Traumatic Brain Injury Report Western Health University Pamona10 21 06

TRAUMATIC BRAIN INJURY SELF REPORT CENTER FOR DISABILITY ISSUES AND THE HEALTH PROFESSIONS OCTOBER, 2006 Introduction This is the final report for a two year project to identify the needs of persons with TBI and their families Project obstacles and modified work-plan • BIPI has not completed any of it’s contacted responsibilities for year 2; • Monique Jansma (CDIHP TBI Project staff person) has been out on Medical • Leave from December 20, 2005 to present; and Completion of the TBI White Paper was delayed as a result of data that was • needed from BIPI activities Project staff was reassigned, and had to be brought up to speed • Training was difficult as most family members reported it was very difficult to come to training at the same time They wanted something more induring Project revision • BIPI contracted activities are being transfer to CCCL Attached is a copy of • the contracted modifications CCCL’s new contract will be for an amount not to exceed $17,500; Sandra Lawler will be replacing Monique Jansma on the contract; and • CDIHP is requesting an extension of the contact through September 30 th 2006 • to complete: the TBI White Paper, training, and policy objectives CDIHP has written Making Preventive Health Care Work for You; A Resource Guide for People with Physical Disabilities This guide was designed for people with Physical Disabilities and provides much of the information family members and persons with TBI requested in their healthcare priority CDIHP will be providing the guide in hard copy and on CD’s The CD will include a PDF, a large print copy and prepared in audio formats with software available free on the internet Page of 35 Objectives and Activities  Lay the groundwork required for the development of a statewide infrastructure supportive of Traumatic Brain Injury (TBI) survivors, their families, and their caregivers Activities will include: A Identifying key stake-holders statewide who can be included in the training and development of a statewide plan (Months and 3) BIPI has supplied CDIHP with a list, which has been added to by other groups Each of the groups have been contacted and participated in an interview process conducted by the project Additional groups and individuals have been identified though the needs assessment process The list is being updated for the training programs B Conduct research on what exists in California as model programs for persons with Brain Injury (Months and 6) Senior Research Analyst Brenda Premo has conducted three (3) meetings with the TBI project under the Department of Mental Health, and met with representatives of the California Care Giver Association to review current programs and discuss priority issues Both organizations will be involved with the survey being developed Sixty (60) interviews were conducted from a combination of survivors, family members, and community based providers Key issues included: • Lack of Care Coordination for TBI survivors after acute care • Lack of Coordination of information • If the injury occurred after 18 lack of long term supports • Family members reported that if the family member was significantly disabled by the TBI it was very hard to obtain long term rehabilitation services Page of 35 • Family member also reported the need for respite care, which was • great when they could get it but hard to get There was also an issue with finding primary care doctors who • understood secondary conditions Affordable community housing was almost not existent • Supports with in housing in the community were rare • Some consumers loved the day programs they were in, but many • reported they could not get into a program Providers talk about lack of funding for long term TBI issues • Families reported lack of information at the time of the injury CDIHP submitted the white to Department of Rehabilitation in August 2006 The paper was based on: the (3) surveys, a literature review, and additional data from focus groups A Copy is attached Key Issues A It was very difficult to get family member to participate in focus groups, they had difficulty finding people to care for the family member with TBI Most family members were interviewed by phone from their homes B Develop the webpage to be placed on CDIHP’s web-site located at www.cdihp.org with links to other web-sites (Month to 6) webconsultant The information has been integrated with other CDIHP information; most requests were regarding issues not specific to TBI, but included such issues as: • Physical Access Page of 35 • Durable Medical Equipment • Assistive Technology • Housing • Employment Making Preventive Health Care Work for You; A Resource Guide for People with Physical Disabilities is also being placed on the Website by December 30 C Identify and include current information on Brain Injury and community organizing to be put up on the website (Month 6-to12) Project Coordinator web-consultant CDIHP will be adding links to organizations which have a focus on TBI and have included a section on current activities and events List serves are also used to get information out to local communities about activities CCCL has agreed to provide information to update the website Do to funding resources change frequently CDIHP has provided I & R to 22 families and consumers, requests included: • Information about Assistive Technology D • Tutoring for drivers tests • Refers to Department of Rehabilitation • Access complaints regarding a Health appointment • Memory Aides • Transportation Outreach to the Brain Injury community about the availability of the Website and data base (Months 10-to12) Project Coordinator Information regarding the CDIHP website is being distributed with all information It has been designed to be accessible and easy to use Issues a Most requests for information have not been specific to TBI resources, except for peer support, and medical research Most requests for information is more general such as: • Housing and housing modifications Page of 35 • IHSS and respite care • Assistive Technology • Recreation • Transportation • Estate planning CDIHP decided to integrate all resources into the regular resource section F Conduct interviews/surveys with individuals, family members and TBI/BI organizational staff to understand major issues (Month to 4) Project Coordinator All interviews and focus groups have been completed Key training issues include: • Self advocacy skill for families and person with TBI • How to appeal health and government programs when • disagreements arise Picking a primary care provider • How to know the questions to ask • Researching community resources • Understanding Med-Cal and other benefits • Family trusts • How to qualify for door to door transportation • Long term Care Issues a The focus groups were hard with survivors as they represented a wide range of ability However, we did observe that if we allowed members to help each other we got some very good information b To encourage survivors to talk providers and family members were asked to stay out of the room during part of the focus group G Develop a training module for systems change and community organizing (Months 13 to 14) Project Director and CCCL Three modules are completed and training will begin in June 2006 • How to be a Savvy Health Care consumer Page of 35 • Emergency Properness for people with disabilities • How to know what we need and how to get it The trainings were postponed to the issues outlined above, training is planned for June and July, 2006 H Test the training with 10 to 20 Brain Injury survivors, family and service providers (Month 9) Project Director and Project Coordinator The Savvy Consumer module was tested on a cross disability group including people with TBI It received a rating of 3.8 out of a possible Modifications are being made the key issue was using examples that related to long term and chronic issues Issues a Most of the issues were very similar to those described in cross disability groups, some like memory loss, and behavior issues were more similar to the Alzheimer’s and some mental health issues After discussions it was decided to provide some basic empowerment training, and provide information on programs that other groups had related to the medical and behavioral issues b I Funding was a key issues for families and providers, CDIHP and CCCL are working together to develop a training for the Statewide advocacy group Develop questions for the interviews about key policy issues for Brain Injury in the community (Month to 4) Project Coordinator In interviews conducted in months and the following issues have been identified:  Long Term Services and Community Supports for Survivors  On going supports for family members who provide ongoing care for family members with TBI, including desperate services Page of 35  Funding for programs that focus on survivors and their families  Housing for survivors that include on going supports  Care Coordination that includes community based service such as IHSS J Develop a module in the training that describes disability policy and provides a forum for participants to identify to areas they want to focus on (months to 9) Project Director Making Preventive Health Care Work for You; A Resource Guide for People with Physical Disabilities has been developed and will be provided to all identified TBI programs, support groups, Independent Living programs and healthcare providers who work with people with TBI The hard copy is at the printer and is due to be completed by November 10th Development of Making Preventive Health Care Work for You; A Resource Guide for People with Physical Disabilities was paid for by National Rehabilitation Hospital though a Grant with NIDRR, CDIHP was the contractor June Kailes, Associate Director was the writer Funds from this grant will help pay for printing and distribution to persons with TBI, CBO’s and family members Grant funds will also help with putting the product on CD’s in text and audio formats Other CDIHP is working with the Olmstead Committee within the Health and Human Services Agency to look at the issues of TBI survivors The Olmstead committee has selected deinstitutionalization from nursing homes as one of it main issues for the next year Representatives from community based organizations have provided information on key issue for persons with TBI The committee is moving forward on three issue which impact persons with disabilities including those with TBI injuries The Olmstead Page of 35 committee has heard testimony from consumers and providers from the TBI community The Olmstead Committee is working with the Department of Health Services to apply for a money follows the person grant The grant will have services which may support persons with TBI to remain in the community Summary It has become clear that to move forward the TBI community needs to build coalitions with other groups with similar issues They not have the numbers to push for funding or supports without a larger push in partnership with the DD community, Alzheimer’s groups, ILC’s and Mental Health, CDIHP is going to recommend that they get involved with these organizations to developed an agenda of conmen issue that can be developed and advocated for in larger numbers Page of 35 Survey Development and Distribution The Center for Disabilities Issues in the Health Professions at Western University in Pomona, California (CDIHP) developed (3) surveys for TBI survivors, Family Members and Service Providers The purpose of the surveys was to determine the current resources and barriers they are experiencing Survivor and family member surveys were provided in English or Spanish Surveys were read aloud to participants in groups As the surveys were read, group members answered questions independently Surveys were issued via paper copy and completed independently by the family member or survivor Family members who did not attend the group sessions completed surveys via phone interviews Provider surveys were sent through the mail to Independent Living Centers (ILC’s) and TBI organizations throughout California Providers completed the surveys independently and returned them via mail to WesternU CDIHP surveys were sent to 46 organizations with instructions to have a service provider complete the survey, 32 surveys were returned The Service Providers that completed the surveys worked in Monterey, Santa Cruz, Stanislaus, San Diego, Orange, San Joaquin, Alameda, Santa Clara, Tuolumne, Amador, Calaveras, and Mariposa counties Page of 35 Summary Survey Findings The section below summarizes the findings from 27 TBI Survivor, 12 TBI Family Members, and 32 Community Service Provider/Case Worker surveys A Survivors Survey Results (n=27)  66% (n=18) male, as opposed to (33%) female  Largest percentage (55.56%/100%) ages 31-50, (22%) 18-30, (19%) 51-65, and only (4%) over the age of 65  Ethnicity: 16 (62%) Caucasian, (19%) Latino/Latina, (15%) Multi-ethnic, and 1(4%) reported as “Other”  96% (n=26) reported current living situation 31% (n=8) with parents, (26%) alone, and (8%) with their adult children  Lengths of injuries (n=27/100%) varied: (40%) 11 years or longer, (28%) 1-5 years, (12%) 6-10 years, (12%) 7-11 months, and (8%) for months or less  Only of 27 reported having a service/companion animal  Over one-half (n=14, 56%) reported cognitive and/or developmental disabilities, (n=10, 40%) physical, and over one-third (n=9, 36%) reported mental/psychological limitations  Respondents reported the top community services they receive as: 14 (60.9%) Educational, 10 (44%) Employment supports, and (39%) Support groups  Respondents reported the top community services currently need or are eligible for but are not receiving as: (20%) None, (20%) Other ((1) case manager, (2) computer training), and (15%) Support groups  Respondents reported the top community services currently receive but are not getting enough of: (21%) Other (case manager, housing), (16%) None, (16%) Employment supports, and (16%) Social Recreational Services  Only slightly more than one-half (16, 62%) knew whether, or if, there was an agency to help them identify community resources; and almost one-half (13, 48%) wanting to get information on community resources from their medical providers/staff Page 10 of 35 Respondents were asked to make a list of barriers they face that prevent them getting both community services Top responses included: Communication problems, “they can't understand me" Misunderstandings and ignorance of TBI Trouble getting and keeping a job as well in forming relationships and friendships Not knowing what's out there “My memory” Need Employment Getting transportation & affordable housing Page 21 of 35 Section 3: Independent Living Only (15%) of 26/27 respondents reported receiving IHSS services However, of the 22 (85%) that not, over ½ (15, 56%) reported they not need (Figures 15 & 16 below) Figure 15 Figure 16 Section 4: Advocacy Almost all respondents 24/27 (96%) reported that advocacy training would be helpful in locating, accessing and obtaining community services (Figure 17 below) Figure 17 Section 5: Medical Services Slightly less than one-half (10, 48%) reported that their primary care was less than miles, and 22 (82%) have a PCP they see regularly Figure 18 Page 22 of 35 Figure 19 Twenty-two (n=5) percent reported having barriers to their primary care physician These barriers include: Lack of provider understanding of TBI, no transportation, no insurance, and trouble getting appointments Figure 20 Figure 21 Figure 22 22 (82%) of all survivor respondents reported receiving (cognitive) rehabilitative services Figure 23 Page 23 of 35 B Family Member Data (n=12) Section 1: Demographics One-half (6, 50%) of respondents reported family member had their TBI 11 years or more Parallel to the survivor respondents, family members reported their family members with TBI had additional cognitive, mental, and physical disabilities (Figures 24 & 25) Figure 24 Figure 25 As opposed to the survivors respondents, only (20%) of family members lived in Orange County, (50%) from Monterey County, and (7%) lived in Los Angeles County Figure 26 Figure 27 Section 2: Community Resources Family Members reported top community services family members receive: (Figure 28) (50%) Support groups (42%) Assistive Technology (augmentative communication, TTY, assistive listening devices, voice activated computer software Page 24 of 35 (33%) In-home support services IHSS Page 25 of 35 Figure 28 Types of community services that you and/or your family member receive as assistance for people with traumatic brain injuries and their families (check all that apply): Service Type # of responses % of n=12 50.0% 41.7% 33.3% 16.7% 2 16.7% 16.7% 16.7% 8.3% Support groups Assistive Technology (augmentative communication, TTY, assistive listening devices, voice activated computer software In-home support services Transportation (fixed-route, Para-transit, or other not by family or friends) Educational services (college courses, adult education) None No Answer Other Family Members reported top community services need or are eligible for but not receiving: (50%) In-home support services IHSS (42%) Transportation 3 (25%) Day programs (counseling center activities that last all day) (25%) Life skills training (Independent Living Services) Figure 29 Types of community services that you or your family member currently need or are eligible for but are not receiving (check all that apply): Service Type # of responses % of n=12 In-home support services Transportation(fixed-route, Para-transit, or other not by family or friends) Day programs (counseling center activities that last all day) Life skills training (Independent Living Services) Assistive Technology (augmentative communication, TTY, assistive listening devices, voice activated computer software Employment supports (Department of Rehabilitation, Ticket to work, Workability) Support groups Mental health services Care giver resource center No Answer Other: - Housekeeping 50.0% 41.7% 3 25.0% 25.0% 16.7% 16.7% 2 2 16.7% 16.7% 16.7% 16.7% 16.7% Family Members top community services currently receive but are not getting enough of: (Figure 30): (33%) None, (33%) No answer, followed by each of In-home support services, Day programs, Assistive Technology, and other – housekeeping Page 26 of 35 Figure 30 Types of community services that you or your family member currently receive but are not getting enough of: Service Type # of responses % of n=12 None No Answer In-home support services Day programs (counseling center activities that last all day) Assistive Technology (augmentative communication, TTY, assistive listening devices, voice activated computer software Other: - Housekeeping 4 2 33.3% 33.3% 16.7% 16.7% 16.7% 16.7% Unlike the survivor respondents, with almost one-half (13, 48%) wanting get information on TBI from their medical providers/staff; family members preferred getting TBI information from community agencies who provide services for TBI (5, 42%) Figure 31 Where you believe it would be most helpful to get information regarding available community resources for people with traumatic brain injury? Source of TBI Information At an independent living center Other 1- Orange County Caregiver Resource Center  - BIA  1- Support Groups  1-“No, I on my own” From medical staff No Answer # of responses % of n=12 41.7% 33.3% 16.7% 8.3% Section 3: Independent Living Family members ranked the top services that would help their family members with TBI live more independently as: (42%) Personal coaching for independent living (independent IL training) (42%) In-home support (42%) Transportation Figure 32 What type of supports you believe would help you live more independently? Type Personal coaching for independent living In-home support Access to transportation (public, Para transit, family) Support groups Educational programs Affordable/Accessible housing Supported living arrangement No Answer Page 27 of 35 # of responses % of n=12 5 4 41.7% 41.7% 41.7% 33.3% 33.3% 16.7% 8.3% 25.0% Family Members were asked to make a list of barriers they faced family member with TBI from getting community services Top responses included: • Existing programs not comprehensive enough • Lack of affordable/accessible housing • Hard to find medical facility with TBI specialty • My family member is not able to access services due to language issues • No insurance coverage, • No programs in Salinas, only in San Jose, and is too far away ã Assistive technology and transportation Almost ẵ (5, 46%) of family members reported that their family member had been denied services, these include: Respite care, Help filling out housing application SSI, MRI, mental health services due to no Spanish speaking providers, and IHHS; and only ½ (5, 50%) knew how to file a complaint/grievance (Figures 32 & 33) Figure 32 Figure 33 Section 4: Advocacy All respondents 11/12 that answered question reported that advocacy training would be helpful in locating and obtaining community services Seven (64%) of family members have made plans for their member’s care after they die (Figures 34 & 35 below) Figure 34 Page 28 of 35 Figure 35 Section 5: Medical Services Family Members reported received help from their medical insurance company’s with: locating physically accessible care (3, 27%), assistive living devices (3, 27%), and clarification of benefits (5, 46%) However, almost one-half (5, 46%) received no assistance Figure 36 Seventy-five percent (9) reported their family member received cognitive rehabilitative care Figure 37 C Service Provider Data (n=32 respondents) Section 1: Demographics Ethnicity (n=30/32): 20 (67%) Caucasian, (13%) Latino/Latina, (7%) Multi-ethnic, and 1(3%) reported American Indian or Alaskan Native (Figure 37 below) More than ½ (20, 63%) reported working with people with TBI for or more years (Figure 38 below) Page 29 of 35 Figure 37 Figure 38 Almost ½ of respondents 14 (49%) work in Monterey County Counties represented by or more include: Stanislaus (14%) San Diego 3, (10%), Orange County (7%), and San Joaquin (7%) (Figure 39) Figure 39 Section 2: Community Resources Respondents reported the top community services (they believe) readily available to people with TBI and their families: 21 (68%) Educational services, 21 (68%) Life Skills training-IL, 20 (52%) Transportation, 18 (58%) Assistive technology, and 17 (55%) In-home support services (IHSS) (Figure 40 below) Page 30 of 35 Figure 40 The top community services provided by the respondents and their working agencies include: 25 (81%) Educational services, 22 (71%) Assistive technology, 21 (68%) Support groups, 20 (65%) Employment supports, and 20 (65%) IL Life skills training (Figure 41 below) Page 31 of 35 Figure 41 The top community services respondents feel are need by people and their families with TBI are: (Figure 42 below) 15 (47%) IL Life skills training, 14 (44%) Employment supports, 13 (41%) In-home support services, 13 (41%) Support groups, and 10 (31%) Assistive technology Page 32 of 35 Figure 42 Almost all respondents (30, 94%) reported there was a community agency available to provide resources for people with TBI Figure 43 Page 33 of 35 Providers were asked to make a list of barriers they faced family members/survivors with TBI from getting community services Top responses included:  Cost of living and knowing what services exist  Insufficient case management  Not enough services available due to budget constraints  Not enough IL training available in Stanislaus County  Medical case management Gap's in prescriptions cause poor health  outcomes No affordable housing  Finding their way through the bureaucratic maze  Needing primary assessment and no health benefits to cover Section 3: Independent Living The majority of respondents 24 (86%) reported that advocacy training would be helpful in locating and obtaining community services Figure 44 Page 34 of 35 Page 35 of 35 ... the groundwork required for the development of a statewide infrastructure supportive of Traumatic Brain Injury (TBI) survivors, their families, and their caregivers Activities will include: A... programs for persons with Brain Injury (Months and 6) Senior Research Analyst Brenda Premo has conducted three (3) meetings with the TBI project under the Department of Mental Health, and met with... in, but many • reported they could not get into a program Providers talk about lack of funding for long term TBI issues • Families reported lack of information at the time of the injury CDIHP submitted