Kathy Eckert-Mason doesn鈥檛 think she鈥檚 an unrealistic mom.
Yet as she worked with school officials on a plan that would provide a smooth path from high school to college for her son, Rick, she wondered if teachers saw her that way.
Rick Mason, now 20, has autism. He had always been included in regular classes, but with an aide providing support to him and other classmates with special needs. His mother wanted his high school to help him attain the self-sufficiency to handle classes at an out-of-state university.
His teachers, she believes, saw his prospects as less expansive. They suggested he could attend community college in their hometown of Corvallis, Ore., while living at home.
For students with disabilities, planning for life after high school is regulated by the Individuals with Disabilities Education Act, just like other aspects of special education. But despite tweaks to the federal law over its 34-year history鈥攊ncluding a relatively recent change that requires schools to give students a summary of their strengths, skills, and needs when they graduate鈥攄eveloping a solid transition plan remains one of the most challenging parts of the IDEA to carry out.
Ms. Eckert-Mason said that in her situation, 鈥淚 walked away kind of disillusioned by it all.鈥
Through her own professional contacts as a vocational-rehabilitation counselor for the state of Oregon, Ms. Eckert-Mason arranged job-shadowing opportunities for her son, assisted him during college visits, and now offers support as he attends the University of Utah, in Salt Lake City, where he is a sophomore majoring in health education.
Ms. Eckert-Mason said she thinks high school administrators 鈥渉ave this one mold, and this is what you do. Sometimes, the special education staff gets stuck in that.鈥
The U.S. Department of Education is funding an extensive study of students who were ages 13 to 16 in 2000, as they moved into adult roles. In 2004, researchers released a report that focused specifically on students with disabilities. Among the findings:
鈥 School staff members reported that about 70 percent of students with transition plans participated actively by providing input into the plans. Twelve percent of those students took a 鈥渓eadership role.鈥
鈥 About 6 percent of secondary school students with disabilities reportedly did not attend their individualized-education-program meetings that dealt with transition planning, and about 15 percent had parents who did not attend.
鈥 Overall, about half of students with disabilities planned to go to college, but that intention varied from 10 percent of students with mental retardation to more than 70 percent of students with visual impairments.
鈥 Students from upper-income households were more likely than those from lower-income families to plan on attending a college or university, and to have schools make contacts with colleges and universities on their behalf.
鈥 Low-income and African-American students were more likely to have vocational training, placement, or support identified as post-school needs.
SOURCE: 鈥淭ransition Planning for Students with Disabilities: A Special Topic Report of Findings From the National Longitudinal Transition Study-2鈥
As the IDEA has moved from mainly ensuring compliance by school officials to promoting positive outcomes for students with disabilities, lawmakers have added rules that require schools and students to look to the future.
For example, the law says postsecondary goals should be a part of students鈥 individualized education programs, by at least the time they turn 16, along with measurable steps to achieve those goals. Students are to be involved in creating their own IEPs as much as possible, and community organizations should be part of the planning if a student will need continuing help after leaving school. The IDEA allows students to remain in school until at least age 21.
There is evidence that the changes have created better postsecondary outcomes for students with disabilities. A federally financed long-term study of such students, released in 2004, showed that almost 90 percent had started transition planning as outlined by the IDEA. School personnel reported that about three-quarters of students with disabilities were following a course of study that would help them achieve their goals.
But the very nature of the IDEA requires students, parents, and teachers to make a significant mental shift as students near the end of their time in high school. When students are covered by the IDEA, they can be relatively passive recipients of federally mandated services. Students will not lose out on services for not showing up to an IEP meeting, for example, even if they鈥檙e invited to come.
But all that changes when high school ends. Students have to actively pursue the accommodations they need for success at work and in higher education, and without the ability to advocate for themselves, pushing for those accommodations could be a struggle. Teachers and parents, who have spent years supporting a student, also have to learn to take a hands-off role, particularly if a student plans to go to college.
鈥淐olleges and universities don鈥檛 want to hear from Mommy,鈥 said Stan Shaw, a professor at the University of Connecticut, in Storrs, and the co-director of the university鈥檚 Center on Postsecondary Education and Disability.
For precollegiate students with disabilities, transition planning is governed by the federal Individuals With Disabilities Education Act. Among the provisions:
鈥 Individualized education programs are to include 鈥渁ppropriate measurable postsecondary goals based upon age-appropriate transition assessments related to training, education, employment, and, where appropriate, independent living skills.鈥
鈥 Transition planning is to begin no later than the first individualized education program in effect when the student turns 16.
鈥 The school must invite the student to participate in any IEP meeting that includes discussion of postsecondary goals.
鈥 Districts must complete a 鈥渟ummary of performance鈥 for a student leaving school that 鈥渋ncludes recommendations on how to assist the child in meeting the child鈥檚 postsecondary goals.鈥 The summary should include 鈥渁cademic achievement and functional performance,鈥 but otherwise the law does not make requirements on the states.
NOTES: The IDEA does not apply to students who are attending college or other postsecondary institutions. Those institutions are governed by Section 504 of the Rehabilitation Act of 1973 and the Americans with Disabilities Act. Generally, those laws do not require institutions to modify their curricula, though they are required to offer accommodations, which could include extended testing time, sign-language interpreters, or a reduced course load.
Students are also not required to inform their postsecondary schools of their disabilities, and colleges are not required to assess students for their special needs.
SOURCE: U.S. Department of Education
Another complication is that the IEP鈥攚hich is the key documentation of a disability for a precollegiate student鈥攈as no sway over postsecondary institutions. Instead, colleges and universities often require an independent evaluation of a disability, and the IDEA has made clear that local school districts are not required to provide testing for that purpose, said Larry J. Kortering, a co-principal investigator with the National Secondary Transition Technical Assistance Center and a professor of special education at Appalachian State University in Boone, N.C.
A 2004 addition to the IDEA requires that students receive a 鈥渟ummary of performance鈥 from their school that outlines the students鈥 strengths, weaknesses, and need for accommodations. Those who backed the creation of such a document said the information would help students be active advocates on their own behalf. At its most useful, the document could also serve as the proof of a student鈥檚 need to receive accommodations from a college or university, if the postsecondary institution chose to accept it.
But districts have not used the potentially powerful document to its fullest, said Mr. Shaw, the University of Connecticut professor.
Because the IDEA and its accompanying regulations do not clearly define what has to be in a summary of performance, Mr. Shaw organized a task force of representatives of national professional organizations and disability advocacy groups to develop a model template. The template includes a clear identification of a student鈥檚 disability, a list of postsecondary goals, a description of the student鈥檚 current performance along with any accommodations or modifications to the curriculum used by the school, and a set of recommendations for how to achieve success after leaving high school. Depending on the student, the recommendations could be for adaptive devices, assistive services, or compensatory strategies.
鈥淭he attempt was to make something useful and practical and not difficult to fill out,鈥 Mr. Shaw said. However, some states have responded to the requirement 鈥渨ith something that can be filled out on a postcard.鈥
Mr. Shaw and his colleagues at the university鈥檚 center on postsecondary education and disability tracked the adoption of the model template in states. Of 43 states surveyed, 90 percent had created state forms that included all the elements required by the federal special education law. Nine states had adopted the model template directly.
Seventeen states required attaching test scores to the document, which is not recommended under the federal law, but is included in the model template because colleges typically want such information. But only 12 states require students to complete any part of the document, which Mr. Shaw said is an important element.
鈥淭he law, unfortunately, was not very prescriptive. But everything we know says that self-determination is critical for these students,鈥 he said.
Even without a summary of performance, some problems could be improved by better communication between school districts and colleges, experts say. Unfortunately, the two aren鈥檛 always used to talking to each other, said Mr. Kortering, with the national transition center.
鈥淗igher ed has got to quit being this ivory tower where we say we have all the answers. We鈥檝e got to say, 鈥榃hat do we need to do to help these kids be successful?鈥欌 he said. By the same token, he added, 鈥減ublic school folks have got to do a better job of talking.鈥
Transition planning doesn鈥檛 pose a challenge just for the college-bound. For students who will rely on community support after they end school, the depth of transition planning can end up being dependent on where they live.
Elsie May Gladding, a retired minister with the United Methodist Church, ran into the issue when looking for services for her daughter, Emily Thompson, 20, who has autism.
Ms. Gladding said she was happy with the services available to Emily when the family lived in Frederick, Md., located about 50 miles from Washington and Baltimore. The program she was enrolled in spent half of a school day training students in 鈥渓ife skills,鈥 and Emily, then 18, worked as a volunteer assistant in a medical center for the rest of the day. The transition coordinator for the program was plugged in to the community, and could direct students to the different vocational options available.
The students involved in the program were thriving, Ms. Gladding said. 鈥淲e didn鈥檛 know anybody who was sitting on the couch.鈥
A move two years ago to rural Alton, Va., just north of the North Carolina border, was a shock for her. The community 鈥渉ad nothing of substance for these kids,鈥 she said.
鈥淭he high school worked really hard at trying to put together something that would work, just trying to give her things to keep busy,鈥 Ms. Gladding added. Eventually, the high school modified Emily鈥檚 IEP to include a private school placement that provides job and life-skills training similar to the program Emily attended in Maryland.
鈥淲e鈥檝e been able to receive services, but we had to work very hard for it,鈥 Ms. Gladding said. 鈥淚t鈥檚 totally inconsistent across the state. The local school districts just do what they can.鈥
While the IDEA offered parents of college-bound students a helpful document through the summary of performance, the 2004 re-authorization of the law took away a requirement that schools follow up multiple times with outside community-support agencies.
The U.S. Department of Education, in explaining the change, said dropping that requirement would ease the paperwork burden on schools and allow them to focus on 鈥渁ctive strategic partnerships鈥 with agencies that provide support to people with disabilities. The change also saves districts money, the department said.
Transition planning for students with disabilities continues to be the focus of several initiatives. For example, the National Association of State Directors of Special Education, in Alexandria Va., heads a 鈥渃ommunity of practice鈥 around the issue that links several states that are working to improve their planning for students with disabilities. Ten states, more than a dozen national organizations, students, and federal agencies like the U.S. Departments of Labor and Justice are involved in that effort.
The federal Education Department also funds technical-assistance centers nationwide to help districts on the topic. One of the newest, the Transition Education Network, will provide professional development to districts in Florida. The network, with headquarters at the University of South Florida鈥檚 campus in St. Petersburg, will also work with preservice and current teachers, said Lyman Dukes III, the principal investigator and an associate professor of special education at the university.
Transition 鈥渋s a challenge and it remains a challenge. There are so many pieces of the puzzle that it is very easy to drop one,鈥 Mr. Dukes said.
Parents are also seeking out their own sources of information. Alison Thomas has six sons, two of whom鈥擹ackary, a 17-year-old junior and Christopher, a 16-year-old sophomore鈥攁re in the beginning process of planning for life after high school. Their disabilities include Asperger鈥檚 syndrome.
Ms. Thomas, who lives in Allen, Texas, and is the director of communications for a church, worries that the academic bar has been set too low for her children. She recently attended a transition conference in Austin and came back armed with ideas, including pushing for a student-led IEP process. Through that process, she hopes the school will learn more about her sons鈥 hopes for their lives after they leave high school.
鈥淗ere鈥檚 what I鈥檝e learned: It鈥檚 all about networking,鈥 Ms. Thomas said. 鈥淵ou have to tap every avenue you can possibly identify.鈥