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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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by Jess

Learning Basic Life Skills in High School

August 17, 2014 in Special Education Articles by Jess

What should families expect their children to learn in a life skills class at the high school level? A simple question; however, I think many schools seem to struggle with providing valuable life skills lessons. Our students age out at 22 years old, which means the state is no longer responsible with providing the students services through public schools. When students attain that age and leave our system, it is incredibly important for them and their family that the student has learned coping skills to assist them to become more independent in their life. Read the rest of this entry →

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Transition to Adulthood

April 12, 2014 in Special Education Advisor Blog by Doug Goldberg

When reauthorizing IDEA in 2004 Congress found that “while graduation rates for children with disabilities continue to climb, providing effective transition services to promote successful post-school employment or education is an important measure of accountability for children with disabilities.”

IDEA defined transition services to mean a coordinated set of activities for a child with a disability that:

  1. 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 post-secondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living, or community participation;
  2. is based on the individual child’s needs, taking into account the child’s strengths, preferences, and interests; and
  3. includes instruction, related services, community experiences, the development of employment and other post-school adult living objectives, and, when appropriate, acquisition of daily living skills and functional vocational evaluation. Read the rest of this entry →
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Ten Steps to Writing Effective IEP Goals

January 23, 2014 in Special Education Advisor Blog by Dennise Goldberg

The Individuals with Disabilities Act (IDEA) requires that all Individualized Education Programs (IEPs) include:

A statement of measurable annual goals, including academic and functional goals, designed to (a) meet the child’s needs that result from the child’s disability to enable the child to be involved in and make progress in the general education curriculum; and (b) meet each of the child’s other educational needs that result from the child’s disability. Read the rest of this entry →

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Spring Has Sprung and so Have IEPs

March 20, 2013 in Special Education Advisor Blog by Dennise Goldberg

Spring is here, although you wouldn’t know it judging by the weather in some parts of the country.  Spring break is upon us; so many people will be taking family vacations to reconnect with their loved ones.  However, when the break is over, it will be time to get down to serious IEP business.  When classes resume, there are probably 8-9 weeks of academics left until summer break and during that time your child will be preparing and taking state tests.  When you think about it, the semester is almost over. Read the rest of this entry →

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College-Bound: What Every Student with Learning Differences Needs to Know

January 1, 2013 in Special Education Articles by Jess

During this time of year, high school juniors and seniors are hard at work preparing for college entrance exams, writing the perfect admissions essay, touring colleges, and eagerly awaiting decision letters from their institutions of choice. While this can be an exciting, yet stressful time for all students, students with learning differences have another level of factors that they need to take into consideration when choosing the right college. It is important for these students to not only consider the skills necessary to set themselves up for success, but to also be aware of the supports available to them at the colleges where they are considering attending. Read the rest of this entry →

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Top Ten Most Viewed Special Education Advisor Blogs for 2012

December 25, 2012 in Special Education Advisor Blog by Dennise Goldberg

The following is a list of the most viewed special education advisor blogs from 2012. This doesn’t include any of our guest articles which has been published separately. 2012 was Special Education Advisor’s second full year of operation and we continue to grow more quickly that we could ever imagine. We currently have over 36,000 visitors a month and over 75,000 page views per month. We continue to grow every month and it’s all because of our members and visitors. Thank you for your continued support and without further adieu here is the list: Read the rest of this entry →

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Top Ten Common Questions About Special Education

December 12, 2012 in Special Education Advisor Blog by Dennise Goldberg

1.  What is the special education law that can help my child with a disability?

The foundation of today’s special education law was passed in 1975 and enacted in 1977.  This was Public Law 94-142, The Education for All Handicapped Children Act of 1975.  In 1990 EHA was renamed to the Individuals with Disabilities Education Act or IDEA.  IDEA was most recently reauthorized in 2004.  The Purpose of IDEA is to ensure that all children with disabilities have available to them a free appropriate public education or FAPE that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment and independent living.

It’s important to note that the law only guarantees an appropriate education and not the best education.  Best is a four letter word and Parents should learn to replace it with the word appropriate when discussing their child’s special education needs Read the rest of this entry →

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Middle School Magic or Madness

July 22, 2012 in Special Education Articles by Jess

Last year my daughter entered 6th grade and middle school.  Rachel has Down syndrome and has always been fully included. Middle school conjures up visions of all kinds of difficulties for families of typical students. Add in an intellectual disability and the imagination can go wild with all the “what if’s.”  Based on the testimony of many parents and students, some of those “what ifs” are real and not imagined.  We had a fabulous first year of middle school and I’d like to share some of the reasons I believe this to have been so. Read the rest of this entry →

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Today I Celebrate, Tomorrow I Worry

June 18, 2012 in Special Education Advisor Blog by Dennise Goldberg

Today is my son’s graduation from elementary school. For seven years he has attended this school and he even started way back in preschool. This makes him the longest attending student in this school since none of his other preschool classmates are still around. It’s a monumental day because it marks an incredible triumph in his young life because nothing has come easy for him. I can’t think of one of life’s milestones that my son has accomplished without a little extra support. He doesn’t even grow naturally and requires a daily shot of growth hormones to help nature run its course. It’s been this way for every aspect of his life including eating, speaking, fine motor, gross motor, learning, socialization and more. The amazing thing about my son is he manages these struggles with a huge grin, a heart of gold and the desire to learn when taught correctly. Don’t get me wrong he has many strengths to compensate for his challenges and he ALWAYS find a way to compensate but it takes time, effort and patience to teach him how. This is why today we will all celebrate this major accomplishment in my son’s life because he has progressed so far but this is also why tomorrow I start to worry. Read the rest of this entry →

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