We have all heard the phrase, "It takes a village to raise a child.” Some attribute it to an African proverb, though there appears to be some controversy about that. The phrase itself has become shopworn, utilized by elected officials, pundits and others.
Despite its uncertain history and oversubscription, the concept is a good one. We all need the support of our communities. But the support the phrase refers to is about social support, about building social capital, and people helping each other. In my mind, this all sounds like what Jewish communities have done for the last century and a half. In many ways we are ideally suited to take on this effort.
But what it does not mean is a physical community. It does not mean a gated housing development for people with disabilities, an entire apartment building for people with disabilities, a ranch, a farm, a compound or any of the other iterations of the institutions of old that housed people with disabilities that are now popping up everywhere as new segregated communities for people with disabilities.
I do not deny that there is a housing crisis for people with disabilities. Children become adults; adults living with their parents want to be more independent; perhaps their parents want more space and privacy. Parents also enter old age and look to a future when they will not be available. A logical response is to look at housing to substitute for the family home. And facing these realities, people are proposing villages, farms, gated communities, ranches, etc.
Housing is, in part, a false issue. For many people with disabilities, especially those with intellectual and developmental disabilities, the issue is support services. Housing is a small part of the cost of supporting people and perhaps the easiest to finance.
We all have an edifice complex. We look at people with disabilities and think “building.” And I have seen the plans for some of these buildings and admit that they are beautiful. And their beauty is seductive.
But they are a siren’s song. A beautiful building will not make people safe; in fact, when a lot of people live together, it may make them less safe. A beautiful building will not make people happy. Happiness is a lot more about control of the big things in life, having friends, having something to do each day that brings meaning, having connections. The more people with disabilities you put together, the fewer connections in the larger community they are likely to have.
The real issue that needs to be considered is not only how much care people need now, but what kind of care young people with disabilities will need as they age over their lifetime. The trail is littered with programs that families started with their own funds, and then ran out of money as people aged and need more and more costly support. New Federal rules from the Center for Medicaid and Medicare services make it unlikely that Federal Medicaid funds, through state governments, can be used to provide the support services. So where will the money come from?
What will happen when families have aged in that twenty year period and can no longer be actively involved?
The history of congregate care for people with disabilities has a long track record of good intentions with poor results. We know that people having control of their housing, living with one or two people they choose in typical houses, condos and apartments is not only better for people, but is more accepted by the community at large. Villages, gated communities, apartment buildings and farms are just more litter on the congregate care roadside. They are a mistake.
Steven Eidelman is the H. Rodney Sharp Professor of Human Services Policy and Leadership at The University of Delaware and the faculty director of The National Leadership Consortium on Developmental Disabilities. He has worked for the last 35 years to help people with disabilities lead full lives in the community.