Impact of Centers for Independent Living on Consumers and Community
The Office of Special Education and Rehabilitation Services required a set of standards be developed for a national center for independent living evaluation. These standards were based on 10 questions asked by the U.S. Congress, who wanted to measure the impact of the independent living programs in the 1984 Amendments for Title VII, Part B of the Rehabilitation Act of 1973.
Purpose and Anticipated Benefits
Developing standards would both expand the national evaluation effort and serve as a structure to define centers for independent living.
The Research and Training Center on Independent Living at the University of Kansas research team of James Budde (seen in photo), Ray Petty, Christopher Nelson, and Richard Couch along with staff from Independence, Incorporated; The League of Human Dignity; and the Virginia Vocational Rehabilitation Department worked on developing a system of evaluation standards that was later developed into a software system by Budde along with Jennifer Lattimore and Darwin Eakins, both of the University of Kansas.
Initially, the researchers developed a model evaluation system. Then they realized they needed one model to evaluate the centers’ impact on the community and a second model was needed to evaluate the centers’ impact on consumers. The consumer model measured impact by comparing common consumer goals with goals achieved and also by comparing changes in option when they first get service and subsequent times after. The next step involved identifying 109 general categories of independent living. These categories were used on a questionnaire that asked respondents to rate each category on philosophical importance, consumer needs importance, center role importance, and overall importance. After testing at three centers for independent living and an extensive review and comment process, the standards were approved by the National Council on the Handicapped (which was later renamed the National Institute on Disability and Rehabilitation Research) and then developed into a comprehensive set of evaluation questions. These questions were included in surveys and site-visit protocols for the national center for independent living evaluation.
Evaluation data also showed a high level of compliance with each standard, thus indicating that the standards reflected what centers actually do. Although there was substantial compliance with the standards across the center for independent living network, centers varied widely in how they met the standards. Starting with philosophy, the overall purpose of the philosophy standard was to ensure that key elements of independent living philosophy were incorporated into the center structure, operations, and service approaches. Centers generally stressed their philosophical concurrence with all elements of the philosophy standard (Standard 1). Community agencies also gave high ratings to centers in terms of how they adhered to the philosophy standard. However, these ratings were usually not as high as self-reports from the centers. Consumer control over policy, as measured by consumer participation in center boards of directors and administration, appeared to be quite strong. The average rate of participation by persons with disabilities on center boards was 49%. Further, 51% of center directors had a disability. However, site visit reports indicated that centers varied greatly in their degree of consumer control and how consumer and disability were defined.
Centers have strongly emphasized consumer-oriented service concepts, and results showed more than 50% of consumers surveyed reported that they had set their own goals or chosen their own services. A large number of consumers also worked with staff who had disabilities at centers. Urban centers with larger budgets and disabled directors were more likely to have consumers who claimed they controlled their objectives and services. In addition, consumers from free-standing centers with boards that had a majority of members with disabilities were more likely to report working with staff who had disabilities in a peer relationship.
All the centers claimed they devoted at least some time to ensuring their communities were accessible to people with disabilities. More than 70% of consumers surveyed reported their center’s own facilities and services were accessible as measured by at least one indicator. Finally, centers generally provided services to a wide range of disability groups. No one disability group was underrepresented among center consumers when compared to the incidence of that disability in a national sample.
The target population standard ensured that centers target a range of disability groups and provide at least information and referral to all disabled individuals regardless of type of disability. Although individuals with orthopedic impairments predominated among the consumer population, centers served many with other kinds of primary disabilities. More than half (57%) of the consumers surveyed among 36 sample centers were severely disabled, while another indicator shows that two-thirds (75%) of the consumers would be considered severely disabled.
The individuals in the study’s consumer sample were largely white and of low economic status. More than two-thirds (70%) were currently or had been vocational rehabilitation clients, and half (53%) did not live in their own homes. There were some statistically significant differences between those consumers who sought center assistance primarily to increase their independence and those who were trying to maintain current levels of independence. “Gain” clients tended to be younger, and they received certain kinds of services more frequently at the center itself. Maintenance clients generally became disabled after the age of 22. About 13% of center consumers resided in institutions at the time of their first contact with the center. This indicated that at least some centers were targeting an institutionalized population for services.
A large majority (59%) of centers were setting specific objectives for types and numbers of disabilities to be served. Nearly half (49%) were serving a broad range of disabilities, and nearly all (88%) targeted more than one disability group. Freestanding centers were significantly more likely to serve a wider range of disabilities. Single-disability centers tended to concentrate on individuals with visual impairments. Site visits revealed that centers employed a variety of processes and sets of criteria to determine consumer eligibility for services. These decisions were sometimes influenced by the center’s funding agency or an umbrella agency. One issue that many centers were confronting was whether to serve all those who requested assistance or to target particular groups of people who may not be able to initiate contact with a center on their own.
The consumer achievement standard emphasizes that the primary purpose of centers is to contribute to individuals’ achievement of independent living goals. This standard measured consumer achievement was reported by all centers responding to the mail survey and by consumers from 36 sample sites. Centers reported more than 58,000 outcomes across 15 areas. The most frequently reported achievement was securing services for consumers through referral to other programs. Almost 75% of the consumer respondents reported at least one gain in housing, education, employment, income, or transportation while in contact with a center, and 69% reported a more independent housing situation (the area with the greatest gains). Approximately 90% of the consumers stated they had made at least one gain related to four additional areas probed by the study: personal and social changes; increased knowledge of the type likely to facilitate independent living; increased skills in meeting their own needs; and the receipt of aids, benefits, and services. The most frequently reported achievements were within the personal/social change cluster.
Bivariate analyses showed that only age and vocational rehabilitation status — of the consumer characteristics tested — were statistically significant in relation to consumer-reported outcomes. The nature of the consumer’s contact with a center—frequency, location, and type of services received — appears to have made the greatest difference in the level of outcome achievement. In addition, ease of accessibility to the center and disabled service delivery staff were significantly related to higher consumer outcomes. According to multivariate analysis, services received and service characteristics also were the most important factors contributing to consumer outcomes. In particular, housing services, case management, and frequent and personal contact with the center had the most consistent effects on a wide range of outcomes. These analyses found that centers were effective for a broad range of consumers both in increasing and maintaining their independence. Generally, except for vocational rehabilitation client status and residence in a supervised setting (both characteristics leading to higher achievement), consumer characteristics did not consistently affect a broad range of outcomes. Finally, while centers with a greater degree of consumer participation in service delivery reported higher outcomes, the data regarding the relationship of directors with disabilities and consumer-controlled boards to outcomes proved inconclusive.
Standard 4 required centers to develop a community’s social and physical environment to enable disabled individuals to live independently. Without appropriate options, these individuals may be restricted to dependency upon families or nursing homes. Overall, centers reported 27,145 community impacts across the outcome areas. On the average, 66% of the centers reported outcomes in community development areas applicable to their programs. Not surprisingly, centers that specifically gave priority to some kinds of community development areas were more likely to achieve impacts in those areas. There was a statistically significant relationship between impacts and such goals as barrier reduction, recreation, personal care, and communication. In addition, bivariate analysis showed that centers with the following characteristics reported higher levels of impact in at least some areas: a nonrural setting, a disabled director, at least half the staff with disabilities, a wide range of disabilities served, a greater community development focus, and a stronger independent living philosophy. Multivariate analyses showed that free-standing status, a larger budget, experience, a smaller service area, philosophy, and financial and planning management capabilities all related to higher center achievement.
Among other community agencies surveyed in the centers’ locales, there was greatest agreement that centers had substantial impacts in the areas of personal care (63%), disability awareness (59%), and transportation (45%). Housing, consumer involvement, and barrier removal were also areas that other agencies believed centers had affected.
Although the service standard was not intended to affect the diversity of services offered, it did indicate that centers should offer assistance that supports the independent living goals of persons with disabilities and their families. Under this standard, three services were designated as “core” services to be provided by all centers: advocacy, independent living skills training, and peer counseling. All three have been identified as essential support mechanisms for persons seeking to live independently. In addition, centers may offer a range of other types of services that match the particular needs of their service locale. Centers appeared to be highly responsive to the requirements of Standard 5. The majority of centers provided the three core services. Moreover, there was extensive service provision in such areas as housing, equipment, transportation, personal care assistance, and social/recreation.
While the majority of centers offered the key services, sometimes the frequency of provision was strongly influenced by other factors. Rural centers, for example, tended to provide a narrower range of services than other centers. Centers with a larger percentage of staff with disabilities were more likely to provide peer counseling. Also, centers with larger numbers of consumers more frequently provided attendant/ homemaker services.
This standard reflects the need for information about issues, options, and resources that influence the ability of persons with disabilities to achieve independence. Under this standard, centers were required to provide information and referral assistance to any individual seeking to learn about resources for independent living. Regardless of level of funding, organizational structure, or location, most Part B centers have provided extensive information and referral services. Over 80% of the sample provided information and referral services, and over 60% of the consumer sample reported receiving information and referral assistance. Comparisons across different types showed that although the majority of all types of centers provided information and referral services, not all types of centers were equally likely to provide information and referral. Centers with a majority of board members with disabilities were more likely to provide information and referral services (89%) than those with fewer board members with disabilities (78%). Similarly, centers with a majority of staff with disabilities were more likely to provide information and referral (90%) than those with fewer staff with disabilities (79%). Also, centers that were direct grantees were more likely to provide information and referral (96%) than those subcontracting with Vocational Rehabilitation (81%).
Centers also established referral relationships with a wide variety of agencies. Some centers had a fully developed information and referral system with staff specialists and centralized resource materials; most had a more informal mode in which all service staff assumed responsibility for responding to all. In both cases, information and referral also served as an intake mechanism for consumers seeking assistance.
Standard 7 called on centers to develop activities and services to expand community options for persons with disabilities. Under Standard 7, centers were expected to be active leaders in organizations of persons with disabilities, or, if such organizations do not exist, help foster and provide leadership for the disability community. On the average, centers devoted 25% of their efforts to community-oriented activities. Nearly one-third (31%) allocated more than 30% of their resources to catalytic activities in the community. Of the community agencies surveyed, 74% rated their local centers as highly effective advocates for persons with disabilities (“4’’ or “5” on a 5-point scale), and nearly 56% reported that contact with a center led to an increase in their
While the highest number of agencies (75%) reported they referred consumers to a center, the second most frequently reported relationship (60%) was the receipt by the agency of technical assistance and information from the center. Centers’ most frequently reported relationships also were coordination of service delivery with other providers and provision of information and technical assistance.
While it is difficult to assess the results of center outreach efforts, survey results showed that 62% of the consumers learned about centers from community agencies. This indicated that other organizations have been informed about centers and that they have some degree of confidence in them. Moreover, the overall distribution of center consumers by disability approximated the national distribution of disabilities among the population (see Standard I).
Standard 8, which involved consumer involvement, proposed that substantial consumer participation in key management, service delivery, and policy-related roles comprise an integral part of center practice. Historically, service systems involved with persons with severe disabilities have assumed that professionals can better identify appropriate service needs of patients or consumers. Standard 8 was developed to provide guidelines for consumer involvement in the articulation and actualization of independent living programming. It presented the further possibility of centers providing career opportunities and employment training for individuals with severe disabilities. Study findings indicated considerable participation of persons with disabilities in key management, decision-making, and other staff and volunteer roles. On a 5-point scale, centers rated the importance of consumer involvement at levels of (a) 4.0 in relation to controlling the policy direction and management of centers, (b) 4.2 in establishing service priorities, (c) 3.7 in managing center operations, and (d) 4.3 in participation in important staff roles. Community agencies surveyed confirmed center commitment by rating these same aspects as major emphases in local centers at an average 3.9 level. Consumers indicated, with a mean response of 4.3, that persons with disabilities were involved in key staff and management positions. Thirty-two percent of consumers had assisted in center operations through paid or volunteer positions.
Across all centers, persons with disabilities comprised more than half (52%) of the total members of boards of directors; 72% of advisory board members; 62% of center directors; 51% of total staff (including administration, direct service, support, and other staff); and a majority (58%) of volunteers. It should be noted, however, that at one extreme of the respondents surveyed, centers existed with few or no consumer representatives. Recruiting and training persons with disabilities who were highly qualified or have potential for skill development to fill key decision-making and staff positions remained a critical issue for centers.
The program and financial standard created a clear expectation that centers would engage in annual and 3-year planning activities that will help establish priorities and internal standards of accountability. Under this standard, centers were expected to have a written mission or goal statement. They also were expected to develop specific work plans, service priorities and objectives, overall service plans, and financial projections. Most centers (82%) engaged in formal annual planning procedures. Site visit interviews revealed that boards of directors generally participated in this process. In some cases, they took the lead and in others followed staff recommendations. Formal planning was often conducted in the context of applying for grants.
Nearly all centers (97%) also reported the development of written mission or goal statements that reflected independent living philosophy. Based on site visit findings, it appears that most board members, administrators, and staff understood independent living philosophy and its relationship to their center’s overall goal. About 73% of the centers prepared written work plans with time lines for achieving objectives. These plans were frequently developed as part of grant applications for funds to provide new services. As researchers observed in the field, the quality of these work plans varied considerably. Some centers developed tasks, staff assignments, and time lines in great detail. Others prepared rather perfunctory plans.
Some centers reported during site visits that they considered defining specific objectives for numbers and disabilities of individuals to be served as inappropriate for their programs. Their intent was simply to meet the demand in the local community. Thus, it is not surprising that fewer centers (59%) reported using this procedure. Many centers indicated during site visits that specific objectives typically were created only to meet grant requirements and were not widely used as a planning tool. In addition, very few of the centers (27%) developed 3-year plans for services and consumers to be served. However, nearly all the respondent centers (92%) prepared annual service priorities and identified needs to be addressed. These priorities often reflected the background of center personnel, the needs of the broad population with disabilities, and gaps in service provision by other providers.
Nearly all centers (94%) also could provide written descriptions of their services and service delivery procedures. These descriptions frequently were in the form of brochures. They identified each service and gave a brief description of the center’s service delivery philosophy. Some centers developed elaborate procedures manuals based on VR procedures, although, in general, manuals were not commonly found. In addition, most centers (88%) reported that they had written policies and procedures for board and staff that specified the roles and responsibilities of each.
Annual budget projections were prepared by nearly all centers (98%). However, many fewer (35%) conducted long-term budget projections. Administrators reported during site visits that funding opportunities changed so frequently that long-term projections were often not used. Instead, centers must look for funding opportunities and take advantage of them whenever possible.
The organizational principles that comprise Standard 10 provide the foundation for the successful management and structuring of centers for independent living. Research in organizational management has highlighted the importance of these basic principles that enhance communication between administration, boards and staff, delineate lines of authority, protect personnel rights, and encourage on-going education and training of involved personnel. These organizational practices were critical to creating an environment for successful service provision, and thus, overall center accomplishments. Standard 10 attempted to illustrate the basic components necessary for running centers in an equitable, responsible, and well-organized manner. Center survey responses indicated that a high percentage of centers for independent living used personnel management practices. Eighty-seven percent of respondent centers followed six or more of eight management procedures. The procedures included written personnel policies and procedures; job descriptions; charts showing job responsibilities, authority, and supervision; center-supported staff training and development; affirmative action policies; yearly written personnel performance evaluations for all staff; and so on. The least prevalent practice was center-supported training and development of boards of directors and staff (73%). This, perhaps, reflected the fact that a large number of centers were at a fairly early stage of organizational development. Responses ranged from 88% to 100% on use of all other personnel management procedures.
The fiscal standard probes whether centers have conventional practices and financial information systems in place that foster sound fiscal handling of funds, adequate planning and accountability to those governments and taxpayers that have provided the funds. Fiscal management should make evaluation and planning more useful by permitting centers to understand the actual unit costs of services being proposed for delivery and the costs of achieving different consumer impacts. Centers varied in their participation in resource development activities. Almost all centers engaged in grant development (96%). Interviews during site visits revealed that because of the uncertainty of their funding bases from one year to the next, some centers were putting a disproportionate amount of effort into fundraising. As a result, direct services may have suffered in some of these centers.
The large majority (73%) had established fee-for-service agreements, including development of copayment schedules or contracts with other agencies (Vocational Rehabilitation, nursing homes, health agencies, etc.). However, not all these centers had the necessary information on how much their services cost so they could implement their financial systems effectively. A surprisingly large minority (37%) were engaged in business development. At least one center was seriously exploring the possibilities of a for-profit business. Another center was utilizing direct mail solicitation and membership drives.
Two different indicators of fiscal management practices were used in exploring which centers were most likely to have good financial practices and systems—reported ability to collect cost data by service area and ability to generate data on cost per consumer. There was also a strong relationship between the number of years of operation and capability of the center’s financial management system. Seventy-nine percent of centers operating for more than six years could determine cost by service, and 68% of these older centers could determine cost by consumers.
Centers with computerized financial information were much more likely to determine cost per service (70% versus 53% of centers without computerized systems) and were also more likely to be able to measure cost per consumer (55% versus 40%). In sum, if each center developed its own cost accounting system for service components, there would be major gains for center management and financial accountability. Such systems would be even more valuable if standard service categories and units of service were developed and adopted across all centers.
This standard ensures that overall evaluation (1) covers demographics, impacts on community, and impacts on consumers; (2) requires adequate case management components; (3) requires adequate management, fiscal, and legal reporting; and (4) ensures that consumers were directly involved in the evaluation processes. Centers varied in how they conducted their evaluations, especially their methods used to determine units of services. Different centers defined units of service as hours or minutes of services provided, contacts, repairs or equipment loans, rides or trips, and so on.
The percentage was high (99%) for centers that used progress reports and written plans. Only 75%, however, achieved their goals or provided services as planned. Case records provided adequate data on individuals, but there was a lack of instruments and systems to evaluate actual consumer and community development outcomes. All consumers cannot be involved in all levels of evaluation. The 7% figure of consumer involvement in centers for independent living is a higher percentage of consumer involvement than is found in other rehabilitation service agencies.
Centers for independent living needed their own evaluation system that reflected more emphasis on consumer control, community integration, community option development, barrier removal development, and management impacts.
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