Research Brief: Full Participation in Independent Living Concerns Report Survey

Research Questions

What concerns do people with disabilities have about their inclusion in society? Do people from emerging disability groups and those from traditional disability groups prioritize concerns similarly?

Purpose and Anticipated Benefits 

More information is needed as to the composition of people who are termed as having disabilities, especially those with “emerging” disabilities, such as multiple chemical sensitivity syndrome and chronic fatigue syndrome, to address fair representation in policy decisions.


Glen White, Dot Nary, and other University of Kansas researchers funded by the National Institute on Disability and Rehabilitation Research worked with 14 representatives from two national organizations (Association of Programs in Rural Independent Living and National Council on Independent Living), representatives of emerging disability groups, and other consumers who selected survey items from 300 suggestions. A total of 1,367 respondents returned the final 48-item survey. Of the respondents, 72% were female, 41% married, 20% divorced, 87% white, and 40% full- or part-time employees with an additional 8% self employed. Twenty-five percent reported $550 to $1,000 monthly incomes; 39% depended onSocial Security Disability Insurance. They reported 29 different disabilities with 50% having three or more disabilities. Multiple chemical sensitivity (32%) was the most frequently reported disability.




Using the Consumer Concerns Report Method in which a working group of independent living experts convened to choose disability concern survey items, the 48-item Full Participation in Independent Living National Survey with an additional 18 demographic questions addressed topics of concern, including consumer control, housing, health care, advocacy, community services and access, transportation, parenting, the media, personal assistance services, recreation, voting, assistive technology, peer counseling, education, employment, vocational rehabilitation, and center for independent living services. Item ratings were based on the highest and lowest percent of difference between importance and satisfaction. The researchers distributed the survey through disability groups, mailing lists, chat rooms, websites, and conference exhibit tables. They solicited responses on paper using Scantron forms with a Braille card (with a toll-free number to call for assistance), online, and by email. Upon request, both an email and paper and pencil version of the survey in Spanish were made available. While dissemination of this Spanish version did not result in the receipt of any responses, the request provided valuable information about persons wanting to be heard and about additional populations to include in the future. More than 1,300 people responded with all 50 states represented, plus the District of Columbia. Nary and White also solicited comments at two national conferences and through a national webcast.

Results: Top 10 Problems Reported (All Respondents)

  1. Not earning enough in salary and benefits to meet living needs
  2. Not getting the same opportunities as non-disabled applicants
  3. Lacking affordable coverage for the purchase of assistive technology
  4. Not being able to try a variety of assistive devices on trial basis before purchase
  5. Not having the same chances for advancement and promotion as non-disabled employees
  6. Not being identified fairly and accurately by the media
  7. Lacking affordable comprehensive health care
  8. Not having the service and support needed to obtain and succeed in employment
  9. Getting health care from insensitive providers
  10. Not having reasonable policies and practices related to purchase, repair, and replacement of assistive devices

Top 10 Progress Reports Reported (All Respondents)

  1. Having available voter registration
  2. Having accessible information and entertainment from the media (e.g., TV, radio, news, internet, etc.)
  3. Working with others for the rights of people with all types of disabilities/chronic health conditions
  4. Making own personal decisions about life
  5. Setting and pursuing own personal goals with or without help
  6. Speaking up for what is needed and wanted
  7. Accessing polling places in the community
  8. Being accepted as members of the community
  9. Having rights respected as a parent
  10. Being allowed to worship and participate to the extent that you choose


Those with traditional and emerging disabilities shared similar concerns with employment, vocational rehabilitation, and adequate salary with benefits the top concerns of people with traditional and emerging disabilities.

“The traditional and emerging disabled population continues to have high unemployment and underemployment rates. It remains among the poorest in the country,” said Dot Nary, Research and Training Center on Full Participation in Independent Living, a division of the Research and Training Center on Independent Living at the University of Kansas.

“Results indicate that there is need for increased collaboration between those working in employment services, vocational rehabilitation, and independent living to improve employment opportunities for people with disabilities and to ensure that all Americans with disabilities have the same opportunities for full participation as non-disabled people living in this nation,” Nary said.


“Despite passage of ground-breaking civil rights legislation, such as the Americans With Disabilities Act in 1990 and public policy aimed at reducing employment barriers for people with disabilities, such as the Reauthorization of the Rehabilitation Act in 2003, there remain substantial barriers to the ability of persons with a variety of disabilities to engage in substantial, gainful employment. While the independent living movement has contributed to significant improvements in the lives of people with disabilities, problems related to employment and access to resources remain severe.” (p. 76) (Nary, D. E., White, G. W., Budde, J. F., & Vo, H. Y. (2004). Identifying the employment and vocational rehabilitation concerns of people with traditional and emerging disabilities. Journal of Vocational Rehabilitation 20, 71-77).


Besides the  journal article cited previously, there were several presentations and two webcasts, including presentations at 2002 National Council on Independent Living conference;  “Employment for Persons with Emerging Disabilities: Barriers and Facilitators to Participation” at the 2003 national conference of the National Council on Independent Living, Washington, DC; meeting with David Keer, National Institute of Disability Rehabilitation Research (NIDRR) project director, Richard Johnson, NIDRR Scholar Project officer, Steven Tingus, NIDRR director, and Troy Justesen, associate director of the White House Office on Domestic Policy; September 2002 webcast conducted by the National Council on Independent Living ILNET program titled, “Full Participation in Independent Living: What Does it Mean?”;  November 2002 “Full Participation in Independent Living: Are We Making Progress?” webcast conducted by Research Information for Independent Living (a joint project of the RTC/IL at the University of Kansas and the Independent Research Utilization Project at TIRR in Houston); meeting with seven disability service providers and activists from Korea in November 2002 on site; presentation at summit meeting in Washington, DC, sponsored by the DRRP on Emerging Disability and Employment Outcomes under the Institute on Community Inclusion; “Independent Living Centers as Community Change Agents” presentation at the Great Plains ADA/IT Symposium in Kansas City in May 2003; presentation on access to health care services at the Kansas Cancer Partners’ Conference in Topeka, KS, in March 2003.

Additional resources

For more information about employment and vocational rehabilitation, check out these sites: