Jennifer Henning and son Connor

Jennifer Henning with son Connor. She expects him to lose Medicaid coverage when he is reevaluated next month. Because of a brain injury, he cannot speak, uses supplemental oxygen and requires a feeding tube.

LINCOLN — Claire Aschoff took her first steps at age 3. That was in late December, the result of months of intensive physical and occupational therapy paid for through a special Medicaid waiver program covering disabled children and adults.

A few weeks later, the Blair child could manage barely seven independent steps, her mother, Bridget, told a panel of state lawmakers Friday.

But that was enough for Nebraska Department of Health and Human Services officials to determine, under standards that took effect Jan. 1, that Claire no longer qualified for the Medicaid waiver.

Claire, now 4, was born without part of her brain and cannot be potty trained, cannot dress herself, cannot process or control her emotions, and can speak only a few words. She was found ineligible for the waiver. Coverage ended Aug. 1, after the family’s appeal failed.

“Without the waiver, Claire will fall farther behind her peers, making the gap between what she can achieve and what she will achieve grow at an alarming rate,” Bridget Aschoff said. “We are now back to where we were (before Claire got on the waiver), uncertain of what the future holds for our daughter and under great financial strain.”

Aschoff was among several parents and grandparents of disabled children who told the Health and Human Services Committee how the new standards were affecting their families.

The waiver at issue is intended to keep adults and children with disabilities out of nursing homes and other institutions. It can pay for health care services and long-term supports, such as respite care, special formulas and home modifications.

Waiver eligibility is based on the child’s income, which means that coverage is available even if the family’s income is above the usual Medicaid limits. But children also must be disabled enough that they could be in an institution.

HHS adopted more restrictive standards for measuring a child’s disability this year. They are similar to some used until 2015, when the Nebraska Supreme Court ruled that those standards unreasonably excluded profoundly disabled children. HHS used less restrictive standards until the end of December.

State Sen. Sara Howard of Omaha, the committee chairwoman, said lawmakers began hearing from distraught parents soon after the change occurred.

Some of those same parents spoke Friday, including Jennifer Henning of Omaha. She said her son Connor got a reprieve from losing his coverage only because of the severe weather that hit the state this spring. In light of the flooding, HHS officials put a six-month moratorium on reevaluating children’s waiver eligibility.

“It’s sick to say , ‘Thank God’ for a flood, but thank God for that flood for families like mine,” Henning said.

But Courtney Miller, director of developmental disability services at HHS, said the moratorium has ended and the agency is starting to schedule reevaluations again.

She referred to state Medicaid officials questions about why HHS did not use the six months to make the standards less restrictive, given the concerns that have been raised by parents, state lawmakers and advocacy groups since January. No Medicaid officials attended the hearing.

Miller said the state hired a consultant to study the new standards and the tool used to measure children’s level of disability. The consultant is also looking at the standards used with adults covered by the waiver. Miller said initial results had been expected in October but are now likely to be available in December.

Henning expressed frustration at the delay. She said she expects that her son will lose his coverage when he is reevaluated next month, even though a loss of oxygen as an infant left his brain permanently injured. He cannot speak, uses supplemental oxygen, must be fed through a stomach tube and functions at the level of an 8- to 12-month-old.

Henning said losing waiver services could force her family to make tough decisions, such as whether to divorce or quit working so the whole family could qualify for Medicaid. Another option would be to admit Connor to a nursing home or to leave Nebraska altogether.

“We are not asking for handouts,” she said. “What we are asking for is assistance with our children so we can work, so we can provide.”

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Martha Stoddard keeps legislators honest from The World-Herald's Lincoln bureau, where she covers news from the State Capitol. Follow her on Twitter @StoddardOWH. Phone: 402-473-9583.

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