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Not if nobody knows it happened, snaps Jeff Corbin. He directs the Gateway Regional Advisory Council on Developmental Disabilities, which is charged by state statute with advising and monitoring DOMH programs for people with developmental disabilities. He was delighted to see the department anticipate the Olmstead decision by writing new, flexible language -- "and/or purchase of community services" -- into House Bill 10, the DOMH budget, for 2000. This meant Medicaid funds could be used to buy services in the community, even day programs for residents who chose to stay at the hab centers. Excited, Corbin asked when residents and families would be notified.
Not anytime soon, came the answer.
He offered -- twice -- to write a letter himself, informing people both about HB 10's new provision and the Olmstead ruling. The second time around, he'd gotten as far as stuffing the envelopes and only needed DOMH to supply the confidential mailing labels. Then the word came down: no notification yet, not until there was an Olmstead plan in place.
Corbin hit the roof. The new bill opened a window of opportunity for a lot of people, and they weren't even being told. Instead, DOMH director John Solomon had sent staffers a wink-and-nod memo, saying "the flexible language in facility budgets is permission language, not mandatory language."
Asked about the reticence, Sneed says, "In my heart of hearts, I truly believe people are aware of the availability of funds. True, nothing has gone out in writing yet, but the only issue there is to make sure the message we give parents in St. Louis is the same as the message we give in, say, Higginsville."
What about identifying hab-center residents who might want to move into the community? "I don't expect a massive rush," says Sneed. "The first time we brought it up, approximately 41 people expressed interest." That was in July, right after the Olmstead decision. So what exactly did they tell residents and families about the decision? "I don't know if, in all cases, we mentioned Olmstead per se," amends Sneed. "We were just letting them know we were prepared to offer some alternative-type programs."
Corbin wants more explicit information released, ideally by disinterested parties. He also wishes someone outside the hab centers could conduct the assessments, "so it's not skewed to say, 'This person's support needs are through the roof.'" Sneed says that's fine, but an independent assessment "has to be funded." Money is on his mind lately: Not only are the hab centers in danger of losing it if Medicaid-supported residents decide to leave, but they're in danger of being sued if people aren't helped to leave. Meanwhile, Missouri has about 1,300 people with developmental disabilities living at home with elderly parents, and soon they, too, will fall under Olmstead, as people at risk for institutionalization.
Dennis Cardwell, 51, managed to deal with his multiple sclerosis at home for years, then woke up one morning and couldn't get out of bed. He found himself a "nice" nursing home, in shady Webster Groves, but the staff was bossy and unavailable and the hot dogs were greenish and visits with his daughter meant sitting in the lobby, nodding at elderly residents and trying to ignore the inevitable Lawrence Welk or Wheel of Fortune blaring from the common area. "I kept wishing we could just watch a movie together," he blurts, "or go to Queeny Park."
Eighteen months later, Cardwell made it to the top of the waiting list on a Missouri program that pays for personal-care assistants (PCAs). He was able to go back to his little house in Sunset Hills, where he spends hours on the computer, does his own grocery shopping, takes his daughter out for Chinese food or fettucine alfredo and watches old Audrey Hepburn movies with her. "It's a more normal way of living," he says with relief.
Normalcy is fragile, though; the program that funds his assistants will probably end up serving 51 fewer people next year, because when the PCAs' salaries were raised last year, the budget didn't rise with them. Meanwhile, Missouri legislators approved a fourth waiver extending PCA services to Medicaid recipients who needed more than six hours of service a day, or assistive technology, or modifications to their home. The waiver was to go into effect in July but was delayed until December. "Then they only let us sign people up at a rate of nine per month," exclaims Colleen Starkloff of Paraquad. "Now the state has put a freeze on it, and they haven't told us why. And we only have until June 30 to get 470 people on the program."
Ron Vessell, assistant commissioner for the Division of Vocational Rehabilitation, which administers these funds, says they're "slowing down to make sure we don't go over the appropriated amount. Since we started in December, we haven't been able to capture a whole year's worth of federal dollars. By July, we'll have the program in place." Then the trick will be finding and training enough PCAs -- a job that can mean anything from scrambling eggs and wiping away urine to monitoring medication and manipulating high-tech equipment. It's a lot easier to say, "You want fries with that?" Plus the wages are low (usually $6.50-$7.50 per hour) and the turnover high (it's estimated at 16 percent in institutions, and 44 percent on up to 100 in the lower-paying, less stable community jobs).