12:00 AM CDT on Sunday, June 21, 2009
By EMILY RAMSHAW / The Dallas Morning News
AUSTIN – Toby Simmons' disabilities were so severe that he couldn't breathe or swallow without help. For the first two decades of his life, he received around-the-clock nursing care in his foster mother's home.
But when he turned 21 and aged out of the children's health program that paid for the care, the state said it was too costly to keep him at home. The state's solution? An institution.
Simmons' foster mother saw another answer: a provision that lawmakers created two years ago to keep people like Simmons at home. But despite her pleas – and warnings from Simmons' longtime doctor that he was too fragile to live in an institution – the state denied the funding. He moved to a Killeen-area nursing home in May, and within 24 hours, he was dead. It's still unclear why.
Lawmakers designed the provision to keep medically fragile people from being forced into lower-cost nursing homes or state schools when they would be safer in their own homes. But disability rights advocates say that state officials have interpreted it so narrowly that almost no one can qualify.
Since the measure went into effect in 2007, just five of the 23 people the Texas Department of Aging and Disability Services has considered for such funding have received it – and all sued the agency before getting it. Most of the others stayed out of institutions because their families sacrificed services to get under the state's price cap for care.
Demand for these services is only expected to increase. Advocates estimate more than 200 medically fragile kids will be aging out of the children's program between now and 2015.
"Our doctors told us, our nurses told us, that Toby would die in an institution. But the state forced us into it," said Simmons' foster mother, Juanita Craig, who took the boy in when he was abandoned by his biological parents at just a few weeks old. "I know he could've been taken care of much better at home. It hurts in the worst kind of way."
State health officials say that they never force anyone into a state school or a nursing home and that they do everything they can to provide safe and cost-effective care for people who want to stay at home.
But they say that many people with complicated conditions receive first-rate care in state institutions. And they note that the budget rider didn't come with increased funding. If they provide high-cost home health care to someone who could be served far more cheaply in a nursing home or a state school, they have less money left to care for others with disabilities.
"Obviously, these families do see this as a life-and-death situation for their loved ones," agency spokeswoman Laura Albrecht said. "We're balancing that desire to keep someone at home with the many other individuals who are waiting to receive services."
The dispute involves the most medically fragile disabled Texans, the hundreds of people for whom care is extremely expensive and time-consuming. These patients can cost the state as much as a half-million dollars a year each, on top of the significant sacrifices their families make to provide care. Decisions in these cases are often difficult and fraught with emotion.
Under Texas' disability policy, the state will pay whatever it takes to keep medically fragile children in a family home, whether it's with blood relatives or a foster parent. But the moment they turn 21, different rules apply.
By state law, these people may continue to receive care at home, as long as the cost of in-home treatment is no more than twice what it is in an institution. If state officials determine that the cost of home health care exceeds this cap, the person has three options: move into a nursing home or state school, cut costs at home or use the 2007 provision to make up the difference.
Settling for less
The problem is in the fine print. For a person to qualify for the exemption, health care officials must determine that he or she can't be safely served in an institution – a tough threshold to meet, advocates say, when state doctors are making the assessment.
As a result, some families have had to settle for less to keep their relatives at home.
Pete and Michele Michaelsen of Fort Worth agreed to cut back on nursing hours for their 24-year-old daughter, Sasha, rather than institutionalize her. Sasha has spastic quadriplegic cerebral palsy and serious brain disorders, but she did not qualify for the exemption.
Now, after a taxing work week, the couple has almost no nursing help on the weekend; they take turns staying up all day and all night to make sure she can breathe and to soothe her frequent seizures.
The couple's idea of a date, Michele said, is a candlelit dinner in the living room, with Sasha's tiny body propped up on the couch, and her suctioning machine whirring in the background.
The Michaelsens are pushed to the limit. But Pete says they have no other choice. Despite what state health officials say, he is sure Sasha would die in an institution.
"We're already fighting so many fights on so many fronts," Michele said. "We shouldn't have to fight so hard to keep our child alive."
Craig, Simmons' foster mother, knows all about such fights. She committed her life to keeping him alive, spending decades navigating his cerebral palsy and brain disorders. She and a nearly around-the-clock rotation of nurses monitored his breathing and temperature and managed his seizures. They fed him through a tube and rotated his body to prevent sores.
Even though the doctor who treated Simmons since birth testified that he would suffer in an institution, state officials – and then a court – ruled otherwise. State health officials argued in legal briefings that they could serve many other people with disabilities for the cost of keeping Simmons at home.
"When I got Toby, they told me, 'Take him and love him, because he won't live three months,' " Craig said. "I raised that boy to be 22 years old, and then this. The pain is just indescribable."
An autopsy has not been finished, and Simmons' death remains under investigation.
'No right answer'
State officials say cost puts them in a difficult position. It can take more than a half-million dollars a year to provide home care for the severely disabled, money that can serve more than a dozen people with lesser disabilities.
"There's always the debate: Should a lot of people get a moderate amount of care, or should some people get an excessive amount? There's really no right answer," said Albrecht, the state agency's spokeswoman.
They say that in most cases, they successfully balance providing care at home without sacrificing the nuts and bolts of quality care for the others.
"The core services – they're all still there," Albrecht said. "In many cases you see the families stepping up."
Advocates say scrimping on services at all can have awful consequences, for people with disabilities and their caregivers. But they say state health officials have little incentive to spend the extra money to keep someone at home – they don't get federal matching dollars for it, and it eats away at their bottom line.
And families have little recourse to appeal the state's decision, aside from costly lawsuits.
"When it first came out, those of us working on this issue were stoked. We thought this was going to be the solution to what's been a persistent problem," said Advocacy Inc. attorney Kathryn Lewis, who said she's seen nearly a dozen lawsuits filed over the budget provision. "Instead, it's just been another way of denying home-based care. Parents are being forced to settle for less."
Emphasis added by H4K Editor