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Women with Disabilities Health Care Summit Report
"Strategies for Change"
(July 2001)

Following in a hero's footsteps
An interview with Women with Disabilities Health Care Steering committee Chair Holly Wetscher

After the death of the Women with Disabilities Health Care (WWDHC) Steering Committee Chair, Colleen Fraser, on September 11, Council Chair Maureen Babula appointed Holly Wetscher the new chair of the committee.

Wetscher has a master’s degree in rehabilitation counseling from Hofstra University. She worked as a rehabilitation counselor for 20 years in New York. Throughout that time, she advocated for consumers, helping them to achieve their goals.

Wetscher has also served on many boards and committees, including a New York State task force studying the relationship between aging and cerebral palsy. She said, "My work on that committee sparked my curiosity and interest in the importance of proper health care for women with disabilities. I came to realize that this issue has been sorely ignored."

Wetscher currently works as a development officer for the Cerebral Palsy League in Union County. She serves on the Union County Advisory Board on the Disabled and on the Executive Board of the Alliance for Disabled in Action, Inc., an independent living center.

Her selection as WWDHC steering committee chair was bittersweet. "Colleen Fraser’s tragic death was an enormous loss for everyone who knew her. She was truly a champion and she was my hero. I admired her great strength and steadfast commitment to every project she pursued. I was grateful to have an opportunity to work closely with her.

"When the Council asked me to step in as chairperson of this committee, I felt tremendously humbled and honored. Nevertheless, I was also extremely ambivalent. She would be a tough act to follow.

"However, after I took a deep breath, I thought of how passionately she felt about this initiative. She would not have wanted it to end. As I told the steering committee, I know my small feet could never fill her shoes, but I would follow her footsteps in continuing her important work. Our entire committee has become even more united and committed. I sincerely thank all of them for hanging in there."

Wetscher said the steering committee has been hard at work these past seven months.

"The WWDHC steering committee has been working feverishly in developing an agenda to address the myriad of issues raised at the Summit."

The steering committee’s first step was to create four subcommittees to accomplish its goals. These include:

n Wellness and Prevention

n Media and Publications

n Advocacy and Legislation

n Research

The Advocacy and Legislation Committee and the Research Committee have been reviewing literature and current legislation concerning accessibility and equality for satisfactory healthcare.

The Media Committee is working with all the groups to generate ideas and suggestions for the first newsletter. These publications will focus on the health issues of women with disabilities and access to appropriate medical care.

"Our goal is to reach out to as many women and health care professionals as possible in the state. We will distribute newsletters on an ongoing basis. We will do this to communicate and develop a greater awareness and appreciation of the vital health care needs of women with disabilities.

"Eventually, we will have our own magazine dedicated to this topic. We will make a continuous effort to do press releases and articles to reach out to the public. In short, we are getting the word out."

The steering committee is also connecting with the state medical and public health associations and their sub-specialty associations.

"Gynecological care is an extremely hot issue. The consensus among most women with disabilities is that they are unable to obtain routine examinations due to inaccessible tables, mammography equipment, etc.

"Attitude is also a major barrier, according to many women. The steering committee is working toward tearing down these barriers and creating systems change. I have great hopes that the health care needs of women with disabilities will not be overlooked in our communities in New Jersey."

Executive Summary

In June, 2001, 66 women with disabilities gathered in Iselin, New Jersey, from all over the state. They came together to start a movement. The movement’s goals were: to improve the quality of health care for women with disabilities: to increase its availability and to assure that it is delivered by health professionals knowledgeable about and sensitive to the specific needs of women with disabilities, regardless of the nature of those disabilities.

Led by keynote speaker June Isaacson Kailes, the women identified a number of barriers that prevented them from receiving adequate health care. Among them are:
n Inadequate preparation of medical professionals to treat illnesses in women with disabilities;
n Inaccessibility of medical facilities and equipment, such as doctor’s offices and clinics, mammography machines and examination tables;
n Failure of medical professionals to treat women with disabilities as fully human, denying their sexuality and capacity to bear children and refusing to include them in important medical decisions affecting them;
n Lack of adequate research on the impact of aging on women with different disabilities.

Summit participants began to develop strategies to address the most significant issues they had identified. They established a steering committee to develop those strategies further and to acquire the additional support and resources to implement them.

Planning the Summit

In August 1999, the National Centers for Disease Control and Prevention and the World Institute on Disability held a national conference in San Antonio, Texas, called Promoting the Health and Wellness of Women with Disabilities. The N.J. Developmental Disabilities Council sponsored Colleen Fraser, Executive Director of the Progressive Center for Independent Living and a Council member, and Kate Blisard, Director of the People’s Support Network, to attend.

They came back determined to put what they learned into action. They sought and received support from the Council. With it, they brought together a group of women who shared their interest in improving health care for women with disabilities in New Jersey. The group called itself the Women with Disabilities Health Care Planning Committee. Fraser chaired it.

The committee first met in the fall of 2000. Its members were committed to producing concrete, positive change. They also realized they were embarking on a major undertaking. Making the health care system more responsive to women with disabilities would not be easy or done overnight.

It would require commitment to a long-term strategy. That strategy had to be created and owned by a large number of women with disabilities in New Jersey. Without their ownership and active participation, change would not occur. Past efforts at health care reform made that very clear.

The committee enlisted June Isaacson Kailes to advise it. Well known for her expertise in health and wellness issues affecting women with disabilities, Kailes is a consultant in that field.

Kailes participated in the committee’s initial planning session by teleconference and gave it invaluable advice. She was everyone’s choice to keynote the summit, once the decision was made to convene one.

That decision came early in the committee’s deliberations. It decided it needed to expand its base to a larger circle of women with disabilities. It needed their help to define the issues. It needed their input to develop the solutions. It needed their support and the political muscle that comes with numbers to make those solutions happen.

That required some kind of gathering, some coming together, even though the committee recognized the contradictions inherent in beginning any action-oriented activity with a conference.

"Who wants to sit through another day of experts without disabilities telling us what they think we ought know and do about our bodies and minds?"

Gradually, the notion of a health care summit by and for women with disabilities began to emerge. Women with disabilities would attend it. Women with disabilities would address the health care issues that they had decided were important. At the summit, women with disabilities would build an ongoing strategy, a broad range of related activities to improve their health and wellness that would engage an ever widening circle of women with disabilities until its goals were accomplished.

After the summit, they would carry out that strategy with the energy it generated. They would seek continued support from the Council to carry out the strategy that emerged from the summit.

To broaden ownership of the summit even before it began, the committee developed a survey to find out what health care issues were most important to women with disabilities in New Jersey. The results of the survey were used to structure the agenda for the summit.

The survey went to a list of women advocates with disabilities that each committee member contributed to. It also went to the female members of several advocacy groups: the Monday Morning networks, the NJ Self-advocacy Project, post polio and multiple sclerosis organizations and other self-help groups. Women with disabilities from Partners in Policymaking and Project Take Charge also received the survey.

More than 130 women with disabilities returned the surveys. The committee used the results to prioritize topics for the summit.

The committee also decided that the women who had completed the survey would be the first ones invited to attend the summit. That was the kind of commitment the committee members knew they needed to accomplish their goals and they wanted to reward it. Others were later added but attendance at the summit was by invitation only.

A date was set, a site located and transportation arranged. Everyone pitched in, contributing ideas for the summit agenda, brochure and logo. Committee member Betty Gill rendered the logo on her Mac computer. It was crafted into a pin that every summit attendee received and appears on the Council website, www.njcdd.org, to identify the ongoing activities resulting from the summit.

THE SUMMIT
June Isaacson Kailes -- Keynote Speaker

Sixty-six women gathered at the Hilton Woodbridge Hotel in Iselin, New Jersey on Saturday June 16, 2001, to attend the "Women with Disabilities Health Care Summit: Strategies for Change," sponsored by the Developmental Disabilities Council. At the summit, women with disabilities defined problems and began the search for solutions.

June Isaacson Kailes gave the keynote to begin the summit. Kailes is one of the most respected national leaders in the independent living movement. By presidential appointment, she is the chair of the United States Access Board. Kailes does consulting work for Research and Training Centers on Managed Care. She has written several disability-related books.

Kailes presented a national perspective on health, wellness and aging with a disability. Half the room raised their hands when Kailes asked how many women have had trouble finding a doctor familiar with their disability. More than half raised their hands when she asked how many are having problems with aging with a disability.

Kailes made these points:

n In the past, aging with a disability was not an issue. We didn’t age; we died. We are the first generation of women with disabilities to live this long.

n Living longer means coping with new, unexpected health conditions. Women with long-term disabilities acquire age-related impairments faster than our non-disabled peers, even ahead of older age groups. Our energy depletes earlier. Research has confirmed this.

n Lack of knowledge about disability by health practitioners is a problem. We spend billions on extending life, but little to help people cope with the extended life. The three most common symptoms of post-disability syndrome are fatigue, pain and weakness. These are common to all disability groups. Doctors give the reflex response, ‘You’re getting older,’ whenever women have increasing symptoms. We need to insist that they take us seriously.

n We are not receiving medical and preventive care as effective as that provided to others.

n Society and doctors think women with disabilities don’t need to stay healthy or have a healthy lifestyle because they think we are already sick. We need guidelines about fitness, exercise, nutrition and weight control. Because we tend to have sedentary lifestyles, we need more exercise, but nobody tells us how or how much. Where do we find personal trainers that know about our issue? Where do we find exercise tapes for us? What equipment do we use? Will weight lifting worsen or help us?

n Exercise facilities need to be convenient and accessible. They must use equipment that incorporates universal design principles so people with a broad spectrum of strengths and abilities can use it.

n We need knowledgeable providers; best practice information, such as The Manual Wheelchair Training Guide and ADA enforcement. We need guidelines on secondary conditions. We need tests and screenings geared toward disabled women. We need seated mammograms and exam tables that lower.

n We need peer support. We need to promote research that is cross-disability relevant. When we talk about functional disability rather than an individual disability, we can get more done as advocates. Advocates work in nanoseconds. Researchers work in geologic time. They’re always saying, ‘We need data.’

n We need organizations that provide advocacy and support for us. They should teach us how to file complaints and lawsuits.

n The ADA is our power. When we sue, they listen.

n We are often pioneers whether we like it or not, pioneers who didn’t sign up for the expedition.

The plenary session was followed by four workshops.

Colleen Fraser, Moderator

Issues:

n Transportation companies are undependable, causing women with disabilities to miss or be late for appointments;

n The health care system is inflexible when women with disabilities are involved;

n We don’t know what the medical schools teach providers about women with disabilities;

n Receiving home health aide services under Medicare requires an individual to be homebound;

n The lack of written provision in the law for monitoring ADA compliance is a problem;

n Women with disabilities face obstacles in obtaining pharmaceuticals. Unless she is receiving Social Security Disability Insurance (SSDI), she cannot receive Pharmaceutical Assistance to the Aged & Disabled (PAAD) benefits;

n People must have a job to get health care, and then cannot get benefits due to having a job;

n Women who need home health care have difficulty obtaining enough service;

n The Nurse Practice Act prohibits non-medical professionals from performing duties considered as "medical."

Recommendations:

n Monitor proposed changes in the Nurse Practice Act;

n Contact the new National Center on Physical Activity and Disability to obtain information;

n Support bills that change Medicare and Medicaid homebound policies;

n Unite with the American Association of Retired Persons (AARP), become members, be on their boards, make our issues their issues;

n Know our rights under the Americans with Disabilities Act and educate others about them;

n Monitor doctors’ offices for ADA compliance for persons with disabilities, including those with mobility and non-mobility disabilities, both visible and invisible.

2. Women with Disabilities through the Lifecycle:
Sexual and Reproductive Health, Menopause

Janet Chiorello-Ellis, Moderator

Issues:

n Doctors, especially gynecologists, show a lack of knowledge of and respect for women with disabilities;

n Doctors treat some women with disabilities as if they don’t know their own bodies well enough to participate in their own health care decisions; physicians do not take their health care complaints seriously;

n Many doctors expect women with disabilities to forego having children;

n The medical community does not understand that we are sexual beings;

n Mainstream women’s magazines do not deal with issues about the reproductive health of women with disabilities.

Recommendations:

n Teach the public that we are sexual beings;

n Network with mainstream women’s groups to find common ground and distribute information;

n Educate girls and teens with disabilities so they can take charge of their lives;

n Organize a conference to educate doctors, similar to a program at Villanova University, where women with disabilities educate health care professionals about people with disabilities;

n Learn how Villanova started its program and replicate it in New Jersey;

n Offer sex education to students in special education;

n Report problems with doctors to health insurance companies;

n Send copies of families magazine to libraries, high schools and gynecologists;

n Make the DD Council’s publications available in news stands;

n Ask manufacturers of female products to fund research on issues affecting women with disabilities;

n Get the beauty industry on our side;

n Let parenting magazines know how many women with disabilities live in this country and ask them to write about issues affecting us;

n Start a magazine or newsletter about the health and wellness of women with disabilities;

n Participate in talk shows or health shows on cable stations or New Jersey Network.

3. Health Conditions Resulting from Disability and Aging

June Isaacson Kailes, Moderator

Issues:

n Attendant services are not available;

n Health care providers are not accessible;

n Medical examination equipment is not accessible;

n Women with disabilities lack knowledge about ADA access laws;

n Managed care groups do not obey ADA requirements;

n Health care providers can’t distinguish between disability and the typical aging process;

n Doctors lack knowledge about the everyday lives of women with disabilities;

n Women with disabilities often don’t know how to self-advocate and self-educate;

n Women with disabilities have low energy levels.

Recommendations:

n Strategize to make information about the needs of women with disabilities part of medical school curricula;

n Continuing medical education should include disability issues;

n Make physicians aware of long term ramifications of certain disability conditions;

n Compile a directory of accessible doctors’ offices;

n Contact pharmaceutical companies to obtain funding for grants;

n Find a legislative liaison with an interest in women’s disabilities;

n Pool resources to create an office for disabled women’s health issues;

n Be more informed about our conditions and what we need;

n Senior and disability communities should unite on shared concerns;

n Look into ways to apply ADA enforcement to managed care groups;

n Contact pharmaceutical companies whose doctors target specific populations;

n Plan in-services and internships where medical professionals can get hands-on training and learn about the needs of women with disabilities;

n Use mainstream media to disseminate information;

n Additional funding for services for research grants;

n Pool and centralize resources to find more money for research;

n Create an office within the Division on Disability Services to assist with research;

n Find a legislative liaison who is familiar with the aging issues of women with disabilities;

n Reach out to young people to help with lobbying;

n Funnel more funds for attendant care through legislation like MiCASSA (Medicaid Community Attendant Services & Supports Act).

4. Staying Well: Fitness, Exercise, Nutrition, Prevention and Screenings

Lisa Adams, Moderator

Issues:

n Insurance companies do not consider physical therapy or exercise as preventive medicine;

n We need exercise videos for older women and those with disabilities;

n Women with disabilities don’t know how to exercise;

n Difficulty obtaining approval from physicians for swim therapy as rehabilitation;

n Insurance companies don’t want to pay for swim therapy;

n We don’t have enough information about healthy eating and nutrition for women with disabilities;

n Doctors think women with disabilities don’t need screenings;

n Mammogram machines are inaccessible;

n It takes too long to obtain durable medical equipment.

Recommendations:

n Create mobile units that have accessible exercise equipment;

n Develop a tailored home exercise program;

n Gather information about accessible gyms;

n Look into aerobic tapes for women of all abilities;

n Find accessible water parks and recreation sites;

n Get information about hydraulic lifts for pools and accessible examination tables;

n Ask libraries to stock catalogs of exercise videos for previewing;

n Market accessible and adaptive health and recreational equipment;

n Develop a mobile van with accessible mammogram machines.