Mt. Airy resident Kathy Roberson, 58, and her 26-year-old daughter, Katie, who has an intellectual disability and mild cerebral palsy. (Photo by Sue Ann Rybak)

by Sue Ann Rybak

Mt. Airy resident Katie Roberson is a natural beauty with large deep brown eyes, a petite slender frame and a quick smile.

At first glance, someone might think she is just an awkward teenager – not a 26-year-old woman with an intellectual disability and mild cerebral palsy. Cerebral palsy is a neurological disorder that affects muscle tone, movement and motor skills. Even simple movements – like standing still – are difficult.

“She cannot be left home alone at all,” said her mother Kathy Roberson. “She needs 24/7 care and supervision for everything from showering and dressing, to crossing the street, to anything that involves reading even a single world.”

At 58, Kathy worries about what will happen to her daughter when she is no longer physically able to care for her.

Thankfully, her daughter does receive some services under Medicaid through the Person/Family Direct Supports Waiver. Katie currently attends a day program at Blossom Philadelphia, 102 E. Mermaid Lane in Chestnut Hill. The program runs Monday through Friday from 9 a.m. to 2:30 p.m.

But that could end soon, if the American Health Care Act (AHCA) passes. The AHCA, also known as the Better Care Reconciliation Act (BCRA) or Trumpcare, would gut services for people with disabilities who rely on home- and community-based services through Medicaid, such as personal-attendant care, skilled nursing, and specialized therapies.

“I think people don’t understand what Medicaid pays for and the people and the families who rely on it,” Kathy said. “There is a lot of stigma associated with Medicaid. It’s thought of as ‘healthcare for those people.’ Medicaid pays for long-term services for those with special needs and the elderly. Cutting Medicaid would leave society’s most vulnerable people without services they need to survive.”

Paula Czyzewski, chief executive director of Blossom Philadelphia, said both versions of the American Health Care Act that Republicans have drafted would make drastic cuts to Medicaid, remove the Medicaid expansion and could potentially place a cap on Medicaid.

“The impact would be devastating for people with disabilities,” she said. “Many families are on the waiting list to receive services through a waiver. Currently, there are roughly 14,000 Pennsylvanians on the waiting list to receive support services. Almost 5,000 people on the list need emergency services right now.

“A lot of families are really scared that they will be locked out of services or their services will be cut. You have to wonder how these parents in their 70s are going to manage an adult person who needs to be lifted – needs to be showered – needs 24/7 care. A lot of people that we support don’t have any family support. It’s hard to fathom how this could happen.”

She said that the system is already underfunded.

“I think agencies are really struggling to provide appropriate levels of high quality care,” Czyzewski said. “There is a real fear that people – especially those with severe disabilities – will be locked out of services. Agencies will stop accepting people, because there are no funds to support services.

According to the nonpartisan Congressional Budget Office, the Senate bill or the Better Care Reconciliation Act would result in $772 billion in cuts to Medicaid spending by 2026.

Czyzewski said both versions of the AHCA, would cap the amount of federal funding that states can receive per Medicaid enrollee, with varying amounts for children, the elderly and the disabled. Currently, the federal government guarantees matching funds to states qualifying for Medicaid expenses, regardless of cost.

She said the loss of federal funding for states’ Medicaid programs could force states to reduce or eliminate access to optional services, including home-and community-based long-term services and supports.

Kathy Roberson said many legislators don’t understand what services Medicaid covers and “how life-altering” it would be if they are reduced or cut off.

“I don’t know anyone who is asking for some extreme fantasy amount of money,” she said. “We are talking about meeting people’s basic needs for survival. Every parent I know is willing to do the hard work to take care of their child or adult child, but they can’t do it alone. They need support. I believe we have a social contract or moral obligation to take care of one another.”

And it is that “moral obligation” that encouraged Kathy and her husband Jody Hey to adopt a child with special needs 25 years ago.

“We had a 5-year-old son and a 2-and-a-half-year-old daughter at the time, and knew we wanted more children, but decided we didn’t need to have more biological children,” she said. “It’s a bit startling to look back and see just how naive we were. While we underestimated the extent of the challenges we would face, we also underestimated what a gift Katie’s presence in our lives would become.

She said Katie draws people to her and “brings out the best in them.” She added that Katie reminds people “what matters most in the world.”

“It’s one thing if you don’t understand what Medicaid is and what it covers,” she said. “I can explain it to you. However, I can’t make you care.”

 

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