Michele Bethell, mother of a child with severe autism, was on her computer Friday along with about 700 other parents for a "Webinar" on how to fight the state's controversial new plan to levy Medicaid copayments on her and other families for behavioral and medical services.
About two-thirds of the way through, though, a lawyer hosting the Webinar for a nonprofit, Pittsburgh-based group, Parent Advocacy Education and Leadership Center, was handed a news release that had just been issued by Department of Public Welfare Secretary Gary Alexander.
"The lawyer proceeded to read the press release to us word for word, and then stopped the Webinar," Ms. Bethell said. "Basically the message we got was, never mind."
At least for now.
After more than a week of protests and news conferences -- not to mention amendments and new bills to block the copayments by legislators whose offices had been flooded with calls -- Mr. Alexander announced the department would delay imposing them until further notice.
The department's cost-sharing initiative, which had been approved as part of the 2011 budget, was aimed at families with incomes 200 percent above the poverty line who were receiving coverage under Medicaid -- known as Medical Assistance in Pennsylvania -- to make an increasingly expensive program sustainable for the future, DPW officials said.
Last week, the department sent letters to some 48,000 families informing them they would be required to make copayments as of Oct. 1, but many contained erroneous estimations of a family's gross income, and there was no consideration of out-of pocket costs already being paid.
Parents of children with disabilities are a fairly vigilant group, but they were caught by surprise because the 2011 budget language allowed the copayments to be implemented without going through the normal regulatory process, which would have required extensive hearings and comments from the public.
"This was sold as something we needed to fight for welfare reform," said Rep. Frank Burns, D-Somerset, who introduced a bill this week delaying the copayments until further studies could be conducted. "But this was not the kind of welfare reform they were talking about. I'm all for cracking down on fraud, waste and abuse. We need to streamline government. But these are the unintended consequences you get when you give too much authority to a department."
Families and advocates "recognize that they need to be part of a solution and would not oppose payments that more accurately reflect ability to pay," added Democratic House Leader Frank Dermody, D-Oakmont.
"The overriding concern of most people was that this plan was to be implemented so quickly after it was announced," he said, noting that copayments could have been as high as $100 per occurrence under the plan. "It promised to cause problems for families, service providers, and the state if it had been carried out."
Now, instead of copayments, the department will seek permission from the federal government to impose an upfront premium "so families can budget more efficiently in advance," said DPW spokeswoman Donna Morgan.
The department had initially approached the Centers for Medicare and Medicaid Services -- the federal agency administering those programs along with the state Children's Health Insurance Program -- seeking permission to apply a premium, but had been discouraged from doing so, Ms. Morgan said.
Under the Affordable Care Act, a state may not impose any new conditions on Medicaid eligibility, and it's not clear if the federal government will be willing to waive those conditions, but faced with fierce opposition to the copayments, state officials appear prepared to try again.
"Stakeholders have clearly indicated to the department an understanding of the need for families to contribute to this program," Mr. Alexander said. "With the delay, there is an opportunity to work with stakeholders to continue to pursue the premium from the federal Centers for Medicare and Medicaid Services. We look forward to working with them in achieving this shared goal.
The focus needs to be on two questions, said Jim Bouder, part of a team of advocates who has coordinated grass-roots activity across the state on behalf of families.
"Is the cost-sharing plan fair to families? And is 200 percent above the poverty line an appropriate metric, or do we need to take into account whether urban regions are more expensive, for example?"
He also repeated a common complaint -- that the state Insurance Department has been lax in enforcing Act 62, a law that requires insurers to cover up to $36,000 in services annually to children with autism. Many insurers simply refuse to pay claims, he said, and there is little effort to go after them when they do.
In many cases, once an insurance company denies a claim, the provider bills the state's medical assistance program, resulting in up to $25 million in lost savings, advocates claim.
"That law is 4 years old and, due to poorly coordinated collection efforts, the state has yet to see the financial benefit that was expected," Mr. Dermody said. "By making sure the state does not foot the bill for services that insurance companies are legally obligated to cover, we can realize millions of dollars in annual savings that could be directed to improve services to families and children."
Melissa Fox, a spokeswoman for the department, noted that self-funded insurance plans are exempt from Act 62's requirements, and that coverage is only for services deemed medically necessary.
"If something isn't being accepted, it's possible that it isn't covered under the law," she said.
Those parents who feel they've been unfairly denied coverage by an insurer can file a complaint with the department, but since Act 62's enactment in 2008, there have been fewer than 30 complaints, she said.
Many parents have no idea about how to appeal a denied claim, said Mr. Bouder, noting that DPW could obtain reimbursement for wrongfully denied claims. "It's called pay and chase. They could hire someone to do this," said Mr. Bouder, adding that he hopes that the department, legislators and advocates will meet soon to figure out a compromise.
"To be crystal clear," he added, "stakeholders have clearly indicated they are not categorically opposed to the notion of cost-sharing," as long as "all appropriate and interested parties have seats at the table and the aim is to weigh our options and achieve consensus."
But that may be hard, given that on both ends of the economic scale, caring for a loved one who is disabled remains a hugely costly endeavor.
Ms. Bethell of Sewickley says she's relatively lucky. Her husband, who works for an overseas company, sends her money when he can to help cover the care of her severely autistic son.
"But my income isn't stable," she said, noting that she is living off her savings, "and I couldn't possibly tell the Department of Public Welfare how much income I'm going to have next year."
Mackenzie Carpenter: firstname.lastname@example.org or 412-263-1949.