PORTLAND (AP) – Maine officials are considering whether the state can still afford to provide for free a $31.6 million program for severely disabled children that’s part of the MaineCare program.

Because of the state budget crunch, the Maine Department of Human Services wants to impose a sliding scale premium for MaineCare’s Katie Beckett program, which was introduced in the late 1980s.

More than 1,400 families use the program in which children with severe disabilities who normally wouldn’t qualify for the state’s Medicaid program can get free services. Maine is one of about 20 states with such a program.

Under the sliding scale, monthly premiums could range from $92 for a family of four to $1,200 for a household that earns more than $301,000.

The state is only asking families to pay a modest premium, said DHS spokesman Newell Augur. The proposal could save $300,000, he said.

Pat Thibodeau, a school secretary who lives with her husband and two of her sons in North Yarmouth, said her household’s $50,000-a-year income could not handle another monthly bill. The family already has two college loans and a house mortgage to pay off, and her husband just bought a convenience store.

But she doesn’t want to lose the 20 hours of weekly in-home support for her youngest, 13-year-old Patrick, who has Down Syndrome and attention-deficit/hyperactivity disorder.

“I guess we don’t know what we’re going to do,” Thibodeau said. “We’re already strapped as it is.”

The Katie Beckett program is not coming under scrutiny only in Maine. New Hampshire’s Department of Health and Human Services also wanted to save by cutting services to one-quarter of Katie Beckett participants.

Lawmakers there, however, rejected the measure. Katie Beckett supporters managed to show that the program keeps children out of institutional settings while preventing families from going bankrupt.

That premise was inspired by Katie Beckett, a 3-year-old from Iowa who was required to be hospitalized for viral encephalitis to receive Medicaid coverage even though home care was less costly.

Calling her case an example of “hide-bound regulations,” President Reagan allowed the girl to leave the hospital without losing Medicaid coverage.

At the urging of his administration, Congress allowed states to pay for home-health services instead of care just at hospitals and nursing homes through federal Medicaid waivers.

Before the state could start charging premiums, officials would have to consider comments taken at public hearings as well as testimony submitted in writing.

Now parents like Betsy Mahoney, a Cumberland parent with an autistic son, are mobilizing others to write letters to state and federal officials, hoping to make a difference while they can.

“The state’s done a poor job of letting parents of Katie Beckett kids know what’s going on,” said Mahoney, who predicts her family could face a $500 premium, “Everybody is in a panic over losing services.”


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