People First of Oregon 

Fairview: The Closing Chapter


Waiting for a crisis
Decades-long delays in serving developmentally disabled adults pose problem for state as parents age and die

If you live in a state with one of the worst records of care for developmentally disabled adults -- such as Oregon -- the idea of joining a 10- to 20-year waiting list to get assistance must seem like a fool's errand.

But it's critical for creating the awareness needed to engage state policy-makers, legislators and voters in solving the problem of caring for a growing population of adults with mental and physical impairments.

A crisis is unfolding in this state as caregivers age or die and are no longer able to provide for their disabled loved ones. The landscape of unmet needs described by staff writer Bill Graves on Sunday has been a generation in the making.

The question for Oregonians is how to meet this challenge in a way that allows us to face ourselves in the mirror. The current outlook is not encouraging.

By the state's own count, 3,880 developmentally disabled adults are on waiting lists for services. Of that number, 350 have been waiting more than 10 years. The Arc, a national advocacy organization for the mentally retarded that compiled the state rankings, says some families have simply given up and aren't even counted.

The growing population of adults with disabilities shouldn't come as a surprise to anyone.

It began with the realization in the '60s and '70s that disabled children could achieve a better quality of life when raised at home. Instead of relinquishing their children to state institutions, more and more families helped them triumph in ways small and large over conditions such as autism, cerebral palsy, Down syndrome or mental retardation.

At the same time, the past 10 to 20 years of medical advances have saved hundreds of thousands of people who would have died in auto crashes, drownings or from head or spinal cord injuries. Their families also saw the benefits of home care.

But decades later, those adults, whether disabled from birth or by injury, still must be fed and dressed, diapered and bathed by aging family members who may be in failing health.

Some help will come from closing the Fairview Training Center in Salem. That is expected to free about $60 million a year and help the state cut the waiting list for in-home services.

The dilemma comes for the 2,913 who are waiting for residential care in group homes. Currently, only a family care crisis will get someone off the list and into a home.

The state's reluctance to create any more group homes is understandable. The difficulty in keeping group homes properly staffed in a strong economy of rising wages is authentic. The liability that occurs from rapid turnover or hastily trained staff can't be overstated.

But if care isn't provided for disabled adults, the state may find it faces another kind of liability. The current triage system based on family caregivers' abilities hasn't held up well under legal scrutiny. Some states that use Medicaid money to care for disabled adults have found themselves losing lawsuits brought by families and have been ordered to provide similar services to people with similar disabilities.

Those liabilities haven't been entirely lost on the state. Even though the Legislature failed to spend any additional money to reduce the waiting lists, it did at least call for a fuller accounting of individuals and their needs. Knowing the size of the problem is the first step to addressing it.

Families that may have become discouraged over the years must again step forward to see that their names are added to the waiting lists. In order to get disabled loved ones the services they need, the state has to know they count.

Portland Oregonian Editorial: August 19, 1999