Help denied when most needed

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In many ways 5-year-old Abby Guernsey’s Thursday afternoon is like that of many other girls her age. Her mom picks her up from school and she gets to relax in the living room for a bit while watching her favorite Rick Charette video.

The moment the music begins, Abby’s face lights up. Her laugh is infectious and her legs and arms start to move. Her huge brown eyes float across the ceiling, and while she’s not moving very far, it’s clear that Abby Guernsey is dancing her heart out.

Actually, Abby, who weighs only 28 pounds, is lying on her back on an ottoman with a blanket and her favorite small red rubber alligator, which helps keep her anxious hands occupied.

Abby has Rett syndrome, a neurodevelopmental disorder that results in autisticlike behavior and the inability to perform motor functions. Rett syndrome strikes girls almost exclusively. Abby cannot walk, talk or roll over. She has scoliosis of the spine and seizures.

Because of their inability to speak, girls with Rett syndrome often are referred to as “silent angels.”

But those big, brown eyes say a lot. Last Thursday her eyes often lingered on the stranger who was visiting her living room. Mostly they let that visitor know that Abby just loves Rick Charette.

Abby was 2 1/2 years old when the family received the diagnosis of Rett, though her mother, Katie, who is a nurse, had long suspected that something was wrong and that her daughter was not developing normally.

Finally armed with a diagnosis, Katie got busy learning all she could about Rett syndrome and what she needed to do to best care for her daughter.

Right now that means getting Abby a new wheelchair with the necessary equipment to help keep her upright and to allow the chair to be strapped safely inside a vehicle.

While her family is blessed with private health insurance that will pay for 80 percent of most of Abby’s medical bills, the Guernseys and other families with severely disabled children rely on MaineCare to help offset the extraordinary health care costs.

“Before Abby I never anticipated I’d rely on MaineCare, but without it we would be destitute,” Katie said.

Katie contacted me shortly after my column last month that confirmed that MaineCare reimburses clients seeking methadone drug treatment for their mileage, bus fare or cab fare that they spend getting to a clinic each day.

At the time the Department of Health and Human Services was unable to tell me how much that costs MaineCare, but has since informed me that it costs about $378,000 a year for methadone clients’ transportation to and from the eight clinics in the state.

Shortly after reading that column, Katie was notified by MaineCare that her request for a new wheelchair for Abby “cannot be approved at this time.”

Katie was a not a happy momma.

The wheelchair Abby now has is a chair-stroller. She has had it for three years, and, like all children, she has grown. Unfortunately, her muscle tone has diminished and the current chair no longer can keep her in an upright position.

“It’s not like I’m trying to get something for nothing. My own insurance will pay 80 percent of it,” Katie noted.

Katie didn’t go searching for a new chair on a whim. She first tried adapting the old chair. An employee at Black Bear Medical Supply in Bangor worked from his home trying to mold metal to form the lateral supports that Abby needs.

“We really tried to use the old chair, but finally it was clear that it was not going to work, so we had what they call a wheelchair clinic,” Katie said.

In the end, doctors, rehabilitation specialists and physical therapists filled out the paperwork and sent the requests to MaineCare stating that it was time for Abby to have a new ride.

The entire cost? $6,443, of which 80 percent would be paid by the Guernseys’ private insurance.

But what do doctors, parents and physical therapists know?

MaineCare wrote back. “There is nothing in the available records that show changes that would render the current wheelchair setup unusable or unable to be modified to meet this member’s needs.”

Unlike most MaineCare clients, the Guernseys pay a monthly premium, as their MaineCare coverage is made possible by something called the Katie Beckett fund. That fund was designed specifically to allow families with severely disabled children to try to keep them at home and out of nursing and group homes.

It is not income-based, but instead is based on the disability of the child, and the parents pay a monthly premium for the benefit.

“It’s just the point of it that makes me so angry,” Katie said last week. “There are so many people out there taking advantage of this system, and here we have this genuine need and we’re just asking for a little help for something we actually pay a premium for and someone sitting behind a desk somewhere who’s never seen my daughter writes me back and says, no, they guess she doesn’t really need this.”

And like so many other family members caring for disabled loved ones, Katie Guernsey has added battling with MaineCare to her list of duties.

This time my bet is on her.

Meanwhile, Abby seems to have grown bored with the stranger in her midst, and though like all children she struggles against the pull of sleep, even Rick Charette can’t compete with her need for a little catnap.

reneeordway@gmail.com