April 15, 2024

(SEWELL) – The Rowan-Virtua Regional Integrated Special Needs (RISN) Center, South Jersey's first primary care practice dedicated to serving individuals with complex special needs, has launched an initiative to improve sexual and reproductive healthcare for women with intellectual and developmental disabilities (IDD).

Funded in part by an Inclusive Healthy Communities (IHC) grant from the New Jersey Department of Human Services’ Division of Disability Services, the effort aims to elevate the standard of care and eliminate healthcare disparities by reducing the stigma associated with sexuality education, deescalating patient fears, addressing potential histories of sexual trauma, and empowering patients to participate in their own healthcare decisions.

“Our Inclusive Healthy Communities program aims to enhance accessibility and health, and that includes ensuring women with intellectual and developmental disabilities receive the same equitable access to vital health care services,” Human Services Deputy Commissioner for Aging and Disability Services Kaylee McGuire said. “Whether it be routine women’s health examinations or more in-depth personalized care, women with IDD deserve health equity.”

IHC is a grant program established in 2020 by the Division of Disability Services. The grants help communities and organizations engage in projects that promote the health and well-being of individuals with disabilities in the communities where they live.

“Individuals with intellectual disabilities have the same gynecological health issues as people who don't have a disability, but are less likely to get these healthcare needs met,” said Wendy Aita, Ph.D., clinical psychologist and co-director of the Rowan-Virtua RISN Center. “Sometimes this is related to the stigma associated with sexuality or the misconception that individuals with disabilities don't need to have reproductive healthcare exams. Sometimes it's related to a healthcare provider’s lack of training or experience with people who have intellectual disabilities.”

The RISN Center’s IHC initiative has several key components designed to ensure comprehensive and compassionate care for patients of all abilities:

• Pap Camp: Women with intellectual disabilities come together with a health professional to talk about sexual and reproductive health and what to expect at a gynecological exam. The goal is to reduce fear about the experience; share methods of coping with stress or anxiety; understand permission and consent; and learn how to directly communicate with healthcare providers and advocate for themselves. Participants leave Pap Camp with a personalized plan they can take to their healthcare provider spelling out their special needs (e.g., extra time, sensory issues) and concerns.
• Accessible Resources: The RISN Center has devleoped accessible, easy-to-understand resources about women’s health topics specifically for individuals with IDD. These resources will include informative pamphlets, videos, and an interactive workbook, ensuring that vital information is available in formats that cater to various learning styles and abilities. The Center included inclusive imaging in the resources.
• Medical Training: Recognizing the vital role of healthcare professionals in delivering inclusive and person-centered care, the RISN Center is developing specialized training for medical students, residents, and practicing healthcare providers. This training equips medical staff with the knowledge and skills to communicate effectively, address the unique needs of patients with disabilities, and provide compassionate care that respects patient autonomy. Topics include accessibility options; addressing sensory issues, anxiety, and past trauma; and understanding the kinds of accommodations patients with disabilities may require.
• Empowerment and Consent: A fundamental aspect of the initiative is promoting the autonomy and agency of individuals with IDD in matters concerning their own bodies. RISN prioritizes teaching self-advocacy skills, fostering a sense of empowerment, and ensuring that medical decisions are made with informed consent.

“We can improve healthcare for people with different abilities by  including them in their own healthcare decisions,” said Jennifer LeComte, DO, medical director of the RISN Center. “We see every appointment as an opportunity to educate and empower patients and their caregivers to advocate for themselves.”

“Inclusive healthcare means giving everyone access to healthcare in the way they need to receive it,” said Wendy Aita, Ph.D. co-director and behavioral health lead of the RISN Center.  “That means we might have to pivot and offer something in a different way. But making even a small accommodation can make an immense difference in a patient’s care.”

“Access to developmentally-appropriate education on sexual and reproductive health is vital for all, including women with intellectual and developmental disabilities,” Deputy Commissioner McGuire said. “Human Services is committed to a more inclusive state, which must include equal access to routine and specialized health care for everyone.”

“One of the goals of the IHC program is to support innovation at the local level that will stimulate change on a wider scale, and that’s what we’re seeing at the RISN Center,” Division of Disability Services Executive Director Peri L. Nearon said. “We’re confident that the RISN Center’s initiative can serve as a model and an inspiration for improving healthcare for women with IDD and other disabilities throughout New Jersey and beyond.”

Visit here to learn more about the RISN Center.