Thursday, November 25, 2010

Adults with disabilities in Illinois win first court battle for home care

From Joe Shapiro at NPR. In the picture, Olivia Welter's mom, Tamara, reads to her in the family's living room in Lincoln, Ill.

A U.S. District Court judge in Illinois has certified a class action lawsuit on behalf of eight people with severe disabilities who have either aged-out of a medical program for children or who are in danger of soon reaching the age cut off.

Among those included in the suit is Olivia Welter, an Illinois woman who turned 21 on Nov. 9 and as a result faces losing the level of state-funded care that her parents say has kept her healthy and alive.

We reported about Olivia's struggle to keep her state-funded nurses, and avoid going into a nursing home, on the Nov. 8 edition of All Things Considered. And her story was a topic last week on Talk of the Nation and here on our blog.

The decision by Judge William Hibbler, U.S. District Court, Northern District of Illinois, to agree to the request of the Welters and other families to be included in a class action suit strengthens the families' attempts to force the state of Illinois to continue the care to their sons and daughters. The members of the class are suing the Illinois Department of Healthcare and Family Services.

"It means there are many voices, not just one, or one family," says John Welter, Olivia's father. "And because of the interest of so many people across the country, it could have literally national impact. Having it certified as a class action law suit means the guarantees and protections that might come with winning this might be very broad and very enduring and very protective of a lot of very vulnerable people. That's our big hope and our excitement."

Just weeks ago, the Welters thought Olivia's nurses would walk out the door when she turned 21. But in late October, the family joined a lawsuit filed by the family of another disabled man who had lost services, William Hampe. The state of Illinois then agreed that it would continue the level of services that Olivia had been receiving while the case goes through the courts.

The U.S. Department of Justice has taken a stand in the case. Earlier this summer, it asked to be included as a party of interest, on behalf of the disabled plaintiffs. The lawsuit argues that it is a violation of the plaintiffs' rights, under the federal Americans with Disabilities Act, to cut off important health care funding that, as a result, could force them to live in nursing homes or state institutions.

Olivia was born with multiple disabilities. She cannot speak or move and she uses a respirator to breathe and gets her food and medicines through a tube. Her parents say she responds when they walk in the room by flailing her arms and making noise and that they can tell when she is happy or in discomfort.

Olivia gets 16 hours a day of nursing care in her home under a program for medically fragile and technology dependent children. That care is expensive. The nurses alone cost $220,000 a year.

On Talk of the Nation, Molly Hoffman, the advance practice nurse at Children's Hospital of Illinois in Peoria, the clinic that helps care for Olivia, said that although this is expensive, it actually saves the state money. "If Olivia were to be in the hospital in the intensive care unit, which is where she would have to stay if she was hospitalized, her cost would be over $600,000 a year. So you can see the kind of money that her family is saving."

They've saved that care by — along with the nurses — providing attentive and constant care that has kept Olivia healthy and out of the hospital. Until she turned 21, the state compared the cost of her home care to the cost of living in a hospital. But when people turn 21, the state says the measure of comparison is no longer that expensive hospital, but a less expensive nursing home. The state says it will pay for the full cost of Olivia to move to a nursing home. Or it will give the family the equivalent amount of money to pay for aides to come into the house and care for Olivia. The state argues that this still provides good care and that there are caps on how much it is allowed to spend in the adult program.

John and Tamara Welter doubt that their daughter would get the care she needs to survive in a nursing home — if they could even find one that would take such a severely disabled adult. If they lose their suit against the state, they are prepared to do more of the caregiving at home by themselves. They already care for Olivia the eight hours a day that the nurses are gone. The state expects them to hire less expensive personal care aides. But the Welters note that, by state law, aides are not allowed to give Olivia her complex medicines or put her trache tube back in if it were to fall out in an emergency.

Many states face similar dilemmas trying to fund expensive care to children and adults who rely upon ventilators and other technology. States around the country face record budget deficits and Medicaid costs are among the biggest causes. Illinois alone faces a $15 billion budget deficit this year