Building Underserved Consumer Consensus Using the Concerns Report Method
Background
People with intellectual disabilities, brain injuries, and psychiatric disabilities make up a very small percent all consumers receiving services from centers for independent living.
Purpose and Anticipated Benefits
The focus of this project was to ask these underserved people to identify their independent living needs. Identified needs then can be used to develop interventions and accommodations that will result in increased and improved service.
Who
John Youngbauer, the Research and Training Center on Independent Living at the University of Kansas, worked with consumers from the Community Mental Retardation Centers, Kansas Head Injury Survivors Councils, and psychiatric disabilities self-advocacy groups throughout the state of Kansas to identify issues relating to their disabilities.
When
1995
Method
Letters were sent to each group to recruit one person who was either living independently or in the process of learning to live independently and who could talk about challenges in group discussions. In response, 121 participants were identified, and 83 returned the survey forms sent to them. The Concerns Report Method, which asks representative members of a community to report their concerns about specific issues are then put in a survey format and sent to other community members, was used. The initial 298-item survey asked respondents to rank issue’s importance and their satisfaction with community response to each issue. Participants also were asked to review 12 issues that the President’s Committee on Employment of People With Disabilities had generated in 1993.
Results
Strengths were discussed at each conference in detail, and, in most cases, qualifying information about each strength was obtained. As an example, persons with mental retardation stated, “I can obtain services for my needs on my own” as their highest-ranked strength. However, through discussion it was found that preliminary steps consulting with a trusted friend to find the right person to ask about a service, contacting that person, presenting the request, asking for assistance, and enlisting their help were all part of the process. The groups each identified their top six strengths (that is, high importance and high satisfaction) on the Concerns Report Survey:
Consumers with Mental Retardation (N=52)
1. I can obtain services for my needs on my own.
2. Landlords respect my privacy and property.
3. Store clerks are friendly and helpful to me.
4. I feel safe from physical harm by others.
5. I can get emergency personal care services, if needed.
6. The physical design of my place allows me to be independent.
Consumers with Brain Injury (N=32)
1. My family encourages me to be independent.
2. I can successfully speak for my own needs.
3. My family does not isolate me from the community.
4. Handicapped parking is available in shopping areas.
5. I receive social support from my family.
6. Healthcare providers treat me with dignity and respect.
Consumers with Psychiatric Disabilities (N=37)
1. I feel safe in my home.
2. My treatment has been helpful to me.
3. I have access to local news, happenings, and activities.
4. My mental healthcare providers will answer any questions about my disability or its treatment.
5. Good mental health services are available to me.
6. Independent living centers respect the needs of people from different cultural backgrounds.
The groups also identified community needs (that is, issues they ranked as high importance and low satisfaction on the Concerns Report Survey).
Consumers with Mental Retardation (N=52)
I. Financial assistance is not available for assistive devices not paid for by Medicare or Medicaid.
2. Transportation is not adequate or available at night.
3. Adequate employment opportunities are not available.
4. Reasonably priced assistive devices (for example, wheelchairs, braces, hearing aids etc.) are not available to purchase.
5. Transportation to and from events is not available on weekends or holidays
6. Schools do not teach all students to be sensitive and respect persons with disabilities.
Consumers with Brain Injury (N=32)
1. Adequate employment opportunities are not available.
2. Adequate career counseling is not available to people with brain injuries.
3. Accessible housing is not available at an affordable cost.
4. Affordable legal help is not available in cases of discrimination or social security appeals.
5. People with recent brain injury need more information about services and programs available to them.
6. Accessible and affordable emergency transportation is not available to persons with brain injuries.
Consumers with Psychiatric Disability (N=37)
1. A person cannot earn enough money at a job to make up for the loss of disability benefits.
2. Schools do not teach all students to be sensitive and respect persons with disabilities.
3. The media (radio, TV, movies, newspaper) do not portray persons with psychiatric disabilities in realistic ways.
4. Transportation to shopping, medical, arid recreation centers is not available when needed (especially at night and on weekends).
5. Most community members do not understand the needs of persons with psychiatric disabilities.
After the Concerns Reports and the President’s Committee issues were discussed, the group agreed on their top six issues in Kansas:
1. Meaningful jobs with good pay and benefits.
2. Healthcare that pays for medical, dental, and prescription services
3. Americans With Disabilities laws
4. School that prepare people for real jobs and teach others to treat all people with dignity
5. Accessible, affordable housing in safe neighborhoods
6. Community education that accurately portrays people with disabilities and eliminates stigma
Conclusion
While the Concerns Report Method did identify major concerns, prioritized concerns, and provided a forum for discussion, more items were needed to better represent the needs of persons from underserved and culturally diverse backgrounds. The wording of survey items, too, should have been more simplified. The rating scale, also, could have been in alternate formats for easer use of more diverse population.
Products
Youngbauer, J. G. (n.d.). Building consumer consensus on independent living using the Concerns Report. Lawrence, KS: Research and Training Center on Independent Living, University of Kansas.