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Levels of compliance with federal requirements in independent living centers.

Levels of Compliance with Federal Requirements in Independent Living Centers

The number of programs delivering independent living services in this country has grown dramatically in the past 10 years. Estimated to be 52 in 1977, there are now well over 300 (ILRU Directory, 1987). The seminal concept for effective delivery of these services came from Berkeley, California, where the Berkeley Center for Independent Living was founded in the early 1970s by pioneering persons with severe disabilities to help others like themselves to live independently and to work toward a more accessible society. Fundamental to the Berkeley program were the concepts of consumer control at administrative and service delivery levels of program operations, a community-based focus, and a range of independent living services. Programs based on this model, now known as "centers for independent living", have been replicated throughout the nation with the assistance of federal funds. The Rehabilitation Act Amendments of 1978 authorized seed funding to develop programs based on the Berkeley model, this funding was a major factor enabling the phenomenal growth of this field. In the process, however, the center model has been replicated with considerable variance, and in some cases, with disregard for certain fundamental elements of the model, particularly consumer control.

The purpose of this article is to examine the current status of the "center" model in independent living. Material has been drawn from the ILRU National Database on Independent Living Programs to determine levels of compliance with both legislated and generally accepted criteria for centers, to compare characteristics of complying centers with non-complying programs, and to examine the implications of federal funding practices.(1) Criteria for Independent Living Centers

The first official statement of criteria for independent living centers is contained in Section 711 of the Rehabilitation Act Amendments of 1978. In Section 711 (a), it is stated that funds are provided for the establishment and operation of independent living centers and that applications for these funds must contain assurances that "handicapped individuals will be substantially involved in policy direction and management of such center, and will be employed by such center" (Section 711 (c)(1)). It further requires that centers "offer handicapped individuals a combination of independent living services" including, as appropriate, services from 14 broad categories (Section 711 (c)(2)).

Aware of the absence of operational definitions, the Rehabilitation Services Administration (RSA) followed the above amendments with a grant to the Independent Living Research Utilization (ILRU) program of Houston in 1977 to develop consensus definitions of program types. Using a group discussion and interview methodology with 15 national and international leaders in the independent living movement, definitions were developed for independent living, independent living programs, independent living centers, transitional programs, residential programs, and service providers. This 12-month process resulted in the following definitions of independent living program and independent living center:

An independent living program is a community-based program which has substantial consumer involvement, provides directly or coordinates indirectly through referral those services necessary to assist severely disabled individuals to increase self-determination and to minimize unnecessary dependence on others. Services that an independent living program must provide or coordinate through referral are housing; attendant care, readers and/or interpreters; and information about goods and services relevant to independent living. Other services that are either provided or coordinated by independent living programs include transportation provision or registry, peer counseling, advocacy or political action, independent living skills training, equipment maintenance and repair, and social-recreational services. (Frieden, Richards, Cole & Bailey, 1979, p.5).

An independent living center is a community-based non profit, non-residential program which is controlled by the disabled consumers it serves, provides directly or coordinates indirectly through referral those services which assist severely disabled individuals to increase personal self-determination and to minimize unnecessary dependence upon others. The minimum set of services that are provided by an independent living center are information and referral, independent living skills training, advocacy, and peer counseling (Frieden, Richards, Cole, & Bailey, 1979, p. 6).

In the years following this early effort, the independent living field experienced rapid growth. Of programs existing today, 55% began operations between 1978 and 1982. As the number of federally funded programs increased, the need for evaluation standards became apparent. In the Rehabilitation Act Amendments of 1984, Section 711(c)(3) was expanded to included 11 generally stated areas ("A through K") which were to be contained in each center's evaluation plan. These areas included descriptions of individuals served, services provided, sources of funding, allocation of funds according to service, consumer outcomes, consumer involvement in center operations, "capacity buildings activities," promotion of community awareness, outreach efforts, and new activities. The general nature of the "A through K" requirements makes them more useful for reporting than for program evaluation.

Attempts at establishing evaluation standards solidified when, in fall of 1984, RSA awarded a grant to Berkeley Planning Associates to develop a refined list of standards for ILCs and to conduct an evaluation of 156 programs receiving Title VII Part B funds. The 12 standards developed by Berkeley Planning Associates included elements of the original criteria from the 1978 amendments to the Rehabilitation Act, the ILRU definition of 1979, and the "A through K" guidelines from 1984. These standards were accepted by the National Council on the Handicapped in 1985 and are now referred to as the "NCH Standards" (Berkeley Planning Associates, 1986).

Efforts to operationalize these standards for application in the field began after a mandate stated in the 1986 reauthorization of the Rehabilitation Act which is: By July 1, 1988, the Commissioner of RSA is required to publish in the Federal Register the final form of indicators which independent living programs must use to achieve minimum compliance with the evaluation standards in subsection (e)(1), i.e., the NCH standards. The act also contains language which clarifies a key requirement regarding consumer control in Section 804 (a)(1)(C): "each center will have a board which is composed of a majority of handicapped individuals" (Rehabilitation Act, 1986, p. 34). A letter to Justin W. Dart, Jr., then Commissioner of RSA, from the sponsors of the act provides further clarification that this requirements relates specifically to governing boards and not to advisory boards (L. Weicker, T. Harkin, P. Simon, O. Hatch, R. Stafford, personal communication, June 2, 1987).

Reaching a definitive statement of performance, requirements for independent living centers is certainly in process. When the evaluation indicators are issued and programs receiving Title VII Part B funds are subjected to compliance reviews, a clearer picture will gradually emerge of general practice in the delivery of independent living services. However, an important question is being raised now in anticipation of the indicators: Where is independent living programming today and how much will current federally funded independent living programs need to change in order to maintain their eligibility for these funds once compliance requirements are issued?

The findings from a longitudinal study of independent living programs which is in progress at the ILRU Research and Training Center on Independent Living at TIRR offer useful insights into the status of this field. Drawing on these findings, this article attempts to address the following research questions:

In existing independent living programs: . What is the current level of compliance with criteria for independent living centers set forth in the Rehabilitation Act? . What characteristics distinguish programs which comply with these standards from those which do not? Methodology

Considerable effort was made to identify the total population of independent living programs in the United States and its territories in order to conduct this study. The primary source for this information was the ILRU Directory of Independent Living Programs (1986). This Directory, first compiled in 1977 and up-dated quarterly, contains listings of programs without regard to the source of their funding. Letters were sent to the commissioners of all 10 RSA regions with copies of Directory entries for their states, asking that they inform us of programs not listed. Several programs were added to the Directory as a result of this outreach effort.

An instrument used in the 1977 and 1984 surveys of independent living programs was refined and expanded, gathering data on program age, staffing, funding, services, characteristics of consumers, characteristics of board, service area, developmental activities, community activities and services, affiliation, involvement with networks, use of computers, and evaluation activities. It was pilot tested on 10 programs and further refined thereafter.

The finalized instrument was mailed in Summer 1986 to the 323 programs listed in the ILRU Directory at that time. Follow up for non-respondents included a second mailing after six weeks, and phone reminders after two and three months. A total of 167 surveys were received, of which four responses were not suitable for inclusion, leaving a sample size of 163 and a response rate of 50%. Clarifications and missing data were obtained through telephone contact. To obtain minimum essential data on the rest of the field, a one-page survey was sent to all non-respondents. Sixty-three of the brief surveys were returned, increasing the response rate by 20%.

Accuracy of data entry was ensured by cross-checking between data sheets and the original surveys. Outlying or uncharacteristic data were in some cases verified by a call to the responder or reinterpreted in light of other items on the survey.

To address the first research question related to levels of compliance, operational criteria for independent living centers were drawn from the Rehabilitation Act amendments of 1978, as clarified by the amendments of 1986 and the letter from the bill's Congressional sponsors. These criteria are: 1. 51% of governing board members are persons with disabilities, 2. at least one person with a disability is employed in a management role, 3. at least one person with a disability is employed at the center in a position other than management, and 4. at least two different independent living services are offered by the center.

Because there is a lack of clarity over whether "significant involvement" applies to management as well as policy direction, criterion 2 was left at "at least one person with a disability" rather than 51%. A "management role" was operationalized as a position involving supervision, direction, or coordination as a position involving supervision, direction, or coordination within a program. A list of administrative positions was requested on the survey and those which contained any of the above key words were counted along with the executive director to obtain the total number of management positions.

To address the second research question and distinguish between programs which comply and those that do not, variables were selected from the data set related to age of program, affiliation, involvement in networks, satellites, funding, size of community, staffing, numbers and characteristics of consumers, and numbers and types of services. Analyses were conducted using the Statistical Package for the Social Sciences (Norusis, M.J., 1986). Results


As portrayed in Table 1, only 46% of the programs in the sample are in compliance with the law using the above four criteria. Breaking this finding down into the separate criteria, of the 163 programs in the sample, 59% have a majority of persons with disabilities on their governing board, 70% have at least one disabled person in a management position, 87% employ at least one disabled person in a non-management position and 99% offer two or more services.

Of the programs that do not comply, 64% are only one criterion shy, 17% are two criteria shy, 17% are three criteria shy and 1% fail on all four criteria. A breakdown of the non-compliers reveals that 76% fail to meet the board criterion (of these, 24% have consumer-controlled advisory boards only and 76% have less than 51% consumers on the governing board), 54% fail to meet the management criterion, 23% fail to meet the non-management criterion, and 2% fail to meet the two or more services criterion.

A brief analysis of the non-respondents was conducted using data on the brief (one page) survey which was returned by 63 programs. Although some interpretation and extrapolation was necessary, it can be estimated that 46% of these programs meet the four compliance criteria. There is evidence, therefore, that the sample from which full-length surveys were received is representative of the field of independent living programs.


Analysis of characteristics which distinguish compliers from non-compliers revealed some notable findings in the area of funding. Table 2 shows that receipt of funds under Title VII Part B is reported by 68% of the sample, and of those, only 51% reach compliance on all four criteria. No relationship was found between compliance and whether or not Part B funds are received. Of those who receive these funds, there is no significant difference in the amount of Part B money received by compliers (mean = $134,084) and non-compliers (mean = $134,285).

Programs reporting receipt of Title VII Part A funds comprise 46% of the sample, and of those, only 56% meet all four criteria. As in Part B, no relationship was found between compliance and whether or not these funds are received. Of those who receive Part A funds, complying programs tend to receive larger amounts (mean = $40,399) than non-complying programs (mean = $32,656); however, the difference is not statistically significant.

This pattern of no difference in funding between compliers and non-compliers continued in other budgetary areas. No difference was found in total budget size nor in the ratio of granted funds to funds earned through fee for service or other business activities. Comparisons of compliers & non-compliers

Program status

Significantly more compliers are free-standing, private, non-profit corporations (84%) than non-compliers. For the remainder of the compliers, 13% are under a non-profit umbrella organization and only 3% are part of a government agency. Of the non-compliers, 43% are affiliated with larger non-profits and 21% are part of a government agency. There was no significant difference in the age of programs that do or do not comply. No difference was found in the presence of satellite offices or size of the community in which the program is located.

Compliers are twice as likely to be members of the National Council of Independent Living, however, there is no difference in involvement with regional, state, or local networks. Although the numbers of programs involved in the Association of Programs for Rural Independent Living is very small (only 6% of the sample), more than three-quarters of them do not meet all four criteria for compliance.

Staffing patterns

Compliers are more than three times more likely than non-compliers to have a person with a disability as executive director. Although staff size is comparable, complying programs have a much higher number of people with disabilities on staff than non-compliers. There is, however, no significant difference in the ratio of administrative staff to direct service staff or the number of volunteers working with the programs.

Services delivered

Table 3 shows that compliers engage in a much larger range of community activities and services, such as newsletters, public speakers bureau, disability awareness workshops, and barrier removal assistance than do non-compliers. They also offer a significantly broader range of direct consumer services, with the most dramatic differences being in the areas of advocacy, attendant referral, and counseling. There is no difference in the total number of direct service units or information and referral units delivered per month, or whether the services are delivered in the home or at the center.

Consumers served

Those programs which comply with the law serve a significantly broader range of categories of disabilities (orthopedic, neurologic, visual, hearing, cognitive, emotional, or chronic health disabilities) as shown in Table 4. Compliers report serving 45% more consumers per month than non-compliers. In terms of age, all programs serve very few children or adolescents and only a small percentage of persons 65 and over. The largest percent of persons served by non-complying programs fall into the 19-34 age range; however, complying centers have a more equal distribution of persons between the ages of 19 and 64. Without considering the size of community in which a program is located, there are no meaningful differences in whether the consumers come from the local community or a more distant location to receive services, although non-compliers have a slight tendency to serve more persons from other cities in the state. Discussion

Current levels of compliance with criteria for independent living centers set forth in the Rehabilitation Act are quite low. It was found that little more than half of the programs receiving Title VII funds meet the requirements of the law and that there is no relationship between compliance and the amount of Title VII funds received. Although this might be interpreted to reflect somewhat poorly on the stringency with which the federal government is implementing this section of the act, it might also be taken as a sign that independent living is still a very young concept and, as the newest and most radical comer on a very traditional scene, it is quite naturally experiencing a delay in having its basic tenets accepted and integrated into the service-providing system. The time for innovation and creativity in program development is still present.

The principle points of non-compliance are consumer involvement in board and management roles. An internal decision by RSA when funding first became available allowed advisory boards to substitute for governing boards in meeting the "significant involvement" requirement. This enabled state rehabilitation agencies and non-profit, umbrella organizations to receive Title VII funds, but has had the effect of diluting the requirement of consumer-controlled governance.

The issue of consumer-controlled management has been downplayed by both RSA and the independent living movement. The National Council of Independent Living does not specifically require its active members to demonstrate consumer control of management. This requirement accounts in whole or in part for 54% of the non-compliance, even using the most lenient possible interpretation of the criterion ("at least one person"). If independent living centers were to affirmatively seek managers with disabilities, some serious legal questions could arise given the lack of clarity or precedent on the legality of establishing disability as a personal or experience requirement for certain positions within programs receiving federal financial assistance.

The low level of compliance with "center" requirements for funding under Title VII of the Rehabilitation Act will undoubtedly have strong ramifications in the next few years as RSA develops and implements evaluation standards for independent living centers. If strict compliance criteria are suddenly enforced, a large number of worthy programs in midstage of development may lose their federal funding. Transition plans with strict time lines will be a necessity.

Programs which comply with the center model tend to have several desirable characteristics. They have a higher number of people with disabilities on staff, offer more services to the community, offer a broader range of direct consumer services, and serve considerably more people with a wider diversity of disability types than programs which do not comply. While these findings should not be causally linked, they do constitute a strong tendency that serves to justify requirements for consumer control.

In reviewing these findings, one major limitation of the study must be considered. Data were analyzed exactly as recorded on the survey forms, unless otherwise noted above. This allowed for considerable variance in interpretation of certain as yet undefined or unstandardized terms, particularly "consumer," "service unit," or any name given to a service category, such as advocacy, peer counseling, or independent living skills training. Although questions of board and management composition specifically asked about persons with disabilities, some programs consider parents and spouses as consumers and frequently include them in such listings, a practice which will no longer be allowed by RSA beginning October 1988 (Suter, 1988). This would serve to increase the chance of false positive finding. Although variation of interpretation exists across programs, individual programs tend to be consistent over time in their application of these terms, thereby enhancing the replicability of this study.

This study has served to document the wide diversity in adherence to the "center" model in independent living that many have observed. Such diversity, while indicating that programs are probably meeting the ideal of flexibility and responsiveness to local needs, has served to subordinate some of the ideals of the independent living movement, particularly its cornerstone -- consumer control. This diversity will prove to be problematic in questions of quality control and standardization as requirements for federal funding are more strongly enforced.

The task at hand is to refine the system of federal funding which constitutes the sustenance of most independent living centers so that it preserves the center model yet allows responsiveness to local needs and available resources. In this way the philosophy of independent living will have maximum impact on the traditions it seeks to change. Footnotes

(1)This work was sponsored in part by funds from the National Institute for Rehabilitation and Research to the ILRU Research and Training Center on Independent Living at TIRR (G0085C3505) and the Rehabilitation Research and Training Center for the Rehabilitation of Persons with Spinal Cord Dysfunction at TIRR (G008300044).

Table : Compliance with Title VII

Table : Receipt of Title VII Funds and Compliance

Table : Comparison of Programs in Compliance and Not in Compliance in terms of Services Delivered

Table : Comparison of Programs in Compliance and Not in Compliance in terms of Consumers Served
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Author:Zhu, Yilin
Publication:The Journal of Rehabilitation
Date:Apr 1, 1989
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