Improving health equity for adults with disabilities

At MultiCare, we are committed to working toward health equity — ensuring all people have access to quality health care regardless of age, race, ethnicity, gender identity, religion, sexual orientation, ability, socioeconomic status or location. But we also recognize the reality that longstanding biases and barriers embedded in the health care system, and our society, can prevent people from accessing the care they need.

In this series — inspired in part by society’s growing awareness that not everyone has the same chance to be healthy — we take a deeper look at the disparities that impact our patients and how we as health care providers and community members can reduce those disparities and improve the health and well-being of all.

Overcoming inaccessibility

More than 61 million Americans, approximately one in four U.S. adults, live with a disability — ranging from mobility limitations to visual impairments to cognitive conditions and more. People with disabilities are a highly diverse population with a wide range of needs, yet many face barriers to accessing health care.

While the Americans with Disabilities Act (ADA) and other federal laws mandate equal access to health care services, it is still common for adults with disabilities to encounter medical spaces that are inaccessible or lack the proper medical equipment, such as wheelchair-accessible scales, a Hoyer lift or height-adjustable exam tables.

Even getting from one’s home to a medical appointment can be a challenge.

“Transportation and accessibility are big issues,” says Lavina Jethani, MD, a physician who specializes in physical medicine and rehabilitation at MultiCare Good Samaritan Hospital.

Dr. Jethani primarily works with people who have experienced strokes or spinal cord injuries. She addresses any medical issues associated with their condition while also working in collaboration with other providers, such as social workers and psychiatrists, to help patients adjust to their circumstances and maximize their ability to function independently.

“Things like ramps and adaptive vehicles are not covered by insurance,” Dr. Jethani says. “And if you live in an area that’s unincorporated, then services like paratransit likely aren’t available. You may not even have access to sidewalks.”

One way Dr. Jethani and her colleagues at MultiCare Good Samaritan Rehabilitation Center support patients with mobility limitations is by taking them on an outing in the community prior to discharge from the hospital, when possible.

“We want patients to safely experience how getting around in a manual or power wheelchair may be different from navigating the flat floor in the hospital,” Dr. Jethani says. “And if they are going to use public transportation, then patients have to learn how to navigate that.”

Lack of knowledge can fuel unintentional bias

In addition to transportation issues and inaccessible physical environments, barriers may also come in the form of bias. In a survey of more than 700 practicing physicians, only approximately 40 percent expressed confidence in providing equal quality care to patients with disabilities, and just over half strongly agreed that they welcomed disabled patients into their practices.

These sentiments often don’t stem from an intentional desire to discriminate, but rather a lack of understanding in how to effectively care for people with disabilities.

“Outside of my specialty, to my knowledge, it’s not really common practice to talk about adults with disabilities in medical school,” Dr. Jethani says. “So, physicians may not have a lot of experience or training in working with this population.”

This combination of barriers and bias has a devastating impact, shortening lifespans and lowering quality of life. Studies show that people with disabilities are less likely to receive routine preventive services, are more likely to report poorer overall health, and are at greater risk for chronic diseases, such as obesity and diabetes, than those without disabilities.

Navigating ‘the cliff’

Accessing care can be challenging for anyone with a disability, but children with intellectual and developmental disabilities, such as cerebral palsy, face unique barriers when they turn 18 and age out of pediatric services.

Allyson Stoker, ARNP, a nurse practitioner specializing in physical medicine and rehabilitation, straddles both sides of this divide — she sees children and youth at MultiCare Mary Bridge Children’s and also works with adults at MultiCare’s Adult Developmental Clinic.

“There’s such a discrepancy in terms of what’s available,” Stoker says. “On the pediatric side there are more robust services and a family-centered approach to care. We try to make sure families’ needs are met, whether medical or otherwise, and we do a lot of behind-the-scenes coordination. That doesn’t really exist on the adult side.”

Many families with children who have developmental disabilities refer to this transition period as “the cliff.” Children lose access to school-based special education services, in addition to their pediatric providers. As a result, their families are often left to navigate a complicated patchwork system of care and services on their own.

The lack of coordinated care on the adult side led Stoker, along with Alan Gill, MD, a family medicine physician at MultiCare Tacoma Family Medicine, to cofound the Adult Developmental Clinic in 2018. Serving people with developmental disabilities from all over Southwest Washington, the clinic eases the transition from pediatric to adult care and provides ongoing support throughout adulthood.

The clinic performs comprehensive evaluations, assessing a person’s medical, functional and psychiatric needs, and then aims to match patients with appropriate health care services and providers on the adult side — as well as community resources they could benefit from. The evaluation aids a warm handoff, giving both families and providers a complete summary of a patient’s health history and current needs.

“Patients with developmental disabilities may have complex health histories,” Stoker says. “And for many families, this is the first time they’ve ever gotten something that has that entire history in one place.”

“The clinic is nationally unique — there are very few other clinics like this out there despite the vast need for our services. My vision is to grow the clinic’s capacity and to provide more longitudinal support. We have the ability to help this underserved population really maximize their potential in the community.”

Making connections

One of the biggest challenges the Adult Developmental Clinic faces is connecting patients with mental health services.

“People with developmental disabilities may have communication challenges, so talk therapy may not be a good fit,” Dr. Gill says. “If they’re screened out of talk therapy, that can make it difficult for them to find a provider who can offer psychiatric and behavioral support, including medication management.”

Another challenge for the clinic is finding enough primary care providers who are comfortable working with patients with developmental disabilities and who welcome them into their practices.

Part of the problem is the lack of access to primary care in the U.S. in general — the supply of primary care providers has not kept pace with demand, a shortage worsened by the COVID-19 pandemic. Structural barriers, such as lack of care coordination services and time constraints, also play a role.

“Most primary care providers have 15-minute appointment slots,” Stoker says. “That’s not a lot of time when you have patients with complex medical or behavioral concerns.”

That’s where the clinic comes in, Stoker shares. A big part of what they do is help patients connect with the specialists and other resources they may need, so both the patients themselves and the primary care providers who take over their care are well supported.

Training the next generation

Similar to disabilities in general, there is a dearth of training and expertise when it comes to providing care for patients with developmental disabilities.

The American Association of Medical Colleges reports that more than eight in 10 graduating medical students receive no training in caring for adults with developmental disabilities, and outside of certain medical specialties, most residency programs offer little training or exposure either.

Dr. Gill and his colleagues at Tacoma Family Medicine and East Pierce Family Medicine — the home of the Adult Developmental Clinic — are aiming to buck that trend through their residency programs. Combined, these two practices see hundreds of patients with developmental disabilities. Residents gain hands-on experience and education in working with this diverse patient population while also becoming familiar with the complex systems people with developmental disabilities — and their families — must navigate to get what they need.

“We want to help build the pipeline of providers who are attuned to the needs of this population,” Dr. Gill says. “I often refer patients I see in the Adult Developmental Clinic to our residency graduates for primary care.”

As for the future of the Adult Developmental Clinic, Dr. Gill sees growth as an imperative.

“The clinic is nationally unique — there are very few other clinics like this out there despite the vast need for our services,” he says. “My vision is to grow the clinic’s capacity and to provide more longitudinal support. We have the ability to help this underserved population really maximize their potential in the community.”