A recent NBC Dateline episode, “On The Brink” which aired April 12, 2015, highlighted a dire situation facing many autistic young adults and their families. It stated that within the next two years approximately 500,000 autistic teenagers will become ineligible for a free public education because they will have reached the age of 21. The unofficial term for this is “ aging out” of the system. This will result in an influx of adults with significant functional limitations into the mainstream, with few educational, vocational and social resources available to them. In addition to the financial stress that will be put on state and federal social services, the expense to individual families responsible for the care and well being of these autistic young adults will be overwhelming, and in some cases impossible to manage. The result is clear: the inhumane neglect of the educational potential of these young people, who by age 21 are not miraculously ready to have their academic education terminated, and replaced with only vocational tasks they may or may not enjoy, feel proud of or challenged by.
Federal law states by the age of 16 students with developmental disabilities are supposed to have Individualized Transition Plans (ITP) in place as part of their Individualized Educational Plan (IEP). The ITP is supposed to serve as a template for formation of a plan to identify skills and capacities that need to be developed, in order to prepare the young adult with disabilities to leave high school and be successful in an environment outside of the educational system. These settings would include vocational training programs, social settings, and employment settings. This plan in theory seems to be a good one: start 5 years before formal state education is terminated and prepare the student (to whatever degree possible, given the particulars of their disability) to enter a setting for adults with developmental disabilities. However, there are flaws with how this theory of post secondary programming for the developmentally disable is executed.
Flaw #1: The ITP Itself
The ITP is supposed to be specific in identifying and highlighting job related skills which need to be worked on. It is supposed to have measurable goals, with time frames for those goals to be achieved. It should include strategies for success aimed at creating growth and change in the functionality of the student. If it is to be useful, it cannot be generic, use boilerplate phrases that allow for boxes to be checked off, and lacking a plan with therapeutic measures in place. These components are essential to making sure precious time is not wasted on helping these students attain personal growth, which will lead to success in future diverse settings.
The current form of the commonly used ITP ignores the cognitive and educational skills of the student, almost as if the student has been written off by age 21-22 as not needing to add to their academic base of knowledge. This mindset of the current form, therefore, relegates these young adults to “doing” tasks, usually at lower level jobs. There is nothing wrong with those jobs, and nothing wrong with some students being placed in those jobs. However, is it fair to decide at a certain age that the more significantly affected individuals have reached their academic potential, and that we will absolutely define how they will spend their future?
With the passing of the Self Determination Legislation there is a new and much needed respectful mindset toward the issues facing the developmentally disabled and their families. However, it is not directly useful to the disabled who have limited speech, cognitive impairment and sensory motor issues. Those individuals cannot advocate for themselves, and even with strong parental advocacy, without the commitment of secondary educational institutions, adult day settings, or vocational settings to teach functional academics, they will not be able to reach their potential for job or social success.
Flaw #2: Secondary Educational Mindsets, Attitudes, and Curriculum Content
As a parent of a twenty-year old son with severe autism, and as a professional in the field, it has been painful and frustrating to navigate the rigid mindsets and politics of a large school system. Once I made sure that I became educated and accomplished in the field as a writer, lecturer and practitioner, I became an advocate for my son which caused much resistance and insecurities with certain schools, from the administration down to the teachers. I came from a mindset of being an expert on my son’s type of autism, and provided high level information, resources, and personal time to assist in creating a curriculum that reflected who my son was and is, and what he needed to get to that next level of his functional capacity. I thought this would be of help and welcomed. However, I have been met with resistance over the years. The main challenge has been to insure that my son’s abilities were maximized, and that his disabilities were well understood, and that effective interventions were used.
The major problem has been one of attitude, expressed directly or indirectly as an overly sensitive reaction by staff, either feeling not appreciated or minimized. That has resulted from the advocacy of educated, involved parents who want the collaborative model to go beyond merely meeting as a team, and instead to also allow for parental input aimed at directing components of their child’s program where clearly indicated, or aimed at striving for a direction which should have been whole-heartedly tried to test its efficacy.
The curriculum issue of most concern is the practice of teaching children with moderate to severe cognitive disability information that is not understandable, meaningful, or useful to them. It is fine to share general information about history, literature or science. However, for the significantly developmentally disabled student, much of that information will not appropriately further functionality. By contrast, improving their ability to spell, read, and practice simple math will improve the comprehension of more complex interactions, and expectations, they will encounter. Academic skills are a huge part of being successful in a variety of vocational and social settings outside the traditional classroom setting. To leave academics out of the ITP, and out of programs working with these individuals, is a blatant misunderstanding of what a comprehensive program needs to be.
Relatedly, the goal of supporting brain development, and moving up the developmental ladder, should be an ongoing priority for programs working with the developmentally disabled. The human brain has plasticity, so potential for learning and advances in all domains of functioning is possible for this population. The brain continues to develop to its full capacity up to the age of 26-28, so it makes no sense to terminate academic learning for any kid, typical or non-typical before that age. For the developmentally disabled, autistic population, it makes even less sense than with neuro-typical kids.
Solutions and Hope
Professionals working with transition young adults and formulating their ITP’s should expand the format to include a section that addresses the continued need for functional academics which could improve job performance, skill acquisition and appropriate social interactions in the workplace. Programs working with this post secondary educational population need to provide some attention for the kind of reading, writing, spelling and math that will be necessary in workplace and social settings. They need to provide professional educators who can identify a person’s academic skill set, and build on it with certain jobs/careers in mind. For the more profoundly affected individual, supports should be built into programs to help improve communication skills which will further support a sense of connection to the work settings and other people.
Regional Centers also need to recognize the need for a continued academic educational component for special needs programs they vendor. Parents need to play a consistent role in continuing the focus on functional academics in the home and in the community. Parents should periodically obtain clinical and educational assessments, and provide those to adult placement centers to increase the effectiveness of those programs which in turn provide services and opportunities for their son or daughter.
There is and continues to be power in learning, and people challenged with cognitive difficulties should be reminded in an ongoing fashion they have the ability to learn, grow and accomplish goals that have meaning for them. No matter how limited an individual's communication skills, attempts must be made in school and in post-secondary vocational programs to read the verbal and non verbal signs that person is sending in their attempt to be heard and understood.