PHILADELPHIA – Four Pennsylvanians with intellectual and developmental disabilities have filed a class action lawsuit against the Pennsylvania Department of Human Services Office of Developmental Programs (ODP) over two rules that restrict Medicaid reimbursements for in-home care.

One rule, known as the 40/60 rule, caps the number of hours per week that an individual family member or a third-party caregiver can be reimbursed through Medicaid for in-home care at 40 hours per week. And when an individual has more than one family member provide services, the family members may collectively be reimbursed no more than 60 hours per week, even though the individual is legally entitled to more hours of care.

The second rule, known as the travel rule, prohibits reimbursement for care provided to a participant when they are outside of Pennsylvania or the six states that border the commonwealth, severely restricting their ability to travel.

The families challenging the rules are from Montgomery, Allegheny, Cumberland, and Lebanon Counties. They filed the class action lawsuit on behalf of themselves and other Pennsylvanians in the same situation.

Filed by the Public Interest Law Center and pro bono co-counsel at the law firm Kessler Topaz, the lawsuit states that the Pennsylvania Department of Human Services did not implement the rules through the proper rulemaking process, as required by two court rulings from earlier this year. The Pennsylvanians who filed the suit have intellectual and developmental disabilities significant enough that they cannot live independently and require assistance for managing their daily lives; some require care 24 hours per day.

“MichaelAnn has a rare degenerative brain disorder, and it has progressed quickly these last few years. Someone needs to be able to see her at all times because she silently chokes,” said Sherry Byrne of Cumberland County, whose daughter MichaelAnn is a participant in the waiver program and one of the plaintiffs in the case. “She loves adventures and traveling, and we are trying to do as much as possible in the time she has left. I’m a single stay-at-home mom, and I cannot give her the life she wants with these new restrictions. ODP wants her to have an ‘Everyday Life’ but on their terms. They need to understand the impact this is having on real people.”

Pennsylvania reimburses family members as paid caregivers so long as the family members meet certain qualifications and the support goes beyond what would be expected to be performed in the usual course of parenting. In recent years, these paid family caregivers have been more important than ever, as families have struggled to find willing and capable external caregivers because of the severe ongoing post-pandemic shortage of direct care workers. These paid family caregivers also relieve the commonwealth of its statutory obligations to care for individuals in more expensive settings.

The travel rule has forced families in the program to make the difficult choice between not traveling for significant family moments, such as weddings, vacations, and once-in-a-lifetime trips to places like the National Parks and the Special Olympics, or taking the trips and not receiving Medicaid reimbursement. In some cases, the families are planning trips now before their family member is physically unable to travel.

“I have always been involved in Kristen’s day-to-day care, and she has lived with me since 2016,” said Jessica Millar of Montgomery County, whose sister Kristen Millar has a rare brain condition called holoprosencephaly and is a plaintiff in the case. “We are consistent travelers. After our parents’ deaths, we felt an intense desire to reconnect with family and friends. And we travel to medical conferences all over the country, to learn about the current research and reconnect with families we’ve met at past conferences. Traveling with staff makes these trips possible. The travel restrictions being imposed will prevent future trips to medical conferences, stop us from visiting friends Kristen loves, and prevent her from participating in normal activities that others take for granted.”

The Medicaid Home and Community-Based waiver programs are administered by the department’s Office of Developmental Programs. The department had previously tried to implement similar rules, but, in February, Commonwealth Court found that these types of rules require the department to complete the rulemaking process. Because the department had not completed that process, the court declared those rules “null and void.” The rulemaking process includes a public comment period and allows affected citizens and industries to voice their concerns and shape standards. It also includes a vote by the Independent Regulatory Review Commission, which ensures that agencies do not overstep their authority or abuse their discretion.

In August, however, the department required participants in participant-directed services programs to sign new enrollment forms that included nearly identical rules, despite not using the rulemaking process. Some families noted their disagreement with these rules when signing their new enrollment form, but the department has now threatened them with involuntary termination if they do not sign a new form without any reservations by September 28.

“The state Department of Human Services is flouting the court’s earlier ruling,” said Michael Churchill, an attorney at the Public Interest Law Center. “Forcing persons to sign agreements with threats of losing home care services just confirms that these are mandatory rules which the court has held invalid.”

“The people impacted by these rules deserve the chance to be heard and to explain how devastating they would be for their families,” said Lee Rudy, an attorney with Kessler Topaz. “We are proud to support the Public Interest Law Center in making sure they at the very least receive that opportunity.”

The case, Byrne et al. v. Commonwealth, has been filed in Commonwealth Court. The plaintiffs are asking the court to declare the rules invalid, void, and unenforceable. Copies of today’s filings are available here and here.