Traumatic Brain Injury Report Western Health University Pamona10 21 06

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 

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 30th

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.

 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 1 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 3 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

 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 5 to 6) web- consultant.

The information has been integrated with other CDIHP information; most

requests were regarding issues not specific to TBI, but included such issues as:

C. Identify and include current information on Brain Injury and

community organizing to be put up on the website (Month 12) Project Coordinator web-consultant.

6-to-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

 Tutoring for drivers tests

 Refers to Department of Rehabilitation

 Access complaints regarding a Health appointment

 Memory Aides

 Transportation

availability of the Website and data base (Months 12) Project Coordinator

10-to-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

 IHSS and respite care

F Conduct interviews/surveys with individuals, family members and TBI/BI organizational staff to understand major issues (Month 2

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.

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

 Emergency Properness for people with disabilities

 How to know what we need and how to get it.

The trainings were postponed do 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

5 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 Funding was a key issues for families and providers, CDIHP and CCCL are working together to develop a training for the Statewide advocacy group

policy issues for Brain Injury in the community (Month 2 to 4) Project Coordinator

In interviews conducted in months 1 and 2 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.

 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 3

to 5 areas they want to focus on (months 4 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

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 do 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

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

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 9 (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, 5 (19%) Latino/Latina, 4 (15%) Multi-ethnic, and 1(4%) reported as “Other”

 96% (n=26) reported current living situation

31% (n=8) with parents, 7 (26%) alone, and 2 (8%) with their adult children

 Lengths of injuries (n=27/100%) varied: 9 (40%) 11 years or longer, 7 (28%) 1-5 years,

3 (12%) 6-10 years, 3 (12%) 7-11 months, and 2 (8%) for 6 months or less

 Only 1 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 3 top community services they receive as: 14 (60.9%) Educational, 10 (44%) Employment supports, and 9 (39%) Support groups

 Respondents reported the 3 top community services currently need or are eligible for

but are not receiving as: 4 (20%) None, 4 (20%) Other ((1) case manager, (2)

computer training), and 3 (15%) Support groups

 Respondents reported the 4 top community services currently receive but are not getting enough of: 4 (21%) Other (case manager, housing), 3 (16%) None, 3 (16%) Employment supports, and 3 (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 toget information on community resources from their medical providers/staff

 Most important type of service they believe would help them to live more

independently Top 3 are: 9 (33%) Personal coaching for IL (independent IL training),

5 (19%) Support groups and 5 (19%) Educational programs

 Barriers faced preventing getting community services : Communication problems,

“they can't understand me." Misunderstandings/ignorance of TBI, Trouble

getting/keeping jobs, trouble forming relationships/friendships, not knowing what's out there, “My memory”, Employment, Transportation, and Affordable housing

 Only 4 (15%) of 26/27 respondents reported receiving IHSS services However, of the 22 (85%) that do not receive IHSS, over ½ (15, 56%) reported they do not need

 Almost all respondents 24/27 (96%) reported that advocacy training would be helpful

in locating and obtaining community services

 Slightly less than one-half (10, 48%) reported that their primary care was less than 5 miles, and 22 (82%) have a PCP they see regularly

 22% (n=5) reported having barriers to primary health care : lack of provider

understanding of TBI, no transportation, no insurance, and trouble getting appointments

 22 (82%) respondents reported receiving (cognitive) rehabilitative services

B Family Member Results (n=12)

 One-half (6, 50%) reported family member had their TBI for 11 years or more

 Parallel to the survivor respondents , family members reported that their loved ones had additional cognitive (5, 46%), mental (4, 36%), and physical disabilities (6, 55%)

 As opposed to survivors respondents, only 2 (20%) of family members lived in

Orange County, 5 (50%) Monterey County, and 3 (7%) lived in Los Angeles County

 Family Members reported 3 top community services family members receive: 6

(50%) Support groups, 5 (42%) Assistive Technology, and 4 (33%) In-home support services (IHSS)

 Family Members reported 4 top community services need or are eligible for but are

not receiving: 6 (50%) In-home support services IHSS, 5 (42%) Transportation, 3

(25%) Day programs, 3 (25%) Life skills training (Independent Living Services)

 Unlike the survivor respondents, with almost one-half (13, 48%) wanting information on TBI from their medical providers/staff; family members preferred getting TBI information from community agencies that provide services for TBI (5, 42%)

 Top 3 services that would help family members live more independently: 5 (42%) Personal coaching for IL skills, 5 (42%) In-home support services (IHSS), and 5 (42%) Transportation

 Barriers faced preventing family member in getting community services : Existing programs not comprehensive enough, Lack of affordable/accessible housing

Hard to find medical facility with TBI specialty, not able to access services due to language issues, No insurance coverage, and transportation

 Almost one-half (5, 46%) of family members reported that their family member were 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

 All respondents 11/12 (100%) that answered question reported that advocacy

training would be helpful in locating and obtaining community services

 Seven (64%) have made plans for their family member’s care after they die

 Family Members reported they received assistance 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

 75% (9) reported their family member received cognitive rehabilitative care

C Service Provider/Case Worker Results (n=32)

 Ethnicity (n=30/32): 20 (67%) Caucasian, 4 (13%) Latino/Latina, 2 (7%) Multi-ethnic, and 1(3%) reported American Indian or Alaskan Native 16 (62%) Caucasian, 5 (19%) Latino/Latina, 4 (15%) Multi-ethnic, and 1(4%) reported as “Other”

 More than ½ (20, 63%) reported working with people with TBI for 5 or more years

 Almost ½ of respondents 14 (49%) work in Monterey County Counties represented

by 2 or more include: Stanislaus 4 (14%) San Diego 3, (10%), Orange County 2 (7%), and San Joaquin 2 (7%)

 Top 5 community services (believed) readily available to people/families with TBI: 21 (68%) Educational services, 21 (68%) Life Skills training-IL, 20 (52%) Transportation,

 Top 5 community services provided by 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.

 Top 5 community services respondents feel are need by people and their families with TBI are: 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.

 Almost all respondents (30, 94%) reported there was a community agency available

to provide resources for people with TBI

 Barriers faced by TBI survivors/families from getting community services: Cost of living, knowing what services exist, insufficient case management, not enough services

available due to budget constraints, and no affordable housing

 The majority of respondents 24 (86%) reported that advocacy training would be helpful

in locating and obtaining community services

Specific findings and charting of the above categories are summarized in the three sections below

A Survivor Survey Data Results (n=27 respondents)

Section 1: Demographics

A disproportionate sixty-six percent (n=18) of the survivor respondents reported as male, as opposed to nine (33%) female Of the twenty-seven survivors completing the surveys, the largest percentage (55.56%) were between the ages 31-50, another 22.2% were 18-30, 18.5% were ages 51-65 and only 3.7% were over the age of 65 (Figure 1 & 2 below)

The survey was offered in English and Spanish The TBI survivor’s ethnicity was: 16 (62%) Caucasian, 5 (19%) Latino/Latina, 4 (15%) Multi-ethnic, and 1(4%) reported as “Other” Thirteen (48%) of the survivors lived in Orange County, 12 (44%) from Monterey County, and only 2 (7%) lived in Los Angeles County (Figures 3 & 4 below)

Note: This survey was completed by a very small number of TBI survivors representing only

3 counties, and therefore is not representative of the needs, resources and barriers

experienced by TBI survivors throughout California

Twenty-six of the 27 (96%) of TBI survivors reported their current living situation The largestpercentage 31% (n=8) live with parents, a close 7 (26%) reported living alone, and only 2 (8%) lived with their adult children The large numbers of TBI survivors reported living alone may be higher than the average due to the fact that most of the survivors completing

surveys are current clients of the CCCIL Independent Living Center ILC services require that people have a higher level of independence, as ILC service are provided at a central location, at not provided at one’s home (Figure 5 below)

Survivors had different lengths of time for their injuries Nine (40%) had a TBI for 11 years

or longer, 7 (28%) 1-5 years, 3 (12%) 6-10 years, 3 (12%) 7-11 months, and only 2 (8%) of had a TBI for 6 months or less (Figure 6 below)

Only 1 of 27 reported having a service/companion animal (Figure 7 below)

Do you have a pet?

Do you have a service/companion animal? (A service animal

is a guide dog, hearing dog, etc.)