From the AANE Journal - Issue 11
(Published by the Asperger's Association of New England)
By Todd Helmus, Kelley Challen, M.Ed., CAS, Jason McCormick, Psy.D. and Kate DellaPorta, Psy.D.
Generally speaking, transition is defined as the movement from one set of activities to another, but for the families of adolescents and young adults with special needs it has a more specific meaning. In this context, “transition” refers to the complex process of moving from or one life stage to another: from adolescence to adulthood.
For most teens, this means moving beyond high school into some form of post-secondary education or training, the workplace, and a fully or partially independent adult life.
Transition encompasses the teen cultivating self-awareness, and developing a vision and goals for his or her future, while the teen’s family, educators, and sometimes other professionals guide and support the teen’s growth into adult independence.
This major shift from high school into college/vocational training, employment, and independent living is challenging for every student, but even more so for those with disabilities. It can be an exciting process, but also a daunting and emotionally demanding experience for everyone involved. However, careful planning and preparation can mitigate the stress.
Furthermore, research indicates that students who have actively participated in defining their own vision of their future, and planning and taking action to achieve it, will experience greater success and satisfaction in their lives as adults.
The State and Federal Laws
The law on transition is clear. IDEA (the federal Individuals with Disabilities Education Act) reads, “the term ‘transition services’ means a coordinated set of activities for a child with a disability (beginning at age 16) that:
· "Is designed to be within a results-oriented process focused on improving the academic and functional achievement of the child with a disability, to facilitate the child’s movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment); continuing and adult education, adult services, independent living, or community participation;
· Is based on the individual child’s needs, taking into account the child’s strengths, preferences, and interests; and,
· Includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, if appropriate, acquisition of daily living skills and functional vocational evaluation.” 34 CFR 300.43 (a)] [20 U.S.C. 1401(34)]
The Massachusetts special education statute (P.L. 108-446, Sec 603 (34) goes further, mandating that:
“…no later than the first IEP developed when the eligible student is 14, the Team considers the student’s need for transition services and documents this discussion. The IEPs of students should include a post school vision statement as well as identify the transition services necessary to support the vision.”
The statute continues:
“If appropriate, the IEP includes a statement of needed transition services. The school district understands that it must maintain documentation of a full discussion of the student's transition needs, whether or not such discussion identifies needed transition services for the IEP. Such documentation must be reviewed and updated annually thereafter.
Students must be invited to all educational meetings and allowed to participate actively when transition planning is discussed.”
In short, both state and federal law require that transition planning be a fully participatory process, taking into consideration not only the student’s needs or limitations, but also his or her interests, strengths, and aspirations. Ideally, the transition process will be continuous and constantly evolving, recognizing that the student will be a very different person at its end, having acquired new skills and, likely as not, different interests.
At every step along the way, the educational team (parents plus educators) should be asking: “Where are you now, where do you want to go, and how can we help to get you there, safely and successfully?”
The Genesis of NESCA’s Transition Model
NESCA (Neuropsychology & Education Services for Children & Adolescents), is a private pediatric neuropsychology group practice in Newton, Massachusetts. NESCA staff embraced this student-centered, process-oriented approach early on, becoming pioneers in the development of coordinated transition assessment, planning and case management services.
We believe that our transition protocol is a model for the identification of needs, and for the targeted, effective delivery of services. We provide an experienced team of clinical specialists working collaboratively over time with the teen, his or her family, the school district, and other professionals.
NESCA’s original model was developed by Transition Specialist Sandy Storer, LICSW, who joined the NESCA staff in 2010. For twelve years previously, Storer had been School Social Worker at the Clarke Middle School in Lexington, MA, where she specialized in helping students with autism spectrum and related disorders. Storer had also spent a semester as a disability specialist at Northeastern University in Boston, where she saw first-hand that some students fared quite well, while others struggled.
It became her mission to find the key to improving the outcomes for students transitioning to adulthood. “I asked what could have made the difference for those who struggled. I wanted to reverse engineer the process,” she says.
In 2008-2009, Storer completed a LEND (Leadership Education in Neurodevelopmental and Related Disabilities) Fellowship at the Eunice Kennedy Shriver Center of the University of Massachusetts Medical School. She conducted an in-depth investigation of transitional issues impacting students with Asperger Syndrome (AS). She determined that the most successful transitions result when:
• There is full participation of a student’s educational team, and coordinated case management over time,
• The process is guided by a person-centered, individualized plan;
• There is a set of services maintained throughout high school, and in some cases beyond high school completion.
This seems obvious in retrospect. At the time, however, most people viewed transition not as a process but as an event: high school graduation. The law notwithstanding, too little attention was paid, and often too late, to equipping special-needs students with the life skills they would need in order to cope with the increasingly complex demands—personal, social and academic—of life beyond high school: continuing education, employment, and everyday independent living.
The climate changed with the landmark 2008 Dracut case, in which a federal district court, upholding a decision by the Massachusetts Board of Special Education Appeals, found that a student had been denied the free and appropriate public education (FAPE) to which he was legally entitled. The court ruled that the school district “failed to provide training ‘reasonably calculated to enable Student to develop vocation skills . . . after High School.’”
The Court found that the services provided had been inadequate because they did not expose the student to the “full range of situations involving interaction with the public and peers, with the result that Student did not experience all of the communication and social skills typically found with a job in the community.”
The district was ordered to provide significant compensatory educational services even though the student had already graduated from high school. (Usually special education services end when a student graduates, but in this case the court ordered the compensatory services because the student had not received them during the period in which he was eligible.)
Sandy Storer left NESCA early in 2013, leaving in place a well-established protocol and highly-experienced team. Because of her long tenure in a public school setting, she understood that everyone benefits when students, families, and outside professionals work closely with educators, and that such team work is the most effective and efficient way to design and deliver transition services.
Some of her keys to success:
· Start early;
· Conduct realistic, in-depth assessments;
· Build a solid team;
· Provide follow-up support.
When to begin formal transition planning is a highly personal decision for each family, and there is no age too early or too late. In fact, says Kelley Challen, M.Ed., Director of Transition Services at NESCA, “Every family has already started in some way. Each time a skill is taught to increase a child’s independence—sleeping through the night, holding a bottle, choosing one’s own clothes—it’s a part of the process.” Learning to cross the street, attend a sleep-over, buy one’s own ice cream cone, or make a phone call are all early steps toward transition.
Massachusetts law mandates that schools begin to consider transition goals at age 14, but there are many practical advantages to beginning to address them formally even earlier. As Challen notes, “It is important to remember that learning often takes longer for people with disabilities. Explicit instruction may be required to teach them skills that other individuals learn on their own. It is important to prioritize goals and skills rather than trying to tackle everything at once, allowing plenty of time for skills to be acquired, and for the teaching to be repeated in multiple settings and contexts.”
The more skills a student can truly master essential skills before making the transition to adulthood, the easier it will be for everyone. In whatever novel situations follow high school, the more automatic a skill is, the more easily it will transfer to a new routine or a new setting.
Getting an early start allows a student and the student’s family to enter into conversation with the rest of the educational team fully prepared and with a better-defined vision to guide their work together. It also enables the family to incorporate the long-term vision into their lifestyle and parenting decisions (since some skills are learned not at school, but at home or out in the broader community).
Assessment, Teamwork and Case Management
Assessment is the essential first step in the planning process. Assessment is an ongoing process that is necessarily highly individualized, because it must consider each adolescent’s personal strengths, challenges, the nature and complexity of their aspirations, and the pace at which they learn. The skills necessary for living a fulfilling and independent life go well beyond academic success in high school; so a meaningful assessment must be comprehensive, and look at many other factors and areas.
An assessment must consider not just intellectual potential, but also functional life skills: the ability to interact socially, make change, ask directions, use public transportation, care for one’s health, maintain hygiene, and stay safe.
At NESCA, an assessment generally begins with a thorough document review, and an intake interview with both the student and his/her parents. A clinician will determine whether or not additional testing is required and, if so, what kind. In many cases, neuropsychological evaluation will serve as a starting point from which the need for additional formal and/or informal assessment will be identified.
There might also be a recommendation for community-based observation, in the course of which someone would “shadow” the student as he or she is asked, for example, to travel to a college campus using public transportation, locate the admissions office, and request information.
NESCA clinicians perform neuropsychological testing and community-based assessments as needed, provide parent consultation and training and, in many instances, individual counseling for students. They then work closely with the student and the educational team to develop the vision statement and personal goals to be identified on the Massachusetts Transition Planning Form (TPF), and recommend for inclusion in the student’s IEP the services necessary to achieve them.
The clinicians involved in these assessments will then support the family as it seeks to have these recommendations included in the student’s IEP, and periodically monitor progress as they are implemented by the school and other professionals.
To that end, NESCA personnel routinely observe students in their classrooms and in the community, and participate in meetings of the educational team.
· When families and professionals help individuals with learning differences to develop new skills, it is important to consider whether the help being provided will translate into dependence on a caregiver or true independence. For example, notice the difference between teaching a morning routine that starts with a parent waking the individual up and prompting several times throughout the morning, vs. teaching a routine that starts with an alarm clock and is followed up by additional digital or visual prompts from the environment.
· When creating IEP accommodations, it is important to consider how supports will be faded out if they cannot be translated into post-secondary and employment settings. If there is no way to fade an accommodation or teach an individual to self-accommodate, than other supports should be considered.
· Transition planning should be informed by assessment data, and assessment should be ongoing, individualized, and include community-based observation and testing when possible. Good, individualized assessment allows for identification of strengths and challenges that may otherwise be unseen or unknown.
For students who plan to take part in post-secondary education, a critical component of NESCA's assessment process is taking those students to a college campus and observing whether they are able to independently complete tasks like navigating a campus map, finding the disability support office, and appropriately ordering and paying for food in the campus coffee shop.
· Transition planning starts with the individual, and should be vision-driven and person-centered. Sometimes, adults assume that the individual is too young to have thought about what his or her future will look like. However, by asking good questions and taking into account the strengths and interests of the individual, it is possible to begin forming a vision statement. For example, many teens have strong opinions about their living situation as adults. Some would love to live in their parents’ basement, while others want to live on their own in another state.
In each case, there are ways to create goals that will support skill development and take the individual's current vision into account. For the individual interested in living at home, it may be a good time to start including them in the budgeting, bill paying, and even working to support the household. And as the individual changes and develops additional self-awareness, the transition-related IEP goals should also change.
· The student and the parent are part of the IEP team. Transition planning and skill development is not just something that happens at school; it is important for the family to share ownership of the process. Therefore, at each team meeting, the student and parent should walk away with homework, and be accountable for working on measurable goals, just as the educators are.
· Self-awareness is a critical component of a successful transition to adult life. Self-awareness is not necessarily knowing that you have a specific diagnostic label (although that will be important at some points in time), but it is knowing what your strengths and challenges are. It also includes understanding your needs based on your challenges.
Self-awareness is essential to being able to advocate appropriately for oneself. That is, because individuals with learning differences are in the minority, they need to be able to explain to members of the majority (a professor, a roommate, a boss) what their needs are, and what supports will help to get those needs met. Teaching self-awareness and self-advocacy should begin as early as possible.
Kelley Challen, M.Ed., CAS is Director of Transition Services at NESCA. She has been facilitating group programs for children and adolescents with Autism Spectrum Disorders since 2004. She received her Master’s Degree and Certificate of Advanced Graduate Study in Risk and Prevention Counseling from the Harvard Graduate School of Education. Before joining NESCA this year, she was Program Director for the Northeast Arc’s Spotlight Program, where she oversaw drama-based programs for youth ages 6-22 with Social-Cognitive Deficits. Challen also spent four years at Massachusetts General Hospital’s Aspire Program (formerly called YouthCare) where she founded an array of life and career skills programs for teens and young adults with Asperger Syndrome and related challenges.
For a dozen years, Jason McCormick, Psy.D. has specialized in working with adolescents and young adults on the autism spectrum, and has developed a particular interest and expertise in the challenges involved in the transition from high school to college. As part of his work with older students, Dr. McCormick became very familiar with the documentation requirements of standardized testing boards, including those overseeing the SAT, GMAT, LSAT and GRE. He also holds an advisory and consultative role with a prestigious local university, assisting in the provision of appropriate academic accommodations to their students with learning disabilities and other issues complicating their education.
Kate DellaPorta, Psy.D. trained at the Center for Autism Spectrum Disorders of Children’s National Medical Center near Washington, D.C., where she was a member of a multi-disciplinary team conducting comprehensive diagnostic evaluations of children aged 5 -21 suspected of having autism spectrum disorders. She also completed a two-year post-doctoral fellowship in pediatric neuropsychology at NESCA. She provides cognitive-behavioral therapy (CBT) to adolescents, and performs the transition team’s community-based observations and functional life skills assessments.