When Angela Wrigglesworth, who has spinal muscular atrophy and uses a power chair, first started college at Texas A&M, she planned to be a business major.
Getting to the business school, however, involved crossing a set of train tracks, and one day, Wrigglesworth’s chair got struck on the tracks.
Wrigglesworth received help from bystanders to free her 300-pound chair before a train came along, but after that harrowing experience, she decided to change majors.
“I became a teacher so I wouldn’t have to cross the tracks” to get to class, Wrigglesworth explained during the MDA-sponsored National Neuromuscular Transitions Summit, held in Washington, D.C., Sept. 23, 2011. Wrigglesworth, 34, now teaches fourth grade in a public school near Houston.
Wrigglesworth’s difficulty crossing the tracks — and how the experience shaped her future — is symbolic of the many barriers that young people with neuromuscular diseases must traverse on their way to becoming productive adults.
Those barriers, and how they can be overcome or broken down, were the subject of the one-day summit.
Wrigglesworth was one of six accomplished young adults with neuromuscular diseases who spoke about their experiences to an invited audience of about 50 government officials, policymakers and MDA family members at the event.
Attendees included officials from the National Institutes of Health, the Centers for Disease Control and Prevention, the U.S. Department of Education, and several other public and private agencies that work with people with disabilities. Former Maryland governor Robert Ehrlich, who created the nation’s first cabinet-level department of disabilities, was the keynote speaker.
The summit was part of MDA’s Transitions Initiative, a multipronged effort to address the needs of young people living with pediatric neuromuscular diseases as they transition from childhood to adulthood. The Transitions Initiative includes a new website with numerous interactive features, a task force, resource lists, surveys, clinical outreach efforts and conferences such as this.
“We want to identify specific resource obstacles and absences, and what’s out there that’s being underutilized, in order to create a neuromuscular transition plan,” said MDA Senior Vice President for Advocacy Annie Kennedy, who organized the summit.
In addition to Wrigglesworth, the panelists were:
Kennedy began the conference with some preliminary results from MDA’s Transitions Survey, which was launched on the new Transitions website in July in order to ensure that MDA’s policy work reflects the needs of the community.
Of the 1,000 responses tabulated so far, 253 received a diagnosis before age 10 and use mobility equipment full time. Within that group:
As Kennedy and the panelists pointed out, these figures represent a tremendous waste of human potential. Several conference participants said they knew of cases where people with advanced degrees were living in nursing homes, at a cost to the state of $75,000 a year or more, because they would lose essential benefits if they went to work.
“The current system is not designed and directed toward helping someone living with a severe physical disability, but without a mental disability, to live independently,” said attorney Aaron Bates.
The main disincentive to work identified by the panelists are Medicaid rules that allow a person to earn no more than $24,000 a year before losing such benefits as a paid caregiver. Several panelists described taking extreme measures, including refusing higher-paying jobs, in order to keep their income and assets low enough to avoid losing services.
“I cannot have a home or a car or I will lose benefits,” Angela Wrigglesworth said. She added that she goes through a great deal of anxiety every year when her financial situation is reviewed by the state because she fears she will be declared ineligible for benefits and will have to go into a nursing home.
“That reality frightens me beyond words,” she said.
Although the barriers to education, employment and independent living described by the speakers are formidable, some of the panelists identified state programs that are successfully encouraging people with disabilities to work. These programs could serve as models for other states and the federal government.
In Maryland, for example, the state enacted several policies under former Governor Ehrlich that enable people with disabilities to work without losing benefits, including allowing them to buy into the state Medicaid program if they earn too much to otherwise qualify.
In Florida, Aaron Bates was instrumental in achieving passage of the Florida Personal Care Attendant Program, a landmark law that allows employed people with severe physical disabilities to earn up to $100,000 a year without losing the benefit of a paid caregiver.
MDA is conducting a state-by-state analysis of current programs and policies, such as those in Maryland and Florida, that are designed to help people with disabilities become educated and employed while still allowing them to keep essential benefits. When complete, results of the analysis will be posed on the Transitions website.
In addition, MDA advocates will be meeting with federal government officials in the coming weeks to identify ways in which current resources can be redirected more efficiently to enable people with disabilities to go to school and work, and live independently without losing benefits.
“If we could just make some modifications to the current system, we could make a huge difference in the lives of people with disabilities,” Vance Taylor said. “It’s not a pie-in-the sky notion. Changes could be made under the current fiscal restraints.”