Angie tells her family’s story with a strong sense of dignity. Six years ago, she and her five children were living in what she describes as the “ghettos” of Brooklyn. As she explains, “We were barely able to survive.” The true test of survival came when their home was destroyed by fire. Though the entire family was hospitalized because of smoke inhalation, Cassy suffered the most effects and remains in a “semicomatose condition.”
While Cassy was in the hospital, Angie found herself increasingly frustrated that her daughter’s condition deteriorated in ways that could have prevented. If this was the case in a hospital, Angie was sure that Cassy would be “neglected and left to starve in an institution.” She was angry with the assumption that this was all Cassy deserved: “I know she’ll never come out of the coma, but she’s still a person and deserves to be treated with dignity. I want her to live out her life the way she should, with her family.” Angie’s resistance to the recommendations of professionals was viewed as “incompetence” for which she was subjected to almost two years of psychiatric tests. Through this, she focused her efforts on learning to provide for Cassy’s care until she finally won the battle and was able to bring her home.
Now Angie had to figure out a way to make it all work. There were two major struggles. People who require the same type of medical equipment as Cassy are not typically living at home. Therefore it was difficult, and at times impossible, to secure experienced nurses from “home care” agencies. Even if nurses could be trained in the technology, Angie learned the situation requires constant judgment calls. The only way she could feel confident Cassy was being well cared for was to do it herself or stay close by. This created the second major problem. How could she manage this and care for her other four children?
Angie found no support from the local human service system. Her problems were considered proof that Cassy should not be living at home. Through persistent efforts to find help, Angie contacted Margaret Mikol, founder of Special Kids of Involved People (SKIP) in New York and a parent of a child with similar needs. In response to her interest in getting to know families, Margaret was able to arrange a meeting between Angie and the Commissioner of the Office of Mental Retardation and Developmental Disabilities (OMRDD) and her Special Assistant. Their personal commitment has played a significant role in Angie getting the services and supports she needs to keep her family together. Realizing the immediacy of the situation and knowing Angie wished to move from Brooklyn, the Commissioner decided to seek services in a community with a greater commitment to innovation. Based on its reputation, the Syracuse Developmental Services Office (DSO) was approached and agreed to arrange services in behalf of the Perez family.
With a commitment to support the whole family, the DSO asked Angie to identify their needs in terms of long term goals. In addition to assuring the proper medical care for Cassy, Angie wanted to “get off welfare” and own a home in a neighborhood that was safe for her children. She also decided she would like to assist other children like Cassy and their families. Home ownership and employment were to be safeguards against total dependency on public assistance. Not knowing how these things could be worked out, the Syracuse Developmental Services Office Deputy Director approached the Syracuse community and found several individuals and agencies willing to support the Perez family.
With funding from OMRDD, Spaulding Parents for Retarded Adults and Youth offered to employ Angie to care for Cassy and to provide respite services for one other child in her home. In addition, the agency agreed to pay monthly expenses including rent, utilities, and insurance. The next step was to find a home and arrange for renovations to make this possible. The DSO Deputy Director contacted the Syracuse Area Interreligious Council which found a church group willing to fund the down payment on a ho me through a newly established not for profit housing agency. At this time, funding was not available for a feasibility study and renovations of a noncertified home. However, with creativity and commitment, traditional sources were manipulated to meet these needs. The feasibility study was made possible with OMRDD “appraisal” funding typically used to acquire community residences and the donated time of a local architect. Renovations were made possible with OMRDD family support funds funneled through Spaulding. ARISE, the local Independent Living Center, converted Housing and Urban Development funding into community development money to provide a wheelchair ramp. Medicaid funding provides 20 hours of nursing care each day.
For the past two years, the Perez family has been enjoying Cassy and their new home in Syracuse. Cassy’s room is the family gathering place, whether it is to watch television or catch up on the day’s news. However, life is still a daily struggle wit h the complications of maintaining good nursing care. With most of her time still devoted to caring for Cassy, Angie has not been in a position to provide respite services as she would like and must consider alternative means of meeting her expenses. Overall, Angie is both amazed at what has been accomplished and frustrated with the fragility of her family’s life. Angie has recently hired Margaret Mikol to provide case management, a safeguard made possible through new Medicaid regulations that allow a family or individual to choose and direct this service. To help assure her family is supported over time and does not get lost in the system, Angie believes it is necessary to have an advocate, someone with only her family’s interests to promote.
Conclusion
There is much to be learned from this situation. It is a story that illustrates the importance of supporting families. Cassy would not have been able to live at home without a commitment to meet the needs of the whole family. Just as important are the lessons to be learned from the process of meeting these needs. Traditional funding sources are not supportive of innovative practices. Only recently have flexible mechanisms been put into place in New York State. However, this is an example of how a group of committed individuals was able to pull their resources and respond to the unique needs of this family regardless of the obstacles presented by the system. The challenge ahead will be for services providers to retain their perspective and commitment, and to resist the inclination to believe that what has been accomplished so far is all that can be achieved or that it is unreasonable to expect more. Individualized services require innovation and commitment over time.
Preparation of this article was supported by the National Institute on Disability and Rehabilitation Research, U.S. Department of Education for the Research and Training Center on Community Integration through Cooperative Agreement #H133B00003-90 awarded to the Center on Human Policy at Syracuse University. The opinions expressed herein are solely those of the authors and no endorsement by the U.S. Department of Education should be inferred.