Considering Disability in Social Determinants of Health Referrals

When Colin O’Reilly, DO, FAAP, FACOP, FCCM, makes a social determinants of health referral in his pediatric hospital, he can’t just send the child and family to any social services provider. He has to make sure that social service is completely accessible, both in its physical space and how it serves patients.

That’s because O’Reilly works at Children’s Specialized Hospital, a part of RWJBaranabas Health in New Jersey, where he’s the vice president and chief medical officer. Children’s Specialized Hospital delivers care to kids with disabilities and specialized care needs both in its flagship inpatient acute rehab hospital and in its 15 outpatient centers across the state.

Delivering care to kids with disabilities is different from a neurotypical population, O’Reilly said in an interview with PatientEngagementHIT, because these children and their families have more specialized care needs.

Those differences are playing out in health disparities and inequities, with individuals with disabilities facing worse health outcomes than their counterparts. In December 2022, the World Health Organization (WHO) published data showing that, globally, an individual with a disability might die up to 20 years earlier than someone without.

In the US, health disparities play out mostly because healthcare itself is less accessible for individuals with disabilities, according to the Centers for Disease Control and Prevention (CDC).

“It has been identified that a lack of clear healthcare initiatives and medical information can lead to disparities in healthcare,” O’Reilly explained.

Children’s Specialized Hospital has worked to make healthcare more accessible, ranging from the physical environment of the hospital and its clinics all the way down to how it serves the social needs of its patients.

“There are so many facets of considerations that are needed in the healthcare of someone with a disability or a specialized healthcare need. We have to look at the global picture of how we're providing that care to the individual, from the time that the appointment is made until the time that the child is seen,” according to O’Reilly.

“We've really tried to augment and tailor our physical locations to best service the needs of the child and the family,” he continued. “And that means all of the physical aspects of the building itself really need to take into account those needs, whether it be accessibility of parking or access to the building, the width of the hallways, the nature of the exam rooms.”

Children’s Specialize Hospital also hosts its Living Safely Online Center, which provides families with resources that help them better communicate with their healthcare providers and those involved in supporting their child’s health and well-being.

But health and well-being extend beyond the walls of the clinic and hospital. And even though children with disabilities might visit with their clinicians more often than the typical child, it’s still the world around them and their social needs that will shape them the most, O’Reilly explained.

That’s why social determinants of health, and the social services that will address them, are a key part of the Living Safely Online Center and Children’s Specialized Hospital’s overall mission.

Like many other healthcare organizations, Children’s Specialized Hospital has integrated social determinants of health screening and real-time referral into its clinical practice. It also focuses on the same three key social determinants of health that many other clinics prioritize: transportation, food insecurity, and housing.

But O’Reilly and his team need to make careful considerations for accessibility, or at least think about accessibility differently than other providers. After all, a referral to an affordable housing program is not helpful if the physical space is not amenable to a child in a wheelchair. Transportation services, a resource O’Reilly said saw significant cuts across the board during the pandemic, means little if the vehicle can’t accommodate large medical equipment.

O’Reilly said the Living Safely Online Center helps the organization tap deeply into its community resources so it can make social determinants of health referrals that are actually useful to patients and families. Children’s Specialized Hospital also has a large staff that is equipped to make meaningful social services connections for families.

“Our patient care coordinators throughout those sites are really well versed in the community resources that our patients can tap into,” O’Reilly said. “In addition, we have what I think is a pretty unique department here at Children's Specialized called our Family Faculty.”

The Family Faculty looks a lot like a patient and family advisory council, but getting a spot on the faculty is a paid role, which lets staff play a big role in hospital initiatives. Through their lived experiences, Family Faculty staff can help align social services offerings based on the unique needs of families of kids with disabilities.

Importantly, the online resource—which offers information in multiple different languages, includes pictured stories, and has narrated images—gives families and patients the language they need to advocate for themselves out in the community.

For example, access to community resources is a significant need that’s emerged in Children’s Specialized Hospital’s community health needs assessment (CHNA).

“We're hearing from our community that access to recreational activities in the outpatient world and in the community for children with disabilities is a top priority,” he said. “Access for children with disabilities was never on par with recreational access for a neurotypical child. So then, to have that very limited access limited even further by the years of the pandemic, it really has affected the population.”

As an anchor institution, Children’s Specialized Hospital does its own community advocacy, but the Living Safely Online Center is supposed to help families also be their own advocates. By providing advocacy language to families, the Living Safely Online Center helps build autonomy in patients and families with disabilities.

“One of the four key components of that platform is advocacy,” O’Reilly concluded. “And not just current advocacy and ways that individuals are currently advocating for this population, but ways that families can get involved moving forward to advocate, so that we don't have this disparity going forward.”