Last month Marilyn Saviola, ICS Senior Vice President for Advocacy and the Women’s Health Access Program, sat on a panel at the International Symposium on Achieving Health Equity Through Community Partnerships. This annual meeting, now in its 28th year, is convened by Hunter College of the City University of New York, Weill Cornell Medical College, Memorial Sloan-Kettering Cancer Center and other institutions.
The symposium allows community advocates, academics and researchers who have created successful partnerships to improve a community’s health to share their knowledge and experiences. Marilyn was asked to participate because the ICS Women’s Health Access Program is a perfect example of creating partnerships to address health disparities.
For many communities, health disparities arise from a lack of access to medical care but, as Marilyn often points out, “Access is typically thought of in terms of a lack of health insurance or the distance to the closest medical provider. For people with physical disabilities, though, the meaning is very different.”
People with physical disabilities face physical and attitudinal barriers to health care – like the absence of building ramps, doorways that are too narrow, and exam tables that don’t move up and down – but also ignorance on the part of medical providers about how to competently and appropriately provide services to people with physical disabilities.
Relationships are everything
The basic idea of the partnership model is that to effectively improve the health of any community, members of that community must be present and fully engaged at the table where decisions are made, especially when it comes to defining exactly what the needs are and the best ways to meet those needs. Marilyn’s symposium panel featured successful New York City partnerships, including the ICS Women’s Health Access Program. Professor Anita Nirenberg, who is a member of the ICS Women’s Health Policy Think Tank, was on the panel with Marilyn.
The ICS program reduces health disparities by making it possible for women with physical disabilities to get essential medical services that they have previously been unable to or have had difficulty gaining access to. It began in 2008 with a grant from Susan G. Komen Greater NYC for breast cancer screenings and has grown to include OB/GYN services. It will expand to provide primary care services this year.
Our program offers an excellent example of the partnership model. It would not exist without Marilyn’s deep knowledge and extraordinary advocacy skills, or without the self-advocacy of other women with disabilities who have become empowered to speak out about the lack of access to medical services. It also would not have grown without the support of LaRay Brown and her staff at New York City’s Health and Hospitals Corporation or without medical professionals like Dr. David John and Dr. Patrina Phillip King, as well as the ICS staff of the Women’s Health Program. (Dr. King is pictured above (R) with Marilyn (C) and ICS Nurse Educator Jane Dillera Nietes (L), an essential member of the Women’s Health Access Program.)
By organizing women with disabilities to speak out about their experiences and partnering with the disability rights attorneys at New York Lawyers for the Public Interest to publicize their stories, Marilyn and her team were also able to educate New York State Health Department officials and New York City Council members about the pervasive – and illegal – barriers to health care New Yorkers with physical disabilities face. This opened doors that led, with continuing advocacy and education, to the introduction of breast cancer and gynecological services that now accommodate women with disabilities at a number of medical facilities. It also led to disability awareness training for providers in medical facilities, and to the allocation of public funds to make select facilities more physically accessible.
It’s important to note that the lack of access to health care for people with disabilities is nothing new – nor was the information unknown. The federal Centers for Disease Control and any number of research institutions have published evidence of these health disparities for years. But the relationships ICS built with doctors, nurses, government agencies, and health care institutions allowed them to “see” the problem, a critical step, as attested to by Anita Nirenberg at the symposium.
Anita is an expert in pediatric oncology. She holds prestigious teaching and research positions, and teaches at the largest graduate program at the Hunter-Bellevue School of Nursing. Yet, as she told the symposium audience, “I have been practicing in oncology for many years and it never even occurred to me whether women in wheelchairs could get access to care. Nor were we talking about caring for people with disabilities in our largest nursing program.”
Another partner, Carla Boutin-Foster, MD, recently put it this way, “Our health care system needs leaders at the helm who can speak loudly and raise the public’s awareness of the injustice and health inequities that impact the lives of people living with disabilities.”
Dr. Boutin-Foster teaches medicine and directs the Center for Health Disparities Research at Weill Cornell Medical College. She also chairs the State of New York’s Minority Health Council. She is currently working with Marilyn on a curriculum to raise awareness of the needs of people with physical disabilities among medical students and practicing physicians – a project with the potential to widely and permanently improve access for this severely underserved population.
These partnerships – with advocates, funders, the medical community and government – are the bedrock upon which the ICS Women’s Health Access Program was built and upon which it rests; they are the reason this movement to make health care accessible will continue to grow, solve problems, break down barriers and ultimately eliminate them.