Senate GOP health bill could affect kids with disabilities

(Harrisburg) — You’ve probably heard how the Senate GOP health care plan would cut federal spending on Medicaid – which could hurt thousands of low-income, working Pennsylvanians.

But through a special program in the commonwealth, Medicaid also helps middle-class families who have children with disabilities.

“I’m already in Boy Scouts it’s a little different than Cub Scouts. We sometimes go camping and I like going camping.”

Jackson Corbin and his brother Henry like to play Minecraft, read on their Kindles, and make all kinds of things with Legos.

In other words, they like to be kids.

But the brothers – who are 11 and nine years old – have a genetic disorder called Noonan Syndrome.

It’s a complicated condition that can affect all parts of their lives.

It’s biggest impact? Slow growth, heart disease, and bleeding disorders.

“We can’t play sports, and can’t do some things,” says Jackson. “Sometimes our friends have roller skating parties, and we can’t go because we might bang our head. All the kids there are roller skating, and we can’t, unless we wear a giant pillow suit.”

Their mom, Anna Corbin has to find a way to stop the bleeding if they get cut or fall, and if they hit their head, that means a trip to the emergency room for a CAT scan.

The boys also take a bunch of prescriptions to control their digestion.

Says Jackson, “It used to be real bad. We used to throw up all the time.”

On top of the day-to-day challenges, they’re eight times more likely to develop Leukemia or other cancers compared to other kids.

Before giving birth to Jackson and Henry, Anna was working as the manager of a hair salon in Hanover, York County. Her husband had a job at an insurance company.

But when her boys were diagnosed with Noonan, their lives quickly changed.

“It’s not just medical bills. It’s not. The medical bills, to be honest, you can put off, get sent to collections,” says Anna. “The immediate costs. I had quit my job when I had Henry because of all the things that were happening.”

It was one issue after another.

Heart problems.

Vomiting every day.

Surgery after surgery.

“We were paying thousands of dollars a year just in prescriptions alone, and you can’t put those off. It was common for us to not buy milk because we needed to buy a prescription,” she says. “We would look around the house and be like, we don’t need that chair, let’s put that on craigslist and then we can go buy medicine.”

Now, Anna and her husband live a middle-class life.

While her husband managed to keep his job through all of it and use their private insurance, that only covers so much.

“By 2010, we were $42,000 in credit card debt. Tons of medical debt and we were drowning.”

Then, Corbin heard about a program known as PH-95.

It’s a part of Medicaid in Pennsylvania, and any child with severe disabilities is eligible for it, no matter how their parents make.

All of a sudden, the family didn’t feel the burden of all those bills.

“We didn’t file bankruptcy. We didn’t lose our home. Our cars weren’t repossessed. We paid our bills. We started stimulating the economy again. Our credit score went up. Everything we had was going to taking care of our sons, and keeping them alive and keeping them healthy,” she says.

They’re able to make regular visits to specialists, and get the drugs they need that private insurance won’t pay for — without worrying about the cost.

Pennsylvania says more than 60,000 kids are a part of this one Medicaid program.

While Jackson and Henry are homeschooled, many of the children in PH-95 get help at school for their ADD or autism, says Colleen McCauley, the health policy director at Public Citizen for Children and Youth in Philadelphia.

McCauley says Medicaid reimbursed schools more than $130 million last year for services in school – things like behavioral health therapists, and occupational and physical therapy.

Things private insurance often doesn’t cover.

So if Medicaid is capped and the state can’t make up the difference?

“It will set up really hard choices for schools. Are they going to need to raise taxes, so that schools have the funds they need to make sure every child can go to school? Divert funds from other educational needs? Are schools going to have to cut teachers?” says McCauley.

McCauley says Medicaid is a safety net for so many.

“Children are going to need these health care services, whether there’s money to pay for them or not. It’s not rocket science. When you have insurance, you stay healthier.”

Meanwhile, US Senator, Republican Pat Toomey, has been fighting to cut Medicaid spending.

In a town hall on ABC 27, he said the program is unsustainable, and will eventually cause a fiscal crisis.

“The federal government will spend more money on Medicaid each and every year indefinitely under the Senate plan. But it will grow at slightly slower pace, and that makes it sustainable,” says Toomey.

Toomey has declined interviews with WITF for months. His office did not respond to a request for comment for this story.

“We’re probably most at risk because income isn’t counted when it comes to our group,” says Anna Corbin.

She’s been hitting the road to make her case that Medicaid should be preserved at its current funding levels.

She, Jackson and Henry recently met with Pennsylvania’s other US Senator – Democrat Bob Casey – in Washington DC, and she’s taken trips to Harrisburg to press her points.

“Without safety nets like Medicaid, I don’t know how any medically complex children would get to go to college, because how would their parents would be able to save for it,” says Anna.

“My kids didn’t make some mistake. This is what they were born with.”

The latest version of the Senate GOP health care bill is on the move.

Anna and her boys Jackson and Henry say they’ll be watching.