A recent report reveals that individuals with intellectual and developmental disabilities (IDD) in Pennsylvania face major hurdles when accessing essential health care. Issues range from inaccessible clinics to insufficient training among health care providers, compounded by low Medicaid reimbursement rates, which often deter clinics from accepting these patients.
The “Barriers to Care” report was produced by the Rosemary Collaboratory, a group that includes Special Olympics Pennsylvania and The Arc of Pennsylvania. The findings are based on surveys and interviews with individuals with IDD, their families, and health care professionals. The collective feedback highlights a health system that feels confusing and at times, discouraging to navigate.
Trained Providers Needed
One key issue is the lack of education among many health care providers about treating patients with disabilities. Dr. Amy Houtrow, the chief of pediatric rehabilitation medicine at UPMC Children’s Hospital, points out that medical training often portrays disability negatively. This limited view can lead to misunderstandings between patients and clinicians.
“Disability should not just be seen as a problem,” Houtrow states. She emphasizes the importance of redefining how medical professionals perceive disability, advocating for an approach that recognizes it as a part of human diversity. Through her work at Pitt’s Leadership Education in Neurodevelopmental Disabilities (LEND) program, she trains future doctors to respect the dignity of every patient.
Understanding disability in this way requires both better training and financial changes. Houtrow notes that the current payment structure tends not to reward the extra time clinicians need to devote to patients with complex needs.
Personal Stories Highlight Systemic Issues
For many families, these systemic challenges are all too real. Lynn, a mother from western Pennsylvania, has spent years coordinating care for her son, Alex, who has nonverbal autism and an intellectual disability. She often feels overlooked in discussions with health care providers, despite her vital role in communicating on her son’s behalf.
She believes that small adjustments—like longer appointments or clearer explanations—could significantly enhance the care experience for individuals like Alex. “Fifteen-minute slots may work for some, but not for everyone,” she emphasizes. The financial aspect can’t be ignored either; many doctors shy away from accepting Medicaid patients due to reimbursements that don’t reflect the time and effort needed for complex cases.
Broader Perspectives on Health Care Disparities
The challenges faced by people with IDD are not new; they have persisted for decades, as pointed out by Sherri Landis, CEO of The Arc of Pennsylvania. She explains that the COVID-19 pandemic exposed long-standing issues, including transportation challenges and inconsistent provider training.
Both Landis and Matt Aaron from Special Olympics Pennsylvania stress that a lack of data makes it hard to pinpoint specific health outcomes for people with disabilities. They argue that without accurate tracking, it’s challenging to develop effective interventions.
The Path Forward
Despite these hurdles, there are promising examples of change. Philadelphia’s Jefferson FAB Center aims to create a supportive environment tailored for patients with developmental disabilities.
In March, The Arc will hold a Disability Health Summit to share insights from the report and highlight models of effective care. Houtrow believes that real progress requires a shift away from seeing health care as merely transactional. Instead, it’s about building relationships and genuinely listening to the experiences of people with disabilities.
As we continue to learn from past mistakes, it’s crucial to prioritize inclusivity and respect in health care. Building a system that values the voices of individuals with IDD can lead to a healthier future for everyone.
For further information, you can explore the Barriers to Care report.
