Thirty-six hours after Marlyn Wells gave birth to Anna, she learned her daughter had Down syndrome. Just a few years later, the family started talking about Anna's career. In pre-school, Anna had said she wanted to be a "fire truck" when she grew up.
But 20 years later, the family hit roadblocks trying to help find paid work for Anna. One program responsible for helping Anna find a job only kicks in six months before students like her graduate from high school. A different vocational agency was required to contact her once a month, "which is not adequate," Wells said. "We were not told how the funding part of that particular service works, so it left us out of being able to make an informed choice as to which service provider might be the most appropriate one for Anna's needs."
According to a new Government Accountability Office report released late Tuesday, Anna's struggles are far from the exception. Students with disabilities, like Anna, face massive challenges using federal services that are supposed to help them transition from high school and into college or the workforce, the report found. Parents in five states told GAO researchers about struggles faced by their families trying to find services that help their children move on with their lives after school.
"We didn't understand how these agencies were being monitored for success," Wells said. "I'm pretty savvy about this stuff," said Wells, an advocate who helps other special-needs families at the Exceptional Children's Assistance Center. "That information was really vague."
Problems stem from having four uncoordinated federal agencies -- the departments of Education, Health and Human Services, and Labor, as well as the Social Security Administration -- handling related initiatives with little communication. "Their efforts represent a patchwork approach and there is no single, formal, government-wide strategy for coordinating transition services for students with disabilities," the GAO wrote. And the agencies don't evaluate whether their programs work.
Further, special education students have individualized education programs that guarantee them plans and aides as mandated by the Individuals with Disabilities Education Act. That very specific and streamlined program ends when students leave high school, providing a breaking point from the familiar to the alphabet soup of transition programs under the four agencies. Parents reported having either too little information or too much, leaving them bewildered.
In 2010, Rep. George Miller (D-Calif.) asked GAO to research the programs. Members of his staff, rewriting the No Child Left Behind law, noticed discrepancies in school outcomes between special education students and their peers. But the gaps continue long after school. According to the report, the employment rate for young adults from ages 20 to 24 with disabilities was less than half that of their peers in February 2012.
After seeing the results, Miller and Sen. Tom Harkin (D-Iowa), who both have leadership positions on congressional education committees, decided to write a letter to the four agencies that provide transition services, saying they are "hopeful that your combined efforts and improved coordination will result in better outcomes" for the 2.2 million students with disabilities eligible for such services. They're asking for help in addressing the problems the GAO report highlights, and for potential solutions that could come from Congress.
The report comes as lawmakers and officials are talking about a new way to make sure special education students get the schooling they deserve. At a recent leadership conference for the Individuals with Disabilities Education Act, Melody Musgrove, director of the U.S Education Department's special education initiatives, said she wants to make services focus on the needs of students rather than the law's technical requirements, according to Education Week. While compliance has been key, the test scores of special ed students haven't improved. So the department decided in March that it would cancel expensive compliance visits to 16 states next school year.
Transitioning out of high school is part of that picture. The current compliance model looks at what students want to do after high school, but not what actually happens. A September 2011 report from the National Center for Special Education Research found that slightly over half of teenagers with disabilities pursued post-secondary education, compared with 62 percent of their peers.
Laura Kaloi, who directs public policy for the National Center for Learning Disabilities, said transition planning can help get kids with disabilities on an equal footing with their peers. "If these services are not all aligned, they can fall through the cracks," Kaloi said. "It takes a pretty savvy parent to know the key people who should be in the planning meetings that occur."
And Wells, who described "hammering away" for the services she knew her daughter was entitled to, was ultimately savvy. Anna, a sixth-year high school student in North Carolina, has a job. After "we were finally able to push the agencies to help her get paid employment," Wells said, Anna is preparing to start work at a food services job at a local university. "She's very excited about the potential of being an adult," Wells said. "The need to be part of that community is important for her, and should help us all see the value in what these young adults are working for."