Support for families of children with disabilities is taking a new direction, and to reflect this there is a movement to promote a strong family support public policy initiative. As a parent of a youngster with severe disabilities, I gladly welcome this new initiative with a shout of "Hooray!"
In the past, family support services have tended to be determined by the agency or professionals rather than the family itself. Why is this? In an article in the Coalition Quarterly (1984, vol.4, no.1, pp.3-7), Gunnar Dybwad prods us to look to history for the answer. He describes how, over the years, but especially after World War II, parents became tired and resentful of society's discrimination against their children. Finally, parents rebelled. They wanted services for their children where none was available, and so they created them. They started their own schools, recreation programs and in some communities, they began sheltered workshops.
It did not take them long to realize that this was no easy task--they needed help. Recognizing their own limitations, the parents sought help from educators and other professionals. They were the experts, and parents turned to them for expert guidance and information. However, in the process, authority passed from parent to expert, a pronounced shift that left the family lost and forgotten. "For many years, we (the professionals) essentially ignored and devalued the family as a focal point of helping children with severe handicaps" (Dybwad, ibid.).
In essence, the family became convinced by the experts that they were not equipped to cope with their child and his/her extreme needs. Though they may not have intended to undermine the role of the family in the life of their child, the professionals began to tell the families what the families needed, and agencies began to develop services and programs to meet these needs. In many places, including my own area (Central New York), parents found that their child had to fit the program, not the other way around. I'll give two personal examples.
Jane and Carl (fictitious names) are friends of mine and parents of Alicia, a 13 year old girl who has been labeled autistic and emotionally disturbed. Alicia is by everyone's description a "tough kid." She hits, bites, scratches herself and others. Although she can speak she rarely utters intelligible words anymore. Alicia is Jane and Carl Baker's youngest daughter; they have two other children. But those of us who know the Bakers know that they love Alicia and try to do what they think is right. Despite her aggression toward others and her constant attempts to hurt herself, Alicia is lovable. But the Bakers are tired, they are getting older, Carl's health is poor, and Alicia is getting tougher.
Alicia was refusing to go to school in the morning. She refused to bathe, dress, or get on the bus. Carl would literally drag her out of bed, forcefully dress her and drive her to school. The Bakers had tried everything, but each morning had become a greater confrontation than the day before. Exhausted and frustrated, the Bakers requested "family support" services from a local agency. Specifically they asked for someone to come in the morning for about an hour to help get Alicia up, dressed and off to school. In addition, they saw the need for a psychologist or social worker to help figure out what the real problem was, do some problem solving with the family, and provide some on-going support for Jane and Carl.
Both requests were processed by the agency, a procedure that took several days. Both requests were denied. It seemed the agency was unable to find someone who could go into the home during the morning hours, and their psychological services were not equipped to deal with people at home who had disruptive behaviors. Instead, the agency recommended placement for Alicia in an institution or, if there was space available, placement in a group home which was geographically located in another town. Was this, I wondered, family support?
My own experiences, while certainly less traumatic, have been equally frustrating. As a working mother, I have called several "family support" agencies seeking help in finding after- school care for my adolescent son. One agency which provides respite services sent me an eight page application form before they would even speak to me. (It came with $.48 postage due, too.) Later, I was informed they could not help me because I live in a rural part of the county and the few trained care givers in the general area only accepted preschool children. Without after-school care, I would be forced to quit my job. Is this family support?
I have talked with many other families over the years and the story is often the same. The agency worker listens as the family outlines their needs, or the family responds to a survey, questionnaire or checklist. Then the agency describes what services they have available, who is eligible to receive the services, and at what cost. From this array, ideally, the family can choose what they need. In actuality, they often have to accept whatever the agency can offer. In some cases, families are put on waiting lists, referred to other agencies or simply denied services. From my experience, families who have children with severe disabilities or challenging behaviors are frequently the most needy and the least served.
In other words, the main problem seems to be that the professionals have assumed the role of telling the parents not only what they need, but what they can have. Families can say what they need, but the professionals will then tell them what they can have. To me, this is not family support. Families know best what will make their life easier, more productive, and secure for their child. But, unfortunately, professionals usually feel they know better what the family should have and often make decisions accordingly.
Hence my joyful response to the movement toward a public policy initiative for a new direction in providing family support services. How will this initiative impact on families and agencies? Certainly, the obvious impact will be to truly make services and programs respond to the expressed needs of families. As a parent, I believe firmly that this is how it should be. If "family support" is to be just that, it must be determined and directed by the family, with the assistance of the professionals, not the other way around.
Agencies should be the case managers, not the family managers. Professionals
need to stop telling the families that they, the professionals, know better
what is needed. Their role should be to help the family identify what long
and short term support services they need and assist them in accessing
these services. If the services do not exist, then the professionals should
be compelled to find or provide the technical assistance to generic community
based agencies to create the service or augment already existing services.
Let us support the initiative to ensure that family support will be just
that: support for the family.