Independent living programs: impact of program age, consumer control, and budget on program operation.

Independent Living Programs: The Impact of Program Age, Consumer Control, and Budget on Program Operation

The number of programs delivering independent living services in this country has grown from an estimated 52 in 1977 to over 300 in 1986. the seminal concept for delivery of these services came from Berkeley, California where the Berkeley Center for Independent Living was founded in the early 1970s (Zukas, 1975). The founders were persons with severe disabilities who wanted to help others like themselves to live independently and to work toward a more accessible society. Independent living programs based on this model have been replicated throughout the nation with the assistance of federal funds.

EVen after ten years of phenomenal growth and development in this field there is still little research describing independent living programs (ILPs) or investigating independent variables that affect ILPs. The purpose of this article is to 1) describe ILPs nationwide and 2) examine three variables that might affect their operations. These objectives will be met by presenting the results of a national survey and then discussing how age, consumer control, and budget size affect operations of ILPs.

Review of Previous Studies of ILPs

There has been little systematic research examining characterictics of ILPs. Most of the literature appeared very early in the evolution of the independent living program model and took the form of conceptual presentations (Zukas, 1975; Heumann, 1977); evaluations of programs in particular states, such as California (Hiehle & Robins, 1982; Stoddard, Katsuranis, Toms, & Finnegan, 1980), Washington (Clowers, Haley, Unti, & Feiss, 1979; University of Washington, 1982; Wilkerson, Weinhouse, & Jamero, 1982), Massachusetts (Bartels, 1978; Fay et al., 1977), and Illinois (Jeffers, 1978); and summaries of regional activities, such as the West Coast (Brown, 1978) and New England (Driscoll, Marquis, Corcoran, & Fay, 1978). Several studies had a national focus and are primarily descriptive and non-empirical (Frieden, 1978; Institute on Rehabilitation Issues, 1980) or analytic from a program evaluation perspective (Muzzio, LaRocca, Koshel, Dwiman, Chapman, & Gutowski, 1979; Frieden & Nosek, 1985).

Empirical approaches to the study of ILPs at the national level began with the presentation of consensus definitions and comparisons of various program models (Frieden, Richards, Cole & Bailey, 1979), with a follow-up national survey (ILRU Registry, 1984 and analysis (Veerkamp, 1984). Further empirical work was spurred by the 1984 Amendments to the Rehabilitation Act of 1973 which required an evaluation of the performance of ILPs which receive Title VII Part B funds. The final report (Berkeley) Planning Associates, 1985) constituted the most comprehensive examination of these programs at the time, covering program characteristics, consumer outcomes, and community impact. A subsequent survey by the Independent Living Research Utilization program (ILRU) provided data for the formation of the ILRU National Database on Independent Living Programs, upon which several analytic activities were conducted, including a broad look at the general tendencies in this type of programming (Nosek, Jones, Roth, & Zhu, submitted), and an examination of the relationship between adherence to the independent living "center" model and levels of compliance with Federal requirements for the receipt of Title VII Part B funding (Nosek, Jones, Roth, & Zhu, in press). Examples of other recent empirical analyses include a study by Jones, Petty, Bolles, and Mathews (1986), which surveyed independent living programs and their service needs, a study of independent living program services for older persons with disabilities by Genskow (1988), and a survey of the extent to which independent living programs serve persons with cognitive impairments by Jones, White, Ulicny, and Mathews (1988).

To build upon existing general descriptive studies of selected ILPs and empirical examinations of services and service populations, the current effort examines a national sample and targets specific questions about relationships among program characteristics. The following research questions are posed in preparation for future investigations of the longitudinal development of independent living programming.

Independent Variables That Affect ILPs

The aurthors hypothesiezed that three variables will affect the operation of ILPs. First, age of the program should affect how an ILP functions. The age of the ILP indicates the period of time that it started operations. Three distinct periods of time exist in which ILPs were established: up to and including 1978, 1979-1982, and 1983-present. ILPs started before 1979 began operations before federal funding was prevalent (having emerged directly out of the grassroots movement with little if any government funding) and would be expected to have the strongest advocacy component, a clearly defined constituency, and the most stable and diverse funding base. ILPs starting operations between 1979 and 1982 have, for the most part, had full benefit of federal funding yet had time to explore alternative sources of funding and refine program operations. Finally, ILPs beginning operations after 1983 have entered into a funding atmosphere which is tenuous at best with a semi-standardized program model. Thus, the age of an ILP should affect the broadness of its consumer constituency, the diversity of funding, the extent of advocacy activities, and the general rate of delivery of services as reflected in the amount of information and referral given to disabled individuals.

Second, consumer control should affect operation of ILPs. Consumer control is central to the philosophy of the independent living movement and is measured by the degree to which consumers, meaning persons with disabilities, hold policy making, managerial, and staff positions and the degree to which consumers of services are involved in determining their plan of service provision. Of all these measures of consumer control, the strongest and most representatives is the percent of consumers who sit on the board of directors, the primary body of determining policy and funding. It is projected that the number of persons with disabilities on the board will affect the manner in which the program is staffed, its activities, its relationship to organizational networks, and its funding patterns. The salience of this variable in measuring consumer control is reflected in the independent living center evaluation indicators which are being developed by the Rehabilitation Services Administration and which will bequire organizations to have a principal governing body composed of 51% persons with disabilities to be eligible to receive Title VII Part B funds (Rehabilitation services Administration, 1988).

Third, the size of the budget of an ILP should also affect its operations: the larger the funding base, the largest the capacity to meet the needs of the community and individuals. The budget should dictate both the variety of services offered and the amount of services that are available delivered.

Hypotheses

The above discussion suggests the following hypotheses which will be tested by this study.

Hypothesis 1

Older programs will

* Serve more groups of disabled individuals,

* have more diverse funding,

* engage in more advocacy activities,

* engage in more information and referral activities.

Hypothesis 2

Programs that are controlled by consumers will

* have more disabled individuals on staff,

* engage in more advocacy activities,

* be members of more networks,

* have a greater proportion of government funds than local funds.

Hypothesis 3

Programs with larger budgets will

* tend to offer a variety of services,

* tend to offer a larger amount of services,

* have larger staffs,

* be located in larger communities,

* publish annual reports,

* publish newsletters.

Method

The methodology of this study can be understood by examinating the following areas: 1) identification of independent living programs, 2) measures, and 3) statistical procedures.

Identification of Independent Living

Programs

Efforts were made to identify the to tal population of independent living programs in the United States and its territories. The primary source for this information was the ILRU Directory of Independent Living Programs (1986). Letters were also sent to the commissioners of all ten Rehabilitation Services Administration 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 effort.

Measures

Measurements issues in this study include the questionnaire utilized and the measurement of relevant variables.

The questionnaire

A questionnaire was developed to measure a number of important concepts relevant to ILPs. The instrument used in a 1977 and a 1984 survey of independent living programs (Veerkamp, 1984) was refined and expanded for this study through testing on ten programs.

Comments of the respondents led to rewording and clarification of several response categories, but no major revisions. The questionnaire consisted of 198 questions covering general information (including address, program age, affiliation, membership in networks, satellite offices) (17 questions), funding (10 questions), board and staff (20 questions), program administration (including training activities, consumer information systems, resource development, computer applications, evaluation) (15 questions), consumer information (including size of community, number receiving services, age, sex, race and disability) (13 questions), and services provided (23 questions).

The finalized instrument was mailed to 323 programs. 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. Four responses were not suitable for inclusions, this left a sample size of 163 and a response rate of 50.46%. Clarifications and missing data were obtained thrrough telephone contact.

Measurement of Individual Variables

Operationalization of variables under each hypothesis is as follows:

* Disability groups served. Each ILP was asked if they served each of the following groups: orthopedic impairment (e.g. spinal cord injury, cerebral palsy, etc.), neurological impairment (e.g. head injury, stroke), chronic health condition (e.g. diabetes, cancer), visual impairment, hearing impairment, mental illness, and mental retardation. The positive responses were then summed to indicate the total number of groups served.

* Budget size. The budget was treated as a continuous variable.

* Diversity of funding. Funding sources were divided into four groups: Title VII Part B funds, other Federal funds, state and local funds, and fee for service or private donations. The assumption was made that the greatest diversity would exist when each group comprised 25% of total funds. To obtain an index of diversity, 25% was subtracted from the percent of funds in each category. This yielded four different scores for each ILP (one for each funding category). The absolute values of these differences were averaged to yield a single number representing diversity of funding.

* Advocacy activities. These activities included: consumer advocacy, system advocacy, reduction of barriers, disability awareness and social acceptance, and consumer involvement in civic and community affairs. A total advocacy score was generated by counting the number of typpes of activities an ILP conducted.

The following variables were operationalized by a simple number count of yes/no response:

* Information and referral activities, number of disabled individuals on stafff, membership in networks,

* Funding amounts in the categories of Title VII Part B, Title VII Part A, other federal, state, local, private, fee for service, other business activity, and other,

* Staff size, board size, community size, annual report, newsletter,

* Range of services offered: housing referral, permanent residential, transitional residential, temporary housing, attendant referral, attendant training, attendant management trainning, client advocacy, systems advocacy, reduction of barriers, disability awareness and social acceptance, consumer involvement in community activities, and equipment repair.

Description of ILPs

Independent Living Programs will be described along the following dimensions: general characateristics, funding, general structure, board & staff, services offered, consumers of services, and networking.

Statistical Procedures

The conceptualization of the independent variable determined the statistical procedure of choice. Age of the program was conceptualized as a trichotomous variable. Hence, the relationship between age and other variables was tested by ANOVA. Planned comparisons followed significant ANOVA's. These comparisons tested: the difference between the means of the oldest and middle groups of ILPs and tested the difference between the means of the two oldest groups and the newest group of ILPs. Our hypotheses indicated that there should be significant differences in both comparisons; that is, for example, the older the program, the more groups it should serve and the more diverseq funding it should have.

Extent of consumer control and budget size were conceptualized as continuous variables. Relationships betweent these variables and other variables were assessed by correlation coefficient.

Descriptive analyses primarily relied on means, medians, and percentages. When measures of central tendency are needed, means are generally reported. However, the median is reported when the distribution of a variable contained a number of outliers or was significantly skewed.

Results

First, the results of the descriptive analyses will be presented and then the results of the hypothesis testing will be presented.

Descriptive Analyses

General Characteristics

A typical program is about eight years old. It is located in a moderately sized urban setting, operates on a budget of about $252,000 (median) drawn primarily from federal and state grants, has a staff of 7.5 (median) of whom four have disabilities, and has a board of directors (elected by a general membership) of which 60% have diabilities. It offers at a minimum, information and referral, housing referral, consumer advocacy, community advocacy, peer counseling, attendant referral, and independent living skills training, and delivers direct services to 43 persons per month, with an additional 50 receiving only information and referral. The typical consumer is between the ages of 19 and 64, white, and resides in the same community as the program. Each of these characteristics will now be examined in more detail.

Funding

The majority of programs (68%) still receive Title VII Part B funds and state funds (64%). This is balanced to some extent by private funding in 56% of the programs, and fees for service in 47% of the programs surveyed.

The distribution of total funding contained a number of outliers and was significantly skewed (p[is less than].0001). This was also typical of various subcategories of funding (in each case p[is less than].0001). It appears that a few very well funded programs tended to substantially affect calculations of the mean, giving a false impression of the typical program. Median figures will be reported (the median is the value which represents the mid-point of all programs and is less affected by extreme values).

The typical program receives approximately $66,000 in Title VII Part B funds, $30,000 in state funding, and $3,000 in private funding, with no funds received from other government sources, fees, or business activities. Of those programs which receive funding from Title VII Part A (46% of the programs), the median amount received is almost $17,000; local government funding (37%), $39,000; fee for service (47%), $45,000; and other business activities (21%), $14,000.

General Structure

Early ILPs were generally started as service projects of "grass roots" consumer advocacy organizations or traditional service providers (Frieden, 1978). In the current sample, 57% of the programs report being free-standing. The next step in expansion is the establishment of satellite offices. This was reported by 21% of those surveyed.

Board and Staff

Eighty-one percent of the programs had a board of directors and 19% reported an advisory committee as the level of authority over the executive director. At least half of the programs had persons with disabilities occupying at least 60% of the board positions. The majority of programs (62%) had their governing body elected by a general membership. For most programs (64%), board meetings were held monthly. The most common areas of expertise on these boards were business, advocacy, public relations, and social service. Only 6% of the programs reported offering training to the board, and 11% offer training to staff.

The typical constitution of the staff is an executive director (44% had a disability), one administrative staff, 4.5 direct service staff, and 1.5 volunteers (median). Overall 54% of all staff have disabilities.

Services

ILPs were established to meet the needs of the community (Frieden, 1978). Because of this a significant percentage of services are provided in the home (25%) versus in the ILP. A variety of other services are available. In the area of housing, 15% of the programs surveyed offer permanent residential facilities and 20% have transitional living programs. Seventy percent of the programs offered attendant referral, while 54% of the programs offer attendant management training. In the area of counseling, 85% of the programs offer peer counseling; 74%, financial counseling; and 63%, family counseling.

To serve the community, approximately three-quarters of the programs offer a newsletter (74%), public relations activities (77%), and promotion of consumer involvement in civic activities and community affairs (73%). Specific activities to increase awareness of disabilities are conducted by 86% of the programs surveyed, with 69% offering projects to reduce community barriers.

Consumers

Of the programs in our sample, 151 serve an urban population and 11 serve rural populations. The median population of communities in which independent living programs are located is 210,000. The majority of consumers (median = 80%) come from the immediate community with 9% coming from rural areas and 3% from other cities in the state.

Very few consumers were younger than age 18 (median = 3%) or oldernthan age 65 (median = 10%). The portion falling between ages 19 and 34 (42%) is slightly larger than between ages 35 and 64 (32%). Almost an equal number of males (49%) and females (51%) are served.

In the typical program, 86% (median) of the consumers are white, 1% are Hispanic, and 5% black. Less than 1% of the consumers are Native Americans, Asians, or persons of other racial background. The types of disabled consumers served by ILPs are varied. The categories served by centers are seen in Table 1.

Networking Activities

Of the programs surveyed, 48% are members of the National Council on Independent Living, 60% members in state networks and 24% members in regional networks.

Hypothesis Testing Results

The relationship between age of program and characteristics of the program is presented in Table 2.

Table 2 indicates that older ILPs tend to have a more diverse funding base, but do not tend to serve more groups or engage in more advocacy than younger programs. Older programs also tend to report "producing" more information and referral units. However, when size of budget is controlled, this effect disappears.

The planned comparisons for diversity of funding indicate that the oldest programs have a significantly more diverse funding base than programs in the middle category of age (larger values of the funding index indicate less diversity). The comparisons also indicate that there is not a significant difference in diversity between the two older categories of programs and the newest category of programs. Separate (not pooled) estimates of variance were used. Large variability in Group 3, almost four times greater than the other two groups, led to insignificant results.

Table 3 demonstrates that all but one of the hypotheses concerning consumer control of the board of directors were supported. ILPs with greater levels of consumer control tend to have a greater number of disabled staff members, engage in more advocacy activities, and are members of more networks. There was no relationship between proportion of governmental funding to other funding and consumer control.

Table 4 indicates that budget size is significantly related to offering some services. In particular, ILPs with larger budgets tend to offer more: permanent residential, transitional, and temporary residential services. ILPs with larger budgets also tend to be older, have larger staffs, and publish annual reports. However, ILPs with larger budgets tend to be involved in significantly fewer consumer advocacy and disability awareness and social acceptance efforts.

Discussion

Understanding the implications of the previously stated results requires an understanding of: 1) strengths and limitations of this study; 2) implications of the descriptive research; and 3) implications of the hypothesis testing.

Strengths and Limitations

This study has particular strengths and limitations. Two strengths are noteworthy. The questionnaire was well developed; two previous administrations and pilot testing refined it to be both understandable and comprehensive. In addition, this study allowed the authors to send questionnaires to nearly the entire population if ILPs and approximately 50% of the estimated population responded. This represents a very large sample of the population available for research.

The study had several limitations. First, all of the data were reported by the programs themselves; no attempt was made to test reliability and validity. Second, many terms or concepts (e.g. units of service) in question do not have standardized definitions. Although this allowed for some diversity in interpretation among respondents, there existed enough consensus on basic terms and concepts to enable programs to fulfill reporting requirements of the Rehabilitation Services Administration; therefore, data were assumed to be reliable enough for analysis. Precendent for using such data in empirical investigations was set by Berkeley Planning Associates (1986). Finally, reporting categories for age of consumers might not match the record keeping practices of the programs, necessitating estimations in some cases. Despite these problems, several trends have emerged which are worthy of discussion.

Implications of the Descriptive Research

Despite tremendous diversity of programs, certain characteristics seem to be emerging as typical of ILPs which distinguish them from traditional service providers. Primary among these is the involvement of people with disabilities at all levels of operation, including dominance of governing bodies. Although people with disabilities fill less than half the executive director positions, they occupy a majority of staff positions.

ILPs also offer a broad array of services to people with a wide variety of disabilities. These services vary from information and referral, housing, attendant related services, to advocacy, counseling, and training. It is also interesting that over half the centers surveyed offer services to every category of disability (with the exception of mental illness) included in the questionnaire (cf. Table 1). Unfortunately, information was unavailable as to the number of persons served in each category of disability. This problem should be addressed by future research.

Three tendencies have emerged from this study that are disconcerting. They relate to consumer age, race, and board/staff training. The target population for ILPs appears to be young adults since this group is most often excluded from the traditional service system. The concepts and techniques of ILPs, however, are also well suited for children and older persons learning to live with disability. It is hoped that as the independent living movement matures, it will expand the age range of its consumers.

Results indicate that independent living programs do not serve a significant number of people from minority cultures. This could be interpreted as reflecting the deeper problems of cultural conflict in general more than oversight on the part of ILPs, or as representing a lack of commonality in concepts of independence.

The low frequency of reported board and staff training is also disconcerting. Several factors contribute to a great need for training within ILPs, including the basically young and inexperienced nature of both board and staff, the rapid refinement and development of independent living service delivery techniques, the influx of new information, and the increasing demand for services among diverse segments of the disabled population.

Implication of the Hypotheses Testing

Several hypotheses received support and have implications for future research and ILP management. The data indicate that older programs tend to have a more diverse funding base. The practice of tapping a broad array of resources for survival in the absence of Federal funding during the years before 1979 seems to have continued through 1986. The finding that programs in the middle age range have a relative lack of diversity reflects a dependence on Federal funding. The high variability in responses from programs starting more recently, however, could result from the mixture of programs which began on the diminishing end of the Federal funding curve and programs which have been established on a variety of new sources that have appeared recently, primarily state funding.

The oldest programs, however, do not tend to serve more groups, engage in more advocacy, or produce more information and referral units (when budget is controlled). Perhaps these variables do not reflect the development of programs as they mature. This could mean that more research is needed to identify the impact of chronological maturity on programs. Alternatively, age of program may not adequately represent the concept of maturity.

The hypotheses concerning consumer control were generally supported; consumer controlled ILPs tend to have more disabled staff, engage in more advocacy, and participate in more networks. These results reflect the origins of these programs in a grassroots movement and suggest the variable of consumer control is extremely important to the activities of ILPs. Further research should investigate correlates of consumer control and avenues through which consumer control affects ILPs.

Few of the hypotheses relating budget size to ILP characteristics and services were supported. The results suggest that ILPs with larger budgets tend to spend money on various forms of residential facilities and staff and are able to offer a larger amount of service overall. However, a larger budget is not associated with a tendency to participate in attendant referral, attendant training, or attendant management training, systems advocacy or reduction of barriers. Of even more interest are the negative relationships between budget size and client advocacy as well as budget size and disability awareness/social acceptance programs. The implication is that larger budgets are used for housing, but not for reduction of barriers, additional attendant related services, client advocacy, systems advocacy, or social acceptance programs. Policy makers should strongly consider the priorities of their programs while researchers should investigate the cause of these relationships.

Summary

The independent living concept faces many opportunities and challenges. It is reassuring that the profile of a typical independent living program resulting from this study continues to describe the characteristics of the original model: consumer control, a wide range of services, services to diverse disability groups, and an emphasis on consumer and community advocacy. Further, it is interesting to note the importance of consumer control on the operation of ILPs and the relationships between budget size and various services provided by ILPs.

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MARGARET A. NOSEK, ILRU Research and Training Center on Independent Living at TIRR, 3400 Bissonnet, Stute 101, Houston, Texas 77005.