A new Medicaid co-pay will require some parents of disabled children to pay out of pocket for services. While The Department of Public Welfare calls the amount a “fair share” some parents say it will infringe on their ability to provide care to their children.
Parents of some children in Pennsylvania with physical, intellectual and mental disabilities will have a new concern going forward – finding the money to pay for services that up until now, were paid for by the state.
Families earning more than 200 percent of the federal poverty level with a child on Medicaid because of a disability will be required to pay a co-pay for services. The co-pay will vary depending on a families income and it’s on a sliding scale. Some things, like prescription drug prices, will be fixed. And there is a five percent cap.
The co-pay begins today for families new to the system and next month for those already enrolled.
"If you have a family who makes 100,000 a year they will have a 5,000 annual for copayment...so…here are families who are making 100,000 a year and currently are not paying anything at all," said Carey Miller, spokesperson for the Department of Public Welfare.
There are 48,000 families who receive Medicaid services in this category. Those are families with a child with everything from Attention Deficit Hyperactivity Disorder to Downs Sydrome to a hearing impairment.
DPW says about 80 percent of these families have incomes above 200 percent above the federal poverty level and about 1 in 4 have an income above $100,000 a year
The Department of Public Welfare says the money covering care for these children shouldn’t come from taxpayers but from parents who can afford it.
Connell O’Brien, a Children’s Policy Specialist at the Pennsylvania Community Providers Association says basing it on gross family income isn’t fair – because parents of a disabled child tend to have higher costs for everyday neccesities such as transportation and high co-pays for their private insurance.
He also fears parents may be inclined to shift the cost of these services into school districts and education plans. But mostly, he has concerns about how the co-pay process itself will work.
"We’ve worked very hard in Pennsylvania to move a lot of behavioral health services into the home, into the school, into the community where a mental health professional or staff person is delivering care – they are not equipped like my doctors office is to have a person an administrative support front desk to charge my copay collect the money, It would have to be done in the classroom, in the cafeteria, in the living room, by the person who is delivering the care, not by somebody who is trained to handle cash management and handle the co-pay and so on and so forth," he said.
For parents who will have to budget for the co-pay, there are other concerns.
Jim Bouder and his wife make just under $100,000 a year. They have two sons – one of which, Donovan is severely autistic and has between 25 -30 hours of behavioral therapy sessions a week. Bouder says losing five percent of their income – for them $430 a month will require some sacrifices.
"We could look at our food budget a bit and see if we could buy smarter we wouldn’t be able to purchase new clothing as frequently as we would like – we would not be able to absorb an unexpected large expense," he said.
Bouder says they will find a way to get by, but what concerns him the most is how this will affect their son’s future.
"Donovan has a life long condition and the only way we can ensure that he is taken care of after we are too old to continue caring for him is to start putting money aside in a disability trust so he is ensured of having the support that he needs when we’re gone," he said.
While the Bouders don’t plan to cut any of their son’s care, Connell O’Brien at the Pennsylvania Community Providers Association says as the program progresses and other expenses come up for parents – it might be something that goes for other families.
"We do know just from other health care research that when a family or an individual has to pay out of pocket they begin to self-ration health care services," he said.
This legislation was passed last July as part of Act 22 The Department of Public Welfare says these Medicaid services costs taxpayers approximately $700 million a year. By initiating this co-pay, the state will save $5 million dollars.
This story is part of a partnership between 90.5 WESA, NPR and Kaiser Health News.