Medical care for disabled patients in NJ needs to improve. Start here

The message was simple, the point undeniable.
“I’m not asking for anything outrageous,” Kelly Boyd told us. “Just to be seen, listened to and treated like anyone else.”
Boyd, a Hamilton woman with rheumatoid arthritis, is one of several New Jerseyans with disabilities whose stories we’ve shared over the past three weeks in the Hurdles to Health Care series. Reporters Gene Myers and Scott Fallon have explored the many barriers the community faces in getting adequate medical care.
A 2022 World Health Organization report found that people with disabilities die up to 20 years earlier on average than those without such conditions, thanks in large part to their inability to get basic care. They also have twice the risk of developing asthma, diabetes, stroke and obesity.
We hope this series can be a catalyst for change in doctors’ offices, corporate boardrooms and the halls of Trenton. I asked Scott and Gene what lessons can be taken from their reporting. Here are some of the solutions they highlighted:
Improve training for primary care workers and specialists. Both Robert Wood Johnson and Hackensack Meridian medical schools require their students to meet regularly with an assigned New Jersey resident, including many with disabilities, to become aware of the challenges the population faces and how best to treat them when the students finish their studies.
In the past, such experiences were mainly geared toward pediatricians. But doctors focused on adult medicine need such training as well to learn how to provide the most effective, respectful care.
Incorporate accessibility at every level. More hospital systems are picking up on small yet important changes, and these lessons need to spread through the entire industry. That includes, for example, listing information on how to interact with a particular patient with disabilities at the top of their electronic medical records.
Clinicians can schedule multiple procedures and exams at the same time for patients who need to be sedated, a relief to parents who often have to wait weeks to prepare for basic care. Some practices have also created isolated areas for patients who may experience sensory overload because of autism or other diagnoses.
Tackle the physical barriers. Clinics like Hope Christian Services in Wyckoff and Freehold Family Health Center, both featured in our series, show what’s possible in terms of spaces designed specifically for this community. They’ve added special lifts to help people in wheelchairs, bigger exam rooms, modular equipment and outdoor waiting areas — as well as more subtle accommodations like soothing decor.
These changes don’t come for free, however. Freehold’s renovations were supported by $370,000 in grant money, and Hope Christian’s medical suite cost $120,000. State or federal aid could help more clinics adopt these innovations.
Fix insurance billing. Because primary care and urgent care are such volume businesses, some advocates suggest having different insurance billing codes to allow doctors to spend more time with people with disabilities. It often takes much longer to diagnose and treat some patients because of communication problems. Reforms are especially important for emergency and urgent care physicians, where the chaotic environment can be particularly challenging.
Increase transparency for managed care. Among the loudest complaints we heard were about the state’s Medicaid managed-care program, in which private insurers oversee the publicly funded treatment of 1.8 million state residents. Too often, patients and advocates said, essential services like home nursing are denied or cut back for opaque reasons, even when family doctors or nurses disagree.
The state Human Services Department took an important step this spring with an order that required more clear explanations and a more open appeals process from insurers.
Paul Aronsohn, the state’s ombudsman for people with intellectual and developmental disabilities, suggests further reforms, including more transparency on how much managed-care insurers spend on medical care and the health outcomes it achieves.
The state could further level the playing field during appeals — where families often have to represent themselves against insurance company lawyers — by making hearing decisions binding, Aronsohn said, and by tracking and publicizing the results of challenges and reversals.
Under Medicaid, New Jersey taxpayers spend $23 billion a year to care for some of our most vulnerable neighbors. There are ways to spend it more wisely, and humanely.