MATTHEW DeFOUR
608-252-6144
mdefour@madison.com
Dane County’s funding for developmentally disabled people is being spread thinner, angering some service providers and intensifying the debate about how the county’s commitment to its most vulnerable citizens has changed over the years.

“We’re backpedaling. There’s no question about it,” said Richard Berling, executive director of Madison Area Rehabilitation Centers, which provides daytime services for adults with disabilities such as Down syndrome or autism.

Dane County Executive Kathleen Falk and Human Services Director Lynn Green maintain that the county still has the best services for the developmentally disabled in the state, if not the country. The county budget has increased from $60.1 million spent in 2000 to $77.9 million proposed for 2009 — about a sixth of the budget.

“We balance each year the dual goals of continuing to have (a higher) level of service than any other county in Wisconsin plus bringing on new clients to get service,” Falk said.

But as more clients enter the system, the dollars are being spread thinner, with $76.5 million spent in 2007, the last year for which complete spending is available. On average, each adult client was allotted $49,196 in 2007 for housing, care, job assistance and other needs. Adjusted for inflation, the amount is down nearly $7,000 from seven years earlier.

Less purchasing power means less staff care for each person and even, as parents such as Kathy Karklus, of Madison, fear, a greater risk of injury for the vulnerable population.

Karklus’ son Ryan, 28, suffers from severe seizures and must be sedated and confined to a wheelchair. With the county’s proposed 3 percent average cut for existing clients next year, Ryan could receive fewer dollars, which means Madison Area Rehabilitation Centers receives less money for keeping him as a client.

That cuts into the rehab center’s budget and over time has meant fewer staff members, frozen salaries and reduced hours of care for clients.

Karklus already worries the center doesn’t have enough staff to help Ryan out of his wheelchair for 20 minutes every two hours per doctor’s orders. That could result in bedsores or his hamstring tightening and requiring painful surgery. And if Ryan has a seizure while staff are attending to another patient in need, Karklus fears the worst could happen.

“I’m concerned about the safety in the programs,” Karklus said.
Dane County Sup. John Hendrick, of Madison, agreed that the developmental disabilities budget has been cut “to the point where safety is an issue.”

“The choice we’re making now is whether we want services in the community or something that looks more like an institution,” Hendrick said. “That’s not a goal I have, and I thought it’s the opposite of what we’re trying to do.”

Sup. Barbara Vedder, of Madison, said she would submit a budget amendment that would provide all human services service providers a 1 percent cost-of-living adjustment. That would cost local taxpayers $660,000.

Community-based care

Starting in the late 1970s and early 1980s, after developmentally disabled people were moved out of institutions, Dane County became an innovator in creating a community-based approach. The method emphasized people in need of round-the-clock care living in apartments rather than group homes and working at jobs with their caregiver alone rather than in teams.

The approach has proven to be expensive, so the county has promoted “efficiencies” to save money, resulting in more situations where four or five people may live together in a duplex.

Kim Turner, chairman of the Developmental Disabilities Coalition of Dane County, said the living conditions are still far better than in the state hospitals of 40 years ago. Clients are living in more group settings, but they or their guardians still control the lease, which service providers consider a more dignified approach.

Turner said having one caregiver for multiple people limits the options for clients to participate in outside activities, increasing isolation. “It makes it really hard to provide the support people need,” she said.

Green, the Human Services director, noted that with tight budgets every year and with developmental disabilities taking up a third of the Human Services budget, there’s no way it can avoid being cut.

“At some point, the determination was to ask consumers what they wanted and provide what they wanted,” Green said. “It would appear that consumers, guardians and families clearly showed a preference for living in apartments by yourself and not being in group employment settings.

“Now that we are saying there are more people in need and more demand, we’re trying to find efficiencies to increase caseload,” she added. “Is it a setback to take on roommates? I don’t know.”

Green said a recent efficiency that has improved the living situation for many clients is Sound Response, which allows caregivers to monitor clients at night from a remote location. If clients get out of bed or open the front door, caregivers can immediately respond, which has reduced the need for staff.

Service providers like Berling say the increased focus on efficiency has indicated a change from a philosophical approach, emphasizing individual choice and human dignity, to a financial approach, emphasizing tight budgets.

“We’re the ones being forced to congregate people in opposition to the philosophy that was in existence for 25 years,” Berling said.