Under the Republican-backed health care plan passed by the U.S. House earlier this month, the federal Medicaid program would undergo a major overhaul. States would receive a fixed amount of money for the program, versus the open-ended federal support they now get.

Supporters of the American Health Care Act say the change would control spending and give states more flexibility. But opponents argue that it will result in cuts to care.

In terms of sheer numbers, low-income children and adults account for most of the people enrolled in Medicaid. But that’s not where most of the program’s costs go to — they go to people like Evan Klane of Fairfield.

“Evan? Let’s see. Loves music. He’s my concert buddy. He has seen Miranda Lambert, Dierks Bentley, and Toby Keith, and the Dixie Chicks. He was a Make-a-Wish child in 2000,” says Deborah Klane, Evan’s mom.

When Evan was born 26 years ago, he experienced birth trauma.

“I had a very difficult labor and delivery with him, and he was deprived of oxygen between 5 and 8 minutes, which is quite a lot. As a result, he has cerebral palsy,” Klane says.

That’s Evan’s umbrella diagnosis. He also has microcephaly and severe epilepsy. He breathes through a tracheostomy and eats though a feeding tube.

He can’t speak or move on his own, except to smile or raise his hand to answer “yes” to a question. That’s how he communicated to ultimately graduate from high school.

“He requires one-on-one, total care, 24/7, 365 days a year,” Klane says.

Nurses care for Evan during the week, which allows Klane to go to work. That care — long-term care — is provided by Medicaid.

According to the Kaiser Family Foundation, people with disabilities and seniors make up a minority of Medicaid enrollees — about a quarter. But their care accounts for the majority of the program’s spending — 64 percent.

The proposed changes to Medicaid under the GOP replacement bill threaten this kind of support, says Ann Woloson, a policy analyst at Maine Equal Justice Partners, because Medicaid would change to a per-capita cap program or block grant, which would limit federal reimbursement.

“It is probably the least understood, and probably one of most financially damaging to states,” she says.

Currently, the federal government has an open-ended commitment to chip in on state spending on Medicaid, no matter how it fluctuates. But the block grant, or per-capita cap, would allocate a set amount of money, which Woloson says will leave states short-changed.

“Health care costs continue to grow, continue to grow. So if all of a sudden we’re saying, ‘We’re only going to give you the amount for every person that we were paying you for the year 2016,’ which is what this new plan says, it means the state is going to have less money to provide services, necessary health care services, primarily to the elderly and disabled,” she says.

Lori Pomelow is the administrator for Russell Park Rehabilitation and Living Center in Lewiston. It’s a 103-bed facility that provides skilled nursing, long-term and residential care.

“Seventy percent of our residents that live here — 70 percent of the 103 residents — are paid for by the Medicaid program,” she says.

Medicaid is the primary payer for long-term care in the U.S. But Pomelow says the program’s current reimbursements don’t match the cost of care. She doesn’t see how capping program spending will meet future needs, as Maine’s population ages and nursing home residents arrive much sicker now than in the past.

“The state of Maine has already had some nursing facilities that closed because the rates of reimbursement from the MaineCare or Medicaid program, they didn’t get the money they needed to match what they were actually spending. And the reality of it is, there aren’t enough nursing home beds in the state right now to meet all of the need that’s out there,” she says.

“I am absolutely confident that we can apply fiscal discipline to effectively manage the program to better meet the needs of those on the program,” says Maine Department of Health and Human Services Commissioner Mary Mayhew.

Mayhew says she supports converting Medicaid into a block grant program, in particular, because it gives states more flexibility in how to spend Medicaid dollars.

“In the last few years, it has taken years to get requests approved through the federal government that have allowed us to advance innovative models of care,” she says, adding that Medicaid would still have performance requirements to ensure accountability.

A spokesman for Republican U.S. Rep. Bruce Poliquin of Maine’s 2nd District said in a written statement that Poliquin also supports giving states more flexibility while protecting individuals with disabilities and the elderly.

But Klane says even under the current system, where federal spending is open-ended, her son’s care hasn’t been protected. When he turned 21, the state determined that instead of Evan needing 24 hours of care a day, he only needed 4.

“What it would really mean is that his caregiver, me, would be functioning on four hours of sleep every day, and having to assess his seizures, assess him medically and administer medications in the right proportions, the right doses,” she says. “That’s dangerous.”

Klane fought the state in Superior Court and won. Since then, she says, the state has tried two more times to reduce Evan’s care.

If Congress decides to change Medicaid so states get a fixed amount of money, she says she expects the battle for Evan’s care to continue.

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Already Financially Stressed, Maine Caregivers Fear Medicaid Cuts in AHCA – Maine Public