Impact Feature Issue on Enhancing Quality and Coordination of Health Care for Persons with Chronic Illness and/or Disabilities

No matter where you live, the health care system in the United States can be complex and difficult to navigate. For individuals with disabilities, one of the greatest challenges lies in being able to access health care providers when needed, obtain approval for services or medical equipment in a timely manner, and make sure the lines of communication among providers are open so that multiple individual needs are met. In Minnesota, a new program has been designed to meet these needs of people with physical disabilities who receive Medicaid. It’s called AXIS Healthcare.

AXIS doesn’t provide health care services. It empowers people with disabilities to make choices about their health care and helps cut through the red tape to coordinate the unique needs of each consumer with a disability. While many managed care organizations have care coordinators or case managers charged with linking consumers with the services they need, what they often lack is expertise in disability issues. AXIS Healthcare, an organization specializing in disability and founded by two rehabilitation service providers – Courage Center and Sister Kenny Institute – was designed for and with people with disabilities.

Development of AXIS Healthcare

With grant support from the Robert Wood Johnson Foundation, AXIS worked with consumers in a pilot project in 2000 and 2001 to build the program model. The goal was to build a quality organization people wanted to join, not a mandatory managed care plan people had to join. The starting point – and the best health care consultant – was the customer. During the pilot project, AXIS provided health coordination services on a voluntary basis for over 40 individuals who voiced their expectations, designed their own care plans, and identified their preferred health care providers. More importantly, they expressed their frustration with the existing delivery system and recommended changes and opportunities for improvement or efficiency. The goal was to have doctors view their patients not as intermittent problems or symptoms caused by their disabilities or chronic conditions, but as whole people needing a range of health care services. Together, AXIS staff and the pilot participants built interest in this new model, engaging key providers and demonstrating that obtaining the right care or service at the right time is primarily the result of coordination rather than increased dollars. In fact, we strongly believe there is plenty of money in the system now serving people with disabilities. The problem is that rules haven’t allowed for the flexibility to spend it in the right places at the right times.

AXIS Healthcare and the pilot participants worked with UCare Minnesota, a health plan created to serve persons receiving Medicaid or dual eligible for Medicaid and Medicare, with UCare Minnesota’s extensive health care provider network, and with the Minnesota Department of Human Services to build a better system. With almost 100,000 members, UCare Minnesota brought to the process extensive experience in managed care and a commitment to flexibility in meeting the needs of persons with physical disabilities. The Department of Human Services, serving as the state Medicaid office, understood that the existing fee-for-service system had created “islands of care,” with minimal integration of services and supports.

What AXIS Offers Members

AXIS started accepting enrollment in July, 2001. No longer a pilot program, today it serves over 400 persons in a manner that promotes holistic, self-directed health management. It is available for adults with physical disabilities on Medicaid, with or without Medicare, residing in the Minneapolis/St. Paul metropolitan area. It is a voluntary program, and people can leave the program at any time, making consumer satisfaction a top priority for AXIS.

AXIS is staffed by health coordinators and resource coordinators who have extensive experience working with persons with physical disabilities and their providers. Health coordinators are registered nurses who manage health issues, medications, rehabilitation equipment, and clinic visits. Resource coordinators generally have a background in social service and assist the members in the housing, financial, and social support areas.

Upon a member’s enrollment in the program, a health coordinator conducts a comprehensive assessment to identify the enrollee’s health care needs. Together they design an individualized plan that promotes independent living and builds in the right level of support. The level of specialization of each plan encourages enrollees to play a more active, informed role in their health care. The member, their primary care physician, and the AXIS health coordinator function as the core team in managing the full range of services and supports needed for members to experience quality in their lives. The focus of staff is on risk prevention strategies including routine clinic exams and purchase of needed medical equipment to avoid future problems. If an acute illness or medical concern arises, AXIS staff assist the member in receiving early intervention. Staff are also available around the clock to triage emergency concerns. 

But history and program operation only tell part of the story. The best way to describe AXIS is through the people who live and breathe it – people like Ron Franke.

Ron’s Story

For more than 20 years, Ron Franke has lived with multiple sclerosis. For the first 18 of those years, he navigated the health care system on his own and stayed fairly healthy. Then four years ago, he developed a skin ulcer the size of a fist that landed him in the hospital and then a nursing home for more than a year. As he recalls, “In the winter of 2000, I started to have skin breakdown. I had a nurse visit me once a week on Tuesdays. She noticed the breakdown and prescribed a treatment that was painful and caused more breakdown. The next week when she checked my skin, the breakdown was so bad that she had me call the wound clinic. I was told I needed a skin debridement. The doctor encouraged me to go to a nursing home for treatment. The nursing home did a pretty good job, but I developed bone, urinary, and two intestinal infections. I was in bed for nine months.” “After all that time,” says Ron, “I still had my condominium, but didn’t know how to put the pieces together to move back home.” For Ron, the health care system had become a big dark room. “You’re fairly certain everything that you need is in there, but you either don’t know what it is or can’t find it when you need it.” 

Ron began a search to find alternative care so that he could move back to his condominium. During this search he learned about AXIS.“I was told I was a good candidate for this new program called AXIS,” says Ron. “I enrolled in AXIS Healthcare in January 1, 2002. Patty, my health coordinator from AXIS, sprung me from the nursing home on February 3, 2002.” 

Through joining AXIS, Ron believes he has finally discovered a light switch to that room. Though he had another skin breakdown shortly after joining, this time he made a six-week recovery at home. “Whenever there is a problem now, I just call Patty,” he says. “It is a night and day difference. The health coordinators have lots of good ideas. Recently, I received a remote control device that I operate with my cheek. It controls the TV, lights, and stereo, everything I need. I also received an automatic door opener that I control by moving my head. Now I can keep my door closed and feel safe. Yes, life is good!” he says.

Like Ron, many people with disabilities who are on Medicaid experience barriers to coordinated care and integrated services. Without good care coordination, they receive fragmented specialty care and too little primary care, and often incur costs that may have been reduced or prevented. Ron Franke describes the difference in his health care as “graphic” because of AXIS. “I figure my first skin breakdown cost the state between $50,000 and $100,000. In the 36 months that I have been a member of AXIS Healthcare, I’ve been hospitalized twice for a total of two days. Compared to before, that’s a huge difference. It’s cheaper and better – a win/win situation.”

 Ron is back working part-time. He’s got flowers planted outside of the window, and his daughter can take the bus from school to stop by for a visit. “Plus,” he says, “I have peace of mind. I never feel like I can’t get help.”

Conclusion

While a comprehensive evaluation of outcomes for AXIS members is in the process of being completed, findings from preliminary data indicate higher consumer satisfaction with providers and health care services since enrollment in AXIS, and increased member participation in making health care decisions. Results for cost-effectiveness and clinical outcomes have not yet been analyzed.

Ultimately, the AXIS Healthcare program is about improved community living for people with disabilities. Better health care outcomes allow people with disabilities such as Ron to continue living as active, engaged members of their communities.