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Parent to
Parent of New York State
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This page last updated on
June 4, 2008
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Family Support Services -- Helping Families to Support FamiliesBy Mary Jo Hebert, MSC Upstate Program Assistant and Regional Coordinator The practice of removing children with developmental disabilities from their homes and routinely placing them in institutions has been called many things, but rarely do we hear it called family support. Yet according to a report prepared by the Beach Center On Disability entitled “Family Support: Retrospective and Prospective,” institutionalization was indeed the earliest form of family support, “relieving” families of the “burden” of caring for their children with disabilities. Through the “era of conversion and advocacy” beginning in the early 1950s, a different form of family support emerged. Parents formed local groups and organized associations in which they could receive support. They advocated against institutions and for education and other services for their children. Parents increasingly recognized themselves as “experts” on their children and became joint decision makers with professionals. Today’s model of family support focuses not just on parents, but on the needs of the entire family. Its current definition describes “a wide range of government and nongovernment supports and services that assist families to obtain the types of lives they want and need.” Assisting families to obtain the types of lives they want and need covers a great deal of ground and means many different things to many different families. To our family of five it means living a life as close to the one we would have lived had our youngest son not been disabled. It means living a life where we are not “chained to” the disability. It means allowing our son’s disability to a part of, not the good part, not the bad part, but just a part of our family’s diverse and multi-colored tapestry. Our family’s ability to live the life we want and need is enhanced by our participation in a myriad of services provided by New York State Family Support Services programs. Our son participates in a Saturday morning recreation program at our local YMCA. The program is sponsored by Saratoga ARC and funded through family support. While he enjoys a morning of basketball and swimming, my husband and I are free to run errands, work in the garden or spend time with our other children. Through a family support funded program called Sports Are For Everyone, our son plays baseball in the spring and basketball in the fall and winter. The opportunity for a child with a disability to participate in athletics is beneficial for the entire family. It provides a sense of community for family members and everyone benefits from seeing their children as capable and enthusiastic athletes. A family support after-school program sponsored by Living Resources provides our son with the opportunity to go horseback riding or to the movies and the library. Free from worries about after-school childcare, I am able to work at a job that I need and love. A summer camp program sponsored by Easter Seals provides coverage for the week between the end of the school year and the beginning of summer programs. Freestanding respite allows our family to escape for an occasional overnight. Family reimbursement funds helped us to obtain an adaptive computer screen that allows our son to work independently on the computer. To my other children, their brother’s support system appears seamless. In reality it is a complex patchwork of supports that operates outside of their line of vision. I, on the other hand, am aware of the placement of every stitch. I know which seams are most vulnerable and which ones are most likely to give way and unravel at the most inopportune times. It is I who also assumes the responsibility of mending the tear and patching the hole when it does. The payoff is that my children are free to enjoy as normal a family life as possible. Because we have knit a safety net of support for their brother, they don’t carry the heavy burden that other siblings have had to in the past. They are free to enjoy their kid brother (or not) as in any other family. The natural sibling relationship has been preserved and not transformed out of necessity into that of a caretaking one. The result is that when families are not always forced to be together they often choose to be together. Which leads me to my own definition of family support, which is that family support is the support you give to a family so the family is better able to support itself. Because in the end the best family support is not about government programs or professional associations. It is about relationships between brother and sister, mother and child, father and son. The Beach Center report states,”The safety net that we all need – the garment of family support that we all want to wear – is constructed of the warp and woof of human relationships. One challenge for the future is to find the ways, the language, the culture, that weaves a safety net of human relationships, for they are the strongest strands of family support.” Late at night, a young boy sleeps on the eve of his eleventh birthday. Downstairs, his older brother gently opens and closes the front door behind him. The soft click of the lock and careful footsteps up the stairs tell me without having to look at the clock that the hour is past curfew. I listen to the impossible tiptoes of a six-foot frame make their way past my room and down the hall to safety. Almost there, the footsteps stop, turn, and retreat back in the opposite direction. Minutes later I hear doors open and close, hushed whispers, the shuffle of slippers, and the faint drone of a television turned low. As I make my way down the hall to investigate, I prepare the stern warning I will deliver on responsibilities, curfews, and consequences. Opening the door, I suddenly cannot remember one word of the speech I came to deliver. Nestled on the floor in a mountain of pillows and blankets with a bag of popcorn between them, two brothers stare wide-eyed at the flickering television before them. I recognize the movie, worry that it is not appropriate for young children and question my sixteen-year-old son. “Go to bed, Mom,” he says. “Nothing is more appropriate than a sleepover and an inappropriate movie on your eleventh birthday.” Passing the door to his brother’s room, an older brother reaches back in his memory to recall what it was like to be a young boy turning eleven. In an instant he decides to forfeit his own need for sleep to recreate that experience for a little brother who otherwise would never know it. The arms that willingly reach to carry a brother over the threshold from one year into the next are not the arms belonging to one who is tired from carrying the weight of a heavy load. These are the open arms that form circles around families, that strengthen them and unite them. These are the arms of family support.
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