Breaking Down the Barriers to Care for People With I/DD

Ohio’s Boundless Health gives people with intellectual and/or developmental disabilities (and their caregivers) a healthcare clinic of their own

For people with intellectual and developmental disabilities (I/DD), a trip to the doctor's office or dentist poses unique challenges for both patient and provider. Now an Ohio nonprofit has developed a health center specially designed to provide those services.

I Am Boundless, based in Columbus, has opened Boundless Health, a facility modeled on the federally qualified health center (FQHC) platform that offers a wide range of healthcare services, including primary and specialty care, behavioral health services, and even dentistry, for the I/DD population and their caregivers.

Healthcare providers "are not trained to provide care for these people, and the healthcare system is not built for this," says Patrick Maynard, PhD, the organization's president and CEO. "I have a board member with a 38-year-old daughter who is still seeing her pediatrician."

The challenges are often overlooked, yet critical. A child on the autism spectrum, for example, might not do well in a typical doctor's or dentist's office, and doctors and nurses often don't know how to treat them, thus affecting care outcomes. Some families might forego some healthcare services because of those challenges, travel long distances to a provider who can offer those services, or show up in the local ER.

According to Maynard, studies have found that patients with I/DD and other complex needs are almost two times more likely to be hospitalized than the general population, are prescribed four times as many medications, and generally have a shorter lifespan. They account for 12.4% of the nation's population, yet are responsible for 36% of the nation's healthcare costs.

Patrick Maynard, PhD, president and CEO of Boundless Health. Photo courtesy Boundless Health.

"Systems of care must actively engage people with I/DD in health awareness, self-advocacy, health literacy, and health promotion activities to enable them to participate in their own healthcare through improved access," David Ervin, CEO of The Resource Exchange in Colorado Springs and advisory committee member at the Jerusalem-based National Institute of Child Health and Human Development said in a 2014 paper titled Healthcare for Persons with Intellectual and Developmental Disability in the Community. "People with I/DD, their caregivers, and families are often unable to represent their own health concerns due to a lack of understanding of how complex healthcare delivery systems work and not knowing how or in what circumstance to access and employ institutional and community healthcare systems. Healthcare delivery systems must develop and integrate effective networks of primary care medical providers and other health professionals that can positively impact health outcomes for persons with I/DD."

That, Maynard says, is where Boundless Health could be a game-changer.

He says a clinic that caters specifically to the I/DD population, with care providers trained to treat these patients, "represents a big piece of the pie that has always been missing." The center operates on a strategy of offering whole-person care, integrating services that patient and their families might have a difficult time accessing elsewhere.

"Basically, we're addressing population health," he says.

It's not a simple process. A significant portion of this population is covered by Medicaid, yet Medicaid doesn't cover many of the specialized services that these patients need. So Maynard and his staff have applied to the Department of Health and Human Services' Health Resources and Services Administration to be classified as an FQHC, which would expand reimbursement opportunities.

That alone, Maynard says, is a five-year process.

"It's a laborious process," he says. "You have to take on all the expenses first. The typical healthcare model is based on volume, but we're approaching this differently. We've had to build the business model from the ground up, and work things out as we go along."

The idea is to give these patients and their caregivers not only one place to meet a wide range of vital healthcare needs, but to create an atmosphere that makes them comfortable. Maynard says the physical design of the clinic, with 17 patient rooms, a pharmacy, and space set aside for behavioral health services, is as important as what it offers, with aesthetically pleasing rooms and play areas and workflows that focus on "deliberate and thoughtful time with each patient.”

"We're geared specifically for this population," he says. "And it's not just a healthcare model. It's an integrated healthcare model."

It's also designed for patients of all ages. While the shortage of healthcare providers for infants and children with I/DD is acute, aging parents face growing obstacles finding care for their children as the years go by. And there aren't a lot of providers out there who can treat seniors with I/DD, either. They're often shoehorned into senior living facilities and skilled nursing facilities that don't have the resources to meet their specific care needs.

"The senior service industry is not equipped to care for this population," Maynard points out.

That's why he and his staff are hoping Boundless Health can serve as a model for other clinics around the country. This clinic will serve the central Ohio area, around Columbus, with a goal of treating as many as 7,000 patients in a few years through both the clinic and mobile health services co-located in community centers in cities like Dayton, Cincinnati, Cleveland, and Youngstown.

"We're getting a lot of support from local health systems," Maynard says, noting that newly introduced dental service will be provided with help from the Ohio State University's Nisonger Center. Those health systems, all the way down to local doctors and clinics, see the value in a health center that can cater specifically to patients they have a difficult time accommodating.

 That's good for Ohio, but there are 49 other states out there.

Maynard says the health center is designed to give patients and their caregivers one place to visit for a variety of healthcare needs, much like a traditional clinic or FQHC. Thus, the FQHC designation would be important in that it would give other providers in other states a model to replicate.

To prove the value of that model, Maynard and his staff are collecting lots and lots of data.

HHS "is heavily into compliance and quality assurance," he says. "We have a lot to prove."

And, he says, they're looking at how to expand Boundless Health—true to its name—to address other needs and issues, such as social determinants of health. Like any underserved population, people living with I/DD and their caregivers face problems accessing a wide range of services that extend beyond healthcare but affect health and wellness.

"Our growth plans include not only geographic expansion and partnerships, but also enhancing our healthcare services to include specialty practices, such as gynecology, dietetics, hearing loss, and other medical services to provide customized care, as well as expanding our technology to bring traditional and specialty services to where they are needed," Anna Wuerth, the clinic's executive director, said in a press release issued last fall.

"We're looking for ideas all around the country," Maynard adds. "But a lot of this is new. We're kind of pioneering this out there."