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Family support: a challenge for the 1990's.

Family Support: A Challenge for the 1990's

There have been major efforts to examine and redefine the relationship between families of children and adults with disabilities and all programs, public and private, that provide services.

In the past, service programs "supplanted" the family -- that is, they took on activities that were ordinarily done by parents. For example, an assumption of many preschool intervention programs was that parents were often inadequate and, therefore, limited the growth of their children. However, practical experience has taught the "self-styled" experts that parents are capable of helping their youngsters and need supports rather than "supplanting."

The "support not supplant" philosophy ushered in a period of unparalleled interest in the development of services for people with disabilities within the family home. On the federal level, the terms "family support," "family-centered" and "community-based" became common. This was accompanied by the development of a variety of new federal programs which were specifically designed to provide for services to people with disabilities in the home. While these efforts at the federal level helped to set a tone and direction, they did not directly influence the way any individual state carried out its responsibilities in human services.

When we shift the focus to tracing the development of family supports at the state level, the tentative and embryonic nature of these efforts becomes clear. Surveys of state efforts done just a few years ago are completely out-of-date. Each new fiscal year brings substantial change to the depth and breadth of family support programs around the country. Though much of the change is positive and reflects expansion, many programs no longer exist because they were pilot (short-term, trial) projects that did not become permanent. Further, many family support initiatives are not firmly established by legislative mandate and, therefore, while they may continue, they are susceptible to the state budgetary process.

In order to have a clearer picture of what states are doing, the Human Services Research Institute, with support from the Administration on Developmental Disabilities in the U.S. Department of Health and Human Services, has just completed a series of interviews with key parents and professionals in every state. Family support services in the United States: An end of decade status report is a result of this work. It contains a detailed description of national trends in family supports and a state-by-state summary of family support programs. We are highlighting the major trends in this article. A directory of state family support programs, which includes a brief summary of what each state provides under the umbrella of family support, follows this article.

CURRENT EFFORTS

As of December 1989, 41 states had developed programs which focus on supporting families which are raising a child who has a developmental disability. These programs have provided some service to at least 129,777 families during the last state fiscal year.

There is wide diversity in the extent to which family supports are firmly established in each state. Presently, only three states (Michigan, Wisconsin and Minnesota) have relatively comprhensive family supports established by state legislation. Three other states (New Hampshire, Louisiana and Illinois) have new legislation which, when fully implemented, will bring them close to having a comprehensive array of supports. An additional 14 states haves some supports that are mandated by state family support legislation.

Eighteen states have family supports that are governed by departmental policy and are budgeted for in legislative appropriations. These supports are considered a permanent part of the department budget. In seven states, family supports are small scale pilot projectfs funded by a state department or a developmental disabilities council.

Spokespersons for the nine states (Kansas, Kentucky, Mississippi, Missouri, New Jersey, North Carolina, Oklahoma, South Dakota and West Virginia) that do not have specific "family support" initiatives all indicated that in-home services and support were provided to families through their typical community services, early intervention program or Medicaid waiver. However, when these programs are compared with what is occurring in states that have made a commitment to family support, some major differences in policy and practice emerge. Traditional services which are already available as general community services are not always as responsive to families as those which have a clear mandate to support families.

FAMILY SUPPORTS

The supports that are provided under the umbrella of family support fall into four general categories.

* The oldest and most generally available family support is respite services. Forty-six states provide for some degree of public support for respite for families of children with a developmental disability. (Note: State definitions of the term developmental disability vary.) In four states (Alabama, Delaware, New Mexico and Vermont), the only state supported family support is respite.

* A total of 36 states fund some other services in addition to respite as part of their array of family supports. In 13 states, the support to families is limited to a specifically designated group of services.

* In the last several years, increasing attention has been paid to financial assistance as a mode for providing flexible family supports. Twenty-five states offer some form of financial assistance to families. Currently, in eight states the only state funded family support is some form of financial assistance.

* Finally, 17 states use some combination of financial assistance and services to provide support for families.

On the surface, there is extensive family support activity throughout the nation. Yet, when the number of families actually receiving support is examined, the truly limited nature of most efforts becomes readily apparent. The number of families covered in each state ranges from nine in Wyoming to approximately 25,000 in California. In 15 states, the major components of the family support program serve less than 100 families. Further, in some states with a large number of families on the eligibility rolls, it was reported that many families only receive case management services.

Another indication of the limited nature of family supports can be seen in the amount of money that is committed to these efforts. The range of state allocations for family supports is from $37,880 (Wyoming) to $30,511,839 (California); the national total is $172,198,035. While this national total may sound like a rather large sum, it is actually a very small percentage of the total dollars spent nationally to provide services for people with mental retardation and other developmental disabilities.

EMERGING ISSUES

At this early stage in their development, supports for families of people with disabilities are at a crucial juncture. Almost every state has come to the conclusion that family support is something that it should provide. What remains undecided in most states is the direction that these efforst will take. In general, the efforts were found to be small scale and very new. Nationally, and in most individual states, the actual fiscal commitment to family support is a minute portion of the total budget for developmental disabilities services because facility-based programs, such as residential programs, continue to absorb the bulk of the resources. To this point, most family support has been "sold" to policy makers based almost exclusively on a narrowly focused rationale of cost effectiveness. This perspective has fostered a crisis intervention mentality regarding family support. It assumes that the public sector will provide just enough assistance to maintain the family and avoid the demand for an expensive out-of-the-home placement. Only in the last year or two have a few states begun to confront the basic message of family support: It requires a major shift in emphasis for developmental disabilities services -- finances moving away from facility-based models to a true community system.

Within the next decade each state will need to confront this fundamental decision about its policy direction. In its most concise form, the question confronting policy makers is "Will we continue with business as usual, placinag our primary emphasis on funding programs and facilities and providing minimal support to families and adualts with disabilities who live outside our facilities, or will we shift to a truly individually driven system in which we fund the unique constellation of services and supports that each person or family needs?"

A final point needs to be made regarding this or any efforts to describe state family support practices. There are likely to be significant differences between the ideal of family support as it emerges from interviews with policy makers and providers or review of state legislation, regulations or other documents and the reality of families' experience. As an example, we can consider the difference between the apparent availability of respite services and the experience of families who need to use this service. Based on the figures presented in this report, it would seem that most families that have a child with a developmental disability should be able to obtain some level of publicly supported respite. Yet, in an earlier national survey of parent's experience, we found that although respite appears to be widely available, in many cases this service is not truly accessible to families (Knoll & Bedford, EXCEPTIONAL PARENT, May/June 1989). This suggests that any future efforts to assess states efforts in the area of family supports should include an evaluation by families and individuals with disabilities in an effort to determine the degree to which the ideals of parent-controlled, family-centered, community-focused supports are truly being realized.

Our purpose in examining what states are currently doing to support families of people with disabilities has been to assist with the deveopment of a systematic approach to family support by describing each state's current level of effor related to family supports, the various strategies that they are using and some of the policy and programmatic issues they are confronting. What has emerged from this effort is that, although the 1980's have seen a great deal of activity, most states are only now at a point where a family support agenda can be clearly defined. The policies of the 1980's will determine whether the agenda is translated into concerete supports and expanded services.

James A. Knoll is a Senior Research Analyst for the Human Services Research Institue in Cambridge, Massachusetts.
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Title Annotation:includes a directory of state family support programs
Author:Knoll, James A.
Publication:The Exceptional Parent
Article Type:Directory
Date:Jun 1, 1990
Words:1673
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