It is difficult to think about the future; when you are just trying to make it through each day. In the early 1990’s when my son, Matthew was first diagnosed with autism and for many years later I consistently pushed any thoughts about his future away. Inevitably, the passage of time and the new realities that accompany it have an unrelenting way of forcing their way into the present. So, eight years ago as my son turned twelve, I literally forced myself to begin thinking about his adulthood.
Where to Begin
It is important to realize that all the educational and support services that your child has received during his or her school years have been funded by a federal mandate. This mandate is a direct result of the Individuals with Disabilities Education Act (IDEA). Unfortunately, this entitlement and the funding that accompanies it terminates when your child’s eligibility for special education ends. That is either when he graduates from high school with a regular diploma or until the child reaches the age of eligibility for a free appropriate education under state law. In most states, ineligibility expires at the end of the school year in which your child turns 21; but be sure to check with your state’s department of education because some states have increased the age limit.
Adult services for individuals with autism are funded under the Medicaid system. Medicaid provides only a fraction of the funding that was allocated to your child under IDEA. So, it is vital that you secure all the educational/vocational and transition services your child is entitled to while they are still in school.
At any time during your child’s schooling but especially as he or she approaches adolescence it is a wise to step back and review your child’s educational program. Remember the “IDEA” clock is ticking. Ask yourself: How does my child learn? How long does it take him to learn a new concept or skill? How functional will the things he is learning today be to him when he graduates? Will it enable him to be employed? Will it help him enjoy life as an active member of his community? Will these skills help him lead as independent a life as possible?
You may be proud that your child can do long division, but if he can’t independently take care of all his own “self-help” needs by the time he graduates what have you really accomplished?
Transition is a process that will span several years and must begin under federal law by the time you child turns sixteen. The general consensus is that it should begin by the age of fourteen.
Transition is not a spectator sport. It is a team sport, and guess who the captain is? Yes, it’s you. If done correctly it will require you and, if possible, your child’s active participation. More than likely you will be the one informing your school district of their transition obligations as per IDEA. Do not be surprised if you will also have to do a lot of the leg work when it comes to finding and securing the necessary resources for this process.
In my son’s case I located, requested and obtained from my school district the services of an outside transition consultant from our local independent living center to help guide me and my son through the process. Over several years, the consultant, I and a school district representative met twice a year to work on the transition component of his Individual Education Plan, (IEP). During these meetings we discussed his educational, prevocational, behavioral, community integration and independent living needs. (note: Remember to request that transition assessments be conducted for your child.) In addition, she helped me navigate the myriad of transition “to do’s,” such as: applying for Social Security/Medicaid benefits, registering for the draft, (No exceptions), registering to vote, getting a non-driver identification, and enrolling in our state’s adult developmental disability and vocational rehabilitation systems. She also advised me to address the issues of guardianship and estate planning and what to look for in adult agency for Matthew. Her knowledge of the adult service system was priceless.
There are well over 500 Independent Living Centers in the United States. In addition, some adult service providers have begun to provide the service. One caveat, if you work with a transition consultant from an adult service provider make sure that they are advocating for the interest of your child, and not as recruiter for their agency’s services.
IDEA and Transition
The reauthorization of IDEA in 2004 modified and strengthened the provisions for transition services. Below is a brief overview of the provisions of the act, IDEA and Transition Services 300.320(b):
Transition services. Beginning not later than the first IEP to be in effect when the child turns 16, or younger if determined appropriate by the IEP Team, and updated annually, thereafter, the IEP must include:
(1) Appropriate measurable postsecondary goals based upon age appropriate transition assessments related to training, education, employment, and, where appropriate, independent living skills and;
(2) The transition services (including courses of study) needed to assist the child in reaching those goals.
The term “transition services” means a coordinated set of activities for a child with a disability that:
- Is designed to be within a results-oriented process, that is 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. [34CFR 300.43 (a)] [20 U.S.C. 1401(34)]
It is essential that the transition section of your child’s IEP includes the three mandated areas of: instruction, community experiences, and employment and post–school living objectives.
Many school programs for individuals with autism, especially those with a large inclusion component will slight basic living skills. Unfortunately, the post-secondary goals in the areas of independent living skills are not specifically required by law. It is up to the child’s team to determine whether IEP goals related to the development of independent living skills are necessary for the child to receive a Free and Appropriate Public Education (FAPE).” (71Fed at 46668)
The required components of your child’s transition plan are described in IDEA 2004. You should make certain that your child’s IEP team adheres to these requirements:
- The student must be invited to participate in IEP meetings to discuss his/her goals after high school.
- You can request additional IEP Transition meetings during the school year.
- You can invite local provider agencies to attend your child’s IEP meetings.
- The IEP, including the transition plan, should incorporate person-centered planning, and reflect the student’s interests and skills.
- The work experiences or “community based work assessments” chosen should be based on the student interests and skills. Students should not be placed in a community-based work assignment simply because it is available.
- Any placement should help the student develop skills in a setting of personal interest to him/her, and where his/ her unique abilities can be utilized and improved with job coaching.
- Annual transition goals in the IEP should lead to successful post- high school outcomes.
- Student progress should be documented and measurable.
- Obtain progress reports about your child’s community based work experiences.
- Maintain a portfolio and resume of your child’s experiences, progress reports, and favorable reviews from your child’s supervisors. (Adapted from Wrightslaw: Transition Planning, Graham& Wright)
To prepare for life after school there are several things that you can do:
- Contact adult provider agencies before your child “ages out” to see if they will provide job coaching for your child during the transitioning phase. This may help to ensure that there will be no break in services between school and the beginning of the adult program.
- Invite representatives from adult provider agencies to attend you child’s IEP meetings
- You can request that the IEP team allow your child to experience community based college experiences during his final years under IDEA if you feel that is appropriate.
- Contact your states office of developmental disabilities about enrollment requirements and supports.
- If applicable, contact your state office of Vocational Rehabilitation Services about job training and support. Be aware that the supports provided under this system are time limited.
Some Final Thoughts
Since you are the captain of your child’s transition team you will also have to foster a feeling of active cooperation among your child’s school district, teachers, future adult service providers, and governmental agencies for several years. Knowing your child’s rights, timely planning and acting in incremental steps will help to make the process less stressful. It will also enable you and your child to have time on your side.
Resources for Transition Planning
Smith, M.D., Belcher, R.G. & Juhrs, P.D. (1995). A Guide to Successful Employment for Individuals with Autism. Baltimore, MD: Paul H. Brookes Publishing Co.
Wehman, P., (2001). Life Beyond the Classroom: Transition Strategies for Young People with Disabilities. Baltimore, MD: Paul H. Brookes Publishing Co.
Wehman,P. & Kregel, J. (1994). More Than A Job: Securing Satisfying Careers for People with Disabilities. Baltimore, MD: Paul H. Brookes Publishing Co.
Wehman, P. & Targett, P.S. (1999), Vocational Curriculum for Individuals with Special Needs: Transition from School to Adulthood. Austin, TX: PRO-ED.
Life Journey Through Autism: A Guide for Transition to Adulthood, published by the Organization for Autism Research, 2006 www.researchautism.org. An excellent and comprehensive guide on the transition process.
U.S. Department of Education – IDEA 2004 legislation and regulations http://idea.ed.gov.
National Dissemination Center for Children with Disabilities (NICHY) – Central source of information on disabilities, IDEA and effective educational practices http://www.nichcy.org
Wrightslaw – A comprehensive website about special education law and advocacy http://www.wrightslaw.com
Division on Career Development & Transition (DCPT) – A wealth of information on how to access career/vocational and transition services for persons with disabilities www.dcdt.org