I have a daughter with Down syndrome who is integrated into the first grade at our local school. The intellectual impairment that comes with Down syndrome can range over a fairly wide spectrum. I would estimate that Erin’s intellectual ability fall in the upper middle of this spectrum – I believe that she’s a little more capable than most children her age with Down syndrome, but she’s still considerably less capable than her typical peers, and she has a stubborn streak that causes occasional difficulty.
My dear wife has great hopes for the amount of independence that Erin will eventually achieve. I, on the other hand, have resigned myself to the expectation that Erin will always be dependent upon us to a significant degree. Naturally, I wonder what will happen as we, and Erin, grow older, especially if a time comes when we are unable to provide Erin with the assistance that she needs. Two recent stories related to this concern caught my attention.
First was a segment that aired October 8 on NPR’s All Things Considered. The report told the story of how Al Etmanski, the father of a daughter with Down syndrome, helped to create, and is now the president of, the Planned Lifetime Advocacy Network (PLAN). PLAN’s mission is to “help families secure the future for their relative with a disability and to provide peace of mind.” The organization works to help parents plan for both the social and financial future needs of their special needs children.
The second story was featured in the October 20 issue of the Arlington Catholic Herald. Gabriel Homes is a private nonprofit organization with seven homes in the Arlington, Virginia area. Their mission is to promote “independence through residential placement, training, and community integration for adults with mental retardation.” The biggest problem for Gabriel Homes is that their waiting list is twice as large as their capacity, and they typically have only one opening per year.
PLAN is in Canada and Gabriel Homes is in Virginia. With Erin in only the first grade, I haven’t seriously looked at what might or might not be available here in west central Ohio.