Like many high school seniors, Drew is busy choosing a college and preparing for the big transition from life at home to life on a college campus. Unlike his peers, Drew has Duchenne muscular dystrophy.
Until relatively recently, the idea that Drew would be able to attend college was unimaginable. But with medical research breakthroughs and advances in therapeutics and treatment, Drew and many others with neuromuscular diseases now enjoy a longer life span and improved quality of life that enables them to pursue a college degree and employment.
Academic success at college will be easy for Drew, who has an enviable GPA. An Eagle Scout and member of his high school’s homecoming court, he has known no barriers he couldn’t surmount.
But what Drew and his parents don’t realize as he prepares to transition from childhood to young adulthood is that many barriers to education, employment and independent living still exist for nearly half a million youth with disabilities and chronic health conditions who cross into adulthood each year in the United States. And this population is growing rapidly.
Reducing these barriers was the goal of a daylong Transitions Pathway Meeting hosted by MDA and the Spina Bifida Association (SBA) on November 29, 2012 in Washington, D.C. The two communities, whose members face similar transition barriers related to physical mobility, were joined by federal partners from the:
“Our goal is transitional freedom. We want young people with disabilities to have the same freedom as those without disabilities to make choices for themselves and transition to whatever their desired independence is in life,” said Annie Kennedy, MDA senior vice president of advocacy, who organized the meeting in collaboration with SBA CEO Cindy Brownstein.
“We have a population of adults that didn’t exist before, and they are now living not just to 30 or 35, but into their 50s. They are outliving their parents, getting higher degrees and looking to contribute to society, get married and have families. But they don’t realize until they attain their degree or other desired goal that the resources to get to the next level don’t exist.”
Barriers identified over the past three years by MDA’s transitional services program range from finding accessible transportation and housing to funding personal care attendant services to locating knowledgeable physicians who treats adults with pediatric-onset diseases. Others include employment and Medicaid benefit eligibility, pain and associated depression, mental health issues, and health care self management. Fragmented and complex federal and state systems of support also present barriers to much needed resources.
Two members of the MDA community shared personal experiences with barriers to independence. Christopher Rosa, City University of New York’s assistant dean for student affairs and a member of MDA’s Board of Directors, spoke about his transition from college to competitive employment and “the largest mistake I’ve ever made in my life” — voluntary forfeiture of Social Security and Medicaid benefits.
“I was so thrilled that I had achieved competitive employment that I told [Social Security and Medicaid] that I didn’t need their support anymore,” said Rosa, who is affected by Beckermuscular dystrophy. “I didn’t have the foresight to understand how my needs would evolve over the course of living with a progressive neuromuscular disease. I didn’t realize how important Medicaid would have been for sustaining my independence with personal care assistance services and housing because, at that critical moment, I had no meaningful benefits counseling or help with program navigation. I’ve spent the last 25 years recovering financially from that mistake. I’m just now experiencing the liberation of independence.”
Angela Wrigglesworth, an award-winning fourth-grade teacher in Houston, Texas, and a member of the MDA National Task Force on Public Awareness, discussed the barriers she's faced in finding accessible housing. Just taking a shower has been a major obstacle for Wrigglesworth, who has spinal muscular atrophy.
In her college dorm, she managed with a makeshift roll-in shower. Upon graduation, she moved to an apartment without a roll-in shower. “If I had renovated the bathroom, I would have been required to put it back the way it was when I moved out. So I commuted 20 minutes to my parents’ house each day for six years just to take a shower!” she related. Now renting a fully accessible house built by friends, she acknowledges that it would be difficult to find accessible accommodations if she ever had to move again.
Recently, Wrigglesworth faced another major obstacle when she was notified by Social Security that she no longer qualified for personal care assistant services because she had crossed over the income threshold.
“On a schoolteacher’s salary, I couldn’t afford to pay for personal care assistants without help,” she said. “I need six hours of assistance each day which costs $23,000 a year, and I have no savings. I can do only three things myself — eat, apply makeup and brush my teeth. For a while, I thought I would have to quit my job and live in a nursing home. That is unacceptable.”
Wrigglesworth contacted her U.S. senator who helped get her benefits reinstated through a little-known waiver. “I know how to work the system, but others don’t,” she observed. “People with disabilities shouldn’t have to jump through hoops to get what they need.”
All meeting participants agreed that partnership and collaboration among the organizations and federal agencies they represent is essential to removing barriers for young people with disabilities and chronic disease conditions who are transitioning to adulthood. Rosa proposed the development of a national disability transition policy for youth.
“All federal agency partners, not-for-profits and organizations for people with disabilities can work together to create a more seamless approach to transition. A national disability transition policy should meet people with disabilities where they are in the transition process and should be sensitive and nimble enough to support people in their self-directed choices when they are at different key stages of transition in their lives.”
MDA’s advocacy program is spearheading the organization of five working subgroups of Transitions Pathway meeting participants, who will work toward the goal of transitional freedom by addressing various aspects of transition. These include:
The entire group will reconvene in six months to report progress among the subgroups and continue working toward meaningful policy change that will enhance transitional freedom for young people transitioning to adulthood.
Judy Thibadeau, a meeting participant and health scientist on the CDC’s Rare Disorders and Health Outcomes team, noted, “This effort will serve all our communities if we can find opportunities to work together, collaborate on great programs that are working and maximize the benefits for everyone.”