Meet my friend, Vance. Vance is a 30-something man, a “people person,” husband, father, homeowner, accomplished professional with multiple degrees from prestigious universities, and valued community member, friend and employee.
Like many Americans, he rises at the crack of dawn each day to commute to his demanding job and then races home at night to tend to the needs of his family. What sets Vance apart is that he was diagnosed with muscular dystrophy as a very young boy, began using a power wheelchair before high school, and lives a full and independent life thanks to the physical supports of family members, paid caregivers and technology.
Vance is an extraordinary man — but he is also exceptional. He is exceptional because he has effectively navigated a system that was not built to accommodate him. Vance is a member of a growing community — literally a new generation in the world: adults living with pediatric disorders.
Each year in the U.S., nearly a half-million children with special health care needs cross into adulthood, and the numbers continue to grow. These individuals aren’t the problem — they’re the success stories. The problem is that the system isn’t ready for them.
To help address that problem, MDA is launching a new transitional services program aimed at assessing the multifaceted needs of our young-adult community, and identifying necessary support and services.
Thanks to advances in medical research and comprehensive clinical care, children with what were once thought of as “pediatric” neuromuscular diseases (such as Duchenne muscular dystrophy and spinal muscular atrophy) now are living long into adulthood.
Adult-care physicians often lack knowledge about caring for adults with disorders traditionally known only to the pediatric medical community. Families also may not equipped for the extended life expectancy needs of their adult child. Federal/state resources aimed at this age group are few and far between. Families and young adults looking for community supports — housing, transportation, personal care assistance, employment — often find nothing.
What is “transition?”
With careful planning and comprehensive resources and supports, youngsters with neuromuscular diseases can make the switch — transition — to full, productive, independent adult lives.
Transition medicine refers to the process of helping adolescents and young adults with chronic pediatric illnesses move to adult-centered care.
Transition also refers to the process of acquiring the skills and support to achieve maximum independence. Transition involves psychosocial, financial, legal, medical and social services elements.
Medicaid has been one of the biggest obstacles for transitioning young adults. Under the Comprehensive Care Program, people younger than 21 receive “any medically necessary and appropriate health care service, regardless of the limitations of the state’s Medicaid program.” But at age 21, each Medicaid case becomes managed by an outside provider, and a cap is placed on the amount of money received. Funding rarely covers the level of care needed.
Additionally, there is an inherent disincentive to work built in to the Medicaid system. Medicaid coverage is automatically decreased or eliminated when outside income is earned. Thus many young adults are not seeking employment, despite a desire to work, due to the fear that they will lose their health benefits in the process.
MDA’s transitional services program
Last September, MDA assembled a Transitional Services Task Force — a dynamic group of experts in medical and social issues related to neuromuscular disease. With their guidance, as well as input from MDA’s National Task Force on Public Awareness, MDA has developed a transition tool aimed at empowering youngsters and families as they begin the transition process. This tool — known as the Roadmap to Independence — will be available soon through all MDA clinics and local offices.
Other dimensions of this initiative are evolving and have implications for MDA’s legislative and health policy efforts, as well as its clinical and research programs.
At the heart of all of this is YOU. As we meet with policy makers and assess the needs of our MDA community, it’s vital that we hear from you about the issues you consider most important. If there are programs that are particularly wonderful or particularly lacking — local, state or federal — tell us about them. E-mail us at firstname.lastname@example.org and help transform the Transitional Services Initiative into a force multiplier. There’s great strength in our numbers. Together we can overcome the resource barriers that exist for adults with neuromuscular disorders.
Annie Kennedy is MDA’s vice president for Advocacy.