Pa. families fear Medicaid cuts affecting people with disabilities

TROY — Residents gathered at the Troy Sale Barn Tuesday evening to voice concerns on possible Medicaid cuts that would negatively effect individuals with disabilities.

Multiple people rallied at the Troy venue to listen to a panel of families with special needs organized by Vision for Equality. The nonprofit advocates for disability rights and help families gain access to support and services, especially from Social Security, Medicaid and Medicare, according to Ned Whitehead, its community advisor.

"There is fear that Medicaid funding is going to be cut," Whitehead said. "Our fear is that it's going to effect our individuals with disabilities."

The Tuesday forum specifically focused on how possible cuts would effect the Medicaid Home and Community-Based Services waivers. HCBS or Section 1915© waivers, "allow states to use Medicaid funds for long-term care services in community settings, rather than institutional settings, for individuals who would otherwise need institutional care," according to Medicaid.gov.

The HCBS waivers benefit around 40,000 residents of Pennsylvania, Whitehead stated.

Around 400 individuals with disabilities in Bradford and Sullivan counties benefit from the Medicaid HCBS waivers, according to Mayme Carter, the administrator of Bradford County Human Services.

Organizers invited all elected officials representing Bradford County at the local, state and federal levels. Bradford County Commissioner Zachary Gates and members of Bradford County Human Services were in attendance.

The Tuesday forum is the first of many that Vision for Equality plans to organize across Pennsylvania. At the public forums, testimonies will be recorded and distributed to elected officials.

A national debate has brewed concerning the future of Medicaid. On Feb. 25, the U.S. House of Representatives passed a budget resolution 217 to 215, with all Republicans voting in favor except for Rep. Thomas Massie (R-Ky.), according to NBC News. The budget measure seeks $4.5 trillion in tax cuts and $2 trillion in spending cuts. It calls for the House Energy and Commerce Committee to find $880 billion in cuts to federal programs, while some Republicans have stated Medicaid reductions are part of the plan. Opponents of the measure have argued it would negatively effect low-income and disabled people who depend on Medicaid.

Although the budget resolution doesn't explicitly name Medicaid, experts argue that achieving the $880 billion cut target is impossible without substantial reductions to the program, which is a major federal expenditure costing over $600 billion per year, according to government data.

Concerning state institutions, Whitehead stated housing individuals is expensive since it costs over $500,000 per person each year in combined state and federal matches.

At the Tuesday forum, Gates said he will work to get elected representatives to visit Bradford County for a future public event on the topic of Medicaid.

Gates inquired about the best way to amplify concerned citizens' voices and get the attention of federal officials that include U.S. Senators Dave McCormick (R-Pa.) and John Fetterman (D-Pa.) and U.S. Rep. Dan Meuser (R-Pa.-9).

Whitehead stated Vision for Equality could possibly organize a later forum with shorter presentations and more participants sharing their stories.

He urged residents to contact their elected officials at their local offices. Whitehead recommended taking their children or family members with disabilities with them to introduce them to officials. He said officials should meet the people that Medicaid funding benefits.

Individuals can also record their personal testimonies on video, expressing their concerns and then submit those to their elected officials.

People can make phone calls to their elected representatives and let them know how important the waiver is to their family, neighbors or community members. He also provided text for people to read to their representatives when they make the phone calls.

The text reads, "I am your constituent, and urge you to support and protect funding Medicaid. Millions of children and adults rely on Medicaid for early interventions, school-based services, long term care, and comprehensive health care services. This support is critical for them to live independently and thrive in their communities. Medicaid is a lifeline for people with disabilities. This program needs to be strengthened, not reduced. Please protect Medicaid funding and help save lives."

Vision for Equality shared contact information that included:

U.S. Sen. Dave McCormick (R-Pa.) — 570-941-0930

U.S. Sen. John Fetterman (D-Pa.) — 570-820-4088

U.S. Rep. Dan Meuser (R-Pa.-9) — 570-202-0658

For support, parents of children with developmental disabilities can contact supports coordinators at BCHS on the latest services offered, Whitehead said.

Testimonials

The Tuesday panel consisted of parents of adults with developmental disabilities and autism from Bradford, Tioga and Sullivan counties. They stressed that without Medicaid, they would be forced to quit their jobs to provide full-time care, and pay for expensive private insurance.

Nolan and Melissa Chase, of Forksville, said their daughter Nora, 19, will be eligible for a waiver in two years. Due to frequent seizures, she requires 24-hour care and a full-time nurse to help her dress, cook and do laundry.

The loss of the waiver would force one of them to resign from their job because they cannot afford the nurse without it. Nolan is a lineman and Melissa is a special education teacher. They also fear losing their home and vehicles because of high out-of-pocket costs.

"It financially scares me to death" Nolan said.

The waiver allows Nora to maintain a degree of independence, have a job and enjoy leisure activities, Melissa said. However, Nora's future as a productive member of society relies heavily on the waivers. Without them, Nora's ability to work, stay safe and experience typical adult life will be gone.

"We hear everywhere that individuals with disabilities have the same rights as everyone," Melissa said. How can that be true when taking funding away means taking away their rights to have the same opportunities as others?"

Dan and Jeanine Martin stated they want their daughter, Daneal, 32, who is diagnosed with autism, to be as independent as possible, even though she'll always need their support. She works, volunteers and enjoys connecting with her community. Without the waivers, she would have limited social interaction, community involvement and sense of purpose.

Losing the waivers would force one of them to quit their job, leaving them with a single income that restricts their ability to afford basic necessities like groceries and clothing. They also fear Medicaid cuts will force them to put Daneal in a group home.

The Martins would also be burdened with health insurance costs they described as astronomical. Daneal suffers from vision and urinary ailments requiring medical care. Medicaid has paid for her therapies and medical bills that private insurance refuses to cover due to preexisting conditions. Premiums would be extremely expensive if she were able to obtain a private insurer.

Medicaid reimburses local school districts for special education and therapies like occupational, physical, behavioral and speech, Dan said. Without Medicaid, school districts would have to cover the costs themselves, likely leading to cuts in these services.

"We fear these cuts will take us back to the days of institutional care and erase all the progress we have made to allow our ID (intellectual disability) community to thrive and lead productive lives," Dan said.

Liberty, Pa. residents Becky and Darcy Litzelman said their son, Dutch, received his waiver in 2023 after high school graduation. It allows him to attend Partners in Progress in Mansfield, which offers adult day programs and other services for individuals with disabilities. He has made many friends at the nonprofit that helps him with social skills and independence.

Throughout his life, Dutch has stayed active playing basketball and soccer in school, and enjoys deer hunting during archery and rifle seasons. He also traveled to South Carolina for a pig hunt. His school years consisted of Medicaid funded speech, physical and occupational therapies.

The loss of HCBS would make transportation to Mansfield difficult and limit his work opportunities. Becky said individuals with special needs in rural communities already face significant employment challenges, and proposed Medicaid cuts would make that worse.

Donna and David Cummings said Medicaid has significantly helped their son, Carl, who has Down syndrome and undiagnosed autism. He is nonverbal and relies on a one-on-one aide for assistance. The waiver he receives covers the cost of this aide at Partners in Progress. Carl also volunteers at the YMCA.

Donna shared that when Carl was born she and David did not immediately sign him up for a medical card. They assumed they could manage his care independently since they had good jobs, insurance and family support. They quickly discovered Carl needed early intervention services for speech, occupational and physical therapies and specialized instruction. Medicaid also paid for Carl's medical treatment and procedures related to heart and respiratory issues, and he still needs physical therapy.

"We soon learned that we needed the help that Medicaid provided," Donna said. "Without the assistance of Medicaid, these services would have been paid for mostly out of pocket."

They received assistance from supports coordinators at Bradford County Human Services to help coordinate services.

Athens resident Austin Goodenow, 25, said Medicaid waivers allows him to have his own apartment and live independently. He said individuals with disabilities would lose everything they worked hard for if Medicaid was cut.

Becky Roof explained that waivers allow her daughter to live independently, build friendships and enjoy a normal life in her own home. She actively volunteers and works in the community. Without HCBS, her daughter's independence and ability to contribute would be reduced, and care costs would increase.

"As a society, we want our members to live to their fullest potential," Roof said. "We want active, helpful, productive members that are contributing to our community."