretary for Planning and Evaluation (ASPE), supported consumer-directed services through the 'Cash and Counseling' demonstration programs Participants received a monthly cash amount to purchase essential goods or services, although most opted for an intermediary to manage their funds for a small fee Peer professionals were available to assist recipients in their decision-making However, the preference for intermediary management over direct cash payments has led some commentators to view the program as a demonstration of vouched expenditure rather than true consumer direction Each participating state has also rebranded the program over time, adopting names like 'Independent' to reflect their specific initiatives.

Choices' program in Arkansas and the 'Personal Preference' program in New Jersey 203 A comprehensive evaluation of the Cash and Counseling scheme

200 Head, M.J., & Conroy, J.W., (2005) Outcomes of self-determination in Michigan In Stancliffe, R.J., & Lakin, K.C., (2009) Costs and Outcomes of Community Services for People with Intellectual Disabilities (pp 219-240) Paul

H Brookes Publishing Co., Baltimore MD.

201 Benjamin, A., (2001) Consumer Directed Services at Home: A new model for persons with disabilities Health Affairs, 20 (6), 80-95.

202 Phillips, B., & Schneider, B., (2007) Commonalities and variations in the Cash and Counseling programs across the three demonstration States Health Services Research, 42 (1) 397-413.

203 Crisp, S., Doty, P., Flanagan, S., & Smith, G (2010) Developing and Implementing Self-Direction Programs and Policies: a handbook Robert Wood Johnson Foundation Retrieved from http://www.rwjf.org/files/research/cchandbook090316.pdf, Accessed 15th February 2011. highlighted positive benefits for both participants and the staff they employed 204

In 2002, CMS introduced the 'Independence Plus' program to promote consumer direction in long-term support, allowing states to provide individuals with self-directed options such as individual budgets and the ability to hire support staff To access Independence Plus funding, states must demonstrate to CMS that their budget determinations are based on reliable quantitative methods and are consistently applied By 2005, CMS updated the 1915(c) waiver application process to incorporate self-directed service options across all HCBS waiver programs, leading to the availability of over 90 Medicaid waivers by 2009.

32 states 206 , offer some form of consumer-directed services 207 Without doubt, self-direction is now an integral component of HCBS waiver programmes

States vary in their consumer-directed Medicaid HCBS programs, but several key elements are universally required For instance, individuals seeking support services must be presented with both self-directed and traditional service options, recognizing that not everyone prefers to self-direct Additionally, states must ensure a seamless transition for those moving from traditional to self-directed services, maintaining continuity in care Participants in self-direction programs are entitled to choose who will assist in planning their supports and have the freedom to select their service providers A federal mandate requires that these individuals undergo a personalized needs assessment by a qualified professional Most states allocate an individual budget from Medicaid HCBS funding for those who self-direct, allowing them to purchase preferred goods and services, often with the support of external financial management services.

204 Evaluation studies relating to Cash & Counseling can be found at http://aspe.hhs.gov/_/topic/topic.cfm? topic=Consumer%20Choice, Accessed 15th February 2011.

The study by Moseley, Gettings, and Cooper (2005) examines individual budgeting practices across the United States, highlighting the diverse approaches to financial management for people with intellectual disabilities This research is part of a broader analysis presented in the book "Costs and Outcomes of Community Services for People with Intellectual Disabilities," edited by Stancliffe and Lakin, which discusses the implications of community service costs and outcomes The findings contribute to understanding how personalized budgeting can enhance the quality of life for individuals with disabilities.

Calculating Individual Budgets

The term "individual budget" refers to a funding allocation for individuals with developmental disabilities, regardless of their ability to self-direct According to Medicaid, an individual budget is defined as funds managed by a participant when the state opts for self-directed personal assistance services This budget is created through a person-centered approach, tailored to meet the specific needs and preferences outlined in the participant's service plan.

The Centers for Medicare & Medicaid Services (CMS) do not mandate a specific methodology for states to calculate individual budgets, leading to significant variations across the United States Each state's individual budgeting process generally involves assessing individual needs, creating a plan to address those needs, establishing a budget amount, and finalizing an authorized spending plan When applying for Medicaid funding, states must detail how they will inform individuals and families about the budgeting methodology, the total budget value, applicable policies for budget management, and the process for budget adjustments CMS emphasizes that the methodology for determining individual budgets must be data-driven and consistently applied, requiring that budgets be based on actual cost and utilization data from reliable sources.

Various methodologies for determining individual budgets across the US exhibit varying degrees of compliance with CMS criteria In certain states, historical data, including Medicaid cost and utilization statistics, plays a crucial role in this process.

213 http://www.hcbs.org/moreInfo.php/doc/2038, Accessed 15th February 2011.

In their 2005 study, Moseley, Gettings, and Cooper explore individual budgeting practices across the United States, highlighting the importance of personalized financial management for individuals with intellectual disabilities This research is featured in the book "Costs and Outcomes of Community Services for People with Intellectual Disabilities," edited by Stancliffe and Lakin, which emphasizes the significance of tailored community services The findings contribute to understanding how effective budgeting can enhance the quality of life for this population.

The use of historical billing data from the Medicaid Management Information System (MMIS) for individual budgeting in state-financed developmental disabilities services in the United States offers a budget-neutral approach based on past costs However, this method has significant drawbacks, including the questionable reliability of historical data to predict future needs, challenges in accessing and interpreting the data, and an inability to assess unmet needs for new system entrants While the MMIS data meets the CMS criteria for actual cost and utilization information, its effectiveness for determining individual budgets is uncertain.

More sophisticated techniques are currently being introduced throughout the

In the US, mathematical formulas are employed to calculate individual budget allocations, necessitating extensive data collection that is both labor-intensive and time-consuming These methods analyze the correlation between various data points—such as regional per capita income, funding sources like state funding, utilization of support services, residential arrangements, and individual support needs assessed through standardized tools This comprehensive approach aims to ensure effective service provision by leveraging data from multiple states, including Wyoming, Nebraska, and South Dakota.

Montana has adopted the ICAP 219 as a standardized assessment tool to evaluate individual support needs, using various predictors to estimate costs associated with disability support services A multiple regression statistical equation is employed to determine how well these variables can forecast the state's reimbursement costs, with models that explain 70% or more of these costs deemed acceptable Ultimately, these predictive models inform the calculation of individual funding amounts based on each person's scores across the assessed variables.

The chapter titled "Predictors of Expenditures in Western States" by Campbell et al (2005) explores the financial implications of community services for individuals with intellectual disabilities Featured in the book "Costs and Outcomes of Community Services for People with Intellectual Disabilities," edited by Stancliffe and Lakin, this work provides valuable insights into the factors influencing expenditure patterns in various Western states The publication, by Paul H Brookes Publishing Co., emphasizes the importance of understanding these predictors to enhance the effectiveness and efficiency of community service funding.

219 ICAP: The Inventory for Client and Agency Planning is a 16 page booklet that examines adaptive and maladaptive behaviours Further information available at http://icaptool.com/, Accessed 15th February 2011.

The table, adapted from Campbell et al (2005), outlines the calculation of a monthly reimbursement rate of $2,635.65 for a hypothetical 57-year-old individual residing in a group home, attending an adult day center, and engaged in part-time supported employment Starting with a base amount of $1,694.12, various predictor variables adjust this rate Notably, the individual's 'Broad Independence Score' on the ICAP indicates a high level of independence, resulting in a deduction of $1,405.95 from the reimbursement rate.

Each month, an additional $1,075.33 is allocated to the budget to cover expenses related to the individual's residence, specifically in a group home setting This allocation allows for a personalized budget amount for each participant, tailored according to their responses to various predictor variables.

The calculations are designed to be 'budget neutral,' meaning the total predicted budget aligns perfectly with the current expenditure While this approach promotes fair resource distribution among recipients, it does not guarantee that the individual allocations are sufficient to meet their needs Consequently, there will be noticeable discrepancies between the predicted costs and the actual expenses of each support package However, these differences ultimately balance out within the overall budget, as the total underestimated expenditures will equal the total overestimated expenditures.

In a 2011 personal communication, Edward Campbell, PhD, discussed the findings from a study conducted by Campbell et al (2005), which identified key predictors of expenditures in Western States This research was included in the compilation edited by Stancliffe and Lakin, focusing on the costs and outcomes of community services for individuals with intellectual disabilities.

H Brookes Publishing Co., Baltimore MD (175-201).

221 Campbell, E.M., (2008) The Statistical Approach to Generating Individual Budgets SIS Leadership Forum, 27 May 2008 Available at http://www.siswebsite.org/galleries/default-file/CampbellResourceallocation.pdf, Accessed 15th February 2011.

Table 1: Spreadsheet to calculate monthly reimbursement rates.

Broad Independence Index -3.09680 454 -1,405.95 General Maladaptive Index -6,28330 -22 138.23

Need for doctor/nurse? 43.78951 Yes 43.79

The DOORS Project, Wyoming

The DOORS project in Wyoming is a prominent example of an individual level model that emerged during the state's deinstitutionalization efforts in the 1990s This initiative led to the development of community-based services funded through Medicaid waivers, necessitating a shift from traditional funding methods that relied on rate schedules and cost caps to a system focused on individual support needs Initially, Wyoming attempted to implement a funding model inspired by Utah's ICAP, which classified individuals into five levels based on staffing ratios and assigned daily rates However, this approach failed to accurately reflect individual needs, prompting the creation of a new DOORS model designed to generate personalized budgets while adhering to the overall funding limitations.

The DOORS model seeks to transform disability funding in Wyoming by calculating funding on an individual basis rather than assigning fixed levels This approach allows individuals to choose their preferred services and freely select their service providers, utilizing open contracting to facilitate provider entry The model, initiated in 2003, employs ICAP scores, service utilization, and various other factors to determine individual budgets, with initial calculations predicting 75% of reimbursement costs based on 22 variables To maintain accuracy, support needs assessments are conducted every three years, with findings integrated into updated models While changes are typically minimal, special provisions are made for individuals with extreme support needs, who can appeal for additional funding through the State Level of Care Committee (SLOCC).

The DOORS Project exemplifies the creation of Individual-based Budget Allocations (IBAs), which can be compared to Level-based Budget Allocations (LBAs) Both models focus on systematic analysis for resource allocation, highlighting their distinct approaches to budgeting.

The study by Fortune et al (2005) explores the connection between individual support needs and associated costs, highlighting the distinction between Individual Budgets (IBAs) and Level-Based Allocations (LBAs) While IBAs provide tailored funding for each person, LBAs categorize individuals into specific allocation levels based on a dataset, typically focusing on residential and day services Each level comprises individuals receiving the same funding allocation, unless further distinctions are applied within those levels.

The ReBar Project, Oregon

The ReBar project in Oregon exemplifies the shift from traditional to level-based funding options, reflecting a demographic profile similar to Ireland's 3.5 million residents across 36 counties State funding supports community-based services managed locally, with county governments providing case management and contracting service delivery A comprehensive waiver currently assists around 5,500 individuals with developmental disabilities needing 24-hour support Previously, Oregon lacked individualized data on support needs and service costs The ReBar project is now transforming services for three core groups: those in group homes, supported living, and those receiving employment and community inclusion supports This initiative aims to replace a 25-year-old 'slot-based' system with individualized budgets for 3,500 individuals, standardized service rates, and a quality management system Funded for five years by CMS through its System Transformation Grant, ReBar is set to enhance service delivery and efficiency in Oregon.

Institute 225 (HSRI) provide technical assistance to the project

Pilot data has been collected from a representative sample of 400 individuals supported by 75 provider organizations across 11 counties The Supports Intensity Scale (SIS), developed by the American Association on Intellectual and Developmental Disabilities, has been chosen as the standardized assessment tool to evaluate individual support needs Additionally, supplementary demographic data influencing costs, such as medical needs and community crime risk factors, has also been gathered for the participants.

Developmental Disabilities in Illinois Human Services Research Institute, Oregon.

224 ReBar Project Website is available at http://www.oregon.gov/DHS/dd/rebar/about_us.shtml, Accessed 15th February 2011.

225 Human Services Research Institute Website is available at http://www.hsri.org/, Accessed 15th February 2011.

226 Supports Intensity Scale Website is available at http://www.aaidd.org/content_918.cfm?navID, Accessed 15th February 2011. and whether the person engages in behaviours that challenge 227 In addition to these demographic data, information for the pilot was also gathered on behalf of each individual using the Individual Service Survey (ISS) 228 , an online questionnaire that provider organisations complete detailing the support services used by each participant, whether group home supports, independent living supports or employment and community inclusion support services The group home residential section of the questionnaire, for example, seeks detailed information on the number of co-residents in a dwelling, the number of direct care staff, the staffing hours, the day services provided, etc For the supported living services section, information is requested on the number of direct care staff support hours apportioned to each participant The third area of data gathering in the ReBar pilot, in addition to the SIS and ISS, is the Provider Cost Survey (PCS) 229 This survey, developed by Burns & Associates, gathers financial data from providers for a specific fiscal year Organisations are required to provide considerable financial data, sufficient for the purpose that services can be validly costed to determine reimbursement rates, rate models and rate setting methodologies The collection of data is due for completion in mid 2011, having commenced in 2008 Assessment units were established in ten offices statewide specifically for the purposes of completing the SIS assessments Each assessor was charged with completing a total of eight assessments per month Simultaneous to the data gathering phase, policies and procedures are being developed regarding interview guidelines, person centred planning, rate setting guidelines, governance of individual budgets etc.

Within 30 days of completing an assessment, individuals participating in ReBar are informed of a level of funding, termed a 'tier', which is determined to best represent their needs in their particular residential setting 230 There are six tiers, each of which contains several rates that reflect appropriate funding for a person of a given level of support need, adjusted by the person's residential circumstances As with most models, exceptional support needs are addressed outside the established rates The table below presents the six tiers used for persons who are resident in group home settings Each tier represents a level of support need, from lower to higher (1-6) Each tier is further classified by the number of persons who co-reside in the person's dwelling This example, devised in 2008, presents monthly individual budget amounts ranging from $2,777 to $15,011 The budget amount represents the maximum monthly amount the person's residential provider can bill for supports and services provided throughout the month

227 Supplemental questions to SIS are available at http://www.oregon.gov/DHS/dd/rebar/docs/supp_ques-

228 Individual Services Survey (ISS) are available at http://www.oregon.gov/DHS/dd/rebar/docs/iss_inst.pdf,

229 Provider Cost Survey (PCS) is available at http://www.oregon.gov/DHS/dd/rebar/docs/pcs_inst.pdf, Accessed 15th February 2011.

230 Oregon Department of Human Services (2008) ReBar Program Tools: Assessment and Individual Budget Amount (IBA) Implementation Available at http://www.oregon.gov/DHS/dd/rebar/docs/cntyprov_prep.pdf, Accessed 15th February 2011.

The ReBar Project continues its progress and is expected, by June 2011, to have completed assessments and finalised determinations on budgets for all 2,500 residents in group home settings

Table 2: Funding tiers employed by ReBar for people on Comprehensive

Waiver who are resident in Group Home Settings.

IBA Tier Tier 1 Tier 2 Tier 3 Tier 4 Tier 5 Tier 6

Table taken from Oregon Department of Human Services (2008) ReBar Program Tools: Assessment and Individual Budget Amount (IBA) Implementation Available at http://www.oregon.gov/DHS/dd/rebar/docs/cntyprov_prep.pdf, Accessed 16th February 2011.

Rate Setting for Licensed State Providers

In developing consumer-directed services and individual budgets, rate setting is a crucial factor Unlike traditional block funding, where costs are negotiated between the state and service providers for services like workshops or group homes, the new model necessitates detailed estimates of individual support service costs It is essential that the rate-determination processes align individual budgets with reimbursement rates based on specific support needs.

CMS mandates that standard reimbursement rates for state-licensed or certified services must be uniformly applied throughout the state Any variations in costs must be justified with a transparent rationale that is clearly communicated to potential consumers.

231 Oregon Department of Human Services (2002) Rate Setting and the Purchase of Self-Directed Support Services from State Licensed or Certified Provider Organisations Available at http://www.oregon.gov/DHS/spd/provtools/dd/rate_manual/cover_toc.pdf, Accessed 15th February 2011.

To receive reimbursement, state licensed or certified disability providers must submit an itemized bill detailing the services rendered over a specified period, typically monthly This bill must include specific information about the services provided, such as dates and locations, and can only reflect services that were actually utilized, excluding any non-attendance Billing units vary based on the type of service, with community inclusion billed hourly, respite billed per half day, and transportation billed per mile Compliance with Medicaid regulations is essential, requiring that costs align with customary charges, be cost-effective, well-documented, and not duplicate payment for services already covered Additionally, Medicaid serves as the last payer, covering only services not eligible for reimbursement from other sources Payments are generally processed by a brokerage organization acting as a fiscal agent, with individuals having the option to manage their payment authorizations or delegate this responsibility to the brokerage service.

To determine reimbursement rates, states must distinguish between allowable (e.g staffing) and non-allowable costs (e.g pre-service staff training)

To establish estimated rates for services, actual expenditures for existing offerings and projected costs for new ones must be assessed, with updates to projected costs required within six months Typically, the billing rate for a unit of service remains effective for one year and must be publicly accessible, often displayed online For instance, Oregon's Department of Human Services provides rate tables for support services and in-home supports Additionally, states must implement accounting and billing systems capable of handling diverse payment structures and conduct regular reviews to ensure rates accurately reflect service provision costs.

232 Minnesota Department of Human Services - Rate Setting Methodologies Project Available at http://www.dhs.state.mn.us/main/idcplg?

IdcService=GET_DYNAMIC_CONVERSION&RevisionSelectionMethod=LatestReleased&dDocName=dhs16_14465

233 Oregon Department of Human Services (2002) Rate Setting and the Purchase of Self-Directed Support Services from State Licensed or Certified Provider Organisations Available at http://www.oregon.gov/DHS/spd/provtools/dd/rate_manual/cover_toc.pdf, Accessed 15th February 2011.

234 Oregon Department of Human Services (2010) A Roadmap to Support Services Available at http://ocdd.org/images/uploads/Roadmap_to_Support_Services_4-30.pdf, Accessed 15th February 2011.

235 Rate Setting and Policy Tools, Oregon Department of Human Services, Resources for Seniors and People with Disabilities Available at http://www.oregon.gov/DHS/spd/provtools/dd/rate_manual/home.shtml, Accessed 15th February 2011.

Standardised Assessment Tools

The stipulation by CMS that states must implement a uniform rate-setting methodology, and their requirement that the determination of individual budgets is 'data based' and applied in a consistent manner, has led many states to seek a standardised assessment of support need tool that will ensure payment rates accurately reflect each person's support needs 236 Some states have elected to design their own assessment tool These tools typically have face validity, that is, they appear on face value to measure support needs, however, there is typically little psychometric evidence of these claims In contrast, other states have adopted to select a standardised assessment tool of support need which may then be adapted for the purpose of resource allocation Standardised measures of assessment include the ICAP and SIS as used in the DOORS and ReBar projects These standardised measures are psychometrically robust and avoid any speculation that the findings may be subjective

The HSRI conducted a thorough comparison of assessment tools to assist the Colorado Division of Developmental Disabilities in selecting the most suitable measure This evaluation included ten assessments, both state-developed and standardized, analyzed across key variables such as scope, psychometrics, administration time, training, costs, and ongoing technical support Among these, the ICAP, SIS, and CAT (a Colorado state measure) were examined in detail due to their significant potential Ultimately, the SIS was identified as the most appropriate tool for supporting rate determination and funding allocations in Colorado A summary of these assessments can be found in Appendix B.

The SIS offers valuable insights for Colorado and other regions seeking reliable measures for resource allocation based on support needs It consists of 86 items divided into three sections: the first assesses the frequency, duration, and type of support required; the second evaluates the individual's protection and advocacy capabilities; and the third focuses on exceptional medical and behavioral needs This comprehensive approach ensures effective identification and allocation of necessary resources.

As of 2010, the Supports Intensity Scale (SIS) was utilized in 12 states across the United States as a tool for disability service planning, with an additional six states beginning its implementation Globally, the SIS is accessible in 14 countries and has been translated into 12 native languages Currently, field testing is in progress for a children's version designed for individuals aged 5 to 16 years.

236 Smith, G., & Fortune , J., (2006) Assessment Instruments and Community Services Rate Determination: Review and Analysis HSRI, Oregon.

The article outlines ten key measures used for assessing client and agency planning, including the Inventory for Client and Agency Planning (ICAP), Developmental Disabilities Profile (DDP), and Supports Intensity Scale (SIS) Additional tools mentioned are the North Carolina Support Needs Assessment Profile (NC-SNAP), Montana Resource Allocation Protocol (MONA), Maryland Individual Indicator Rating Scale, Connecticut Level of Need Assessment Tool, Oregon Basic Supplement Criteria Inventory, and Imagine! CSAT These instruments collectively aid in evaluating support needs and resource allocation for individuals with developmental disabilities.

(Comprehensive Services Assessment Tool)/Colorado Assessment Tool (CAT).

Looking ahead

Consumer-directed options have become integral to the support services available for individuals with disabilities in the United States While these services have primarily focused on developmental disabilities, the Deficit Reduction Act has introduced new state-funded self-directed service options, expanding Home and Community-Based Services (HCBS) eligibility to individuals previously excluded, including those with mental health challenges Additionally, veterans are recognized as a significant group that can benefit from self-direction, with the Veterans Administration showing interest in exploring these options for both short-term and long-term recovery needs.

USA: Key summary points

 Community-based disability services throughout the US are largely funded by federal and state-matched funding under the Medicaid Home and Community Based Services (HCBS) Waiver Program.

 Increasing demand for disability services, at a time of budgetary shortfalls, is placing pressure on states to use their funding in more efficient and equitable ways.

 Consumer-directed services have a long tradition throughout the US, being pioneered initially by advocates and more recently being made available across all Medicaid HCBS programmes.

Individual budgets play a crucial role in consumer-directed programs, with states employing various methodologies to establish these budgets However, they are federally mandated to utilize a data-driven approach that is applied consistently throughout the state.

 Common methodologies to calculate individual budgets include the use of historical cost and service utilisation data or the use of more sophisticated mathematical formula models.

Mathematical formula models can generate Individual-based Budget Allocations (IBAs), assigning a distinct budget to each individual, or Level-based Budget Allocations (LBAs), where individuals are categorized into levels of allocation with more specific distinctions within each level.

238 American Association on Intellectual and Developmental Disabilities (2010) Newsletter, April 2010, Vol 10 (4) Available at http://aaidd.org/content_3735.cfm, Accessed 15th February 2011.

 The DOORS project in Wyoming and ReBar project in Oregon provide useful examples of IBA and LBA models

State-licensed or certified disability providers are required by federal law to use standardized reimbursement rates for their services These rates must be clearly communicated to potential users and detailed in billing statements Typically, payments are made by a brokerage service to the provider, based on instructions from the budget holder.

 Federal requirements for data-based methods to determine individual budgets have led many states to use standardised and psychometrically tested measures of support need.

A thorough comparison of various support need assessments revealed that the Supports Intensity Scale (SIS) is the most effective tool available The SIS is widely utilized in both the United States and internationally, highlighting its significance in assessing support needs.

Consumer-directed options, traditionally accessible to individuals with developmental disabilities in the US, can potentially be expanded to include those facing mental health challenges and veterans, both of whom have shown a keen interest in this model of service delivery.

Allocating Resources on the Basis of Individual Support Needs

The Supports Model

The shift towards an allocation system based on individual needs is largely motivated by the inherent inequities of traditional block funding models This approach ensures that individuals with lesser needs receive minimal support, while those with greater needs are allocated more resources, promoting a fairer distribution of assistance.

Historically, individuals with disabilities have been categorized by diagnostic labels such as 'intellectual disability', 'visual impairment', or 'cerebral palsy', leading to referrals to specialized services tailored to these classifications This traditional approach can result in inappropriate placements for some individuals while neglecting the needs of others Consequently, eligibility for services continues to be based on diagnostic categories, causing many people with disabilities to feel pressured to conform to existing programs.

A significant reclassification of individuals with intellectual disabilities by the American Association on Mental Retardation (now known as the American Association on Intellectual and Developmental Disabilities, or AAIDD) initiated a paradigm shift, leading to profound implications for people with disabilities worldwide This updated definition of intellectual disability continues to emphasize the importance of IQ, alongside the presence of adaptive behavior limitations and an onset occurring before adulthood.

After 18 years, the classification system was controversially changed from one based on IQ levels to a model that categorizes individuals by the intensity of supports they require This new approach considers the settings for support, the resources and time needed, and the degree of intrusiveness involved Consequently, the focus of assessment shifted from determining eligibility for services based on disability levels to addressing the gap between environmental demands and individual capabilities.

While definitions vary, a well-established definition identifies supports as

"resources and strategies that aim to promote the development, education, interests, and personal well-being of an individual and that enhance human

264 Fortune, J., Agosta, J., & Smith, D (2009) Key issues to consider when implementing individual or level-based budget allocations Presentation to the National Disability Authority, Dublin December 8th, 2009.

265 Llewellyn, G., Parmenter, T., Chan, J., Riches, V., & Hindmarsh, G., (2005) I-CAN Instrument to classify support needs for people with disability Centre for Developmental Disability Studies, University of Sydney.

266 Parmenter, T.R., & Riches, V.C., (2002) Pathways 6 Conference 2002 Proceedings Assessment and

267 American Association on Mental Retardation (AAMR) (1992) Mental Retardation: definition, classification and systems of supports, 9th Ed Washington, DC: American Association on Mental Retardation.

268 Luchasson, R., & Reeve, A., (2011) Naming, defining, and classifying in mental retardation Mental Retardation,

269 Riches, V.C., (2003) Classification of support needs in a residential setting Journal of Intellectual and

Developmental disabilities encompass a range of conditions that affect individuals' functioning, necessitating varying levels of support tailored to their unique needs These supports serve as a crucial link between an individual's current capabilities and their desired goals, aiming to facilitate participation in typical life activities within mainstream environments Importantly, the focus of providing support is not to 'fix' or 'compensate' for limitations, but rather to enhance the overall quality of life Effective support planning should prioritize personal preferences and available resources to ensure that each individual can achieve their fullest potential.

The shift in the supports paradigm has significantly transformed professional practices in the disability sector, leading to the assessment of support needs as a foundation for personalized planning This approach is now recognized internationally for guiding system planning and resource allocation The paradigm has sparked global discussions on fair funding distribution within disability services, particularly as organizations face increasing demands on limited resources Consequently, service providers are pursuing more effective and equitable planning and reimbursement systems Individualized funding models, tailored to specific support needs, are emerging as a logical and fair method for allocating public funds, establishing themselves as a fundamental aspect of modern disability services.

The article by Schalock et al (2010) focuses on the development and application of a quality of life model specifically for individuals with intellectual disabilities It is featured in the book "Quality of Life: Theory and Implementation," edited by R Kober, and spans pages 17 to 32 This work emphasizes the importance of measuring and enhancing the quality of life for people with intellectual disabilities through practical frameworks and methodologies.

271 Thompson, J.R., Bradley, V., Buntinx, W., Schalock, R., et al (2009) Conceptualising Supports and the Support Needs of People with Intellectual Disability Intellectual and Developmental Disabilities, 47, 2, 135-146.

272 Buntinx, W.H.E., & Schalock, R.L., (2010) Models of Disability, Quality of Life, and Individualised Supports: Implications for Professional Practice in Intellectual Disability Journal of Policy and Practice in Intellectual

273 Buntinx, W.H.E., & Schalock, R.L., (2010) Models of Disability, Quality of Life, and Individualised Supports: Implications for Professional Practice in Intellectual Disability Journal of Policy and Practice in Intellectual

274 Guscia, R., Harries, J., Kirby, N., Nettlebeck, T., & Talpin, J., (2006) Construct and criterion validities of the Service Need Assessment Profile (SNAP): A measure of support for people with disabilities Journal of Intellectual and Developmental Disabilities, 31, 3, 148-155.

275 Stancliffe, R.J., & Lakin, K.C (Eds) (2005) Costs and outcomes of community services for people with intellectual disabilities Baltimore: Paul H Brookes Publishing.

276 Riches, V.C., Parmenter, T.R., Llewellyn, G., Hindmarsh, G., & Chan, J., (2009) I-CAN: A new instrument to classify support needs for people with disability: Part 1 Journal of Applied Research in Intellectual Disabilities, 22, 326-339.

277 Lakin, K.C., & Stancliffe, R.J., (2005) Expenditures and Outcomes In Stancliffe, R.J., & Lakin, K.C., (2005) Costs and Outcomes of Community Services for People with Intellectual Disabilities (pp 313-337) Paul H Brookes Publishing Co., Baltimore MD

278 KPMG (2009) The Contemporary Disability Service System, Victorian Department of Human Services Available at http://www.nda.gov.au/cproot/553/2/Contemporary%20Disability%20Service%20System%20Summary

%20Report.pdf, Accessed 15th February 2011.

The AAIDD support model serves as a comprehensive framework for assessing, planning, and monitoring individualized support needs It begins with a thorough consultation to identify the individual's personal preferences and interests, with person-centred planning (PCP) recommended as the best approach for this process Following this, the assessment of support needs can be conducted through self-reports or objective indicators, utilizing various methodologies such as standardized assessments, interviews, or direct observations The assessment outcomes should focus on the specific support required by the individual, particularly those aligned with the priorities identified during planning Importantly, the assessment emphasizes the individual's support needs rather than their competencies, concentrating on the necessary supports for achieving desired outcomes rather than perceived limitations due to disability.

The development of an Individual Plan follows the initial steps, focusing on specific and personalized outcomes that an individual aims to achieve within a set timeframe The fourth step involves the continuous and systematic monitoring of the plan's implementation Finally, the process concludes with an evaluation of the individual's success in achieving their personal outcomes Collecting aggregate data on these outcomes serves as a crucial metric for service providers and state systems to assess whether they are effectively meeting the needs of individuals.

Table 3: A process for assessing, planning, monitoring and evaluating

280 Thompson, J.R., Bradley, V., Buntinx, W., Schalock, R., et al (2009) Conceptualising Supports and the Support

Needs of People with Intellectual Disability Intellectual and Developmental Disabilities, 47, 2, 135-146. individualised supports (Thompson et al., 2009) 281

Identify Desired Life Experiences and

Component 3: Develop and Implement the Individualised Plan

(use results from 1 and 2 to prioritise preferences and identify personal outcomes and needed supports - identify supports that are needed and that are currently used - develop an individual plan)

(monitor the extent to which the plan was implemented)

(evaluate the extent to which personal outcomes have been enhanced)

Calculating an individual funding allocation based on support need

Individualised funding refers to resources allocated according to specific needs identified during the planning process, aimed at creating flexible and responsive support systems These allocations can cover all or part of the authorized services an individual is entitled to receive, empowering them to use the funds for services that align with their support plan The determination of these allocations should stem from comprehensive individual assessments, ensuring they are adaptable to any changes in the individual’s support needs or service plan.

Irrespective of the specific methodology employed to calculate budgets based on individual support needs, most models can be classified as either

'prospective' or 'retrospective' in nature 285 The difference is essentially the

281 Table is adapted from Thompson, J.R., Bradley, V., Buntinx, W., Schalock, R., et al (2009) Conceptualising Supports and the Support Needs of People with Intellectual Disability Intellectual and Developmental Disabilities,

282 KPMG (2009) The Contemporary Disability Service System, Victorian Department of Human Services Available at http://www.nda.gov.au/cproot/553/2/Contemporary%20Disability%20Service%20System%20Summary

%20Report.pdf, Accessed 15th February 2011.

283 Moseley, C., (2005) Individual budgeting in state-financed developmental disabilities services in the United States Journal of Intellectual & Developmental Disability, 30 (3) 165-170.

In the article "Having it Your Way: Understanding State Individual Budgeting Strategies" by Moseley, Gettings, and Cooper (2002), the authors discuss the process of determining an individual's budget allocation for developmental services This process involves prospective methods that establish funding amounts before the creation of support plans, allowing individuals to know their available funds upfront These methods rely on statistical modeling to analyze various factors influencing funding needs, such as the level of support required, service utilization, demographics, geographic location, and local economic conditions, using data from representative samples.

Mathematical formulas are utilized to establish the predictive relationship between various variables and costs, leading to the term 'statistical models.' Notable examples include the In Control RAS, the DOORS project in Wyoming, and the ReBar project in Oregon, all of which utilize a prospective design for constructing resource models While these prospective models ensure fair distribution of existing resources, it's crucial to recognize that the cost data is derived from fixed funding amounts Consequently, the adequacy of each individual's allocation relies on the overall size and proportional sufficiency of the existing fund.

Retrospective approaches utilize a subjective process for determining individualized funding allocations, relying on person-centered planning during the planning phase For instance, New Hampshire employs a retrospective methodology where an Individualized Service Plan (ISP) is developed collaboratively between the individual, their family, and an Account Manager This ISP outlines the chosen supports from options provided by the Account Manager, and the agreed-upon support package is then costed based on an hourly fee-for-service reimbursement rate.

In Hampshire, the total cost of an individual's allocation consists of three key components: the direct cost of support, a 10% general management fee, and a service fee for case management The Account Manager plays a crucial role by offering continuous support in budget management and generating monthly update reports Unlike the prospective methodology mentioned earlier, retrospective models ensure adequate funding allocation to effectively meet an individual's needs.

Retrospective models do not, however, ensure that the overall fixed funding amount is allocated equitably across all those requiring supports That is,

286 Moseley, C., (2005) Individual budgeting in state-financed developmental disabilities services in the United States Journal of Intellectual & Developmental Disability, 30 (3) 165-170.

The article by Severance and Campbell (2008) explores the concept of funding formulas, specifically focusing on individual resource allocation in Louisiana It is featured in a compilation edited by Schalock, Thompson, and Tasse, which addresses various issues and approaches related to resource allocation and the Supports Intensity Scale This work contributes to understanding how funding mechanisms can effectively support individuals with intellectual and developmental disabilities.

288 Reinhard, S.C., Crisp, S., Bemis, A., & Huhtala, N., (2005) Participant-Centered Planning and Individual Budgeting New Brunswick, New Jersey: Rutgers Center for State Health Policy.

289 Crisp, S., Doty, P., Flanagan, S., & Smith, G (2010) Developing and Implementing Self-Direction Programs and Policies: a handbook Robert Wood Johnson Foundation Retrieved from http://www.rwjf.org/files/research/cchandbook090316.pdf, Accessed 15th February 2011. where resources are low, those who receive an allocation sufficient to meet their needs may receive larger proportions of the overall fixed funding amount than would be provided under a prospective methodology This methodology may thus inadvertently leave insufficient funds for others of similar need; a situation which can result in extensive waiting lists for services 290

In both the US and the UK, the prospective methodology is the prevailing model for determining individual budgets The Centers for Medicare and Medicaid Services define an individual budget amount as a pre-determined sum allocated by the state for waiver services Likewise, UK local councils are encouraged to communicate indicative personal budgets to individuals early in the self-directing process.

Table is presented with kind permission of Charles R Moseley: from Moseley, C., (2008) State Resource Allocation Strategies and Challenges Presentation to Maryland Developmental Disabilities Administration, January 14th, 2008.

Whether prospective or retrospective in nature, an emerging consensus has developed regarding the core characteristics of individual funding

In their 2008 work, Severance and Campbell explore the concept of funding formulas, specifically focusing on individual resource allocation in Louisiana This study is part of a broader discussion presented in a compilation edited by Schalock, Thompson, and Tasse, which addresses resource allocation and the Supports Intensity Scale The insights provided in this research contribute to understanding how resources can be effectively distributed to support individuals with intellectual and developmental disabilities.

291 Agosta, J., Fortune, J., Kimmich, M., Melda, K., & Smith, D., (2009) Information Brief: Using Individual Budget Allocations to Support People with Intellectual and Developmental Disabilities Human Services Research Institute.

Retrospecti Prospecti ve ve Complete PCP

Services Support to Goals PCP methodologies In addition to being logical, reasonable and easily understood, methodologies should comprise the following 'essential' elements: 293,294

Table 4: Essential Elements of Determining Individualised Funding

Accurate Methods should reflect valid assessments and provide sufficient funding amounts to meet individual need.

Consistent Methods should be applied consistently across programmes, locations and individuals.

Reliable Methods should produce consistent results over time when repeated.

Equitable methods must guarantee that individuals with comparable needs and circumstances receive similar support, whether they utilize traditional services or choose to self-direct their care It is essential to maintain a fair balance between the costs associated with traditional services and the budget allocated for self-directed options, ensuring that all individuals are treated justly.

Flexible Methods should permit changes to the budget to be made easily and in a timely fashion to accommodate changes in the individual's circumstances or choice.

Transparen t Methods should be open to public inspection.

Assessments of individual support need used in the determination of

Choosing the right assessment for individualized support needs is crucial for meeting established criteria Although new tools may seem to address local requirements, their insufficient psychometric validity can make them an unsuitable option for achieving essential standards of accuracy, consistency, reliability, equity, and flexibility.

293 This consensus has emerged from research conducted by the National Association of State Directors of

Developmental Disabilities Services (NASDDDS), the Cash & Counseling Demonstration and Evaluation (CCDE) and the Centers for Medicare & Medicaid Services (CMMS) according to Crisp et al., (2010).

294 Moseley, C E., Gettings, R M., & Cooper, R (2002) Having it your way: Understanding state individual budgeting strategies Washington, DC: National Association of State Directors of Developmental Disabilities Services.

295 Crisp, S., Doty, P., Flanagan, S., & Smith, G (2010) Developing and Implementing Self-Direction Programs and Policies: a handbook Robert Wood Johnson Foundation Retrieved from http://www.rwjf.org/files/research/cchandbook090316.pdf, Accessed 15th February 2011. transparency across a large population group In contrast, standardised measures of support need, while perhaps not initially developed for the purposes of resource allocation, are likely to provide a more robust measure from which budgets can be determined 296

This article reviews three potential measures for determining individual budgets at a national level in Ireland, specifically for people with disabilities These measures were chosen due to their previous application in budget assessments, their development for national use, and their strong psychometric properties, making them suitable for a diverse range of disabilities However, while each measure meets some of these criteria, none fully satisfies all of them, highlighting the advantages and disadvantages associated with each option.

 Instrument for the Classification and Assessment of Support Need (I-CAN)

In Control RAS 5

In Control is a UK national charity founded in 2003, dedicated to reforming the social care system in England through self-directed support The organization's mission is to foster a fairer society, ensuring that everyone requiring additional assistance has the right, responsibility, and freedom to manage their own support.

In Control has devised a seven stage process of self-direction whereby individuals

 find out how much money they will receive for their supports

 get their plan agreed by a funding body

296 Smith, G., & Fortune , J., (2006) Assessment Instruments and Community Services Rate Determination: Review and Analysis HSRI, Oregon.

297 In Control, About Us Available at http://www.in-control.org.uk/about-us.aspx Accessed 14 March 2011.

 organise how their money will be managed with a level of choice at their discretion

 decide how their supports will be arranged

 monitor their supports and adapt as appropriate 298

The In Control system of self-directed support revolutionized the UK social care landscape by introducing personal budgets, which have become widely adopted by local councils in England From just 60 individuals utilizing personal budgets in 2006, this figure surged to 30,000 across 75 local authorities by 2009 Notably, over half of the recipients were older adults, nearly a quarter had physical disabilities, about one in five had intellectual disabilities, and 6% experienced mental health challenges The In Control model successfully meets the criteria for national implementation and effectively serves a diverse range of individuals with various disabilities.

In Control's Resource Allocation System (RAS) provides individuals with an 'indicative' allocation, indicating the funding they can expect in their personal budget The primary goal of RAS is to ensure that resources are distributed fairly among individuals with similar needs and circumstances, allowing them to receive comparable support Additionally, RAS not only determines the indicative budget but also outlines the specific outcomes that the allocated supports should aim to achieve This aligns with the self-directed support model promoted by In Control, which focuses on the personal outcomes that individuals attain rather than solely on the funding they receive.

Control's RAS utilizes a self-assessment questionnaire (SAQ) to evaluate how disabilities affect individuals' daily lives, as illustrated in Appendix A 301 This approach signifies a significant shift from the complex, professional-led assessments traditionally used in adult social care in England Unlike previous methods, the SAQ empowers individuals to assess their own needs, focusing on the personal outcomes and support required for everyday living, including individual aspirations and goals.

298 Duffy, S., & Waters, J (2008) A 10 Step Plan for Reforming Social Care Funding Personal Thoughts for Discussion http://www.in-control.org.uk/media/54582/ras5%20-%20step%20plan%202%20.pdf Accessed 14 March 2011.

299 Evaluation of In Control Third (2008-2009) Phase Available at http://www.in-control.org.uk/publications/reports- and-discussion-papers.aspx Accessed 14 March 2011.

300 http://www.in-control.org.uk/site/INCO/Templates/General.aspx?pageid74&cc=GB.

The 301 Self-assessment questionnaire, generously provided by John Waters, Technical Director at In Control, emphasizes the importance of enhancing individual choice and control over decision-making Unlike traditional assessments that primarily focus on identifying available services, such as respite care, this approach prioritizes personal preferences and needs.

In Control's SAQ varies somewhat depending on local need, however the typical domains examined include

 Practical Aspects of Daily Living

 Staying Safe and Taking Risks

 Support from Friends, Family and Community

Each domain within the assessment framework outlines specific outcomes, such as "to be clean and dressed" in the Meeting Personal Care Needs domain and "to be able to access my community" in the Relationships and Social Inclusion domain These domains consist of various statements, each associated with a point allocation based on the level of need For instance, in the Eating and Drinking domain, statements range from "I need lots of help to eat and drink," which earns 15 points, to "I do not need help in this area," which receives zero points Intermediate options include "I need help and encouragement to eat and drink" with 7 points and "I need all my meals to be provided or prepared for me," which is valued at 3 points This system ensures that higher points are awarded to individuals with greater needs.

An individual's responses are aggregated, and their total point allocation is multiplied by a locally determined 'price point.' This price point, established by each local council during the initial implementation of a resource allocation system, reflects the funding levels set within the community.

302 Evaluation of In Control Third (2008-2009) Phase Available at http://www.in-control.org.uk/publications/reports- and-discussion-papers.aspx Accessed 14 March 2011.

Each level of funding is based on local intelligence from a desk exercise whereby the current spending of a representative sample of approximately

100 real cases of persons achieving agreed outcomes are determined

The needs assessment scores and support costs are accessible for each percentile of the population In a controlled environment, the focus on agreed outcomes, along with strong connections to local costs and systems, ensures that the Resource Allocation System (RAS) remains a fair and effective framework.

Five versions of the Resource Allocation System (RAS) have been developed, with the latest, RAS 5, created in 2007 by John Waters, the Technical Director of In Control, and also referred to as e-RAS This version has gained significant traction in England, particularly due to its endorsement by the Association of Directors of Adult Social Services (ADASS) as a standard template for their Common Resource Allocation Framework A key innovation of RAS 5 is its shift away from setting personal budgets based on historical cost profiles of local individuals receiving social care Instead, as more individuals opt for self-directed services, RAS 5 incorporates real-time cost data from these users, providing a more accurate reflection of the costs associated with self-directed services compared to traditional models.

An allocation table is established by matching the SAQ scores of each percentile in a sample with the associated support costs for individuals at that percentile For instance, if 10% of the sample scores 18 points or lower on the SAQ and incurs costs of £2,876 or less, then an allocation of £2,876 is designated for a score of 18 points This table effectively outlines the costs corresponding to each percentile, indicating a significant shift in financial distribution compared to the previous system Continuous monitoring is crucial to ensure individuals' needs are met under their new allocations As the model evolves, it may require calibration, and a preliminary contingency factor between 5-25% is advisable, according to ADASS, which also recommends that local councils adapt accordingly.

303 Evaluation of In Control First (2003-2005), Second (2005-2007) and Third (2008-2009) Phases are available at http://www.in-control.org.uk/publications/reports-and-discussion-papers.aspx Accessed 14 March 2011.

304 www.in-control.org.uk/DocumentDownload.axd?documentresourceid(2.

305 Duffy, S., & Waters, J (2008) A 10 Step Plan for Reforming Social Care Funding Personal Thoughts for Discussion http://www.in-control.org.uk/media/54582/ras5%20-%20step%20plan%202%20.pdf Accessed 14 March 2011.

306 ADASS Directors of Adult Social Services (2009) Common Resource Allocation Framework Available at http://www.dhcarenetworks.org.uk/Personalisation/Topics/Latest/Resource/?cidc76 Accessed 14 March 2011.

307 Evaluation of In Control Second (2005-2007) Phase Available at http://www.in-control.org.uk/publications/reports-and-discussion-papers.aspx Accessed 14 March 2011.

The Department of Health's 2009 Resource Allocation Tool 2 offers a comprehensive step-by-step guide for creating effective resource allocation systems for personal budgets This practical resource emphasizes the importance of exercising discretion when determining the appropriate amount for each personal budget.

RAS offers a preliminary personal budget, but the final budget is determined once the individual's support plan is finalized This support plan must clearly define how the individual will meet their agreed outcomes and specify the actual costs associated with the necessary supports InControl advises maintaining flexibility and simplicity throughout this process to prevent unnecessary complexity and professionalism.

Brokerage services, local area coordination models, Citizen's Advice Bureaus, and Centres for Independent Living offer valuable resources to help individuals effectively manage their budgets according to their needs A standout initiative recognized by In Control as a best practice is the shop4support website, run by the London Borough of Harrow This platform features a diverse range of support service options along with detailed cost breakdowns, clarifying expenses for individuals, service providers, and local councils Shop4support embodies the In Control philosophy by promoting straightforward, user-friendly services rather than complex, professionally driven alternatives.

The In Control model has undertaken three evaluations to date, (first 2003-

Research from 2005 to 2009 shows that individuals who self-direct their services experience an enhanced quality of life, with support costs decreasing by 9% compared to traditional service models In Control suggests that improved support quality does not necessitate additional funding, as individuals often understand their needs best, particularly when consulting with friends and family Traditional services frequently fail to address the desires of those who wish to invest in services that foster social connections and personal accountability However, the psychometric reliability of the RAS 5 and its ability to predict costs remain under-researched, with evaluations primarily concentrating on the quality outcomes for those opting for self-directed services This gap in formal scientific data has raised concerns regarding the overall effectiveness of these models.

309 ADASS Directors of Adult Social Services, (2010) Making Resource Allocation work in a Financial Environment Cite contingency between 15-25% Available at http://www.puttingpeoplefirst.org.uk/Browse/SDSandpersonalbudgets/Resourceallocationsystems/? parent&71&child36 Accessed 15 March 2011.

310 ADASS Directors of Adult Social Services (2009) Common Resource Allocation Framework Available at http://www.puttingpeoplefirst.org.uk/Latest/Resource/?cidc76& Accessed 14 March 2011.

311 Evaluation of In Control Second (2005-2007) Phase Available at http://www.in-control.org.uk/publications/reports-and-discussion-papers.aspx Accessed 14 March 2011.

312 Shop4Support website is available at https://www.shop4support.com/S4S/UI/Content/MyCouncil/Details.aspx? Id6564 Accessed 14 March 2011.

Support Intensity Scale (SIS)

The Supports Intensity Scale (SIS), created by the American Association on Intellectual and Developmental Disabilities over five years, aims to help disability organizations understand the support needs of individuals with intellectual and developmental disabilities This scale emerged from a shift in perspective, moving away from focusing on deficits in adaptive behaviors and independent living skills, towards emphasizing the ability of individuals to lead fulfilling lives with appropriate support This transformation is encapsulated in the phrase "people who have a life and need support," which reflects the growing trend towards consumer-directed and individualized services, ultimately driving the need for a standardized, valid, and reliable measure of individual support requirements.

The Supports Intensity Scale (SIS) is recognized as a preferred tool for states and governments seeking to assess the service needs of individuals with intellectual disabilities It boasts a robust psychometric foundation, having been normed on a diverse sample of 1,306 individuals across 33 U.S states Extensive peer-reviewed literature provides evidence of the SIS's reliability and validity Currently, the SIS is implemented in 14 U.S states and is accessible in 13 languages across 19 countries Additionally, psychometric validations have been conducted for the SIS in languages such as French.

320 Wehmeyer, M., Chapman, T., Little, T., Thompson, J., Schalock, R., Tasse, M., (2009) Efficacy of the Supports Intensity Scale (SIS) to predict extraordinary support needs American Journal on Intellectual and Developmental Disabilities, 114, 1, 3-14.

In the book "Embarking on a New Century: Mental Retardation at the End of the 20th Century," Butterworth (2002) discusses the transition from traditional programs to more individualized supports for individuals with mental retardation This shift emphasizes the importance of tailoring assistance to meet the unique needs of each person, promoting greater autonomy and inclusion in society The work highlights the evolving understanding of mental retardation and the necessity for a supportive framework that empowers individuals to thrive in their communities.

322 Schalock, J., Thompson, J., & Tasse, J., (2008) International implementation of the Supports Intensity Scale Washington DC: American Association on Intellectual and Developmental Disabilities.

323 Thompson, J., Bryant, B., Campbell, E., Craig, E., Hughes, C., Rotholz, D., Schalock, R., Silverman, W., Tasse, M., & Wehmeyer, M., (2004) Supports Intensity Scale: Users Manual AAMR.

324 Weiss, J., Lunsky, Y., Tasse, M., & Durbin, J., (2009) Support for the construct validity of the Supports Intensity Scale based on clinician rankings of need Research in Developmental Disabilities, 30, 933-941.

325 Thompson, J., Tasse, M., & McLaughlin, C., (2008) Interrater reliability of the Supports Intensity Scale (SIS) American Journal of Mental Retardation, 113, 231-237.

326 Kuppens, S., Bossaert, G., Buntinx, W., Molleman, Van den Abbeele, A., Maes, B., (2010) Factorial validity of the Supports Intensity Scale (SIS) American Journal on Intellectual and Developmental Disabilities, 115, 4, 327-339.

327 Alberta, Ontario, Oregon, Colorado, Pennsylvania, Missouri, Louisiana, Washington, Virginia, Georgia, West Virginia, Utah, New Hampshire, Oklahoma.

328 Australia, Belgium, Canada, Catalonia, Croatia, Czech Republic, Greece, Iceland, Ireland, Israel, Italy, Japan, Korea, Netherlands, Portugal, Spain, Taiwan, and the US.

329 Mason, S.J., & Varner, K., (2010) Supports Intensity Scale Georgia Presentation 16 April 2010 American Association of Intellectual and Developmental Disabilities.

330 Lamoureux-Herbert, M., Morin, D., (2009) Translation and Cultural Adaptation of the Supports Intensity Scale in French American Journal on Intellectual and Developmental Disabilities, 114, 1, 61-66.

331 Morin, D., & Cobigo, V., (2008) The French version of the Supports Intensity Scale In R L Schalock, J R., Thompson, & M J Tasse (Eds), Psychometric properties of the Supports Intensity Scale Washington DC: AAIDD.

The SIS, designed for national application, clearly fulfills established criteria by demonstrating strong psychometric properties, making it a reliable tool for broader use beyond local contexts.

The Support Intensity Scale (SIS), copyrighted by the American Association on Intellectual and Developmental Disabilities (AAIDD), cannot be included in this report However, a brief overview of its three sections is provided based on publicly available information The first section, known as the Support Needs Scale, evaluates 49 life activities across six distinct domains.

The SIS Support Needs Index and Support Needs Profile provide essential insights into the support requirements of individuals with developmental disabilities The SIS Support Needs Index offers a composite score indicating the overall intensity of a person's support needs compared to others, while the Support Needs Profile visually represents these needs across six life activity domains It is crucial to complete these scales without considering available services or current engagement in activities Respondents assess the frequency of support needed, the time required for assistance, and the type of support provided The collected data is then compiled to generate normative scores based on responses from 1,306 individuals across 33 US states, allowing for the conversion of raw scores into standard scores and percentiles For instance, a score at the 70th percentile indicates that the individual scored equal to or higher than 70% of the normative group.

In their 2009 study published in the Journal of Intellectual Disability Research, Claes et al evaluated the inter-respondent reliability and construct validity of the Supports Intensity Scale (SIS) compared to the Vineland scales within a Dutch sample The research focused on the differences in responses between consumers and staff, highlighting the importance of reliable assessment tools in understanding support needs for individuals with intellectual disabilities The findings contribute to the ongoing discourse on measurement validity in the field of intellectual disability research.

333 Buntinx, W., van Unen, F., Speth, W., & Groot, W., (2006) The Supports Intensity Scale in the Netherlands: Psychometric properties and application in practice Journal of Applied Research in Intellectual Disabilities, 19, 246.

334 Gine, C., (2008) Catalan translation of the Supports Intensity Scale In R L Schalock, J R., Thompson, & M J Tasse (Eds), Psychometric properties of the Supports Intensity Scale Washington DC: AAIDD.

335 Verdugo, M., Arias, B., Ibanez, A., & Gomez, I., (2006) Validation of the Spanish version of Supports Intensity Scale Journal of Applied Research in Intellectual Disabilities, 19, 274.

The Supplemental Protection and Advocacy Scale evaluates eight key activities that inform the creation of individualized support plans, without influencing the previously mentioned support needs indices This section examines critical aspects such as protection from exploitation, the exercise of legal responsibilities, and the ability to make choices and decisions Each item is assessed based on frequency, support time, and type of support, following the same criteria established in Section 1.

Section 3, titled Exceptional Medical and Behavioural Support Needs, evaluates support requirements for 15 medical conditions and 12 behavioral issues, highlighting their role as predictors of high support needs The focus is on the importance of these medical and behavioral conditions in determining the additional support required The Exceptional Medical Support Needs section assesses the necessity of personal assistance or equipment for managing medical conditions, while the Exceptional Behavioural Support Needs section addresses the severity of inappropriate behaviors A standardized scoring system is utilized for both medical and behavioral items, ranging from 'no supports needed' to 'extensive support needed.'

The Supports Intensity Scale (SIS) was initially designed for individual support planning, but its aggregated data has gained significant interest for broader applications Analyzing SIS data alongside individuals' annual funding allocations offers valuable insights for service providers and funding agencies regarding the correlation between support needs and costs When this relationship appears weak, it prompts a need for further examination to assess whether funding allocations are accurate Variations in individual costs are influenced by multiple factors, including geographical location, economic conditions, and service utilization, alongside individual support requirements Field testing of the SIS with 575 individuals with developmental disabilities indicated that up to 68% of costs could be predicted by a combination of factors, such as residential setting (32%), SIS scores (29%), and the presence of psychiatric disorders (7%) Subsequent research has shown that the effectiveness of these predictive models varies significantly by jurisdiction, with predictive power ranging from 26% to 81% across different regions.

When used within the context of resource allocation, two applications for SIS dominate, the determination of a prospective budget amount that represents

336 Bossaert, G., Kuppens, S., Buntinx, W., Molleman, C., Van den Abeele, A., & Maes, B., (2009) Usefulness of the Supports Intensity Scale (SIS) for persons with other than intellectual disabilities Research in Developmental Disabilities, 30, 1306-1316.

The Supports Intensity Scale (SIS) Users Manual, authored by Thompson et al (2004), emphasizes the importance of Sections 1 and 3 in analyses These sections are crucial for understanding the support needs of individuals, making them integral to the SIS model.

The Human Services Research Institute (HSRI) utilizes the Supports Intensity Scale (SIS) to determine budget amounts and service payments for Medicaid Home and Community-Based Services (HCBS) This process typically involves a pilot sample of around 500 individuals receiving a specific Medicaid waiver, with assessments led by trained case managers Each assessment includes input from two individuals familiar with the participant, such as family members or staff from disability organizations To enhance resource allocation, additional data is collected on expenditures, living arrangements, and risk assessments, ensuring a comprehensive understanding of each individual's needs.

Statistical modeling is employed to analyze data and identify patterns among variables that predict service costs, leading to the formation of 'assessment levels' for participants with similar characteristics This process involves multiple iterations to refine these levels by considering behavioral and medical needs The analysis consists of four key steps: first, comparing observed SIS scores with normative data to enhance confidence in the SIS model; second, identifying factors, including the SIS, that account for variations in historical expenditures, resulting in a regression coefficient that indicates the model's predictive power; third, establishing discrete reimbursement levels; and finally, making critical decisions based on these analyses.

339 Fortune, J., LeVelle, J.A., Meche, S., Severance, D., Smith, G., Stern, J., vanLoon J., Weber, L., Campbell, E.M.,

In 2008, a significant white paper titled "Resource Allocation and the Supports Intensity Scale" was published by R.L Schalock, J.R Thompson, and M.J Tasse This document, produced by the American Association on Intellectual and Developmental Disabilities, explores key issues and approaches related to resource allocation and the Supports Intensity Scale, highlighting its implications for individuals with intellectual and developmental disabilities.

341 Supports Intensity Scale Users' Guide for Georgia (2010) Available at cishelpdesk.com Retrieved 17th February 2011.

342 Ravita Maharaj, Director, Supports Intensity Scale Program, AAIDD, Personal Communication, 17th February 2011.

The 343 HSRI utilizes backward regression with SIS scores as the primary variable, focusing on stakeholder input regarding budget neutrality, maximum levels, and applicable funding schemes Reimbursement levels are applied to the entire population by averaging per diem payments for each subgroup and dividing by the number of levels, ensuring that at least 10% of the population is represented in each level Initially, these levels may not align with current payments due to historical funding practices, but as recent expenditure data is integrated, the correlation improves There are six established support levels for residential services, ranging from Support Level 1 for individuals needing minimal weekly support to Support Level 6 for those requiring extensive behavioral assistance While most individuals with intellectual disabilities can be classified within this model, a significant portion of those with severe disabilities, estimated between 7% and 76%, may not be adequately represented by the SIS framework.

Instrument for the Classification and Assessment of Support Need (I-CAN)

In 1998, the Centre for Developmental Disability Studies (CDDS; later renamed the Centre for Disability Studies) at the University of Sydney engaged in a collaborative project with the Australian Capital Territory

Community Care Disability Programme to develop an assessment tool that would validly measure the support needs of individuals with intellectual

351 Bossaert, G., Kuppens, S., Buntinx, W., Molleman, C., Van den Abeele, A., & Maes, B., (2009) Usefulness of the Supports Intensity Scale (SIS) for persons with other than intellectual disabilities Research in Developmental Disabilities, 30, 1306-1316.

The Service Needs Assessment Profile (SNAP) was developed to evaluate the support needs of individuals with disabilities, as detailed in the study by Guscia et al (2006) published in the Journal of Intellectual and Developmental Disabilities Building on this foundational work, the Centre for Disability Studies secured funding from the Australian Research Council Linkage Project to enhance the measure, expanding its applicability to individuals with various disabilities From 2002 to 2004, the study involved testing the newly developed instrument, known as the I-CAN, on a diverse sample of 1,012 individuals with disabilities receiving residential or day programs from 16 different service providers.

Classification and Assessment of Support Needs, has been validated as a support needs measure for persons with a range of disabilities 355

The I-CAN is based on the conceptual framework of support promoted by both AAIDD and the World Health Organisation (WHO) At the time of development of the measure, these two organisations had both reconfigured their classification system for persons with disabilities to reflect a less medical approach to disability The amendments introduced by AAIDD have been outlined previously 356 WHO similarly introduced comprehensive changes to their classification system of disability when, in 2001, they launched the

The International Classification of Functioning, Disability and Health (ICF) redefines disability within a bio-psycho-social framework, emphasizing the interplay between an individual's health condition, desired activities, and the influence of environmental and personal factors, such as discrimination and family background This perspective underpins the I-CAN model, which prioritizes the individual, their support needs, and the environmental elements affecting their societal participation The model highlights the critical interaction between individuals and their surroundings, incorporating both human relationships and technology as essential supports.

The I-CAN instrument, developed by Llewellyn et al (2005) at the University of Sydney's Faculty of Health Sciences and the Centre for Developmental Disability Studies, is designed to classify the support needs of individuals with disabilities This tool aims to enhance understanding and provision of necessary assistance for people facing various challenges due to disabilities.

354 Riches, V.C., (2003) Classification of support needs in a residential setting Journal of Intellectual and

The I-CAN instrument, developed by Llewellyn et al (2005), is designed to classify the support needs of individuals with disabilities This research was conducted by the Faculty of Health Sciences at the University of Sydney in collaboration with the Centre for Developmental Disability Studies and the Royal Rehabilitation Centre in Sydney.

356 See section 4.1 on support models.

357 Parmenter, T., & Riches, V., (2002) Pathways 6 Conference: Assessment and Classification of Support Needs Available at http://www.adcet.edu.au/StoredFile.aspx?id9&fn=Vivienne%20Riches.pdf Accessed 18th February 2011.

Table 6: The I-CAN proposed theoretical model of people, the support they need and the environment 358

People (family, friends, community members, staff, health professionals) education, technical aids, equipment, advocacy, industry, funding, transport.

Built Environment, Natural Environment (pollution)

Psychometric testing of the initial three versions of the I-CAN was conducted with a sample of 1,012 individuals, primarily those with intellectual or multiple disabilities The assessments evaluated inter-rater reliability, test-retest reliability, predictive validity, concurrent validity, and practical utility, yielding generally acceptable reliability and validity scores However, some domains exhibited low test-retest reliability, which may indicate either poor reliability or the I-CAN's sensitivity to detecting actual changes in respondents' support needs Currently, Version 4 of the I-CAN is being tested on individuals with intellectual disabilities, mental health issues, traumatic brain injuries, and spinal cord injuries, with most participants receiving disability, mental health, or rehabilitation services in eastern Australia.

358 Arnold, S., Riches, V., Parmenter, T., & Stancliffe, R., (2009) The I-CAN: Using e-health to get people the support they need Electronic Journal of Health Informatics, 4, (1) e4

The study by Riches et al (2009) in the Journal of Applied Research in Intellectual Disabilities evaluates the reliability, validity, and practical utility of the I-CAN instrument for measuring supports While the psychometric testing of Version 4 yielded generally positive results, the test-retest reliability scores were unexpectedly lower than anticipated.

Version 4 (V4) has introduced an information and communication technologies (ICT) platform from which assessments can be completed directly onto an online server The software includes dialogue boxes for both qualitative and quantitative data, and pop-up boxes that provide prompts and suggestions to assessors during the assessment interview The software allows for the collection of a large dataset of profiles and provides standardised scoring and reporting facilities 361 A web-based server database, however, as opposed to a more traditional offline database, generates concerns regarding questions of security and privacy, resulting in some government bodies declining to adopt the I-CAN due to policy guidelines regarding the use of internet technologies 362

The I-CAN V4 takes approximately one to two hours to complete and is administered through a semi-structured, self-assessment process where a trained facilitator guides the individual, accompanied by a family member and support staff, through the assessment 363 As the I-CAN is a copyrighted tool, a brief overview of its content is presented based on material in the public domain Both qualitative and quantitative data are gathered during the interview Qualitative data are gathered on the individual’s demographics and additional personal information including support networks, and long-term goals 364 Quantitative data are gathered on two core areas, Health & Well- Being and Activities & Participation

Four domains are examined under Health and Well-Being;

Seven areas are examined under Activities & Participation:

361 Arnold, S., Riches, V., Parmenter, T., & Stancliffe, R., (2008) The I-CAN: Using e-health to get people the support they need HIC 2008 Australia’s Health Informatics Conference Available at http://www.hisa.org.au/hic08download Accessed 21 February 2011.

363 Arnold, S., Riches, V., Parmenter, T., & Stancliffe, R., (2009) The I-CAN: Support needed for Inclusion and Empowerment IASSID 2 nd Asia Pacific Conference, Singapore, 24-27 June 2009.

364 Arnold, S., (2010) Presentation for NDA: Assessing and classifying need using the I-CAN Presentation to the National Disability Authority, November 5th 2010.

 Applying knowledge, General tasks and demands

 Self-care and Domestic life

The Health and Well-Being domain includes various assessment items that evaluate multiple health issues, such as an individual's current mobility status.

The I-CAN V4 tool provides a comprehensive assessment of medication management by evaluating the frequency and level of support required for individuals, ranging from no support needed to constant assistance from multiple caregivers It also estimates costs based on the hours of support needed, factoring in salary rates for various health professionals and additional service-related expenses Additionally, a new version called the I-CAN Brief is being developed to focus specifically on resource allocation and individual funding.

After data collection, an automated report is generated for each individual, highlighting their support needs across various domains The software features options to visualize summary scores and track progress through illustrative graphs of assessments over time Additionally, it includes a quality control function that offers feedback on the accuracy of assessments, ensuring reliable results.

365 Arnold, S., Riches, V., Parmenter, T., & Stancliffe, R., (2009) The I-CAN Workshop: Positively and Powerfully Assessing Support Needs 44th ASSID Conference, Hobart, 4-6 November 2009 Available at http://www.leishman- associates.com.au/44assid2009/downloads/presentations/1.5%20Samuel%20Arnold.pdf Accessed 21 February 2011.

The I-CAN framework highlights the importance of providing appropriate support for individuals to achieve inclusion and empowerment, as emphasized by Arnold et al (2009) at the IASSID 2nd Asia Pacific Conference in Singapore It critiques traditional assessment methods that often misrepresent individuals' challenges by focusing on difficulties instead of the necessary support needed for improvement.

Implementation of the I-CAN to date is limited to Australia and New Zealand

Comparative tables of In Control, SIS and I-CAN

This section features tables that offer straightforward comparisons among three support needs assessment tools The first table highlights the key domains addressed by each tool, while the second table examines the essential psychometric properties of each scale Lastly, the third table evaluates how the three assessment tools measure up against four criteria that assess their suitability for integration into a resource allocation system for disability services in Ireland.

When comparing major domains across the three support measures, it's essential to approach the findings with caution The In Control SAQ serves as a template and differs from the practical tools utilized by over 150 local councils in England The SIS outline encompasses all domains within the three sections of the scale; however, certain items, especially those in Section 2 related to protection and advocacy, are typically excluded from resource allocation decisions Additionally, similar caution should be exercised when evaluating the domains in the I-CAN, as the I-CAN Brief, which is not yet publicly available, is the actual assessment tool used.

368 Arnold, S., Riches, V., Parmenter, T., & Stancliffe, R., (2009) The I-CAN Workshop: Positively and Powerfully Assessing Support Needs 44th ASSID Conference, Hobart, 4-6 November 2009 Available at http://www.leishman- associates.com.au/44assid2009/downloads/presentations/1.5%20Samuel%20Arnold.pdf Accessed 21 February 2011.

The I-CAN Brief, currently in development, aims to streamline the process of determining individual budgets by incorporating a reduced number of items from the original I-CAN framework Consequently, some domains previously included may be excluded from the resource allocation process.

Table 7: Comparison of support need assessment tools on key domains

In Control RAS5 SAQ Supports Intensity Scale I-CAN

Support from friends and family

Staying safe and taking risks

Practical aspects of daily living

Lifelong Learning Activities Employment Activities Social Activities

Community Living Activities Health & Safety Activities Home Living Activities

Advocacy Scale – typically this Section is not included in the determination of resource allocations.

Section 3: Exceptional Medical and Behavioral

Support Needs – assesses level of support needed for medical and behavioural reasons.

Applying knowledge, general tasks and demands

Community, social and civic living Interpersonal interactions & relationships Self-care and domestic life

Mental and emotional health Physical health

Behaviours of concern Health and support services Communication

Caution is necessary when interpreting the domains outlined, as they are not weighted based on their influence in resource allocation algorithms for individual budgets A meaningful comparison of domain weightings would require specific data from the resource allocation algorithms utilized by each scale, which was unfeasible due to the variability of the RAS5 tool across local councils and the proprietary nature of the I-CAN algorithms Consequently, the analysis is limited to the observation of the aforementioned domains, which include employment and lifelong learning, protection and safety, personal and domestic needs, physical and mental health, social relationships, and community engagement These core domains are further informed by additional factors, such as demographics and service type, when determining resource allocation Initial studies on the SIS's cost prediction capabilities indicated that 68% of costs could be forecasted using various variables, with 29% directly attributable to the SIS itself.

The comparison of three support needs assessment tools highlights their key psychometric properties, focusing solely on the SIS and I-CAN, as psychometric testing for In Control’s RAS5 has not been conducted This absence of testing does not imply that the measure is invalid; rather, it indicates a lack of psychometric evaluation Notably, the SIS psychometric data is limited to the scaled items in Section 1, which form the Support Needs Scale, and does not extend to the data collected in Sections 2 and 3 regarding protection and medical supports.

When interpreting the psychometric data, it is crucial to understand that it measures the potential of assessments to validly gauge support needs, not to determine resource allocation Psychometric data is often expressed as correlation coefficients, which range from -1.0 to +1.0, indicating the relationship between two variables A positive correlation closer to 1.0 and a negative correlation nearer to -1.0 signify a stronger relationship High correlation coefficients are essential to ensure the psychometric integrity and reliability of the assessment tool.

The weightings for the In Control RAS5 are determined by the unique priorities of each local council, while the weightings for the I-CAN Brief remain unspecified.

372 Sam Arnold, University of Sydney, Personal Communication, 4 th April, 2011.

373 Thompson, J., Bryant, B., Campbell, E., Craig, E., Hughes, C., Rotholz, D., Schalock, R., Silverman, W., Tasse, M., & Wehmeyer, M., (2004) Supports Intensity Scale: Users Manual AAMR.

The tool ensures reliability by delivering consistent data over time and across different administrators, while also demonstrating validity by accurately measuring its intended constructs An important aspect is concurrent validity, where lower correlations between distinct constructs, such as support needs and adaptive behavior, suggest a lack of overlap Key psychometric data for the SIS and I-CAN are summarized in the table below.

Table 8: Comparison of support need assessment tools on key psychometric variables

Normed Sample (size of sample from which normed data was determined).

Normed on a sample of 1,306 people in 33 states in the US.

Normed on a sample of 1,012 people in 16 organisations in the eastern states of Australia.

Internal Reliability (degree of consistency between a person’s ratings on related items of the tool).

Exceeds 0.90 for all subscales of Section 1.

(degree of consistency between administrators’ ratings of the same person).

Ranged from 0.35 to 0.79 in original testing but rose to 0.66 to 0.90 in subsequent testing 376

(degree of consistency between a person’s ratings over two or more different time periods).

Ranges from 0.74 to 0.94 for all subscales of Section 1 over a three week interval.

Ranged 0.05 to 0.93 at one year and 0.01 to 0.94 at 2 years interval.

Content Validity (degree to which professionals agree Based on Q Sorting by 74 professionals in No comparable data.

374 Unless otherwise stated the psychometric properties of the SIS are as stated in Thompson, J., Bryant, B.,

Campbell, E., Craig, E., Hughes, C., Rotholz, D., Schalock, R., Silverman, W., Tasse, M., & Wehmeyer, M., (2004) Supports Intensity Scale: Users Manual AAMR.

The psychometric properties of the I-CAN instrument, as detailed in Riches et al (2009), pertain specifically to its first three versions, emphasizing the instrument's reliability, validity, and practical utility in measuring supports for individuals with intellectual disabilities.

376 Thompson, J., Tasse, M., & McLaughlin, C., (2008) Interrater reliability of the Supports Intensity Scale (SIS) American Journal of Mental Retardation, 113, 231-237. that the full construct

(support need) is measured by the tool). the field of developmental disabilities 377

Concurrent/ Criterion- related Validity (degree of consistency between a person’s rating on the tool and similar measures or clinical judgement of professionals).

Ranged -0.23 to -0.68 against the ICAP, a tool which assesses adaptive behaviour.

Ranged from 0.46 to 0.66 against clinical judgement

Ranged -0.39 to -0.62 against the ICAP, a tool which assesses adaptive behaviour

Predictive Validity (degree to which a person’s rating on the tool can predict their performance on another measure).

No comparable data The predictive value of I-

CAN to predict daytime support was R 2 =0.40 and

R 2 =0.27; that is 40% of variation in daytime support and 27% of is explained by I-CAN scores.

The I-CAN demonstrates higher inter-rater reliability compared to the SIS, suggesting it yields more consistent results across different administrators Conversely, the SIS exhibits significantly greater test-retest reliability than the I-CAN, indicating its ability to produce stable results over time Although the I-CAN's test-retest findings were lower than anticipated, its developers argue that this may reflect the tool's sensitivity to changes in respondents' lifestyles rather than unreliability In terms of validity, both the I-CAN and SIS have shown similar ranges of correlation coefficients when assessed for concurrent validity against the ICAP, a measure of adaptive behavior, confirming that both tools measure a distinct construct related to support needs, independent of adaptive behavior.

377 Fortune, J., Agosta, J., & Bershadsky, J., (2011) 2011 Validity and Reliability Results Regarding the SIS Human Services Research Institute Available at http://www.hsri.org/publication/2011-validity-and-reliability-results-regarding-the-sis/

The third table below compares the three assessment tools based on four criteria to evaluate their potential suitability as key components in a resource allocation system for disability services in Ireland.

 whether they had been used previously within the context of determining individual budgets for people with disabilities;

 whether they had been developed with the potential for use at national level;

 whether they had robust psychometric properties;

 whether they were demonstrated to be appropriate for use with persons with a range of disabilities

The assessment measures evaluated demonstrated strong performance across most criteria; however, each fell short in at least one area This shortcoming does not imply an inability to meet the criteria but indicates that the existing evidence does not support a definitive conclusion The decision to implement any of these measures in Ireland will depend on the prioritization of specific criteria Ultimately, considerations may include the importance of having a standardized assessment tool for all individuals with disabilities, ensuring its psychometric reliability, or its successful application as a resource allocation tool in other contexts.

Table 9: Rating of support need assessment tools against review criteria

Used within the context of individual budgets   determined To be

Potential for use at national level   

Robust psychometric properties To be determined  

Appropriate for use with people with range of disabilities  determined To be 

Allocating Resources on the Basis of Individual Support Needs: Key

Individual Support Needs: Key Summary Points

Implementing a system-wide resource allocation model tailored to individual support needs offers numerous advantages Primarily, it promotes equity by ensuring that those with the greatest needs receive the highest level of support Additionally, it empowers budget holders to manage their resources effectively, allowing them to select and change providers with confidence, knowing they are making informed decisions that enhance their support experience.

The principle of "money follows the person" emphasizes the importance of transparency in standardizing assessments of support needs and service costs, which should be clearly communicated and accessible to the public Implementing individual budgets has demonstrated potential savings of 10% or more, highlighting the financial benefits of personalized funding Ultimately, any resource allocation system must prioritize quality outcomes for both individuals and their families, as evidence indicates that individual funding models are linked to improved results.

The Support Model marks a significant shift in the disability sector, emphasizing individualized support tailored to help individuals achieve their desired lifestyle outcomes, rather than concentrating on their perceived limitations This new paradigm has transformed professional practices in the field, making the assessment of support needs essential for personalized planning and effective resource allocation.

 The American Association on Intellectual and Developmental

The American Association on Intellectual and Developmental Disabilities (AAIDD) has established a comprehensive support model that emphasizes the creation of individualized services tailored to specific support needs This model encompasses several key steps: initiating person-centered planning, assessing individual support requirements, formulating a personalized support plan, and implementing continuous monitoring and evaluation to ensure that personal outcomes are successfully met.

Individualised funding refers to the allocation of resources tailored to meet specific needs identified during the planning process This approach ensures that supports are designed to be flexible and responsive, effectively addressing the unique requirements of each individual.

Individual funding models can be categorized into two types: retrospective and prospective Retrospective models assess a person's funding allocation during the person-centered planning and support planning process In contrast, prospective models establish the funding allocation before the creation of the individual's plan Prospective models are often preferred in practice.

Choosing the right support needs assessment tools is crucial for creating an effective resource allocation system tailored to individual needs This document reviews three key measures: the In Control Resource Allocation System (RAS 5), the AAIDD Supports Intensity Scale (SIS), and the Instrument for the Classification and Assessment of Support Need (I-CAN) developed by the Centre for Disability Studies at the University of Sydney.

Each measure was evaluated based on four key criteria: its application in establishing individual budgets, its development for national versus local use, the strength of its psychometric properties, and its suitability for a diverse range of individuals with disabilities.

Control's self-directed support system has pioneered the use of personal budgets in the UK's social care framework This innovative approach is now widely adopted by local councils across England and is being implemented in various international jurisdictions.

The In Control resource allocation system, known as RAS 5, is currently in its fifth iteration and utilizes a self-assessment questionnaire (SAQ) to evaluate support needs Each item on the SAQ is assigned a 'point per price' cost, which is set locally by individual councils This system is recognized and endorsed by the Association of Directors of Adult Social Services (ADASS) as a standard template for their national Common Resource Allocation Framework.

 The RAS provides an indicative allocation which is finalised when the person's support plan is agreed Self-directed support, as promoted by

In Control, emphasises the personal outcomes individuals achieve rather than the determination of funding they receive.

Control's RAS 5 meets three of the four established criteria, having been widely utilized for determining individual budgets, applied nationally, and used across a diverse range of individuals with disabilities However, it lacks the psychometric analysis rigor that other tools possess, which may limit a thorough evaluation of its effectiveness, even though robust data may still be available for analysis.

The Supports Intensity Scale (SIS), developed by the AAIDD over five years, is designed for disability organizations assisting individuals with intellectual and developmental disabilities With a strong psychometric foundation, the SIS has been standardized on a large sample in the United States and is widely utilized across various settings.

US, currently in 14 states, and internationally, in 19 countries It has been psychometrically tested in three foreign languages.

The SIS serves not only as a support needs assessment but also plays a crucial role in resource allocation and service payment calculations The Human Services Research Institute (HSRI) has significant expertise in utilizing the SIS as a resource allocation system across various jurisdictions To maintain the integrity of the measure, extensive training by AAIDD is essential for its administration When integrated with financial data, the SIS is frequently employed to assign individuals to specific funding levels, each corresponding to distinct funding ranges based on their individualized support needs.

The SIS meets three out of four established criteria, having been widely utilized for individual budget assessments, applied on a national scale, and demonstrating strong psychometric properties However, its application has primarily focused on individuals with intellectual and developmental disabilities, lacking extensive trials with those possessing diverse disabilities Therefore, a review of the scale items and normative data is necessary to assess their appropriateness for individuals with physical, sensory, or mental health disabilities.

 The I-CAN (Instrument for the Classification and Assessment of

Since the late 1990s, the Centre for Disability Studies at the University of Sydney has been developing the Support Need measure Grounded in the theoretical frameworks of the American Association on Intellectual and Developmental Disabilities (AAIDD) and the World Health Organization (WHO) models of disability, this measure emphasizes the dynamic interaction between individuals and their environments through a variety of support systems.

Implementing a Resource Allocation Model based on Individual Support

Preparing for a new model of resource allocation in Ireland

Implementing a resource allocation model centered on individual support needs in Ireland represents a significant shift in disability support services This transition towards a more personalized approach aims to enhance choice and control for individuals with disabilities, a goal supported by various stakeholders, including those with disabilities, their families and carers, service providers, and the government Recent reviews of disability service delivery have heightened expectations for substantial reform in this area.

The funding for disability services is determined through negotiations between disability provider organizations and the funding authority, such as the HSE or Local Health Offices Currently, the allocation of funds from the Department of Health to these entities is under review, and any changes to the resource allocation model in the disability sector must consider recommendations for significant adjustments to the overall health funding distribution.

Within the disability sector, funding negotiations currently involve a contract, without a tendering process, for the provision of disability services within specific geographical areas These contracts, which are essentially of

The transition from 'indefinite duration' funding arrangements to more suitable options is occurring globally, with significant changes already taking place in Ireland The recent implementation of Service Arrangements between disability organizations and their funding bodies aims to establish a standardized framework for negotiating funding across various disability providers This initiative represents a crucial first step towards enhancing the funding process in the sector.

378 Department of Health and Children (2010) Report on Public Consultation: Efficiency and Effectiveness of Disability Services in Ireland Available at http://www.dohc.ie/publications/pdf/vfm_consultation_report2010.pdf? direct=1, Accessed 15th February 2011.

379 Office for Disability and Mental Health (2010) Summary of Key Proposals from The Review of Disability Policy Available at http://www.dohc.ie/publications/pdf/key%20themes%20paper_summary2010.pdf?direct=1, Accessed 15th February 2011.

380 NDA (2010) Individualised supports and mainstream services; attitudes of people with disabilities and other stakeholders to policy proposals by the Department of Health and Children Dublin, National Disability Authority.

381 Disability Federation of Ireland (2010) Position paper on the Value for Money and Policy Review of the Disability Services Programme

The Human Rights Commission's 2010 Enquiry Report addresses critical human rights issues related to the operation of a residential and day care center for individuals with severe to profound intellectual disabilities in Dublin.

In their 2010 study, Vega et al emphasize the importance of establishing a Resource Allocation Model for Primary, Continuing, and Community Care in health services, particularly in Dublin They highlight the necessity for detailed, standardized information from disability providers to address the lack of publicly available funding data The authors propose that this information should eventually be supplemented with financial data reflecting individual support needs, akin to the initiatives by Saint John of God services This approach aims to shift funding negotiations from a reliance on 'slot placements' to a more individualized budgeting process based on specific support requirements.

Alternative funding options enhance the market for disability support services, empowering individuals with disabilities to choose their preferred providers In Ireland, disability service providers may require encouragement and support to adapt to this market shift Implementing a registration system and quality standards, similar to recent UK reforms for adult social care, mandates that all providers meet essential quality and safety criteria, regardless of the service setting Establishing these standards is crucial for linking funding to measurable outcomes and creating a fair competitive environment for new market entrants Ultimately, families benefit from having access to high-quality services across various locations and a diverse range of care models.

Increased competition in the market enhances service choices for consumers while compelling providers to improve transparency The Comptroller and Auditor General has highlighted a significant lack of accountability and transparency in the disability non-profit sector Notably, the unit cost of service provision in this sector remains unclear, with no established 'average cost' for placements, relying instead on estimates from the multi-annual investment programme, such as the average cost of a residential placement.

386 See Section 4.32 Supports Intensity Scale.

388 Care Quality Commission (2009) A new system of registration Guide for providers of healthcare and adult social care Available at http://www.cqc.org.uk/_db/_documents/New_system_of_registration_Guide_for_providers_FINAL.pdf Accessed 21 February 2011.

390 It is important in the current context to note that services provided to individuals who manage their own supports without the involvement of an agency are exempt from registration Quality Care Commission Who needs to register? Available at http://www.cqc.org.uk/guidanceforprofessionals/introductiontoregistration/ whoneedstoregister.cfm Accessed 21 February 2011.

391 Comptroller and Auditor General (2005) Provision of Disability Services by Nonprofit Organisations http://www.audgen.gov.ie/documents/vfmreports/52_DisabilityServices.pdf, Accessed 14th February 2011. estimated at €80,000 Even where 'average' costs could be determined, they would defeat the purposes of a resource allocation model based on individual support need In order for provider organisations to negotiate with funding bodies using an individual support need mechanism, considerable work would be required in determining and apportioning costs across the service array True transparency would be achieved when people with disabilities themselves are presented not only with the support services on offer from a given provider, but in addition, with the associated costs of each service element Individuals may then compare the costs across providers in a truly informed manner.

The necessary infrastructure for a support needs model of individual funding may already be in place, as Part 2 of the Disability Act mandates the assessment of individuals who believe they have a disability While the current assessment process is heavily focused on younger children and is clinically intense, it faces challenges in meeting statutory timeframes There is an opportunity to transition from these clinical assessments to a more holistic and potentially self-assessment approach, which aligns with a support model that evaluates, plans, and monitors individual support needs This shift is essential for determining prospective individual budgets based on those identified support needs.

Late Mover Advantage

Implementing a new resource allocation system for disability support services in Ireland necessitates significant planning and effort Despite the unique cultural and historical context of Ireland's service delivery structure, insights can be gained from similar initiatives in other regions This report highlights developments in the UK and US, showcasing how they have addressed comparable challenges, although their experiences may prompt further inquiries.

392 http://www.oireachtas.ie/documents/bills28/acts/2005/a1405.pdf, Accessed 15th February 2011.

393 Payne, C., (2009) The experiences of staff of the Assessment of Need in Early Intervention Services Research completed in partial fulfilment for the Psychological Society of Ireland's Expert Validation Committee's

In a 2009 thesis by B Muldoon, a survey was conducted among parents of children receiving early intervention services in Limerick City and County The study aimed to evaluate parents' perceptions of the services and assess the impact of the Disability Act on these interventions This research was completed as part of the Diploma in Health Services Management at the University of Limerick.

396 Moseley, C E., Gettings, R M., & Cooper, R (2002) Having it your way: Understanding state individual budgeting strategies Washington, DC: National Association of State Directors of Developmental Disabilities Services.

397 http://www.esri.ie/news_events/latest_press_releases/publication_of_report_of_/index.xml, Accessed 15th February 2011. than answers, a dialogue around these issues among all key stakeholders is a key starting point in the development of an Irish model of individual resource allocation Some issues for consideration, based on experiences elsewhere include:

The integration of eligibility criteria for disability services with assessments of support needs is currently being evaluated, particularly in the context of the UK's Fair Access to Care criteria This potential merger aims to streamline the determination of individual budgets, ensuring that individuals receive the necessary support tailored to their specific needs.

 the development of a Common Assessment Framework across different stakeholders to reduce the need for duplicate assessment and administration.

 the development of local area agreements between local statutory, voluntary and private organisations.

 the use of commissioning of services to stimulate new entrants to the market and increase the availability of innovative support packages.

There is a growing consensus on the variety of individual budget options available, including personal budgets, individualized budgets with multiple funding streams, direct payments, and individual service funds, as well as combinations of these approaches.

 the selection of a retrospective or prospective budgetary model which, in turn, would raise further issues such as whether budgets would be capped to ensure the model remained budget neutral.

There is a pressing need for evidence-based evaluative data regarding the implementation of models affecting all stakeholders, particularly focusing on the quality of life for individuals with disabilities, as well as their families and caregivers Additionally, it is crucial to assess the financial implications of disability service provision, as existing data in other regions has been characterized as inconsistent or 'patchy.'

 the promotion of an agenda for change in the delivery of disability services, whether through statutory and policy development, or more locally through the empowerment of leaders and advocates

 the development of a service array that meets the current expectations of people with disabilities, and a monitoring of the likely migration from traditional in-house services to mainstream, personalised options

398 See Section 2.3 Personalised Funding Options for detailed definitions of these terms.

 the impact on disability providers to facilitate the changing role of their organisations.

 the impact on direct care staff regarding possible employment outside of the HSE Employment Framework requirements of Section 38 funding.

The emergence of innovative brokerage services is essential for providing individuals with disabilities independent guidance on budgeting Additionally, the establishment of support services empowers those who aspire to become employers of their own support staff.

 the development of information technology and finance systems to support the invoicing and payment of individual budgets.

 the emergence of regulatory bodies and standards to ensure funding is explicitly linked to the achievement of standards.

 the development of transition services to ensure there is no disruption in services to those moving from traditional to self-directed options.

 the emergence of guidelines on the services and supports that can, or cannot, be eligibly funded via individual budgets.

 the selection of an agreed methodology for the determination of individual budgets, (e.g whether at individual or level basis, using custom made or standardised measures).

 the generation of financial data for the purposes of costing services and determining individual budgets (e.g consideration of allowable and non-allowable costs for reimbursement).

 the establishment of demonstration projects as a first step in the development of self-directed services.

Ireland's late mover advantage in implementing individual budgets allows for a thorough examination of challenges faced in other regions While some decisions will naturally arise during the system's evolution, many can be anticipated based on prior experiences A notable framework for guiding the implementation of individual budgets in the U.S comes from the National Association of State Directors of Developmental Disability Services (NASDDDS), which aids state agencies in providing effective support.

Certain decisions regarding support for individuals with developmental disabilities can only be effectively made when preliminary needs and financial data are available, as highlighted by John Agosta, Vice President of the Human Services Research Institute The National Association of State Directors of Developmental Disabilities Services (NASDDDS) recognizes that while involving individuals in discussions about their needs, services, and costs may seem straightforward, the implementation of resource allocation systems by states is often complicated by various local factors NASDDDS has pinpointed essential determinations that states must address in response to fundamental questions regarding resource allocation.

 'what support services will be provided?'

 'how much will be paid for support services'?

Each issue presents a set of questions that demand careful consideration from those executing the system For instance, the question of "who will be served?" leads to inquiries regarding the eligibility criteria of the model.

Table 10.1: Who will be served? Individual Budget Decision Process in

US States (Moseley et al., 2005) 402 Decision Determination to make: Question to answer

 what are the eligibility criteria?

 is eligibility based on categorical or functional measures?

 are services to be limited by eligibility category?

 are services to eligible individuals restricted based on targeting criteria?

In addressing 'what services are to be provided?', issues regarding the demand and availability of services must be considered:

401 Moseley, C., Gettings, R., & Cooper, R., (2003) Having it your way: Understanding state individual budgeting strategies Alexandria, VA: NASDDDS.

The 402 Table, graciously shared by Charles R Moseley, is derived from the research conducted by Moseley, Gettings, and Cooper (2005) on individual budgeting practices across the United States This study is featured in the publication edited by Stancliffe and Lakin (2005), which explores the costs and outcomes of community services for individuals with intellectual disabilities.

Table 10.2: What services are to be provided? Individual Budget Decision Process in US States (Moseley et al., 2005) 403

Decision Determination to make: Question to answer

What services are to be provided?

 how are needs requiring support separated from those that do not?

2 Identifying supports to be funded

 what is the process for identifying the supports to be received?

 is the process consistently applied?

 does the process produce valid and reliable outcomes?

 which identified needs are best met by existing informal supports?

 what is the historical pattern of service funding and approval?

 what is the scope of services that have traditionally been provided to people at similar levels or need?

 what types of supports are required, restricted, or excluded?

 what types of supports or services are limited by regulation or policy?

Issues addressing 'how much will be paid for support services' are key to the determination of budgetary allocations:

Table 10.3: How much will be paid for support services? Individual

Table 403, graciously provided by Charles R Moseley, is sourced from the national study by Moseley, Gettings, and Cooper (2005) on individual budgeting practices across the States This study is featured in the compilation edited by Stancliffe and Lakin (2005), which examines the costs and outcomes of community services for individuals with intellectual disabilities.

Budget Decision Process in US States (Moseley et al., 2005) 404 Decision Determination to make: Question to answer

How much will be paid for services?

 what is the evidence on which rates are based?

 is the budget development methodology consistent throughout the jurisdiction?

 are costs in line with historical trends?

 are reimbursement rates preset or based on current costs?

 are funds or services limited by caps or restrictions set through regulation or policy?

 does it respond to changes in service need?

 does it respond to individual choice?

 does it have a process for appeals and dispute?

 does it make sense to consumers and families?

The NASDDDS decision process framework effectively outlines the necessary decisions for implementing a resource allocation system tailored to individual support needs Engaging multiple stakeholders, including individuals with disabilities, service providers, and policymakers, is crucial for this process Establishing a forum for consultation and engagement will facilitate meaningful discussions on these issues This approach could be best realized through a limited number of nationwide demonstration projects.

The 404 Table, graciously provided by Charles R Moseley, is featured in the study "Having It Your Way," which explores individual budgeting practices across the States This research is part of a larger work edited by Stancliffe and Lakin, focusing on the costs and outcomes of community services for individuals with intellectual disabilities.

Implementing a Resource Allocation Model based on Individual Support

The introduction of a resource allocation model focused on individual support needs in Ireland is both timely and necessary Recent evaluations of the disability sector and health service funding, along with new negotiation agreements with disability providers, have created a strong expectation for meaningful change.

The introduction of self-direction and individual budgets is expected to significantly transform the disability support services market To maintain quality, it is essential to implement a registration system tied to established standards, ensuring that funding is allocated only to services that meet acceptable criteria This approach will prevent unhealthy competition that could lead to a decline in service quality Furthermore, a standards-based registration system will facilitate the entry of new providers into the market, promoting diversity and choice for consumers.

To enhance informed decision-making for individuals with disabilities, it is essential that disability providers adopt greater financial transparency This will empower those managing their own support budgets to select the most suitable disability support services.

This report examines effective resource allocation systems primarily focused on adult social care services Although In Control and the SIS are working on tools for children's services, their effectiveness in health services, including therapeutic and medical support, needs further investigation Additionally, a thorough exploration of how these tools align with the statutory needs assessment process under the Disability Act is essential.

Ireland can leverage its 'late mover advantage' by drawing insights from other regions that have successfully implemented resource allocation models focused on support needs Despite cultural differences, learning from the experiences of others can help identify important issues and potentially avoid pitfalls encountered in different contexts.

Appendix A: In Control - Example of Self Assessment Questionnaire (with kind permission of John Waters, In Control; available at www.incontrol.co.uk)

This part is about looking after yourself – things like washing, dressing and going to the toilet

A) I need a lot of support with all my personal care (washing, dressing, going to the toilet) I need help during the day and night I need someone around me day and night to make sure my personal care needs are met

To be clean and dressed

B) I often need help with personal care during the day I need someone around most of the time to make sure my personal care needs are met.

C) I need support now and then with personal care I’m OK for short periods on my own– I need some one around some of the time 5

D) I occasionally need help with personal care I can stay on my own for quite long periods 3

E) I very rarely need support to look after myself I’m OK on my own in most places – for days at a time I do not require help to meet my personal care needs

Eating and Drinking (Nutritional needs)

This part is about looking after yourself, and staying fit and well nourished – eating and drinking properly.

A) I need lots of help to eat and drink, I need to be fed and given drinks 15

To be well nourished and remain hydrated

B) I need help and encouragement to eat and drink, enough to stay well 7

C) I need all my meals to be provided or prepared for me 3

D) I do not need help in this area 0

Practical aspects of daily living

This Part is about day to day life; things like, shopping, cleaning, cooking, and doing the laundry

A) I need help with most things around the home: I need lots of help with my shopping, laundry, housework, managing finances, paying bills, and general home maintenance.

For my home and household

B) I need help with some things around the home : I need some help with shopping, laundry, housework, managing finances, paying bills, and general home maintenance

C) I need only occasional help with some things around the home: I occasionally need some help with shopping, laundry, housework, managing finances, paying bills, and general home maintenance

2 affairs to be well managed and maintained.

D) I don’t need help with very much around the home 0

Physical and Mental Well being

This section addresses the support necessary for managing your health, whether it involves a physical condition such as diabetes, heart failure, or stroke, or a mental health issue like depression, anxiety, bereavement, or dementia.

A) I need a lot of help from others to ensure I stay well and there is real concern about my complex health needs

For physical and mental wellbeing to be maintained

B) I need some help from others to make sure I stay well and there is some concern about my complex health needs

C) I need a little help from others to make sure I stay well 2

D) I am well and no-one has raised concerns about my health or welfare 0

Engaging with your community is essential for fostering connections and support By shopping at local stores, utilizing the library, and participating in activities at community centers or places of worship, you can strengthen neighborhood ties Joining a luncheon club or visiting neighbors promotes social interaction, while involvement in local organizations enhances a sense of belonging Spending time with friends further enriches these community experiences, creating a vibrant, supportive environment.

Your community can be defined by the people and places in your local area, or it may encompass those that hold significance to you based on your religion or ethnic background.

A) I need a lot of regular and ongoing support to do things in my local community 6

To be able to access my community

B) I need regular and ongoing support to do things in my local community 4

C) I need some Occasional support to do things in my community 2

D) I don’t need any support to do things in my community 0

Decisions that significantly impact your life, such as your living situation, support systems, and financial management, are often influenced by others If you find yourself feeling forgetful or confused, you may experience a diminished sense of control over these important aspects of your life.

A) Other people make most decisions about my life I need a lot of support to make more decisions, and take more control 5

To have choice and control over decisions effecting my life

B) I decide most day-to-day things But I don’t have much say in important decisions about my life I need some support to make decisions.

C) I make all the decisions I need occasional advise and support to make them 1

D) I do not need help to make choices or decisions, I make all the decisions I just need a bit of advice I have full capacity and understanding.

Staying safe is essential and can vary greatly from person to person, as everyone faces different risks in their daily activities Whether you're traveling on a bus, using a cooker, or navigating stairs, it's important to be aware of potential hazards and take necessary precautions to ensure your safety.

In high-risk situations, leveraging technology can effectively manage potential dangers To enhance your risk management strategies, explore the tele-care options available in your local area for valuable support.

A) I need help to stay safe a lot of the time, and I need a lot of support to stay safe People worry a lot about my safety There are no tele-care options that would help reduce the risks I face.

To be safe and benefit from responsible risk taking

B) I need help much of the time to stay safe People worry about my safety There are no tele-care options that would help reduce the risks

C) I need help some of the time to stay safe People worry a bit about my safety (There are real risks but these can be managed well with tele-care)

D) Sometimes I need a little help to stay safe I’m happy and no-one says they’re too worried 3

E) I don’t need help to stay safe I’m happy and no-one says they’re worried 0

This part is about taking part in work and learning

A) I need constant and ongoing support to take part in work or training, and be usefully occupied 25

B) I need help much of the time to take part in work or training, and 20 be usefully occupied To take part in work and learning. C) I need help some of the time to take part in work or training, and be usefully occupied 12

D) Occasionally I need a little help to take part in work or training, and be usefully occupied 7

E) I don’t need any support to take part in work and learning or I am retired from work 0

Support from friends family and community

This part is about the support available to you from friends and family The amount of support you have will effect your personal budget allocation

1 I am able to get nearly all the help I need from my family and friends 4

2 I am able to get most of the help I need from family and friends 6

3 I am able to get only some of the help I need from family and friends 8

4 I can get little or no help at all from family or friends 1

Appendix B: A comparison, from 2006, of three support needs assessment instruments conducted by the HSRI to advise the Colorado Division for Developmental Disabilities

Inventory for Client and Agency Planning (ICAP)

Scope Developed in 1980s assesses (i) adaptive and (ii) maladaptive behaviours (iii) demographics (iv) service utilisation Not originally developed for rate determination Adults and children 3+

The article details a total of 185 items, using scores from categories (i) and (ii) to compute a Service Level Index score This score indicates the level of supervision or training an individual may require, with a scoring system that weighs adaptive and maladaptive behaviors at a ratio of 70/30 The results are categorized into nine levels, where higher scores signify a reduced need for support.

Psychometrics Has 'acceptable psychometric properties' Normed on a sample of n=1,764 with some weakness noted for norming of small children and construct validity.

Tiêu đề	The Introduction of Individual Budgets as a Resource Allocation System for Disability Services in Ireland
Thể loại	thesis
Năm xuất bản	2011

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