Five years ago, when the Healthcare Center for Women with Disabilities opened at Magee-Womens Hospital, hopes were high that it would fill a long-neglected need in the community.

Tony Tye, Post-Gazette Christine Craig, of McKees Rocks, who has multiple sclerosis, is weighed in her wheelchair at the Center for Women with Disabilities at Magee-Womens Hospital before being examined. Assisting her are Toni Baker, left, and Jamie Hartzell, of Beechview, a nurse's assistant for Ms. Craig. The wheelchair is weighed separately later to determine Ms. Craig's weight. Click photo for larger image.

Guided in its design by women with disabilities, the new clinic eliminated the physical barriers that keep many women from routine exams and screenings. Featuring fully accessible exam equipment and specially trained staff, it was one of the first such clinics in the nation.

But five years after that promising beginning, the center stands at a crossroads. Open only one afternoon per week since its inception, it serves only about six patients per week and cannot keep up with the demand for its services. Wait times for appointments range from eight to 12 weeks or longer.

Magee and UPMC have formed a committee to explore ways to expand the center. Magee officials refrained from speculating on scenarios for expansion, but one possibility might be to combine the center with other UPMC services for people with disabilities.

Whatever solution is chosen, certain things are clear: The high demand for these specialized services reflects a lack of options in our region -- a situation shared with most of the nation.

Also, the challenge facing the Magee center is a prime opportunity for UPMC -- the region's largest healthcare provider -- to examine how it can improve systemwide access for people with disabilities, not just women.

"The center is absolutely wonderful, but there are a lot of women who can't be accommodated," said Margaret Kimmel, Ph.D., who serves on the advisory board for the Magee center and is a patient there.

Ironically, the clinic's comprehensive, patient-centered model of care has hampered its ability to grow. Appointments at the clinic are more involved than typical ones, lasting as much as three or four times as long and requiring multiple practitioners. This type of care comes with a high price tag.

Research on the lack of preventative healthcare for women with disabilities reveals the surprising fact that the problem is not the patient's inability to pay. In fact, most of these patients have health insurance. Rather, the difficulty is the expense of providing adequate staff and time, given that insurers do not cover these associated costs.

Women with disabilities -- about 27 million nationally -- are one of the most underserved populations in terms of preventative healthcare, according to the FISA Foundation. The foundation, which has a special interest in the health of women and girls with disabilities, supported the start-up of the Magee center with a grant of nearly $200,000. FISA's executive director, Dee Delaney, sits on the center's advisory board.

Studies show that women with disabilities do not ignore their health. Statistically, they use healthcare services at a higher rate than the most of the population. However, their most pressing medical needs often take priority. Preventative care falls off the radar screen because it is more difficult to find and use. The consequences of foregoing that care can be disastrous.

"All women hate those exams," said Ann Mageras, vice president of the Allegheny District Chapter of the National Multiple Sclerosis Society. Perhaps more so if you are a women with MS, she said.

"After they have children, they generally don't go. It takes too much effort, combined with other appointments and transportation issues. When they do go, they struggle to get onto the exam table."

A 2000 survey by the group found that the average length between gynecological visits is seven years. "One woman had not gone in 25 years," said Ms. Mageras.

Recently, the organization sponsored a program in which nurse/midwives provided gynecological exams in patients' homes. Although funding for that program has ended, woman can call the MS chapter for free transportation and a health aide to accompany them to their medical appointments.

The need for more preventative care options is clear. "You hear all this about getting your pap smears and mammograms, but if there's no place I can go, then you're not including me in all that prevention awareness," said Judy Barricella, director of the Disability Connection office of the Allegheny County Department of Human Services, and a wheelchair user.

Many women find that when a facility is not prepared to accommodate disability, the experience can be demeaning or even painful. A Washington County woman who has MS tells about a mammogram experience at a clinic that lacked wheelchair-accessible equipment. "I had a woman on each side holding me up under my armpits while another woman clamped down my breast for the X-ray."

Recently, when the same woman told the receptionist of her primary care provider that she might not be able to get onto the exam table, she was assured rather smugly, "Oh, we'll get you up there."

"Well, that just added more stress," she said.

Slapdash accommodations such as these are what the Magee center set out to replace. As a solo offering, however, its ability to effect widespread change is limited.

Lucy Spruill, a member of the Magee center's advisory board and a wheelchair user, is not surprised that the clinic has not been able to meet the demand for its services.

While praising the center for the quality of its care, she noted that the existence of a special center produces positive and negative consequences: "You get a demand that exceeds the resource. You get a bottleneck."

Just as troubling, she said, a special center produces "a mindset that you have to go to that place -- and only there -- to get your care." Ms. Spruill would like to see Magee and UPMC put their energy into making sure that all clinics are accessible and to train physicians to better understand disability.

Authors of an influential 2004 report titled "It Takes More than Ramps to Solve the Crisis of Healthcare for People with Disabilities," published by the Rehabilitation Institute of Chicago, assert that large healthcare institutions do not yet grasp what it means to fully accept and serve the ever-growing number of patients with disabilities.

The healthcare delivery system is not structured to provide effective care to people with disabilities, the report states. While the Americans with Disabilities Act has increased awareness of physical barriers, most providers have not embraced "the core principles of the ADA -- equality of opportunity, access, fair treatment and self-determination." Legal consequences should not be the driving force for systemic change, the report says. Healthcare access is a "moral mandate, no different from moral mandates related to race, creed, religious preference."

Some newer healthcare organizations are able to start fresh with this philosophy. For example, the Squirrel Hill Health Center, a federally funded facility that opened last year, features universally designed equipment and accommodations for many different types of disabilities. It is one of very few locations with such access.

The high demand for services at the Magee center "is not an easy problem for a healthcare center to solve and will take time," said center advisory member Kimmel, who also serves on the UPMC board. "But I have confidence that this exploration will make a significant stride."

The time element is frustrating, Kimmel noted, especially in light of the fact that the ADA became law 16 years ago. Indeed, while progress in medical science and technology moves at a rapid pace, change within healthcare systems moves much more slowly.

Equally as frustrating, say those who follow the issues at the Magee center with interest, is the possibility that the solution will reflect practical needs within UPMC or traditional views about disability services, rather than forward-thinking leadership.

"Basically, it's a commitment issue," said Ms. Barricella.