tran·si·tion (n.) movement, passage, or change from one position, state, stage, subject, concept, etc., to another; change
A simple definition, but as students with Autism Spectrum Disorder reach adolescence and enter the Transition phase of their education, there is one very important word in this definition that is often overlooked: "To". To what are they transitioning? The transition destination isn’t as simple as a single pinpoint on a map. A quick internet search on transition for students with intellectual and developmental disabilities will yield a plethora of destinations:
- To post secondary education
- To employment
- To independent living
- To service eligibility and away from service entitlement
Internet searching also leads to an overwhelming amount of information that changes daily, further complicating the definition of To. What are the best “go to” resources? How does one best determine the efficacy of various programs and service providers? It’s crucial to learn to weed through the emotional and provocative marketing speak and analyzing outcomes and results.
Preparation is fundamental to any plan, transition or otherwise. Common sense tells us you can’t plan a journey unless you have a destination. How can parents and care providers best define destination when student developments are unpredictable over the next three months, much less the next three years? The process of transition planning is often a paradigm shift for parents and students alike. Suddenly all the previous years’ energy and hope devoted to achieving academic gains and showing improved test scores now must focus on what happens when the testing is no longer a sufficient predictor of milestones. It’s time to start finding answers to those questions that have been lurking around the corner and have been somewhat difficult to ask, much less answer. Will he be able to live independently? Will she go to college? How long will this financial drain last? Will she be able to earn a living? What support services are available as he enters adulthood? In many ways, it’s like receiving a diagnosis all over again. Although the diagnosis may remain the same, the game plan changes significantly.
All parents are faced with some transition dilemma or another. Parents often lull themselves into thinking that once their child goes off to college, their work is done. However, as has often been said: The bigger the children, the bigger the problems. Families everywhere are frequently faced with an unexpected 5-Year-Plan for college. Not to mention the boomerang effect of children leaving the nest, only to return because of an unfortunate economic swing. It’s a safe assumption that every parent faces their children’s transition years with some trepidation, regardless of the children’s capabilities or limitations. But when the financial demands will likely extend beyond the immediate future, such as in the case of the student with ASD , it is essential to make a plan for the allocation of funds. This allocation plan may well need to cover a lifetime, not just a life stage. Being prepared is the best line of defense .
Transition to Postsecondary Education
As Transition planning begins, it’s not always evident what postsecondary education might look like, or if it’s even an option. Students with developmental delays often experience a developmental pop in their mid-to-late teens, making the planning process all the more difficult. The good news is that choices for postsecondary education are increasingly available to the student with ASD. The challenge becomes assessing the quality and effectiveness of offerings for this population as a whole, not to mention a particular individual with a unique learning profile.
In it’s report, "Postsecondary Education Options for Students with Intellectual Disabilities," the Institute for Community Inclusion identifies and describes several types of Postsecondary Education models for students with intellectual disabilities. Some models are segregated, while other seek to foster partial or complete inclusion with nondisabled peers. While understanding the models is one thing, trying to locate them is another. You may, after much link hopping and Googling, find a model program that seems to be an ideal match to what you're seeking. The problem then becomes that many of these programs have extremely limited enrollment capabilities and long, long waiting lists. Why, if the demand is so high for such programming, is it not more readily available? And if you do find a program that seems to be a good fit and has openings, how do you assess whether the service provider is engaging in best practice and not simply telling families what they want to hear? It’s crucial that families learn both to ask the right questions and evaluate the answers.
Transition to Employment
In order to be self-sufficient, one must have access to income. One of the main intents of the transition plan is to eventually obtain and maintain employment. In the 2009 report,"The Current State of Services for Adults with Autism," author Peter Gerhardt notes that, "Outcome studies of adults with ASD document that, independent of current ability levels, the vast majority of adults with ASD are either unemployed or underemployed." But a job alone may not be enough. Is the individual appropriately employed for his or her skill level? Are the hours worked per week determined by the employee’s capacity or the employer’s comfort level? While being offered a job is often cause for celebration, opportunity only truly exists when the job is a good match and appropriate supports are in place. As Gerhardt also points out in the report, “…(T)he potential of individuals with ASD to become employed and engaged adults is limited more by the failure of the systems charged with supporting them than by the challenges associated with being on the spectrum."
As the ASD adult transitions out of public education and into adult services, the delivery of services becomes an entirely new terrain. Gone are the days of entitlement to service. The onus lies with the individual and the family to establish eligibility for service and find service providers. The availability of service providers offering employment support varies by state. Some large corporations are taking the initiative in recruiting individuals with special needs, and receive tax incentives for doing so. Of course tax law changes from year to year, so what’s available today, may not be tomorrow.
As with postsecondary education options, there are many types of employment models with varying degrees of support. Options range from segregated employment—typically referred to as a sheltered workshop—to constant or intermittent oversight by a job coach, to working fully independently alongside nondisabled peers. Understanding options will help immeasurably in drafting transition plans and working with school and vocational personnel.
Transition to Independent Living
In addition to thinking about postsecondary education and employment options, families of teens and young adults with ASD must consider future living arrangements. How, where, and with whom is the young adult with ASD going to live? Many adults with autism continue to live with family members. Are you, your child’s siblings or extended family members adequately prepared for such an arrangement? If living at home isn’t in the best interest of either the adult with ASD or the family, then examining housing options are a must. In addition, it’s crucial to include the development of independent living skills in transition planning. The focus of this skill development should be extremely individualized.
Transition to Eligibility for Adult Support Services
Parents and service providers of the ASD student are all too familiar with the right to a free and appropriate education. As a student exits public education and transitions to the next life stage, what once was a question of entitlement becomes a question of eligibility. Under the Individuals with Disabilities Education Act (IDEA), students with disabilities are entitled to services until they either graduate with a regular diploma or age out of the system at age 21. Once the young adult with ASD leaves the public school system, the same right to services doesn’t exist. Adult services are accessed by being found eligible for benefits. Eligibilty varies from program to program and from state to state. Simply having an autism spectrum diagnosis does not guarantee adult services. Actions taken during the transition planning stages can impact availability of supports when school days are over.
It’s All About the IEP
According to attorney Wayne Steedman of Callegary and Steedman, PA, it is critical that parents pay very close attention to the transition plan in their child’s Individualized Education Plan (IEP). Transition goals and objectives are required by law to have the same format and measurability as academic goals. Formal assessments must be conducted to determine an appropriate transition plan. Parents need to carefully assess the IEP to ensure that these requirements are met. And once IEP transition goals have been written, appropriate services must be added to achieve them. Schools may utilize outside service providers if necessary, and the school transition specialist can help arrange for a state Vocational Rehabilitation (VR) counselor attend IEP meetings.
Amy Alvord, Transition Specialist at Ivymount School in Maryland, notes that the biggest mistake parents make during the transition years is twofold: Planning isn’t started early enough, and generalizing what the student is learning at school isn’t done at home or in the community. It is crucial for students to learn self-management skills if they are to be successful at living independently. It is also important for the student to develop what Alvord refers to as “self -disclosure.” This means that the student is able answer questions such as “What’s hard for you?” and “What helps you?” in a clear manner that can be generalized in the community.
Parents and students must be active participants in transition planning, and begin the process as early as possible. While IEP meetings might seem like old hat, families must refocus energies to make these legal documents meaningful. There’s much more to exiting the school system than planning a graduation party. Transition for a student with ASD might be better defined as an evolutionary process:
ev·o·lu·tion (n.) A gradual process in which something changes into a different and usually more complex or better form.