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Local Care Is The Thing

Big Centers To Care For The Developmentally Disabled Are Winding Down

Wisconsin State Journal :: FRONT :: A1

Sunday, June 19, 2005
Tom Sheehan Lee Newspapers

"Aaron, how ya doin' buddy?" Becky Underwood whispers as she gently rubs her son's right shoulder.

It's unclear if Aaron knows who's beside his bed in the Murphy Hall Central Wisconsin Center for the Developmentally Disabled in Madison.

He gazes into a mirror set up about a foot from his nose. But even his mother can't tell if he sees anything.

Like an infant, Aaron is completely dependent on others for survival. But Aaron is 25 years old.

He can't walk, roll over or control a wheelchair. He depends on center staff for the most basic of needs, such as bathing and dressing. He receives nutrition and more than a dozen medications through a feeding tube.

When Aaron was born, a physician told Becky and her husband, Kevin, their son should be institutionalized.

"Over my dead body," Becky Underwood recalled telling her doctor in 1981.

"I'm not dead yet, but here he is," she said at a recent visit with Aaron.

In fact, she is now fighting to keep Aaron in the center, where he's now lived for 22 years. Because of Aaron's complex medical needs, Underwood doubts Aaron would survive without the attentive care he gets at Central.

But momentum is against her.

Steady trend

For the last three decades, the state has mirrored a national trend: Care for the developmentally disabled has shifted from public and private institutional settings to community-based residential settings, such as group homes.

It's been a slow, steady transition. But political, legal and budget pressure to empty the state centers, as well as county-run and private institutions -- known as intermediate care facilities -- has never been greater.

At their peak usage around 1970, Wisconsin's three centers for the developmentally disabled held about 3,700 residents, according to the state Legislative Fiscal Bureau. By June 30, 2004, that number had dropped to 767, including 349 residents at Central Center; 261 at Southern Center near Union Grove; and 157 at Northern Center in Chippewa Falls. The state is in the process of closing its long-term-care Northern Center facility and is scaling back operations at both Central and Southern Center.

The state's 33 intermediate care facilities, home to about 1,400 developmentally disabled residents -- down from more than 1,800 in 2001 -- face similar pressures. The number of beds in those facilities available in Wisconsin dropped from 2,200 in 1998 to fewer than 1,500 in 2004, according to the state Department of Health and Family Services.

Correspondingly, the demand on the community-based care system -- which already has a waiting list of more than 1,600 people, has increased. The number of developmentally disabled people participating in the two state Medicaid waiver programs for services in a community setting jumped from 2,104 in 1993 to 10,609 in 2003.

The combined cost of the community integration programs in 2003 was about $358 million.

Many of the less-severely disabled institutional residents already have made the transition, and now more severely disabled people are following.

In the case of Northern Center, some parents fought the move in court, but were only successful in delaying transfers.

Many advocacy groups and some policymakers say community living provides the best environment for developmentally disabled people to reach their potential.

The Wisconsin Council on Developmental Disabilities successfully urged the closure of long-term care at Northern Center. The group also wants Southern Center closed by June 30, 2007, and the group People First, a statewide self-advocacy organization for people with disabilities, is asking the state to close Central by 2012. The groups say savings from closing the centers could be used to help pay for community support services.

The shift toward community placement is unlikely to ever lose momentum, even for the most profoundly developmentally disabled people, said Gerry Born, council chairman.

"The idea developmentally disabled folks are best served in big groups is out the window," Born said.

Nearly all of the services that can be provided at the state centers can be offered in a community setting he said, even for the most profoundly disabled.

Is the system ready?

Underwood and state employee union leaders agree that community residential settings are healthy for many developmentally disabled state residents. But they say the push to de-institutionalize care has gone too far, and the community-care system isn't ready to handle some of the state's most vulnerable residents.

Some developmentally disabled people who have moved into community settings have died, been hurt or placed in jeopardy in situations that could have been avoided, said Carolyn Kaiser, a field representative for the state union employee district that includes Northern Center.

Some former Northern Center residents, who didn't exhibit behavioral problems in institutions, have run into conflicts with neighbors or police in their new community settings, said Kaiser, who worked at Northern Center more than 20 years. She argues that the community-care system already is too saturated to handle more severely disabled residents.

A review of citations issued to community-based care providers in 2004 by DHFS' Bureau of Quality Assurance shows unattended developmentally disabled people in community settings have been sexually assaulted, have died of medicine overdoses and have wandered away from facilities and have frozen to death.

Wisconsin State Employees Union Council 24 is urging legislators to require better oversight of the community care system and better tracking of former residents in the community.

After union testimony at a legislative hearing in March, Sen. Dave Zien, R-Eau Claire, asked the state to stop moving residents out of Northern until the safety concerns can be addressed. Northern, which opened in 1897, remains scheduled to end long-term care on June 30.

DHFS Secretary Helene Nelson, though, said "egregious" things have happened to developmentally disabled people, whether they live with their family at home, in institutions or in group homes. She referred to the sexual assault of a female resident at Central Center in 2004, and to a woman who died at Northern Center after being placed in a locking jumpsuit.

`Institution or nothing'

The community-care system has had some problems, too. But the industry and state are working hard to address concerns and the vast majority of placements have gone off without a hitch, said Steve Mercaitis, program services director for Prairie du Chien-based Knapp's Development Inc., one of four Lori Knapp Companies that operate about 30 group homes in Wisconsin.

"We're not perfect in the community. There are probably some people who didn't benefit by (community placement), but the quality of life is better than in an institutions," Mercaitis said.

In the early 1970s, Wisconsin's state centers for the developmentally disabled were crowded, "horrendous places," especially for children, said Born, who worked as director of social and community services at Southern Center from 1970 to 1975. He also served as director of DHFS' bureaus of Developmental Disabilities and Community Programs in the late 1980s and is now director of operations for Lori Knapp Companies' operations in Richland County.

Parents of disabled children had few options then, Born said. "You either kept your son or daughter at home or sent them to one of these institutions. It was the institution or nothing."

Although parents often resist moving a child from an institution, they're often satisfied after the move has happened, Born said.

Community placement has resulted in a total transformation in the way services are delivered to people with disabilities, he said. Many people who historically were institutionalized are now living in the community, advocating for their own rights, Born said. People First, which often holds rallies at the state Capitol, is an example.

Not all the same

Underwood doesn't know what led to Aaron's premature birth on Dec. 14, 1979. Central Center staff explain his clinical conditions, in part, like this: "Mental retardation associated with abrupto placenta and premature delivery, respiratory insufficiency, spasticity with skeletal deformities, ... abdominal discomfort and seizures."

Although many developmentally disabled people can hold jobs or function in a community setting, that's not the case with Aaron, his mother said. He will never be able to clean tables at a fast-food restaurant or work at a grocery store.

His treatment needs are intense: He requires help to expel waste. He undergoes Botox and other injections to loosen stiffening muscles. His gallbladder has filled with gallstones. A rod installed during a spinal fusion is broken in place. Aides use a mechanical lift to hoist Aaron's 88-pound frame to and from his bed to his wheelchair, custom-built by center staff.

Central Center "isn't perfect," but Underwood said she feels Aaron is well-cared for and safe there.

At an annual review in May, a team of Central Center staff determined Aaron remains eligible for care. Underwood, however, said she's been told that eventually, Aaron will have to leave.

And unless recent state budget decisions are overturned, operations at Central and Southern will begin scaling back soon. Gov. Jim Doyle, a Democrat, and the Republican-led Joint Finance Committee approved plans to move 40 more residents from Central and 50 more residents from Southern into community settings by June 30, 2007 -- the end of the next two-year state budget cycle. That is on top of 167 state-centers residents who have made the move to community settings during the current two-year state-budget cycle, which ends June 30, said Charlie Morgan, a supervisor at the Fiscal Bureau.

Plans also call for cutting 132 positions at Central and Southern, Morgan said.

Nelson said the state doesn't yet have plans to close either of those centers. But she didn't reject the possibility.

"I think there will be people moving out of Central Center and Southern Center, and both of those places will be getting much smaller," Nelson said.

About this story

Public and private institutions for the developmentally disabled in Wisconsin are emptying out, mirroring a national trend in favor of providing those services in community settings such as group homes.

Proponents of the change say it's a healthy shift for developmentally disabled people. Critics say the community-care system isn't ready to handle some of the people making the move.

Contact Tom Sheehan at tsheehan@madison.com or 252-6198.