Frieden, Lex. 1980. "Independent Living Models." In: Rehabilitation Literature, Special Article, July-August, 1980, Vol 41, No. 7-8, pp. 169-173. A-289. Internet publication URL: www.independentliving.org/docs6/frieden1980.html.
by Lex Frieden**
An INDEPENDENT LIVING PROGRAM has been defined as a community based program having substantial consumer involvement that 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 provided or coordinated include housing, attendant care, readers and/or interpreters, and information about goods and services relevant to independent living. Other services that may either be provided or coordinated by an independent living program include transportation, peer counseling, advocacy or political action, independent living skills training, equipment maintenance and repair, and social or recreational services (1).
Let us examine this definition more closely. There seem to be three major elements which constitute the substance of this definition. They ace: community based, consumer involvement, and service provision. Community based implies that the programs are designed to serve the needs of a population in one parricular community as opposed to a region, state, or nation. Community based as it applies to this definition also means that programs are rooted in the communiry which they serve to the extent that they are dependent upon the people and resources in that community for direction and subsistence. Consumer involvement implies that these programs depend upon people who receive their services, people who have in the past received services, or people who may at some time in the future receive services to provide leadership and assistance by serving on boards of directors, advisory committees, and by working as paid or volunteer staff persons in the program. Consumer involvement in this case insures that programs do not lose touch with the needs of their clients, and it means that they will maintain a sort of grass roots, down-to-earth character and richness. Service . provision indicates that these programs are not simply social clubs or political action groups. They are in the business of enabling severer disabled people to live comparatively independent lives in their own communities by providing whatever services are necessary for this to happen. In many instances these services relate to basic needs like housing, transportation, and attendant care. However, in some cases these services relate to more career oriented goals like education and work.
In order to gain a better understanding of the possible structures and functions of independent living programs, let us look at three types of programs identified by the Independent Living Research Utilization (ILRU) (2) project in an extensive 1978 survey. After polling more than 450 programs that claimed to be providing services for independent living, ILRU iden tified 35 programs that were actually community based, had substantial consumer involvement, and provided services to assist severely disabled people to increase self-determination and minimize unnecessary dependence on other people. Of those 35 programs, only 12 met the definition of an independent living center as originally characterized by the Center for Independent Living in Berkeley, California, as it is generally understood by the leaders in the independent living movement around the country, and as codified in California law. The definition of an independent living center in this strict sense is a nonresidential, community based, nonprofit program which is controlled by the disabled consumers it serves, and which provides services directly or coordinates indirectly through referral services those services that are designed to assist severely disabled individuals to increase personal self-determination and to minimize unnecessary dependence upon others.
The pure definition of an independent living center includes a description of a minimum set of services that must be provided by such a center. These are housing assistance, attendant care, readers and/or interpreters, peer counseling, financial and legal advocacy, and community awareness and barrier-removal programs. One can see that this definition is somewhat restrictive and certainly excludes programs of a residential or transitional nature that are generally considered to be part of the independent living movement. Therefore, the term "independent living program" evolved to include two other distinct types of programs. These are independent living residential programs and independent living transitional programs (3).
An independent living residential program is a live-in program that provides directly or coordinates through referral shared attendant services and transportation. Other related services may also be provided by these programs. An independent living transitional program is one that facilitates the movement of severely disabled people from comparatively dependent living situations to comparatively independent living situations. The primary service provided by these programs is skill training in such areas as attendant management, financial management, consumer affairs, mobility, educational/vocational opportunities, medical needs, living arrangements, social skills, time management, functional skills, sexuality, and so forth. Transitional programs are usually goal oriented and/or time linked. It is important to keep in mind that both of these types of programs must also be community based, have substantial consumer involvement, and increase personal self-determination and minimize unnecessary dependence on others.
Thus, we have three types of independent living programs: centers, residential programs, and transitional programs. Each of these are similar to the extent that they are community based, have consumer involvement, and provide services designed to facilitate independent living by severely disabled people. However, each of them is different to the extent that they provide either ongoing or transitional services, that they are either residential or nonresidential, and that they are either controlled by consumers or merely provide opportunities for substantial consumer involvement. These fundamental differences between programs may seem somewhat subtle and unimportant to the uninitiated observer. But to those who understand the nuances of the independent living movement, these differences are extremely significant. In fact, debates related to the importance of these differences between independent living devotees often arouse emotions and lead to temperamental outbursts.
The differences are not difficult to explain. Some people believe that independent living programs must be directed by and controlled by consumers in order to be viable. Other people believe that consumer involvement on a lesser scale is sufficient. Some people believe that residential programs are institutional, segregated, and do not provide an opportunity for optimal normalization in the community. Other people believe that these programs are suitable alternatives to institutionalization for severely disabled people, that they are one step on a continuum of independence, and that they are not necessarily segregated. Some people believe that transitional programs are simply residential programs in disguise, that they are too much like traditional rehabilitation programs, and that they do little to insure the long-term support of severely disabled people in their communities. Other people believe that transitional programs are far different from residential programs in that they force participants to move into the community after a specified period of time or after the participants have met certain goals. They believe that transitional programs are much more cost effective than other sorts of independent living programs and that they enable severely disabled persons to live independently in their communities without the need for ongoing services other than those provided for the general population.
These differences of opinion should not discourage the adoption of any one type of program, but they should lead to questions that may help determine which type of program is most appropriate to meet the needs of certain groups of severely disabled people in particular communities. It may be and in fact t has been the case in some instances that all three types of programs are needed in a given community. Instead of competing with one another for prominence, these three types of programs should complement each other in a practical approach.
Variable Dimensions of Independent Living Programs
Besides the basic differences between programs described above, several other variable dimensions of programs can be identified. These dimensions may be useful in describing programs and in determining how those programs fit into any given community. The dimensions used by ILRU in its 1978 program survey and described by Pflueger in her monograph Independent Living (4) are: service setting, service delivery method, helping style, vocational emphasis, goal orientation, and disability type served. In addition to these, several other dimensions may be important. They are: program sponsor, management structure, geographical setting, and primary funding source.
Service setting relates to whether a program is residenrial or nonresidential, like a store-front operation. Service delivery method relates to whether services are provided directly by the program or indirectly through referral to other agencies. Helping style relates to the extent to which consumers are involved in the operation of the program. Vocational emphasis relates to whether or not vocational goals are prerequisites for participation in the program. Goal orientarion relates to whether the program is transitional or ongoing. Disability types served relates to whether the program focuses on people with a particular type of severe disability or whether the program provides services for people with many different disability types. Program sponsor relates to whether the program is sponsored by an existing health service, social service, or rehabilitation service agency in the community, or whether it is a comparatively new and independent entity. Management structure relates to the amount of control that the board of directors of the organization has compared to the control mainrained by the executive director, or to the power of the director compared to that of the staff. Geographical type relates to whether the program serves a primarily urban area with an extremely dense population, or whether the program serves a rural area with a comparatively scattered population. Primary funding source relates to whether the program is supported mostly by fees paid for services rendered or by grants and donations. It is important to recognize that these features are not exclusive and that they simply constitute dimensions across which programs may vary. Also, the descriptions given above for these' dimensions are not complete, but they are sufficient to allow for constructive discussion. With this in mind, let us compare some of the existing independent living programs in the United States according to the definitions and dimensions listed above.
Existing Program Models
Although the Center for.Independent Living in Berkeley, California, has most often been cited as the epitome of an independent living program, we have chosen here to examine two other lesser known programs with equally outstanding characteristics. To begin with, let us examine the Ann Arbor Center for Independent Living (CIL) in Michigan and the Community Service Center for the Disabled (CSCD) in San Diego, California.
Both the Ann Arbor CIL and CSCD are located in highly populated urban areas. They each serve over 500 clients per year drawn from all major disability types. They each report that their services are equally distributed among male and female clients and that they have at least a 25 percent representation of nonwhite persons among their clientele. Their staffs are each composed of more than 50 percent disabled persons and they each provide both professional and peer counseling services. Their primary services relate to advocacy, community consultation, and community education, although they both provide referral to housing, attendants, and transportation. Both programs utilize multiple funding sources-including federal, state, and foundation grants-as well as individual and group donations. They both depend on funding from state agencies as their primary source of income and their annual budgets both exceed $100,000. In spite of substantial funding, both programs list inadequate funding among their major problem areas. Both the Ann Arbor CIL and CSCD in San Diego are independent living centers in the truest sense of the word.
The ILRU project is presently in the process of updating its 1978 survey of independent living programs. Data obtained thus far seem to indicate that the number of independent living programs in the United Sfates'has neatly doubled during the two years since the original survey was done. There are now more than 20 programs in California alone. There are at least five programs each in Massachusetts and Texas, and at least three programs each in New York, Kansas, Michigan, and Washington. By far, most of the existing programs are located in urban areas. In fact, only three truly rural programs have been identified. In the past, many programs were located adjacent to university campuses. However, more of the newer programs seem to be locating away from campuses in order to better serve the community at large. Residential and nonresidential programs seem to be equally represented among existing programs. In fact, several programs provide comprehensive services in both residential and nonresidential settings.
It is clear that nonresidential programs serve more persons on an annual basis than residential programs. In fact, nonresidential programs average serving more than 500 persons per year, while residential programs average serving fewer than 50 persons annually. More than two-thirds of the existing programs serve persons with different types of disabilities. Of those serving a single disability type, spinal cord injury is the type most often served. There are twice as many independent living programs with an ongoing orientation as there are transitional programs. In fact, very few of the recently established programs are transitional. With respect to vocational emphasis, the programs are almost evenly divided. About half of them have a strong vocational focus while the other half have only an incidental focus on vocational issues.
About half of the existing programs have a staff consisting mainly of handicapped individuals, and the other half are staffed by a majority of nonhandicapped persons. It should be noted, however, that those programs which are not staffed mainly by handicapped people generally are directed or managed by handicapped individuals. Most of the programs provide both direct services and referrals to other agencies. A few of the older programs provide only direct services with no referrals. However, most of the recently organized programs place a . tremendous emphasis on information and referral type services. This seems to reflect a growing concern for better utilization of existing services in the community. It also reflects a growing emphasis on advocacy, which leads to the expansion of existing social service and health service programs in the community to include severely disabled persons among their clientele.
The most frequently cited service delivered by existing independent living programs is residential service. The next most frequently cited primary services are peer counseling and independent living skills training. Other services frequently cited as primary are attendant care, advocacy, financial aid counseling, transportation, social and recreational activities, and mobility training. Most existing programs are recently organized, private, nonprofit entities that are governed by a corporate board of directors who in turn
employ an executive director to manage day-to-day program activities. A few programs are affiliated with existing rehabilitation agencies, such as comprehensive rehabilitation centers, voluntary social service agencies like Goodwill and Easter Seals, and state vocational rehabilitation agencies. These programs are generally managed by a project director who is employed by the sponsoring agency and who reports to an advisory committee that includes strong consumer representation.
Almost half of the existing programs rely on four or more sources of income to support their programs. The older programs seem to rely more on direct or third party income for services rendered while the newer programs rely more on grants from federal, state, and local governments. Donations by individuals and corporations seem to be a secondary source of funding for most programs, and foundation grants are of incidental note at this point. Almost two-thirds of the existing programs depend on funds from state rehabilitation agencies as their primary source of support. Although nearly as many programs use federal funding as one source of income, very few of them depend on that as a primary source. About one-fourth of all existing programs have only one source of funding. On the other hand, nearly one-fourth of the programs utilize at least five sources of income and, with one exception, each of these programs serves more than 500 persons annually.
As one might suspect, most of the older programs-chose established in or before 1976-are the biggest programs. Also, as one might suspect, the programs serving the most people generally have the largest budgets and serve the largest communities. In many respects, the older programs may be described by the adjective "multi." They are usually multiservice, multidisability, multifunded, multifocused, multidimensional, and multifaceted.
An Hypothetical Program Model
Information gathered about the successes and failures of existing programs may be useful in planning new programs. If one asked what kind of independent living program was best, the answer given by most experts in the area would be that it depends on the needs of disabled people in any given community, on the availability of existing community resources, on the physical and social makeup of the community, and on the goals of the program itself. Nonetheless, some generalities can be stated.
It appears without a doubt that judicious incorporation of the major tenets of the independent living movement lead to successful programming. That is, provisions must be made for the substantial involvement of consumers in program planning, management, operation, and monitoring. Programs should be as community based as possible. The services that they provide should be directly related to the needs of the community they serve. They should directly provide a set of core services not available to disabled persons elsewhere in the community, and they should coordinate and provide referral to existing services in the community. They should provide a combination of ongoing and transitional services. These transitional services are generally called independent living skills training and may be provided in a temporary residential setting.
Programs should establish straightforward management policies modeled after other successful community based social service programs. They should maintain sound fiscal management and adopt effective accounting procedures. They should obtain consultation and assistance from existing programs and other sources of technical assistance, and they should establish built-in program evaluation and outcome evaluation methods. They should develop multiple sources of funding, and they should be accountable to both funding sources and their own clientele. They should develop strong supportive relationships with existing local and state rehabilitation agencies, as well as the private sector in their own communities. They should struggle to avoid compromising idealistic principles in the face of pragmatic concerns. Finally, they should strive to be inventive.
We have explored several different prototypic models of independent living, reviewed the major similarities and differences between programs, discussed some philosophical bases of the independent living movement, briefly examined a few existing programs, looked at the present status of independent living program development, and stated several generalities relating to program development and operation. At this point, we shall attempt to glimpse into the future by examining recent patterns and trends in the development of independent living programs.
It appears as though the present trend to establish new programs will continue for the next two to five years until each state has on the order of five to 30 independent living programs. This means that by 1985, there may be as many as 300 to 500 programs in the United States. Based on the fact that there are now about 65 active programs in the United States with budgets averaging about $100,000 per year each, it appears as though about $5.5 million is being spent on independent living programs today. About 82 million of this is from federal appropriations through Title VII. Furthermore, given the fact that 10 million additional dollars will be spent this year (FY 80) from Title VII appropriations, with most of this used to establish new programs, it is not beyond imagination that funding would be available in 1985 to support the anticipated 300 to 500 programs.
Again, judging by recent trends and the prevailing feelings of experts in the area of independent living, one may predict that future programs will emphasize consumer control, be community based, and avoid providing residential services. With additional funding, one may also predict the establishment of several programs in the same metropolitan area. These programs will be of several different types-some transitional, some ongoing. Also, they may focus on different primary disability types. For example, in a city with several programs, one program may provide services primarily for mentally retarded adults, another program may provide services primarily for mobility impaired individuals, and still another program may provide services primarily for persons with communication or visual disorders.
With a growing movement toward independent living by severely disabled people, there will be a greater demand for integrated barrier-free accommodations. More public attention and political clout will be focused on the elimination of work disincentives, the provision of barrier-free public transportation, and the provision of community wide attendant care, reader, and the interpreter referral programs.
With the rapid expansion and proliferation of independent living programs, more programs will fail due to overexpansion and mismanagement. It is possible that this will lead to an effort by the federal government to impose strict controls on independent living program funding, program standardization, or perhaps even licensing requirements. This rapid program development may also lead to the evolution of a type of independent living specialist or professional independent living program staff person. If these changes come to pass, the likelihood of institutionalization is inevitable, and the independent living movement will undoubtedly wind up a part of the nursing home establishment, the MHMR establishment, or something analogous to those.
In conclusion, let us look once more at the present state of development of independent living programs. Right now, in the United States, nearly 8,000 severely disabled people are living more independently than they were three years ago. These are persons who have been and are being served by independent living programs. At the present growth rate, by the year 1985 as many as half a million severely disabled people may be living comparatively independent lives, integrated throughout our communities as a result of services provided by independent living prograins.
** Mr. Frieden is director of research for the New Options Transitional Living Project at the Texas Institute for Rehabilitation and Research in Houston, Tex. He is also director of a federally funded independent living research utilization project, and a member of the faculty of the Baylor College of Medicine. Mr. Frieden, a quadriplegic, has been involved in the organization of several groups of disabled individuals, including the American Coalition of Citizens with Disabilities and the Houston Coalition for Barrier-Free Living. Working in the independent living movement by severely disabled persons since the early 1970's, he is a frequent contributor to the literature in this area and has published several papers on independent living, including the background paper on Community and Residential Based Housing for the White House Conference on Handicapped Individuals.
An expanded version of this article will be included as part of a forthcoming publication entitled Independent Living Service Centers, to be published as an Institute on Rehabilitation Issues document by the Arkansas Rehabilitation Research and Training Center, Hot Springs, Ark., in December of this year.
Research for this article was supported in part by the National Institute of Handicapped Research, U.S. Dept. of Health, Education, and Welfare, under grant #22P59106/6-01. For further information or technical assistance related to independent living, contact the author at. Independent Living Research Utilization Project, Texas Institute for Rehabilitation and Research, 1333 Moursund, Houston, Tex. 77030.
(1) Frieden, Lex; Richards, Laurel; Cole, Jean; and Bailey, David. "A Glossary for Independent Living." ILRU Sourcebook: A Technical Assistance Manual on Independent Living. Houston, Tex.: TIRR (Institute for Rehabilitation and Research), 1979.
(2) ILRU is a federally funded independent living program technical assistance project. Located at the Texas Institute for Rehabilitation and Research (TIRR) in Houston, Texas, ILRU conducts research, training, and consultation, and produces written and audiovisual materials related to independent living of severely disabled people.
(3) The term independent living program used here is analogous to the term independent living center as described in Title VII of Public Law 95-602 (The Rehabilitation Act Amendment of 1978). Inde-pendent living program was chosen for use here because it is a generic term that subsumes several different types of programs, including one called a renter for independent living. Since independent living center, as conceived in the early 1970's, has a very specific and somewhat limiting definition, it is understood that a broader definition Like that of independent living program was intended by the fathers of the independent living legislation when they referred to centers for independent living.
tunities, medical needs, living arrangements, social skills, time management, functional skills, sexuality, and so forth. Transitional programs are usually goal oriented and/or time linked. It is important to keep in mind that both of these types of programs must also be community based, have substantial consumer involvement, and increase personal self-determination and minimize unnecessary dependence on others.