State shifting funds for disabled from institutions
toward care within community

Beau Cabell/The Telegraph Karen Weatherly, who picked the color for her room, and caregiver Angela Neal, left, share a moment Saturday before Mercer University students finish up painting Weatherly's room. Weatherly shares a room at an Advocacy Resource Center-owned home in Macon with three other women.

By Travis Fain - tfain@macon.com

MILLEDGEVILLE — There was clearly so much wrong with the young man.
The nurses at Central State Hospital said he was 16. He had a tube sticking out of his neck, and his arms were bent at unnatural angles.

And Lisa Robinson rushed to him because he reminded her of her son. They have the same name, and similar maladies ravage their bodies. Both can understand; neither one can speak.

Robinson and her friends cooed over the young man and his two roommates in a ward at Central State, complimenting them, eliciting smiles from trapped bodies. They understand what it's like when people look at you funny. Or when they don't know what to say and just withdraw. They're mothers of disabled children.

"It's automatic as a parent," said Robinson, whose own son is 17 and has cerebral palsy. "We can relate."

She and seven other mothers visited the state-run hospital a couple of weeks ago as part of a training program called Partners in Policymaking. They were learning what kind of care the government offers so they can be better patient advocates for their children or for others.

But they also were looking to answer a haunting question: What will happen to my child when I die?

MAJOR SHIFT UNDER WAY

Of the estimated 134,000 people in Georgia with a disability, more than 17,000 have a care-giver who is at least 60 years old, according to state statistics.

They run the gamut, from the man who needs help getting to a job and balancing his checkbook to the bedridden woman who needs care 24 hours a day. With costs for more serious medical issues easily running thousands of dollars a month, few families can afford care on their own, especially once the parents are dead and gone.

For decades, that's meant institutionalization as adult children became wards of the state or as frustrated families turned to the government for help. But now the state has shifted strategies, using taxpayer money to move more people into private homes run by advocacy groups or to help provide care in the family's home. The idea is that the money follows the person and that market forces will push private companies to provide better care as they compete for government dollars.

The strategy has its critics, but a few years into the shift, many patient advocates are more optimistic than they've been in a long time.

"Over the last three years, we've made just a historic effort," said Rita Young, the mother of two autistic sons and the training manager for the Atlanta Alliance on Developmental Disabilities.

"What we're wanting is for as many people as possible to live out in the community," said Young, who coordinated the recent tour at Central State.

That's happening slower than Young and other advocates would like, but it is happening. The Atlanta Journal-Constitution published an exposŽ last year on suspicious deaths at government institutions, and a federal investigation followed. But changes already were under way.

The state recruited Stephen Hall from Colorado about 3 years ago to oversee Georgia's Office of Developmental Disabilities, which is part of the Georgia Department of Human Resources. He is the state's first developmental disabilities director. Before, the services were lumped in with the department's mental health operation.

Since then, the state Legislature has funded waivers for roughly 3,000 people to receive care outside of government institutions such as Central State. In the coming budget year, another 500 services will be funded - a figure that doesn't necessarily equate to 500 people, since a person might have more than one service need, Hall said.

With 1,000 Georgians added to the waiting list for this funding each year and 5,500 already on the list, the desire for help far outstrips the funding. But it's all relative. In fiscal 2004, the state funded 10 of these slots, Hall said. Before that, the number was zero.

Central State once had 25,000 people living, and often dying, there. Now there are about 900 people living in all state hospitals, Hall said.

Within five years Hall said he plans to get that number down to 200 people.

A NEW MANTRA

As the mothers walk the halls at Central State, they chatter with excitement if a patient responds to their friendly questions. Then they go back to giving staffers the third degree, particularly questioning how much stimulation and how much choice residents have.

In the more traditional wards, where patients aren't in a hospital bed for hours at a time and there's not a nurse keeping watch every hour of the day, the rooms have lamps and bedspreads and bedside tables. But it's three to a room, the floor is made of tile and that institutional smell comes and goes.

"This is not a place I would want my children to grow up in," said Young. "This is not a home."

The other mothers agree. Other plans will have to be made when they die or become too old to care for their children.

"I've not seen one thing here that's made me say, 'You know, this isn't very bad,' " said Angie Saylors, who's used to resisting doctors who said her daughterAshby wouldn't walk or who told her the girl belonged in an institution.

It's hard to imagine some of the people at Central State living outside this clinical setting, but there is evidence it can be done. Eleven states don't have hospitals like Central State at all. They rank well ahead of Georgia in the latest "State of the States in Developmental Disabilities" study, which was conducted by an institute at the University of Colorado.

The study compared 2004 to 2006, and Georgia ranks ninth in increasing its spending for community-based care, as opposed to care in institutions such as Central State. Yet that was only enough to move the state from 50th in community-based spending to 49th.

More funding is needed, Young said, because people with disabilities haven't done anything wrong and deserve to live in a regular home. She points out one mother on the tour with a 25-year-old son. He moves around in a wheelchair by blowing through a tube. But he's going to college.

"I think it's about just opening up our minds to seeing people with disabilities living in the community no matter what their functioning level is," Young said.

Hall, who said his job is "getting people in power to change their mind," is preaching from the same bible.

"One hundred percent of all people who are now in hospitals can now be better served ... in the community," he said.

MACON PROGRAM GROWING

In Macon, the Advocacy Resource Center, commonly called ARC, has been working with disabled people since the 1950s. But it's grown about 20 percent in the past three years as more government funding has become available, Chief Administrative Officer Andy Harrell said.

Now it owns 10 homes and numerous apartments where people with disabilities live with varying degrees of help, Harrell said. Dorothy Henderson, for example, lives with three roommates in a house not far from downtown Macon. Most days, an ARC staffer drives Henderson, who said she is 64, to ARC headquarters. There she sits in a motorized wheelchair, selling candy bars and other snacks to staffers and whoever else happens by in the lobby.

Tom Glennon, a Mercer University professor, said he found Henderson in a nursing home 16 years ago. He said he has been taking Mercer students to Central State Hospital and area nursing homes for 37 years. He struck up a friendship with Henderson, who has cerebral palsy and scoliosis, and became her advocate, getting her out of the nursing home and into ARC's program with a state waiver.

In a strained and punctuated whisper, Henderson said her home now is "more nice than the nursing home."

Glennon said he likes the state's new policy, but doesn't think market forces will lead to better care across the board as groups compete for "so few government dollars." It depends on the facilities available and who will advocate for disabled people who can't always speak for themselves, he said.

Other advocates and caseworkers have noted that, in rural areas, these community care options don't exist.

Hall acknowledged that problem but said the flow of government waiver money will bring those services. He pointed to Bacon County in south Georgia, one of the state's poorest counties. There are few services there, but there are nine mothers whose children are currently in hospitals or institutions. Since the money now follows the disabled person, there will be a half million dollars in government funding available for the area, he said.
"It's a local economic generator," he said.

Glennon and others worry that the state's new policy will lead to people being sent to smaller institutions, but institutions nonetheless. But he said Georgia has come a long way since he first visited Central State Hospital in 1971 and was shocked by what he called "disgusting" conditions.

"I had to leave," Glennon said. "I had to gag."

'LIKE A WAKE UP'

The Central State Hospital of today is a far cry from the early 1970s.

Still, mothers on the tour said the hospital's hard floors and fluorescent-lit activity rooms are no place for their children, regardless of the staff's good intentions.

"It was like a wake up," said Robinson, one of the mothers on the tour. "Like ... anything could happen to you. You need to have something in place."

Robinson's son already has a state waiver, and she has life insurance. But she's setting aside extra money and writing a will to make sure he isn't institutionalized. Robinson tells her son not to be picky about what he'll eat. If he does end up in a facility and refuses certain foods, staffers might put a feeding tube in his throat out of laziness.

"That is a non-home-like environment," she said. "I don't want my son to ever go into an institution. Period."

To contact writer Travis Fain, call 744-4213.

 

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