Families of children with autism fear Pennsylvania policy change

PHILADELPHIA (WPVI) -- Thousands of people have signed an online petition urging Pennsylvania to change a new policy which will affect families of children with autism, which goes into effect on January 17.

"I'm trying to figure out what next week is going to be like," Lauren Baldwin of Levittown said.

Baldwin explained her 4-year-old son Ryan has flourished since he started at Potential in Newtown, a non-profit that treats autism.

But starting Sunday, Ryan is among thousands of children in Pennsylvania whose families fear that federal Medical Assistance will no longer pay for their one-to-one center based Applied Behavior Analysis services due to a new state policy.

"I tried to call our insurance, and they don't cover any autism. Medical Assistance is basically all he has," Baldwin said.

Potential founder, president, and CEO Kristine Quinby said while home-based care works for some children, others need resources and social interaction at centers like this one.

"Yes, we do have other kids here, so it is like a group, but they're still 1 to 1, so they are getting the intensity prescribed to them," Quinby said.

Quinby said that without Medical Assistance, these services could cost families $80,000 a year. Even with employer health insurance, families could still spend thousands annually.

"You're saying that kids that have commercial insurance will be allowed to have this service, but kids who have Medical Assistance, who have socio-economic difficulties, are not," Quinby declared.

Medical Assistance will still pay for sessions conducted at homes, but some families say that doesn't work for them.

The Mitchells of Doylestown have two children at Potential.

"We just have Medical Assistance. Thanks to the pandemic we are both unemployed right now," said Jessica Mitchell.

Jonathan Mitchell added, "We have done the ABA therapy at home, which is what the state is trying to prescribe, and for our children, it doesn't work."

This policy change is not related to coronavirus, but the pandemic does complicate matters.

Employees enter homes, which may not have the same safety protocols as the center.

"Our employees feel safe here and our kids feel safe here, our families feel safe here," Quincy stated.

Erin James, Press Secretary for the Department of Human Services, released the following statement saying in part, "... services will not be abruptly ended. When it is determined to be medically necessary and clinically appropriate, Medical Assistance will pay for ABA services provided in a center-based setting."

Some advocates fear the policy's wording is open to interpretation and could make it more difficult for children to get these services.

Kathy Christou of Croydon, whose son Alexander attends Potential said, "People that are in charge that make these laws that decide these regulations really need to sit and think about what they mean to the parents and the people who are affected firsthand."

"Don't take this away from the kids- they need it," Baldwin pleaded.

For more information on the petition visit https://abaourway.com.

The full statement from DHS is below:

On October 19, 2019 the Department of Human Services (DHS) promulgated the Intensive Behavioral Health Services (IBHS) regulations. The purpose of the IBHS regulations is to codify the minimum licensing standards and program requirements for participation in the Medical Assistance (MA) Program and MA payment conditions for agencies that provide IBHS to children, youth and young adults under 21 years of age with mental, emotional and behavioral health needs. IBHS replaces Behavioral Health Rehabilitation Services (BHRS). BHRS will no longer be available after January 17, 2021.

Children, youth and young adults currently receiving 1:1 Applied Behavioral Analysis (ABA) services in a center have been determined to have a medical necessity for the services they are receiving. That determination will not change when BHRS is no longer available and services will not be abruptly ended. When it is determined to be medically necessary and clinically appropriate, Medical Assistance will pay for ABA services provided in a center-based setting. To further assist providers, DHS's Office of Mental Health and Substance Abuse (OMHSAS) will release guidance on the process they will need to utilize to be able to provide and bill for these services when they are determined to be medically necessary.

IBHS regulations do not address payment by commercial insurance for 1:1 center-based services and licensed IBHS agencies may continue to provide these services and bill commercial insurance.

DHS is committed to ensuring children, youth and young adults receive appropriate clinical services to meet their individual needs, and to do so in settings best able to provide a therapeutic environment to meet those needs. We recognize that changes to program regulations and design can create uncertainty about continuity of care. The changes OMHSAS is implementing are designed to ensure that services are meeting minimum licensing standards, provided by qualified staff and have regular oversight to ensure the wellbeing and safety of the children and youth we serve."