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Services for Oregonians with
Brain Injury
Year 2000 Town Meetings
In the spring and summer of 2000, the Brain Injury
Association of Oregon (
The purpose of these town meetings was to:
* Update survivors, family members and service providers on new programs and recent activities of the Brain Injury Association of Oregon and the Oregon TBI State Demonstration Project;
* Gather participants’ recommendations for next steps in improving supports and services statewide and within individual regions of the state; and
* Strengthen
the ties between the state
Getting the Word Out
Invitations and meeting packets were mailed to approximately 2500 Oregonians who are currently on the mailing list for the statewide quarterly newsletter, the Headliner. The packet included a brief feedback sheet that could either be completed and submitted at the meeting or mailed. In addition, notices were placed in local newspapers and calls were made to community contacts in each location. Flyers were also mailed to brain injury support group leaders across the state, who were asked to spread the word in their local communities.
Participants
From April
through July, thirteen meetings were held across
* 43% (n=93) were individuals with brain injuries,
* 35% (n=75) were family members or friends of individuals with brain injuries,
* 29% (n=63) were professionals, agency staff and/or service providers.
(NOTE: The total exceeds 100% because some individuals
were represented in more than
one of the three categories; e.g., survivor and service
provider.)
An additional 75 people mailed in the written survey form, bringing the total number of participants to 289 (survivors: n=120; family/friends: n=95; service providers: n=95).
Meeting Process
Each meeting was two hours in length, and opened with a brief update of recent activities and progress since the last town meetings in 1998. Related materials were available on display to provide more detail for interested participants. The bulk of the meeting was reserved for feedback from participants. Using an open-ended, focus group format, participants were asked to respond to the question:
What is the most important change that would improve services for
Oregonians with brain injury and their families?
A round robin approach was used to collect input, and comments were recorded on flip charts for participant reference. Staff took more detailed notes of each comment to reserve for future analysis.
Results
Testimony from the town meetings and written surveys submitted by participants were transcribed and analyzed. The needs expressed by Town Meeting participants fell into three main categories:
1. Awareness and education about brain injury for the general public, professionals and services providers;
2. Information about brain injury and available resources/services for individuals with brain injury and their families/caregivers; and
3. Availability,
accessibility and appropriateness of services for individuals with brain injury
in
Need #1: Public Awareness and Education about Brain Injury.
Repeatedly, participants shared their frustration with the general lack of awareness and understanding of brain injury on the part of both the general public and the specific professionals who provide supports and services to individuals with brain injury. Comments were almost equally divided between the two groups. Included in the general public were friends, neighbors, co-workers and current or potential employers. Included in the list of professionals were physicians and health care providers, educators, attorneys, state-agency staff and service providers.
Need #2: Information about Brain Injury,
Resources and Services.
A recurring theme across the state was the need for information. Some participants wanted general information about brain injury, but many had specific requests for targeted information related to their current life situations and needs. Participants also wanted information about types and locations of local and statewide resources and services, and how to access these.
NOTE: The Oregon Brain Injury Resource Network (OBIRN) was established in 1999 as a central library service for dissemination of information about brain injury, resources and services. OBIRN can be reached by a toll free number (1-800-544-5243) or via web site (www.tr.wou.edu/tbi).
Need #3: Service Needs.
By far, this was the largest category of needs expressed by participants. Comments and concerns about services fell into three subgroups: availability, accessibility, and appropriateness.
Availability refers to needed services that do not exist at all, do not exist in the participant’s local community, or do not exist in sufficient amounts to meet the current need. Significant gaps in needed services exist in many parts of the state, particularly those communities outside the Portland-Salem-Eugene I-5 corridor.
Accessibility refers to barriers or blocks that prevent individuals from obtaining existing services. Blocks to services described by participants across the state included the following:
* Significant gaps exist in
current insurance coverage for needed services.
* Participants do not know what services exist or how to find out about them.
* The current service system is complex and fragmented.
Appropriateness refers to the need to modify existing services to meet the needs of individuals with brain injury in general, and the unique needs of each individual client. Personal stories shared by participants poignantly illustrated the “lack of fit” of some traditional -- and vital -- services, such as vocational rehabilitation and support for returning to work.
The specific services requested by Town Meeting participants, arranged roughly in order of frequency, included:
4 rehabilitation and skills training for independent living
4 prevocational and employment opportunities
4 housing and assisted living options
4 social and recreational opportunities
4 support for transition following hospitalization
4 coordinated services and individual case management
4 appropriate educational services
4 improvements in inpatient and outpatient medical care/service options
4 advocacy leadership and individual advocacy training
4 respite care for families/caregivers
4 supports for independent living – personal care assistants, day treatment centers
4 access to supportive technology
4 transportation options
4 access to support and support groups for individuals and families
4 counseling and alcohol & drug treatment programs
NEXT STEPS
The results of the Town Meeting process will be used to:
·
develop a Statewide Action Plan for Brain Injury
Services in
·
guide the development of a Strategic Plan for
the
· guide the state and local advocacy efforts on behalf of individuals with brain injury and their families.
For more
information on the Town Meetings process and results, please contact the