My daughter Katie was born with severe disabilities. She went on to develop profound autism, attention deficit disorder, and obsessive-compulsive disorder. The hardest part for her is knowing that she’s different but not understanding how or why. My career as a health care manager and now a researcher has been derailed and fragmented because I have a profoundly disabled daughter who has undergone so many treatments and required special schools.
Still, she has grown up. At 21, she now has health insurance and stable income through Medicaid and Social Security. She is fortunate to live in 24/7/365 state-supervised residential housing. The abrupt transition from school-age support to limited adult services is aptly termed “the cliff.” I often wonder: What will happen to my daughter when I am too old to advocate for her?
The good news for both of us is that as of late September, the National Institutes of Health recognizes people with disabilities as a minority population that experiences health disparities. Other recognized health disparities groups include racial and ethnic minorities, people with low socioeconomic status, rural underserved communities, and sexual and gender minorities. This new designation will eventually bring new research-based, systemwide interventions, leading to improved health outcomes.
Twenty-seven percent of the U.S. population lives with a disability, and nearly half of those say they are in bad health. Those with disabilities face a greater incidence of physical and mental ailments, including obesity, diabetes, cardiovascular disease, addiction, and mental illness, as well as increased rates of morbidity and mortality. They struggle to access high-quality medical care and suffer from stigma, biases, and ableism. People with disabilities are also subject to social disadvantage and marginalization.
Navigating the medical system is fraught with danger for these folks. Over 80% of medical students say they receive no disability training. Nurses aren’t well equipped to care for their complex needs and often start talking only to family members, which the patients are quick to notice.
Those with intellectual and developmental disabilities (IDD), comprise 1%-3% of the U.S. population. This diverse group has a broad array of cognitive skills and medical complexity, and are more vulnerable to physical and mental ailments, such as Covid-19, obesity, diabetes, heart disease, addiction, and mental illness. Once admitted, patients face communication barriers that keep them from explaining their symptoms.
The IDD population uses health care at a far higher rate than the general population. Inpatient readmissions or return trips to the ER within 30 days of discharge are also more common for the IDD group, indicating poor quality care or lousy care coordination, or both. All those shortcomings mean that those with IDD don’t live as long as other people.
The NIH’s recognition of those with disabilities as a health disparity population is a landmark decision — one that almost didn’t happen. At first, the NIH working group tasked with recommending whether people with disabilities should receive the health disparities designation did not recommend it. Their concerns included the lack of a standard definition for disability and the fear that the needs of such a large, mixed group could outstrip the financial and staffing resources of the NIH.
Advocates fought back, noting that since no one with a disability sat on the committee, the members failed to understand the issues at hand. They petitioned for a reversal, eventually convincing the final NIH working group to recommend that people with disabilities be designated as a health disparities population.
While it’s currently unclear how much research money will be available, the support will likely be substantial. The NIH’s main agency in this field, the National Institute on Minority Health and Health Disparities, has seen its funding soar from $45 million in 1990 to $691.8 million this year, focused on covering disparities among Black Americans, Hispanic Americans, rural and low-income folks, and sexual and gender minorities. Research into health disparities seems to have played a role in the achievement of narrowing the mortality gap between Blacks and Whites by almost half, from 33% to 16%, between 1999 and 2015.
And research using the designation can be funded by any NIH institute, not just the one for health disparities. The first research grant applications will be accepted this month, with the first disability projects commencing in December 2024. There are lessons to be learned from past efforts: During the pandemic, when telehealth exploded, it became clear that older, Black, and Medicaid/Medicare patients used it less often. But what doesn’t work for one health disparity population may work for another; telehealth may be a game-changer for mobility-impaired disabled people.
I hope other researchers will address quality of life priorities, both physical and economic, for this group. That means listening to folks who are disabled, who deserve a bigger voice in the research that is being done.
As a health services researcher at the University of Pennsylvania’s School of Nursing, I have already submitted my first grant request for this new NIH funding. I think researchers should focus on creating systemwide solutions rather than hospital-specific programs. For example, my research focuses on improving the work conditions for nurses, the largest group of health care workers in hospitals. Nurses spend twice as much time with patients as doctors do, making them ideal agents to improve care in the hospital and help prevent readmissions. Investing in nursing education, fewer patients per nurse, and a supportive nursing work environment have been shown to improve outcomes for other vulnerable populations, such as people with serious mental illness or opioid use disorder.
Standard responses are to improve health care provider education, focusing on the individuals. My goal is to leverage the systems-level nursing workforce to improve IDD inpatient outcomes, thus creating hospital-wide impacts. I hope to use machine learning to create risk scores to describe patients’ needs and determine how hospital nursing resources should be deployed. Most current interventions for those with disabilities are of poor quality and new interventions are needed. Little is known about how well health care services meet the needs of those with disabilities. I am confident that the brightest minds will step up to tackle the inequity that harms people with disabilities every day.
My dream for Katie is that when she has to enter the hospital, she won’t face a danger-ridden environment requiring her parents to be hypervigilant at all times. I would like to see nurses given the training and resources to care for these high-need patients.
Rather than numerous individual hospital programs, I envision a nationwide system to care for people like Katie. IDD care is currently uneven, with some hospitals having specialized programs and others not. Ideally, someone with IDD would be assessed using a formula that accounted for social determinants of health, comorbidities, and diagnosis, thus tailoring care appropriately for everyone with IDD. Mostly, I want to make the world a better place for my daughter and her peers. She has so many peers.
Lynne Moronski is an associate fellow of the Leonard Davis Institute of Health Economics and a postdoctoral fellow at the Center for Health Outcomes and Policy Research at Penn’s School of Nursing.