The coming storm

By Jim Pritchett

The mental-health reform process and the changes it is bringing are the latest in a long series of events that have had an impact on North Carolinians with special needs and their families and friends.

The transition to community-based, person-centered services has been extremely difficult at times. Adequate funding is always an issue, and the development of services in areas of the state where they are not available presents special difficulties.

I am increasingly concerned about the continuing need for the development of residential alternatives for people with developmental disabilities.

There are some demographic and legal issues that will soon reach a critical mass, challenging all of us to take more aggressive action to meet the resulting needs, especially for residential alternatives.

The development of community-based services has encouraged parents of children with developmental disabilities to keep their child in the home, rather than place that child in state or other types of institutions.

As long as the parents or family can remain in place as primary caregivers, this system has worked well.

However, the aging of our country is already creating a new dynamic:  Elderly parents looking after adult children with developmental disabilities and/or other special needs.

A question being asked with increasing frequency is:  “What will happen to my son or daughter after I am gone?”

More that 13,400 North Carolinians with developmental disabilities live with caregivers who are age 60 and older, according to a recent report.

We could conjecture that some of these parents have made trust or other financial arrangements for their adult child so their care will continue.

We could also suppose that other family members will care for these adult children when the parents die.

My guess, though, is that the vast majority of parents do not have these options available to them.  Where will they go?  Your guess is as good as mine.

Add to this dynamic the Olmstead case several years ago in which the U.S. Supreme Court ruled that states have an obligation under Title II of the Americans with Disabilities Act to place persons with mental disabilities in community settings.

This is often referred to as the “integrations mandate” of ADA.  Like other states, North Carolina has developed an Olmstead plan that addresses the need to provide residential and other support services in local communities and to reduce the number of people served in state institutions.

Lack of funding and other constraints continue to limit the state in its ability to implement Olmstead reforms.

One possible answer to this issue would be the more extensive development of residential alternatives at the local level for people with developmental disabilities and other special needs.

During the 1980s and early 1990s, groups such as The Arc of North Carolina and the Mental Health Association of North Carolina worked in concert with the state and the U.S. Department of Housing and Urban Development to develop a network of several hundred small group home and apartment properties throughout the state.

While these have helped to meet a critical need for residential community placement, they are not the complete solution.

Federal funding for this effort is gradually shrinking and will disappear in time.  Congregate and segregated settings can be expensive to maintain and are inconsistent with the effort to integrate people with special needs into our communities.

So what is the answer?

A major commitment of funding to develop housing and supports for people with special needs is absolutely critical.  I remain hopeful that the public at large will be made aware of this need before the coming storm.


Jim Pritchett is executive director of the Affordable Housing Group of North Carolina in Charlotte.

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