Sep 06, 2011 10 Share

Transition Undefined


Illustration of graduation cap and diploma.
iStockphoto

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.

 


 



Comment Options

E (not verified)

Autism after 16

Brutal prognosis. I'm a single father of an autistic boy who needs a lot of attention. I have almost no support from his mother & my family just doesn't ever help. Maintaining & building relationships is impossible. When I read about allocating funds I wish I could just stay current on my bills today. Hard to make it through today let alone see 3 months a head, & seeing 3 years ahead isn't possible. I would buy myself some shoes if I had extra $ first pair in 2 years.A least you don't have that shape your own reality garbage here, I mean since when did that work? If it does well ...  get on down to a childrens cancer center & get those realities ship shape! Amazing how those statements are so easily dispelled :)But I am worried. I'm worried that I must make every decision alone. I know better than to think I'll be able to make all the right ones. I'm only human. I feel bad that I'm not perfect, like a I keep decent home with love, food, & other life nessessities are met, & I keep things pretty clean & I don't lose my temper too often, all that still isn't enough.Or he could never leave home & I could be forever lonely, poor, hopeless, & over educated. I love him but at some point I'd like to have some of my life back, & he would like to get into the world too as he has needs that are different than mine & I can't fill them all being just one person.

Anonymous

Barriers to adults services

I'm currently doing my doctoral dissertation on what are the barriers to getting adult services for people with autism (Univeristy of Southern California). It's been an eye opening experience to say the least. I think your roadmaps project state by state is an awesome idea. I look forward to sharing it with my network of friends, parents, and fellow professionals. Keep up the great work!

Resources

We are in the process of creating "Roadmaps" for each state in the hope of giving families a place to start in traveling from Transition to adulthood. We hope to have these published in the next few weeks. Please watch our homepage for updates.

Anonymous

Roadmap

I am interested in learning more about the "Roadmap" format. Where can I find some examples? Thanks!

Roadmap

You can access all of our state Roadmaps from our homepage, on the left-hand side. Just click on your state to see specifics or on the Intro link to learn more in general.

Anonymous

re: your article

I just read your article and I am exactly on the same page as you, my son is in the process of transitioningand your article says it all. As much research that I am doing regarding having a place for these children in society besides janitorial or other jobs in that nature, their are no specifics, do you know what is being done in this country with our system  to have Autistic evolving adults have a place in society and be able to function so they have a quality of life. Re, education, companionship, employment,etc besides depending on SSI.Is any group working on this or with our government, I would like to join an organization to help pave the path for these childrens future, and have not been able to find a groupin long island, ny working on this issue specifically.Would you happen to know what path to put me on. Something needs to be done and this issue needs to be addressed, now rather then later, I hear that their are different organizations out their but not exact specifics all the information is global and vague saying not much of anything. Please let me know if you have any source of connections that are involved in this with our government.I appreciate any help you can give me.Thank youDebbie Levine

Anonymous

Transition into middle school

Hi.  I am a speech therapist who has worked in schools, clinics, and I also have my own practice.  Some questions and suggestions for you;  Have you discussed this with the IEP team at school?  Remember that you are his advocate and you control what his IEP is going to address.  Always go with your inner feelings; you know better than anyone what works for your child.  I would also ask your son how he feels about school, friends etc.  Does he have good peer models, does he have friends?  Are the classes overwhelming? Sometimes their view of a friend is a person that says, "Hi" to them. I would definitely seek any outside groups for him that fit his strengths and interests and if there are any social thinking classess for him to join.  Life skills is good, but they need further training in learning how to use their cognitive thinking about other people, how they might see your son, and how behaviors can affect how others feel about him.  By having the ability to become aware and understand how the social world works, he will have all the life skills he needs. If he graduates with an IEP diploma, it's OK.  He can still be the best at what he is and can continue to achieve his greatness in life.I hope this helps.  Please let me know if I can be of any help or support for you.

Anonymous

Transitioning from elementery into middle school

I am so unsure of what class to place my son into for entering Middle School. He is in the Life Skills class and I heard he will not be able to get a normal diploma and only graduate with an IEP Diploma. I feel like he's not being challenged and don't know if the other classroom offered is right for him either (more students, some more typical teens, regular grade level work, etc.)  UGH I am so stressed!  

Anonymous

Agree!

I am also a social worker doing the same thing. The families and individuals find the service invaluable. Transition is a scary time for many. Being able to smooth out the process is a great opportunity.

Anonymous

transition

I am a social worker who is currently assisting young adults 18-21 and their families in making the transition from the school system to adult services. This may be day services through the State, education, or specifically employment. It is both an exciting and at the same time frustration with a system that finds it difficult to place the individual with Autism in a system that defines it self often by intellectual and physical disability. The actions of the individual with Autism at times are preceived as behaviors that are problamatic rather than attempts to communicate or parts of Autism itself. I can only hope that programs that are evolving so that young adults will have their post school needs are met.