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Hear as NJ resident talks about discrimination in health care settings
Kelly Boyd of Hamilton Township uses a wheelchair due to having severe rheumatoid arthritis and has experienced discrimination in health care settings
Regarding “NJ has a huge health care gap for people with disabilities. Dig into our series,” NorthJersey.com, Nov. 18:
The recent series, “Hurdles to Health Care,” shines an important light on challenges facing individuals with intellectual and developmental disabilities — or I/DD — who too often face barriers to accessing quality health care. Although these obstacles are not new, it is beyond time to address them.
Both our organizations, New Concepts for Living, or NCFL, and Valley Health System, have long witnessed how individuals with I/DD struggle within health care systems that were not designed for their unique needs.
A gap in care has been caused by a lack in specialized training necessary to accommodate the unique physical, communication, sensory or behavioral needs of individuals with I/DD. Additionally, medical offices require specific equipment to deliver care in a safe and comfortable environment. The result is not only inadequate care, but a loss of trust with the health care system among individuals with I/DD and their families.
New Jersey’s I/DD community has evolving health needs
New Jersey holds one of the nation’s highest populations of individuals with I/DD. According to the Centers for Disease Control and Prevention, approximately one in 29 8-year-olds in New Jersey were identified with autism spectrum disorder, or ASD, in 2022 — one of the highest rates in the United States. These numbers reflect a growing community whose health needs continue to evolve as they age and must be accounted for over a lifetime of care.
To help address the growing disparities in care among people with disabilities, New Concepts for Living and Valley Health System have joined forces to help proactively and compassionately bridge the gaps identified. Our goal is the same: to make care more accessible, personal and effective for individuals with I/DD.
When NCFL converted an old Barnes & Noble into an expansive, state-of-the-art Achievement Center in Paramus, the forward-thinking plans included a medical consultation suite with the intent of bringing in specialists familiar with the population to care for patients in a familiar, comfortable environment. This not only reduces the stress of travel and encounters with unfamiliar surroundings for individuals with I/DD, but it also ensures clinicians better understand their patients’ unique needs.
The result is a new relationship with Valley Health System that allows NCFL clients to receive the high-quality care they deserve from Valley’s specially trained physicians, nurses and staff. Our collaboration represents a guide that can be replicated and serve as a model for treating an often underserved population.
NCFL continues to work to identify and source providers with the requisite know-how to treat the I/DD population and ensure top notch care for its clients.
The solution to inequitable care for individuals with I/DD requires hospitals, provider agencies, medical schools and others to understand this population and their unique needs. We need more doctors, nurses and health care providers equipped with the knowledge, skills and sensitivity to treat patients with I/DD with the same dignity afforded to others. And we need more agencies, like NCFL, that offer services and support for people with I/DD, who must have the resources and initiative to connect their clients with those health care providers. Together, we can ensure that no one’s disability becomes a barrier to quality health care.
Steve Setteducati is the CEO of Paramus-based New Concepts for Living, New Jersey’s premier provider of services and supports for adults with I/DD. Dawn Calamari-Brinkrode, DO, is the medical director of the Earl A. Wheaton, Jr., MD, Family Care Center in Ridgewood, which provides comprehensive outpatient primary, prenatal, pediatric and specialty care to patients of all ages.
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