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Dealing with the Unexpected



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I am often asked to describe the experience of raising a child with a disability – to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this…

So begins Welcome to Holland, an essay by Emily Perl Kingsley about being the parent of a child with special needs. She describes the experience, likening it to a planning a vacation in Italy, only to discover upon landing that your plane, and your adventure, has taken you to Holland. It is a story dealing with the unexpected.

Many of the people served by CICOA through our home and community-based services are children and their families. Services provided through the Medicaid Waiver or Indiana’s CHOICE program help provide the opportunity for children to receive care in the home, outside of an institutional setting. These programs help support parents and families in their efforts to raise their children with special needs. These clients and their families deal with the unexpected every day. They adapt and adjust. They find a way to make things work.

Medical procedures and advances in treatment yield health outcomes that would have been considered miraculous or even impossible a generation ago. According to the Centers for Disease Control, a child is born with a birth defect every four and a half minutes in the United States. One baby in 10 in the United States is born prematurely. Advances in healthcare, treatment, detection and prevention have helped reduce the incidence of many birth defects and premature births, and also increased the life expectancy of those that are born too early, or born with a disability. 

More children survive, and this is a tribute to advances in medical care. But perhaps the most dramatic increase in life expectancy is associated with another factor: Kids with disabilities today grow up at home.

Before the 1960s and 1970s, individuals with disabilities often were institutionalized. Since then, an emphasis on at-home family care and a degree of social independence has improved life expectancy of much of this population.¹ According to a 2010 study by Tamar Heller at the University of Illinois, the mean age at death for special needs clients can range from the late 50s (for those with more severe disabilities or Down syndrome) to the early 70s for adults with mild/moderate disability. The same study showed that, with projected longevity, the number of adults in the U.S. with disabilities age 60 years and older may nearly double, to 1.2 million by 2030.²

Changes in public policy, notably access to public education in the 1970s and the introduction of the Medicaid Waiver programs in the 1980s, help make it possible for more families to raise their children with disabilities at home. This does not make raising a child with special needs easy. But, it does make that journey easier, and helps make it a journey that families don’t have to make alone.   

Long term supports provided through CICOA help children with special needs to live at home, cared for by parents or other family members. We have long advocated for the importance of community settings for a higher quality of life. But, not only quality, but longevity, is also improved.  CICOA’s young clients grow up. Many are able to attend school, graduate, participate in sports, find gainful employment and get married. They strive for a better life. And the communities they are part of are the better for it.   

Thank you for your support of CICOA, and the families we serve as they explore the opportunities before them. Kingsley concludes her essay:

But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”

But…if you spend your life mourning the fact that you didn’t get to go to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.

¹ Donna M. Scalaro and Matthew Fitch, The Impact of Longevity on the Special Needs Client.

² Tamar Heller