Independent Living Program and Service Needs
At the time of this survey, little information was available on centers for independent living (also known as independent living centers) and their needs because most independent living programs were launched after 1980.
Purpose and Anticipated Benefits
The independent living needs survey was designed to identify technology needs for independent living programs to determine what they had and what they needed.
Michael Jones, Research and Training Center on Independent Living (RTC/IL) at the University of Kansas, and Ray Petty, a legislative liaison Kansas Advisory Committee for Employment of the Handicapped, conducted this survey with the advisement of Mark Mathews and with feedback from Tom Seekins and Steve Fawcett, all with the RTC/IL.
Development of the technology needs survey occurred in three steps. First, a comprehensive index of technology needs related to consumer services and independent living program organization was compiled. This index contained 320 potential survey items selected by reviewing previous needs assessment surveys and literature, requests for technical assistance, and correspondence with consumers, service providers, and administrators.
Next, a preliminary survey was developed from this index. A working group of consumers, service providers and researchers reviewed the index to select items that accurately reflected the needs for technology development. This 124-item survey was then distributed to a randomly selected national sample of 30 independent living programs to verify that it contained items representing the most universally recognized technology needs.
Both the preliminary and final surveys consisted of two parts, each representing needs related to consumer services and to program organization. Survey items were further grouped by categories of service or organization (for example, six items grouped under the category of Program Evaluation). On the preliminary survey, a blank space was provided in each category for respondents to suggest additional items.
Respondents answered two questions for each item: 1.) How important is this service or activity?; 2) How satisfied are you with the available technology for providing this service, conducting this activity, etc.? Each question was answered on a five-point linear scale ranging from very important! satisfied” to ‘not important/satisfied.” Average importance and satisfaction scores were computed for each item.
The final survey was developed based on the ratings of the 13 respondents who completed the preliminary survey. Items rated low in importance and high in satisfaction by this group were deleted; other items were added or refined based on the respondents’ suggestions. The final survey included 72 items related to services and 41 items related to program organization.
The final survey was mailed to 345 programs on a master list, including all center for independent livings funded by Title VII, Part B of P.L. 95-602, independent living programs that are members of the National Coalition of Independent Living Programs, and other programs that report providing independent living services. Along with the survey, respondents were asked to furnish demographic data about their programs, including the length of time in operation, population size of the city/town that they were located, type and number of consumers served, type and number of staff, types of services provided, and extent to which consumers controlled the program’s operation.
Of the 345 surveys mailed, 18 were returned as undeliverable or because the program was no longer in operation. A total of 128 surveys were completed and returned in time for inclusion in the analysis presented here; thus 39% of the surveys actually distributed were returned.
The programs reported an average length of time in operation of five years, with a range of seven months to 55 years; only 10 programs had been operating for 10 years or longer. Forty percent of the programs were in areas with a population of over 500,000; 46% were in areas with populations ranging from 50,000 to 500,000. Only 8% of the programs were located in communities of less than 25,000. Four percent of the programs were campus-style residential facilities.
The responding programs provided services to an average of 428 consumers per year with a reported range of 15 to 4,000 consumers per year. The most frequently served disability group was people with cerebral palsy (served by 86% of the programs), followed by people with brain injuries (80%) and spinal cord injuries (74%). The elderly were served by the fewest programs (57%).
The most common direct service provided was information and referral, followed by individual advocacy, and community public relations and outreach. The most common indirect service was medical treatment and services, followed by vocational training, vocational placement and vehicle modification.
After being asked three questions about consumer involvement and control of their operation, programs reported that, on the average, consumers comprised 50% of the membership of governing boards (range = 0-100%). An average of 41% of the staff of programs had disabilities (range 0-100%). Sixty-one percent of the programs reported they were controlled primarily by consumers, and 32% of the programs by persons who were not disabled; 7% of the sample did not respond to this question.
Demographic data reported by these programs suggested considerable diversity in the programs providing independent living services. For example, programs varied in areas such as length of operation, services provided and degree of consumer involvement and control indicates that some of the respondents are not independent living centers according to the generally accepted definition. Because there may be important programmatic and/or philosophical differences between centers for independent living and other programs providing independent living services, the perceived technology needs of these groups might have varied as well. Since any differences would be obscured in a single analysis across all respondents, a second analysis for centers for independent living only was conducted. This analysis was conducted with the responses of only those programs funded by Title VII and therefore met the statutory definition of a center for independent living; eighty-one (63°/p) of the responding programs are Title VI-funded centers for independent living.
Regarding services for consumers with disabilities, the top 10 strengths (in order of ranking) were information on the availability of community referral services, medical care, personal skills training, assistance in applying for services provided by social agencies, homemaking skills training, assistance in personal budgeting and money management, advocacy for individual consumers, advocacy for consumers in general, assisting in locating and applying for financial, assistance, and access to recreational areas and parks
Problems (in order of ranking) were integration of transportation services for all persons with a disability in the community, variety of housing options suitable to the needs of consumers, access to public transit services, emergency personal care services, preventative health care and maintenance, job training programs directed to specific employment opportunities, on-the-job training opportunities for consumers, effective job placement services, follow-through procedures in vocational training to facilitate job success, and community support for issues related to having a disability and independent living.
Independent living programs were relatively satisfied with the existing technology for many of the services they provide: items related to the three services provided by the greatest number of programs — information and referral, independent living skills training, advocacy — were rated as strengths. The major problem noted by respondents related to technology for vocational training and placement of consumers; this finding was somewhat surprising since independent living services are chiefly concerned with areas other than vocational training and employment and since few of the programs provide this service directly. This finding reflected the overall employment problem for people with disabilities, or a general dissatisfaction with existing vocational rehabilitation services. Another prominent area of concern was community accessibility and support, particularly transportation services and housing options for consumers.
Programs expressed relative satisfaction with existing technology related to staffing; however, they also noted that staffing levels were less than optimal. The programs were satisfied with methods for promoting consumer involvement as staff and board members, and with procedures for fiscal management/accountability, and case management. The major problem area appeared to be program evaluation methods, followed by procedures for improving funding, and community development and outreach. As may be expected from the individual item analysis, vocational training opportunities emerged as the top problem area related to services, and program evaluation as the top problem area in organization. This analysis also reflected programs’ dissatisfaction with existing methods for community outreach services.
The overall importance score for all categories was 87%. In addition, the respondents appeared to be only moderately satisfied with the existing technology for independent living, with the technology in some areas (for example, 69% satisfaction with staffing/administrative support) being clearly more advanced than in others (e.g., 38% satisfaction with vocational training opportunities). In general, it would appear that technology development is a higher priority for consumer services than for program organization.
Although centers for independent living and other programs providing independent living services varied on a number of dimensions, they appeared to agree on the priorities for technology development. The number one priority expressed in this survey was for improved technology in vocational training and employment. It is also important to note that many of the remaining priorities related directly or indirectly to community change. Many top problems noted related to action in and by the community (for example, improved transportation and housing, greater community support and resources for independent living, greater consumer involvement in the community) rather than to specific services for consumers. Finally, the respondents voiced a need for improved measures of their own effectiveness and a more secure base of resources.
Fostering and encouraging program strengths should be a future research consideration. Future research also might focus on clarifying why program strengths such as referral service, self-helps skills training, and medical care are considered strengths and also sharing what centers have learning with other services and other advocacy organizations.
Jones, M. L., Petty, C.R., Bolles, C., Bolles, & Mathews, R.M. (1986, June). Independent living: A survey of program and service needs. Rehabilitation Counseling, 278-283;
Research and Training Center on Independent Living, University of Kansas. (1983). Survey of technology needs in independent living. Research and Training Center on Independent Living Forum [newsletter article].