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Respite services; a national survey of parents' experience.

RESPITE SERVICES A National Survey of Parents' Experience

The majority of returned questionnaires were completed by mothers who were the child's primary caretaker. More than 85 percent of the respondents said there were "two parents in the home." The "typical" family responding had one to three childre; the average age of the child with a disability was 8.8 years old (12.9 percent of respondents' children were under three years of age; 8.5 percent were over 18).

Respite is a valuable resource for families who are able to utilize it. The families are essentially pleased with the individuals who provide them with respite. However, they seem to have some substantial problems working out the details of obtaining this support. Lack of flexibility, arbitrary limits on use of the service, the inability of the "service system" to consistently respond to crises, all point to services that have not yet taken the concept of parental empowerment to heart. This experience is mirrored in the families' evaluation of the degree to which they are active partners in the planning and implementation of the programs, which affect their families.

Families prefer to make the same arrangement for respite care that they have with all child care sitters. Parents want to be in control and have the provider of respite responsible to them. They prefer someone they know or, failing that, someone who is clearly seen as being their employee. As soon as the respite alternatives begin to move out of the local community or begin to minimize parental control parents become less prone to endorse them.

SOCIAL COST

There is a substantial social cost as parent--usually women--with a wide range of education and talents are unable to pursue educational and career goals because of the extraordinary demands of raising a child with a disability. The issue of day care in general has come to the front of the national policy agenda because of the economic impact of the lack of adequate resources. The failure of respite or "generic" day care to provide for the needs of parents of children with disabilities on a day to day basis has not been addressed. Yet, the economic impact on these families is certainly more profound than the case of the parent who misses work periodically because day care arrangements fell through. The public sector seems to regard respite as an extraordinary resource made available to families. However, families regard it as a necessary and regular part of daily life. We see the need for expanding respite so that it loses some of its specialness and is integrated into a comprehensive system of day care.

The failure to develop a coherent vision of the needs of parents and their children with disabilities is most evident in the wide variation in state-to-state use of respite. This indicates some major differences in the availability and accessibility of services.

What parents want falls into two major areas. First, they want to be able to exercise control over the services that affect their home life. Second, they want a substantive role in forming or reforming the system of services in a manner that is really responsive to their needs.

Parents' first two primary concerns are for the overall welfare of their child. Only after their pervasive concern for the future of their child is addressed does respite, or "relief" for them, become a priority. Perhaps as a comprehensive system of community-based family supports including respite becomes the rule rather than the exception, parents will be ablt to look to the future of their child with a little more security.

FAMILY SUPPORT: MORE THAN

RESPITE

In a series of interviews conducted at the same time as this survey (Agosta and Knoll, 1988), we asked families about family support in general. The first things many parents and other care givers mention is respite. For some of the families interviewed "family support" is "respite." It has not occurred to them that family support could entail anything beyond the temporary care of a family member with a disability by someone outside of the family. In many cases, this narrow definition of the term can be attributed to a limited awareness of the more expansive approach to family support that is beginning to take root around the country. For while a few forward looking states and a number of advocates are promoting the idea of family support as "anything it takes" to maintain the integrity of the family (Center on Human Policy, 1986; Taylor, Racino, Knoll & Lutifiyya 1987), the reality is that in most states family support is more narrowly defined. Often family support is only respite. And as we have seen, even this limited contribution to family welfare is not universally or equitably distributed throughout the country.

There is a growing body of work on respite that is mostly technical and geared to the needs of providers. There is little clear evidence that the voices of parents have been heard in the design of services. At best there are materials available if parents wish to become "service providers" and establish their own respite agency.

When it comes to family supports there seems to be some inherent contradiction in calling on parents to assume the added role of becoming a service provider. The underlying belief is that parents should be supported so they can devote their major energies to parenting a child with a disability or serious illness. In fulfilling this role they make a major contribution to the life of the community.

Parents should not be called on to further dissipate their energies by developing services. Rather, the community has some responsibility to support its families and the child rearing efforts of all its parents. The demands of raising a child with a disability or serious illness are substantial enough in and of themselves.

Traditionally, the demands of care giving have been used as a rationale for seeing parents of children with disabilities as a fairly powerless group who often found themselves at the mercy of professional service providers and public administrators. So often these professionals assumed the role of telling the parents not only what they need, but what they can have (Dybwad, 1984). The service that has become known as respite is an effort to support families. These programs are at least nominally community-based and family-centered services in line with the ideals expressed in much of current "family" literature.

Yet we found little evidence that the respite system has truly left behind the traditional professional-client relationship. There is no clear evidence that the majority of respite programs are consistent with the values of consumer empowerment and control. If there were consistency, we would expect to find substantive consumer involvement in the design, management and evaluation of support services. We did not.

PARENT POWER

There is a growing awareness that the way services are provided can have a major impact on overcoming this perception of powerlessness (Dunst, Trivette, & Deal, 1988). In other words, people become powerful by having experiences that affirm their abilities; people are made powerless through experiences that demean their competencies.

This leads directly to service models based on equal partnerships between parents and professionals, which assume two basic premises: 1) all families and persons with disabilities are potentially willing and capable to make responsible decisions; and 2) families know best what will make their life easier, more productive, and secure for their child. There is a need to affirm for parents their ability to manage respite for their own family member. Moreover, really valuable material will foster the development of skills of critical analysis and organization which parents will be able to utilize in all arenas of life.
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Author:Knoll, James; Bedford, Sara
Publication:The Exceptional Parent
Date:May 1, 1989
Words:1278
Previous Article:Automobile transportation; car seats, wheelchair carriers and van lifts.
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