My daughter, Katie, was born with severe disabilities. She later developed severe autism, attention deficit disorder, and obsessive-compulsive disorder. The hardest thing for her is knowing she is different, but not knowing how or why. My career as a healthcare administrator and now a researcher has been thrown off track and fragmented by having a severely disabled daughter who required a lot of therapy and attending special schools.
Yet, my daughter has grown. Now 21, she has health insurance and a steady income through Medicaid and Social Security. She is fortunate to live in state-supervised housing 24/7. The sudden transition from school-age supports to limited adult services is truly called a “cliff.” I often wonder, “What will happen to my daughter when I’m too old to advocate for her?”
The good news for both of us is that as of late September, the National Institutes of Health recognized people with disabilities as a minority population that experiences health disparities. Other groups that have been recognized as health disparity groups include racial and ethnic minorities, people of low socioeconomic status, underserved rural areas, and sexual minorities. This new designation will ultimately lead to new research-based system-wide interventions that will lead to improved health outcomes.
27% of the US population lives with a disability, and nearly half of those report poor health. People with disabilities experience higher rates of physical and mental illnesses, including obesity, diabetes, cardiovascular disease, addiction, and mental illness, as well as higher morbidity and mortality. They struggle to access quality health care and suffer bias, stigma, and ableism. People with disabilities also tend to be socially disadvantaged and marginalized.
For these people, navigating the health care system can be risky: Over 80% of medical students say they receive no training on disabilities, nurses are ill-equipped to handle patients’ complex needs, and patients often only talk to family members, and they quickly notice.
People with intellectual and developmental disabilities (IDD) represent 1%-3% of the U.S. population. This diverse group has a wide range of cognitive abilities and medical complexities that make them more susceptible to physical and mental illnesses, including COVID-19, obesity, diabetes, heart disease, addiction, and psychiatric disorders. When hospitalized, patients face communication barriers that prevent them from describing their symptoms.
People with IDD receive medical care at a much higher rate than the general population. They are also more likely to be readmitted to the hospital or return to the emergency department within 30 days of discharge, indicating poor quality of care, poor coordination of care, or both. These shortcomings mean that people with IDD do not live as long as others.
NIH’s recognition of people with disabilities as a health disparities population is a landmark decision, but one that was never likely to come to fruition. An NIH working group originally tasked with recommending whether people with disabilities should receive a health disparities designation recommended against it. Their concerns included the lack of a standard definition of disability and fears that the needs of such a large and diverse group would outstrip NIH’s financial and personnel resources.
Essay writer Lynn Moronski with her daughter Katie in 2018. Courtesy of Sean Moronski
Advocates countered that the committee did not understand the problem because it did not have any disabled people on it. They petitioned for a change in policy and ultimately persuaded the NIH’s final working group to recommend designating disabled people as a health disparities population.
It’s unclear at this point how much the research funding will be, but the support is likely to be substantial. The NIH’s lead in the 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, and it focuses on examining disparities among black Americans, Hispanic Americans, rural and low-income populations, and sexual and gender minorities. Health disparity research appears to have helped cut the black-white mortality gap by nearly half between 1999 and 2015, from 33% to 16%.
Research using this designation can also be funded by any NIH institute, not just health disparities research institutes. The first research grant applications will be accepted this month, and the first disability projects will begin in December 2024. There are lessons to be learned from past efforts. When telehealth exploded during the pandemic, it became clear that older adults, Black people, and Medicaid/Medicare patients were using it less. But what doesn’t work for one health disparity population may work for another. Telehealth could be a game changer for people with disabilities who have mobility issues.
I hope that other researchers will address the quality of life – physical and economic – priorities of this group, which means listening to the voices of people with disabilities, who should have a greater say in the research that is being done.
As a health services researcher at the University of Pennsylvania School of Nursing, I have already submitted my first grant application for this new NIH funding. I believe researchers should focus on creating system-wide solutions rather than hospital-specific programs. For example, my research focuses on improving working conditions for nurses, the largest group of healthcare workers in hospitals. Because nurses spend twice as much time with patients as physicians, they are ideal agents to improve care in hospitals and prevent readmissions. Investments in nursing education, fewer patients per nurse, and supportive nursing work environments have been shown to improve outcomes for other vulnerable populations, such as people with severe mental illness and opioid use disorder.
The standard response is to improve education of healthcare workers with a focus on the individual. My goal is to leverage the systems-level nursing workforce to improve outcomes for hospitalized IDD patients, impacting the entire hospital. I want to use machine learning to create risk scores to describe patient needs and determine how to deploy hospital nursing resources. Most current interventions for people with disabilities are of poor quality and new interventions are needed. Little is known about how well health services meet the needs of people with disabilities. I am confident that the best and brightest will rise up to address the inequities that hurt people with disabilities every day.
My dream for Katie is that if she ever has to be hospitalized, she won’t be faced with a risky environment where her parents have to be on constant hyper-vigilance. I hope that nurses are given the training and resources to care for these highly-demanding patients.
I envision a national system of care for people like Katie, rather than a multitude of individual hospital programs. IDD care is currently uneven, with some hospitals having specialty programs and others not. Ideally, people with IDD would be evaluated using a formula that takes into account social determinants of health, comorbidities, and diagnoses, and appropriate care would be provided to all people with IDD. Above all, I want to make the world a better place for my daughter and her peers, who she has many of.
Lynn Moronski is an associate research fellow at the Leonard Davis Institute for Health Economics and a postdoctoral fellow at the Center for Health Outcomes and Policy Research in the School of Nursing at the University of Pennsylvania.