In 2005, Washington changed the way it determines the levels of Medicaid-funded support for home and community residential care services.
The switch slashed the amount of time in-home care providers can spend assisting a Spokane family’s four adopted children, who suffer the lifelong effects of fetal alcohol syndrome.
Under the new rules, the amount of time in-home caretakers can spend with the children of Hugh Kelly and Deborah Kelly-Corn dropped about 64 percent – from 368 hours per month to 132.
The caretaker support is in addition to monthly state-funded adoption support payments, which parents negotiate with the state and can range from $350 to $1,300 per child, said Jan Lammers, the adoption support consultant who worked with the Kelly family when the children were small. They are now teenagers.
All together, monthly government support covers about half of the children’s expenses, said Hugh Kelly, who declined to release financial details. But in the past 18 months, out-of-pocket costs for braces for two of the children totaled more than $11,000, none of which was covered by insurance, he said.
The Kellys contested the cuts to the Medicaid assessments in 2005. They prevailed in state Superior Court last year when Judge Kathleen O’Connor reversed a lower court decision, restoring the previous levels of service.
But in February, the Washington Department of Social and Health Services reopened the case, asking the state Court of Appeals to overturn O’Connor’s ruling.
John S. Meader, the assistant attorney general representing the state, said the children no longer need as much help with basic living skills such as using the bathroom, bathing and eating.
The cost of raising a child with fetal alcohol syndrome is more than $2 million over a lifetime, and the total annual U.S. cost is more than $4 billion, according to figures from the National Institute on Alcohol Abuse and Alcoholism, an arm of the federal government.
The Kelly family said it cannot bear all the expenses necessary to ensure their children become as independent and self-supporting as possible. Investing in their children now will “pay off for the next 60 years,” Hugh Kelly said.
Dr. Stephen Luber, a Spokane pediatrician who treats special-needs kids, including the Kellys, said in court documents: “These kids are incredibly well-maintained with very few major problems relative to what I normally see on a day-to-day basis.
“They are an example of how well children can do if they are properly supported on a continuous basis with parents who are willing to go the extra mile and sacrifice a lot of their personal life.”
O’Connor agreed when she found it in the state’s interest to encourage adoption of children with special needs.
“Prior to the adoption the state was totally responsible for all of their care. It would be manifestly unjust to allow the state to have the benefit of the adoption … and withdraw services from the adoptive home that are necessary to allow the children to reach their potential,” she ruled.
The appeals court is expected to rule on the matter this year.