Pennsylvania Report Reveals Health Care Barriers for Disabled

A recent report reveals that individuals with intellectual and developmental disabilities (IDD) in Pennsylvania face significant hurdles in accessing basic health care. The “Barriers to Care” report, released by the Rosemary Collaboratory, highlights issues such as inaccessible facilities, insufficiently trained providers, and low Medicaid reimbursement rates that hinder clinics from adequately serving this population. This collaboration involves Special Olympics Pennsylvania, The Arc of Pennsylvania, and global disability researchers, drawing insights from surveys, interviews, and focus groups conducted with individuals with IDD, their families, and healthcare professionals.

The findings depict a healthcare system that often feels unwelcoming and confusing. As Matt Aaron, president and CEO of Special Olympics Pennsylvania, pointed out, “People with intellectual and developmental disabilities die, on average, 20 years younger than the rest of the population. That’s stunning — and it’s something we can actually do something about.”

Training Gaps and Communication Barriers

The report reflects a pressing concern among advocates: the majority of healthcare providers receive little to no formal training in treating patients with disabilities. This lack of preparation, according to experts, complicates communication between clinicians and patients.

Dr. Amy Houtrow, chief of pediatric rehabilitation medicine at UPMC Children’s Hospital, noted that medical education often frames disability as a negative aspect of health. “When we specialize in a particular area of medicine, we’re not taught about a broader mindset about disability,” she explained. Houtrow advocates for a shift in perspective, emphasizing that disability should be understood as a part of human diversity rather than a problem to be fixed.

Through her leadership in the Pitt Leadership Education in Neurodevelopmental Disabilities (LEND) program, she trains future healthcare providers to approach disability with respect and dignity. Yet, she argues that systemic change also requires financial reform. “Much of the way health care is delivered is based on how and what is paid for,” she stated. “Until we view health care as a right instead of a commodity, we’re not going to get there.”

Personal Experiences Highlight Systemic Issues

For families navigating these challenges, such systemic issues have profound personal implications. Lynn, a mother from western Pennsylvania, has dedicated nearly three decades to securing appropriate care for her 28-year-old son, Alex, who has nonverbal autism and an intellectual disability. She values when clinicians engage directly with Alex, but often feels her input is overlooked.

“We are the ones entrusted with conveying what they themselves cannot convey,” Lynn shared. She believes that simple adjustments, such as longer appointments and clearer communication, could significantly enhance the care experience for patients like her son. “Fifteen minutes might be perfect for me. But fifteen minutes may not be perfect for him,” she added.

The financial aspect is a major concern. Many healthcare providers are reluctant to accept Medicaid patients due to low reimbursement rates, which fail to compensate for the extra time and coordination required for complex care. “What they’re being reimbursed doesn’t even remotely match the cost,” Lynn explained. She perceives this as a broader message about the value placed on the health and wellbeing of individuals with disabilities.

Data Deficiencies and Future Solutions

The “Barriers to Care” survey corroborates these experiences, noting that providers cite limited training and inadequate financial incentives as significant barriers to treating patients with IDD. Aaron emphasized that the report aims not only to highlight problems but also to propose solutions. Improving communication is one of the simplest yet most effective changes suggested.

“Too often, doctors direct their attention to the caregiver rather than the patient,” he noted. The report advocates for creating welcoming environments, utilizing alternative communication tools, and empowering individuals with IDD to partake in their healthcare decisions. These recommendations stem from lessons learned during the COVID-19 pandemic, which revealed systemic issues faced by this population.

Sherri Landis, CEO of The Arc of Pennsylvania, stated that the disparities in healthcare access for people with disabilities existed long before the pandemic, and COVID merely exposed these longstanding issues. “Transportation, insurance, lack of provider training — these barriers have been there for decades,” she said.

Landis and Aaron both argue that the lack of data tracking health outcomes by disability type is a significant barrier to progress. Without detailed data, it remains challenging to identify disparities and tailor interventions effectively. “If data isn’t collected specific to disability, how do we know the rate of heart disease or diabetes?” Landis asked.

Addressing these inequities is not only a moral imperative but also a financial necessity. Individuals with intellectual disabilities represent approximately five percent of Medicaid users but account for a disproportionate 15 percent of Medicaid spending, according to Aaron. “If we can improve their health, we can not only address disparities in life expectancy — we can save a lot of money,” he concluded.

Despite the challenges outlined in the report, advocates point to promising examples of inclusive care, such as Philadelphia’s Jefferson FAB (“For Adolescents and Beyond”) Center, which offers extended, coordinated appointments in a sensory-friendly environment tailored for patients with developmental disabilities.

In March 2024, The Arc will host a Disability Health Summit to discuss recommendations from the report and highlight effective care models like Jefferson’s. Houtrow believes that meaningful progress requires humility and cooperation. “Health care needs to move away from a transactional model and toward one that values relationships and inclusion,” she remarked. “It starts with listening — really listening — to people with disabilities and letting them be the experts in their own lives.”