Erin, a 33-year-old Brookline mother of three autistic children, has done a lot of juggling in her life, but the letter that she received in the mail last week from the Department of Public Welfare knocked her sideways.
As of Monday, she and her husband, Tom, would be required to pay an estimated extra $400 a month in copayments for behavioral services that used to be covered by the state's Medical Assistance program because her family's gross income is $90,000 a year.
That may sound like a lot, but caring for three children with disabilities swallows up most of their income, said Erin, who asked that her last name not be used.
"I was floored to see this in black and white, but I at least knew it was coming because I'm involved in a lot of advocacy and online support groups," said Erin, noting that she posted an online petition protesting the new copayments that has gathered 2,000 signatures so far. "Most people didn't know what hit them."
Advocates and parents for children with autism and other disabilities have been in an uproar since the letters started going out advising some 48,000 families they'd have to chip in for some of the costs of services for their children.
Complaints have flooded legislative offices and House Resolution 879 -- calling for more detailed study of how the new requirements are being implemented -- was introduced last week.
Under the new DPW requirements, a family whose income is above 200 percent of the poverty level will have to pay up to 5 percent of their gross monthly income for "wraparound" services: behavior therapy, speech, occupational and physical therapies, medications, doctor's visits and more.
That means a family of four whose incomes is just at 200 percent of the poverty level, or $46,100 a year, will have to pay an added $2,300 a year.
In a recent statement, state DPW Secretary Gary Alexander noted that these services cost "$700 million a year, yet many of the families receiving this care have the ability to pay their fair share. About 80 percent of these families have incomes above 200 percent of the federal poverty level and one in four have an income above $100,000 a year."
Moreover, everyone has had plenty of notice, said Donna Morgan, a spokeswoman for DPW, who said the department is trying to save taxpayers money while keeping the system sustainable for the future.
"This has been in process for over a year now," said Ms. Morgan. We have had multiple meetings with stakeholders for over a year and we also presented this at our Medical Assistance Advisory Committee on several occasions, which includes families, providers, and other stakeholders."
Some families will be required to pay as little as $1, for prescriptions, for example, she said.
"That's ridiculous," countered Jim Bouder, an advocate for children with disabilities who has a 17-year-old son with autism. "If it was just about $1 in copayments, we wouldn't be having this conversation. Most people have thousands of dollars in hidden costs to pay, and some families have multiple children with disabilities."
Moreover, he said, the notices didn't go out until last week, and many of the gross income estimates were wrong.
"I was told I had made $44,000 more in income than I had actually made," Mr. Bouder said.
"DPW's concept of a fair share is disproportionate to other government programs that require Pennsylvania citizens to pay part of the cost," he said, noting that the Children's Health Insurance Program, or CHIP, requires a family of four to pay only $600 in annual premiums. But if a child is eligible for Medical Assistance, they're not permitted to be enrolled in CHIP.
"So then that family is facing up to $2,500 in copayments. It just adds insult to injury."
Medical Assistance -- Pennsylvania's version of Medicaid -- has a so-called loophole provision, enacted in the 1990s, that includes not just the poor but children with intellectual disabilities, including autism and Down syndrome.
For many families, it will simply be too much of a strain on already stretched household budgets, said Catherine Hughes, an official with Greensburg-based Family Behavioral Resources, since there is no factoring in of such expenses as private insurance premiums; medical costs not covered by insurance or the state; or mortgages, car payments, groceries and utilities.
"We feel their pain," said Ms. Morgan of DPW. "We're trying to serve them without raising taxes and sustain these programs for the future. We are not denying services. But there is an argument that if you have income and means and you are receiving public tax dollars you should be willing to contribute your fair share."
"I'm not opposed to paying my fair share," said Erin, noting that she and her husband pay $560 a month to send two children to the Catholic school down the street.
"But for a lot of people, these new copayments are going to so more painful. If you have to choose between the mortgage, the grocery bill or your kids' therapist, the therapist goes first on chopping block because your kid's got to eat."
Mackenzie Carpenter: firstname.lastname@example.org or 412-263-1949. First Published October 2, 2012 12:00 AM