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The Path For Autistic Kids Aging Out of the School System: Severely Autistic Especially At Risk for Warehousing   

May 3, 2015 in Featured, Special Education Advisor Blog by Jess

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.

 

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The Five Keys to Unlocking a Successful School Year

July 11, 2014 in Special Education Articles by Jess

Executive functioning skills are essential to succeed in life. Certain executive functioning skills, such as time management and organization, help individuals in their jobs, daily chores, and day to day responsibilities. Students with a variety of learning challenges, such as ADHD, learning disabilities, or autism spectrum disorders, may have deficits in such executive functioning skills, which can, in turn, adversely affect the school experience. Although these deficits may seem insurmountable at times, there are ways to tackle them to achieve success.

As a new school year is beginning, high school faculty and staff, parents, and students themselves, are searching for systems to put in place to develop such executive functioning skills and to maximize the classroom learning experience. To help, here are New Frontiers in Learning’s Five Keys to a Successful School Year: Read the rest of this entry →

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My Child has a Medical Diagnosis why doesn’t he Qualify for an IEP?

March 19, 2014 in Special Education Advisor Blog by Doug Goldberg

I often hear from parents, I have just gotten a medical diagnosis for my child and have set up my first IEP meeting to qualify them to receive services.  That medical diagnosis could be ADHD, a learning disorder, a mood disorder, an anxiety disorder, pervasive developmental disorder or a whole host of others.  These are typically the same parents that are blown away when the School District tells them they don’t qualify. Read the rest of this entry →

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In order to be fair we have got to treat them different

December 19, 2013 in Special Education Advisor Blog by Doug Goldberg

A couple of months ago I was touring an inclusive charter school that my wife and I want my son to attend for middle school. As we toured the different classrooms I noticed a sign hanging over the blackboard in every class. The sign read, “Fairness is not getting the same thing as everyone else, but getting what you need.” This motto seemed appropriate since the charter’s school inclusion “model allows for the individual needs of each child to be addressed in a manner that enhances each child’s strengths while also addressing learning needs” all within the general education setting.

Being the curious type I snapped a picture of one of the signs and went home to research the individual who came up with this philosophy. After doing some Google searches I found the following YouTube video from Rick Lavoie. Read the rest of this entry →

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Functionally-Based Curriculum for Teens with Severe Cognitive Impairment

November 10, 2013 in Special Education Articles by Jess

Students with severe autism, severe intellectual disabilities, severe brain damage and other such disabilities often lack the capacity to understand and use traditional educational subject matter to improve any aspect of their life.  However, IEP-driven programs for low cognitive, low verbal students continue to overemphasize traditional academics, and underemphasize functional academics.  Over-teaching material that is beyond the cognitive capacity of a child to understand and apply to their lives in a meaningful way, is disrespectful to that child and to their disorder.  Alternate curriculums for these students should primarily focus on daily situations, and the people, objects, locations and functions within those situations. Instead of this functionally based approach, students are being introduced to information in academics which are irrelevant to their needs and interests, and which do not advance the opportunity for cognitive growth and social success in the school, home and community.

This practice of teaching is as disrespectful as it would be to instruct these students in a foreign language. Reactions by students to curriculum they cannot understand or use can range from aggressive behavior, emotional shutdown or social withdrawal.  Read the rest of this entry →

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13 Key Issues Autism, special needs and parents of disabled need for their Family – Today, tomorrow and …?

November 5, 2013 in Special Education Articles by Jess

I call these my Baker’s Dozen – This is in no way a complete list, and each and every family’s situation will have nuances. Remember, it all can’t or doesn’t need to be done at once;

1. Get a proper diagnosis and assessments early. These are the building blocks for successful EI, IEP’s, ITP’s, ongoing evaluations, services, support, benefits, management and living options.

2. Accept your child. Accept yourself. Accept this community There are hundreds, even thousands of us close by. Just like you. Some may have more financial means, many may not. We all have many of the same needs, challenges and concerns… Sometimes scared, upset, and trying to understand, learn more, live a life, rebuild our dreams and thrive. Read the rest of this entry →

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Autism Spectrum Disorders Fact Sheet

October 6, 2013 in The National Dissemination Center for Children with Disabilities by Jess

Ryan’s Story

Ryan is a healthy, active two-year-old, but his parents are concerned because he doesn’t seem to be doing the same things that his older sister did at this age. He’s not really talking, yet; although sometimes, he repeats, over and over, words that he hears others say. He doesn’t use words to communicate, though. It seems he just enjoys the sounds of them. Ryan spends a lot of time playing by himself. He has a few favorite toys, mostly cars, or anything with wheels on it! And sometimes, he spins himself around as fast as he does the wheels on his cars. Ryan’s parents are really concerned, as he’s started throwing a tantrum whenever his routine has the smallest change. More and more, his parents feel stressed, not knowing what might trigger Ryan’s next upset.

Often, it seems Ryan doesn’t notice or care if his family or anyone else is around. His parents just don’t know how to reach their little boy, who seems so rigid and far too set in his ways for his tender young age. After talking with their family doctor, Ryan’s parents call the Early Intervention office in their community and make an appointment to have Ryan evaluated.

When the time comes, Ryan is seen by several professionals who play with him, watch him, and ask his parents a lot of questions. When they’re all done, Ryan is diagnosed with autism, one of the five disorders listed under an umbrella category of “Pervasive Developmental Disorders”—a category that’s often referred to as simply the “autism spectrum.”

As painful as this is for his parents to learn, the early intervention staff encourage them to learn more about the autism spectrum. By getting an early diagnosis and beginning treatment, Ryan has the best chance to grow and develop. Of course, there’s a long road ahead, but his parents take comfort in knowing that they aren’t alone and they’re getting Ryan the help he needs. Read the rest of this entry →

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Trying to Figure Out the Function for Problem Behaviors? Ask the Child!

September 10, 2013 in Special Education Articles by Jess

When addressing problem behaviors in individuals with ASD, the first step is to determine the function the behavior serves.  The main reason why we need to determine the function for problem behavior is so that we can teach the child replacement skills that are more appropriate that can serve the same function.  There are many tools teachers and behavior specialists use when doing a functional behavior assessment to determine the function of a problem behavior.  They conduct functional behavior assessment interviews with caregivers and professionals.  They observe and record the antecedents leading up to the problem behavior and the consequences that follow the behavior.  They collect scatter plot data in which they document when and where the behavior is most and least likely to occur.  And if they are real savvy, they go as far as doing functional behavior analyses in which they actually manipulate variables in the environment to test out the hypothesis for the function of the behavior.  For more info on functional behavior assessment, click on this helpful link: http://cecp.air.org/fba/ Read the rest of this entry →

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A Taste of Autism in the East

July 8, 2013 in Special Education Articles by Jess

There’s a hair roller stuck with a piece of Velcro to a piece of card on the wall. Alongside it is a separate strip of cardboard with a small card attached with Velcro, on which is a picture with the name of what’s on the image hand written underneath. These two strips of cardboard demarcate the gap between the least and most able students in this part of the autism school in Beijing, China.

I’ve taken a short, dusty walk from the original Stars and Rain autism school to this building which teaches around 6 students aged 13-18 at any one time. When I arrive there are only five students, four adolescent men and one female. Chinese Special Educational Needs teachers, who have little in-service training and still less status for their work, use TEACCH (the Treatment and Education of Autistic and Communication Related Handicapped Children) methods and visual timetabling to achieve goals and develop communication. On the day I visit, there are two teachers and three German volunteers whose internships program sees them stay for a year in the capital’s suburbs, working daily in the upper school and sleeping in local accommodation. Read the rest of this entry →

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The Affordable Care Act and Autism Insurance: A bait and switch?

July 7, 2013 in Special Education Articles by Jess

The rate of autism is on the rise. Current estimates about the prevalence of the condition are that it affects one out of every 88 children. Among boys the rate is even higher at one out of every 54. It’s so bad that the advocacy group Autism Speaks has called it an epidemic.

For parents of autistic children the most effective option for treatment has long been Applied Behavioral Analysis (ABA). Numerous studies have shown the effectiveness of ABA both in the long and short term. The therapy helps children learn the essential life skills that help them succeed well into adulthood.

However many families face the issue of how to afford such treatment. Daily sessions can cost anywhere from $20,000 to $100,000 each year, and the therapy is not always covered by insurance. Read the rest of this entry →

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