Shreveport Times Editorial, 1/24/09

Throughout Louisiana 10,000 residents with disabilities are waiting for help so they can live independently.

Some of them could be waiting for years to come.

The Arc of Caddo-Bossier, in conjunction with its national parent organization, plans to spend this year raising awareness of "the waiting list," an often-overlooked issue for its clients. They deserve our support as they strive to change attitudes and develop a new system of care.

Over the past 20 years, the philosophy of care for those with developmental disabilities has shifted from an institutional approach to in-home or group home care that allows people to be as independent as they are able.

With a state match, Medicaid will provide extra in-home supports to make that shift possible, like personal assistants or vehicle modifications. Getting that assistance is the issue. When a child is 3 they are eligible to be put on a list for those services through the state Office of Citizens with Developmental Disabilities, and most will wait more than eight years to be approved.

On Martin Luther King Day, The Arc held a Community Conversation with about a dozen parents, advocates and elected officials in hopes of finding the real impact of the waiting list.

For moms like Charlene Boles, it means bringing her 22-year-old daughter to work at the family business every day. Jessica went on the waiting list at age 3. Her wait was interrupted by a family move, and she is still hoping for services. Boles said Jessica could find more fulfilling work and learn some independence if she had transportation.

The waiting list even frustrates those who know the system. The Arc Public Policy director Sam Beech's son moved off the waiting list after years and received after-school care.

"I've got someone there, so I can keep my job," she said.

The parents attending The Arc's conversation are not trying to shirk their duties or rely on the state. They just have challenges a little greater than the rest of us. But getting just a little help is often the most difficult.

As Beech observed: "They want to give you all their services or they don't want to give you any."

In all cases, parents are struggling to provide basics for their children, juggling the extra care they need and battling a system clearly in need of an overhaul.

It has to start with perception that home care is better than institutional care. From there it's a matter of getting care to children as early as possible.

From a purely monetary perspective, it's cheaper to hire a fill-time personal assistant, who can make sure someone gets ready for work and has a meal at the end of the day, than it is to keep someone in an institution at $140,000 per year.

And on a human level, encouraging independence leads those with special needs to becoming productive, even taxpaying, citizens.

Clearing the waiting list will be difficult. The Arc is taking the first step asking for a commitment to see those born with disabilities as having potential and providing the support to reach it.

We hope legislators are listening.