Women with disabilities ‘deserve health equity’

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 health-care 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 health-care decisions, according to a press release from the New Jersey Department of Human Services (NJDHS).

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“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,” said Kaylee McGuire, DHS deputy commissioner for Aging and Disability Services.

“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 health-care 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,” she added. “Sometimes it’s related to a health-care provider’s lack of training or experience with people who have intellectual disabilities.”

The RISN Center’s 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 (for example: extra time, sensory issues) and concerns.
  • Accessible resources: The RISN Center has developed 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 health care for people with different abilities by including them in their own health-care decisions,” noted Jennifer LeComte, 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.”

For more information about the RISN Center, visit https://centers.rowanmedicine.com/risn/

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