Pa. residents with disabilities face health care barriers, report says

A recent report finds that people with intellectual and developmental disabilities (IDD) across Pennsylvania continue to encounter significant barriers to basic health care — from inaccessible facilities and poorly trained providers to low Medicaid reimbursement rates that make it financially difficult for clinics to serve them.

The “Barriers to Care” report, released by the Rosemary Collaboratory — a partnership between Special Olympics Pennsylvania, The Arc of Pennsylvania, and global disability researchers — draws from surveys, interviews, and focus groups with people with IDD, their families, and health care workers statewide. Together, they paint a picture of a system that often feels unwelcoming, confusing, and, at times, unsafe.

“People with intellectual and developmental disabilities die, on average, 20 years younger than the rest of the population,” said Matt Aaron, president and CEO of Special Olympics Pennsylvania. “That’s stunning — and it’s something we can actually do something about.”

Training gaps leave providers unprepared

The report highlights a familiar theme for many advocates: most health care providers receive little to no formal education about treating patients with disabilities. That lack of preparation, experts say, leaves both clinicians and patients struggling to communicate effectively.

“In medical school, we’re taught about disability as the negative consequence of disease,” said Dr. Amy Houtrow, chief of pediatric rehabilitation medicine at UPMC Children’s Hospital. “When we specialize in a particular area of medicine, we’re not taught about a broader mindset about disability.”

Houtrow said that framework shapes how providers view their patients — and can reinforce harmful stereotypes.

“Disability should not just be seen as a tragedy or a problem to be solved,” she said. “It’s a natural part of the human experience.”

As both a physician and a person with a disability herself, Houtrow believes medical education must move beyond treating disability solely as pathology. Through her work leading Pitt’s Leadership Education in Neurodevelopmental Disabilities (LEND) program, she trains students to understand disability as part of identity — and to practice care grounded in dignity and respect.

But change, she said, will also require financial reform. “Much of the way health care is delivered is based on how and what is paid for,” she said. “That creates disincentives for health care providers to spend extra time with their patients. Until we view health care as a right instead of a commodity, we’re not going to get there.”

“I’m his advocate, his eyes, his ears.”

For families, those systemic issues are deeply personal. Lynn, a mother in western Pennsylvania, has spent nearly three decades navigating care for her 28-year-old son, Alex, who has nonverbal autism and intellectual disability.

She said she appreciates when clinicians make eye contact with Alex and speak to him directly, even if she has to interpret his responses. But too often, she feels dismissed.

“We are the ones entrusted with conveying what they themselves cannot convey,” she said.

“There have been several times where I’ve felt that what I have to say about him is not being valued. If he could do these things for himself, I would absolutely encourage him to do them. But I do it because I need to.”

Lynn said small, practical adjustments — longer appointments, plain-language explanations, less rushed visits — could make a big difference for patients like her son.

“Fifteen minutes might be perfect for me,” she said. “But fifteen minutes may not be perfect for him.”

The biggest obstacle, however, is financial. Many doctors, she said, avoid taking Medicaid patients because low reimbursement rates don’t cover the extra time and coordination required for complex care.

“What they’re being reimbursed doesn’t even remotely match the cost,” she said.

“Time is money — and if your reimbursement rate makes it so it’s not even worth your time, you’re going to say, ‘We’re not going to accept Medicaid patients.’”

To Lynn, that policy sends a broader message.

“If our government isn’t willing to reimburse fairly, then they’re in essence saying we don’t value their health and wellbeing and quality of care as much as we value someone else’s.”

Training, time, and trust, in the wake of COVID

The “Barriers to Care” survey backs up those experiences. Providers identified limited training and poor financial incentives as two of the biggest barriers to treating patients with IDD.

Aaron said the goal of the report isn’t just to list problems — it’s to identify solutions.

“We don’t want to just be screaming that this is broken,” he said. “We really tried to highlight both the challenges and the potential ways forward.”

One of the simplest changes, he said, is improving communication. Too often, doctors direct their attention to the caregiver rather than the patient.

“We’ve heard from people with disabilities that many times, the medical professional talks to the other person — almost as if the patient wasn’t in the room,” Aaron said.

The report recommends creating welcoming environments, using alternative communication tools, and taking any steps possible to empower individuals with IDD to participate in health care decisions — recommendations that build from lessons learned through the COVID pandemic.

The report highlights how programs that adapted during the pandemic allowed for improved feedback and monitoring systems that better connected IDD patients to their health care providers. Those improvements also revealed systemic issues the population often faces.

Sherri Landis, CEO of The Arc of Pennsylvania, said the report confirms what advocates have known for years: health care disparities for people with disabilities didn’t start with COVID-19 — the pandemic just exposed them.

“Transportation, insurance, lack of provider training — these barriers have been there for decades,” she said. “What COVID did was pull the curtain back.”

“You can’t fix what you don’t measure.”

Both Landis and Aaron said the lack of data is one of the biggest obstacles to progress. Pennsylvania does not consistently track health outcomes by disability type, which makes it difficult to identify disparities or tailor interventions.

“If data isn’t collected specific to disability, how do we know the rate of heart disease or diabetes?” Landis said. “You can’t fix what you don’t measure.”

Aaron added that addressing inequities isn’t just the right thing to do — it’s also financially smart. People with intellectual disabilities make up about five percent of Medicaid users but account for 15% of spending, he said.

“If we can do things to improve their health, we can not only address disparities in life expectancy — we can save a whole lot of money.”

New models and next steps

Despite the challenges, advocates say there are promising examples of inclusive care. Philadelphia’s Jefferson FAB (“For Adolescents and Beyond”) Center provides extended, coordinated appointments in a sensory-friendly environment designed specifically for patients with developmental disabilities.

The Arc will host a Disability Health Summit in March to share recommendations from the report and showcase models like Jefferson. The Rosemary Collaboratory’s work in Pennsylvania also feeds into a global effort studying health disparities among people with disabilities in multiple countries.

For Houtrow, meaningful progress starts with humility and partnership.

Health care needs to move away from a transactional model and toward one that values relationships and inclusion,” she said. “It starts with listening — really listening — to people with disabilities and letting them be the experts in their own lives.”