Nationally,there are some 16.8 million families caring for a child under the age of 18 who has special needs (Caregiving in the United States; National Alliance for Caregiving in collaboration with AARP, November, 2009). These families are far more likely to experience divorce and are more likely to struggle financially (Council for Disabled Children, July 2006). The stress these families live with is never ending, with many parents spending more than 11 hours each week just coordinating care (U.S. Department of Health and Human Services, 2007).
For millions of theses families, their deepest wish and greatest need is something most of us take for granted: a day off.
The benefits of respite care have long been known. Studies have shown that respite care services reduce the likelihood of removal of children with special needs from their homes, reduce the likelihood of child abuse and neglect, and directly promote the preservation and strengthening of marriages in families caring for a dependent family member (FY 1998 Oklahoma Maternal and Child Health Block Grant Annual Report, July 1999 andARCH, Evaluating and Reporting Outcomes: A Guide for Respite and Crisis Respite Program Managers, 2nd ed., 2003).
Most recently, a study by the University of Pennsylvania showed that respite care providing relief for caregivers of children with autism had a significant impact in keeping kids and young adults with autism out of psychiatric hospitals (Archives of Pediatrics and Adolescent Medicine, Jan. 2012).
Unfortunately, the parents who could benefit most from relief from the pressures of day-to-day care often cannot just call a neighborhood teen to babysit. Unlike moms and dads of typical kids, parents of children with special needs struggle to find caregivers with the specialized skills and training their children need. This specialized care can be costly.
However, help is available. Respite-just getting a break for one night to be with a spouse or other children and then getting a good night's sleep-is critical to keeping the parents of children with special needs going strong. One family recently told our staff at Jill's House, a faith-based, full-service, overnight respite center that celebrates children with intellectual disabilities, that the respite they receive helps them to keep going. Jill's House gives them the chance to get the rest that they need so that they don't have to institutionalize their son, i.e., place him in a hospital or long-term carefacility. Another parent told us, "We wouldn't have made it last year without Jill's House."
We applaud donors and grant makers who support respite services. Their compassion to support neighbors who are daily caring for people whom society deems the least among us, is also financially savvy. The cost of respite care is far more affordable that the cost of institutionalization.
Churches and other civic organizations can help answer the need of families with children with special needs by offering low-cost respite care for an occasional evening out for weary caregivers. At Jill's House, we help parents build a rhythm of respite into their lives, allowing them to regularly recharge so that they can be their best selves as parents and spouses. While a child's overnight stay, complete with specialized medical care, costs Jill's House roughly $600, thanks to the generosity of our donors, most of our families contribute as little as $75 per child per night.
While America's healthcare needs are debated across the country, let's not forget the "little things," such as a time of respite, that make a big difference in the lives of real families. It is a small investment that pays big rewards for often overlooked families in our communities.