Meetings on Capitol Hill on behalf of TASH
If I would have to describe the experience in a nutshell I would say “emotionally exhausting but the best medicine for my soul”! For me, the worse feeling is to feel powerless when it comes to my children and although I went to advocate on behalf of TASH it was this organization that gave me the opportunity to feel empowered, to feel that I have a voice when it comes to my children’s wellbeing. However, while doing this with my children in mind I do hope it will benefit many others who cannot have their experiences heard or shared.
We visited the offices of our senators and representatives to discuss the TASH public policy agenda related to four areas: protecting students with disabilities by restricting the use of restraints and seclusion, promoting inclusive education practices, supporting competitive and integrated employment for transitioning youth and adults with disabilities, and ensuring that Medicaid resources are used to support people in their communities instead of in institutionalized settings. We also attended a panel who provided a Congressional Briefing on the current issues with restraint and seclusion practices, demonstrating the flawed thinking of schools and residential settings and how these practices actually cost money and hurt people.
I was pleasantly surprised with the knowledge many congressional staff had about the Keeping All Students Safe Act (HR 1381) and their willingness to discuss with the legislators to co-sponsor this law that will keep so many children safe in our public schools. On the other hand though, I thought our delegation surprised most people we met with when we started to talk about the ESEA-The Elementary & Secondary Education Act. Most people expect an organization advocating for the rights of people with disabilities to go talk about IDEA and it was surprising to hear us dedicate some of the valuable meeting time to talk about an education law that refers to general education. Well, this is where the argument came in. As long as we see GENERAL EDUCATION and SPECIAL EDUCATION as two parallel systems, there is no way to see REAL INCLUSION happening at the implementation level. Experience is showing us that only when school administrators and general educators think of children with disabilities as valuable stakeholders of their school they think about and put the effort in providing the necessary school accommodations, instruction & curriculum modifications to ensure their success. However, how can we, parents, advocate at the school level for an inclusive education culture when teachers and school administration training in best practices in inclusive education is elective and mostly ignored even when they have children with disabilities in their classes/schools as IDEA requires. IDEA enables parents to advocate for their children to be placed in the Least Restrictive Environment, meaning general education as much as possible based on the child IEP. At the same time, under IDEA, parents can ask school administrators and teachers to adapt the environment and modify their instruction but to what extent this actually happens is a very different story for those educators who either do not understand or accept that students with disabilities actually BELONG to them, and they should at least be trying to include them.
The sad part is that those educators ignore the fact that such modifications would benefit many others in the school and would ultimately contribute to an inclusive culture that will provide the best example all children could carry through their adult lives. One of the parents in our delegation has her son bussed across town to be in a school that provides accommodations for children with autism because the neighborhood school is not “equipped” to do so yet. Another one advocated for 8 years for her daughter to be removed from a special school into a general education school only to see her now in a self contained class able to be around typically developing children in the lunch room, at a separate table of course. To me the ironic thing is that while my son attends a general education class with supports, the lunch room is among the most difficult to navigate due to his messed up hearing and consequent sensory integrations issues, making noisy, chaotic rooms full of kids/people truly painful experiences. He is not the only one and if given the opportunity to have lunch with some friends in a quieter place would not only allow him the learning experience we send him to school for but would also teach his typically developing friends what it takes to have a fun, positive experience with him. …and who knows, maybe one of them might open a restaurant and provide a “quiet” area where many people like his friend could actually come and enjoy a nice meal, a romantic experience or simply a regular night out with friends in a place that accommodates their needs and welcomes all clients….but maybe that is too far to think!
Unfortunately, having children with disabilities in public schools that do not really welcome them and provide the necessary supports and accommodations is a HUGE problem that surely results in poor educational outcomes and unfortunately, many times worse: restraints & seclusions. It was so hurtful to listen to the panel’s arguments against restraint and seclusion in public schools and I truly hope that people leaving that congressional briefing walked out with at least one important argument: Restraint and Seclusions are NOT therapeutic techniques and do only HARM. I kept thinking about the need for these methods and the argument that they are meant to “protect the child from himself/herself or others”. However, Joan Gillece, SAMHSA’ Project Director, cleared the only little doubt I might have had when she argued that when a child is in danger we would immediately respond and hold to protect the child anyway and once that moment passed, why would we have “trained” personnel continue to restraint or seclude the child for one extra minute more? That extra minute or many more that follow are only the bases for future emotional trauma and more behaviors! For a reveling report, please visit TASH’s site and download the parent prevention guide! It is truly unfortunate to see the level of abuse taking place in our US public schools and I challenge you to watch through the Jeremiah’s Video on the Families Against Restraint and Seclusion website (disclaimer: I was only able to watch the first 3 minutes)!
Thank you TASH!
Denying happiness to our future generations of young adults with disabilities?
The text of the second section of the United States Declaration of Independence, which was primarily drafted by Jefferson reads:
“We hold these Truths to be self-evident, that all Men are created equal, that they are endowed by their Creator with certain unalienable Rights, that among these are Life, Liberty and the pursuit of Happiness.” (http://en.wikipedia.org/wiki/Life,_liberty_and_the_pursuit_of_happiness)
This famous quote is one that I often think of when asking myself “What do I wish for myself, my family and my kids?” When thinking of liberty, we consider ourselves fortunate to enjoy life in a free country, knowing that so many are still fighting for liberty all over the world. But Happiness? We all want to be happy, to raise happy children and later on, hope that our children grow to become happy adults who enjoy their lives. But what does it really mean to be happy?
I think many parents raising children with disabilities like us have difficulties defining and understanding happiness. Kids that have speech and language related disabilities have an amazing ability to express happiness through gestures and body language but many times it is not that easy to identify happiness in children who might face challenges in expressing their feelings.
However, even when we may question what makes our children happy, it is always easy to notice the pleasure they express when their work and their achievements get recognized. They take great pride in being able to prove the abilities they will carry to their adulthood and hopefully to their future careers. After all, we raise children with hopes that one day they will be able to become happy adults who enjoy their lives and work is a big part of that.
In his book Gross National Happiness, Arthur C. Brooks argues that “within the bounds of normal work-life, the data are overwhelmingly clear that for most Americans, work in and of itself brings happiness” (2008, p. 159). “Success is rocket fuel for our happiness” says the author and then concludes that: ”work also brings happiness because it gives our lives meaning and meaning brings happiness, sooner or later” (2008, p. 162).
But what if you have a child with a disability? Taking this author’s research and conclusions further, I am truly worried about my ability to successfully pursue happiness for my young son born with Down syndrome.
In a recent Washington Post article, Tim Shriver, the Chairman and Chief Executive of Special Olympics, notes that “Seventy to ninety percent of people with intellectual disabilities in the United States are estimated to be unemployed. Special Olympics studies reveal that more than sixty percent of Americans don’t believe that children with intellectual disabilities should be educated in their child’s school.” (http://www.washingtonpost.com/wp-dyn/content/article/2010/02/14/AR2010021402893.html)
My son is among the fortunate ones to be successfully included in his home school, to have wonderful educators and peers who greatly contribute to the development of his abilities while building confidence and tolerance among his friends. We are confident that as long as his inclusion remains successful, he will grow to be an adult able to pursue his work goals and his employment dreams. Still, I can’t help but wonder: Will the work place be ready to include him? Will it be ready to give him opportunities to work, to be successful and pursue happiness?
Aristotle once said “happiness belongs to the self-sufficient” and Brooks (2008) reaches the conclusion that “the misery is compounded when people are reliant on the state for support because they cannot take care of themselves” (2008). Does it mean that currently, our society is denying happiness to the millions of people with disabilities who are unable to work because of the lack of working opportunities to fit their abilities, to fit their interests & career dreams? What about our younger generations with disabilities, working so hard to be better prepared for employment? Will they also be denied the unalienable right to pursue happiness?
Straight talk on Inclusion: What is Inclusive Education?
April 20, 11:22 PM Rockville Special Needs Kids Examiner Shameen Anthanio-Williams
Published by Examiner.com, Washington DC
If you are a parent of a disabled child, then it is likely you have had discussions on Inclusion. There are some parents who feel that Inclusive Education is the right answer for every child, while others feel it may only meet the needs of some children. Having a solid understanding of what an inclusive educational program entails will not only help substantiate your opinion about the subject, but it will open your eyes to a broader register of opportunities for your child’s education program.
First, Inclusion is not a legal term that can be found in existing federal laws, or regulations regarding special education. It is a derivative of 20 USC Code 1412(a) (5) and 34 CFR 300.114 which defines Least Restrictive Environment (LRE). The following are excerpts from both citations:…
To read the entire article please visit the Author’s page on the Examiner.
A comparison of mainstream and special education for teenagers with Down syndrome: Implications for parents and teachers
Authors: Sue Buckley, Gillian Bird, Ben Sacks and Tamsin Archer
Published by Downsyndrome Research and Practice 9(3), 54-67
This article presents data from a research study designed to compare the achievements of teenagers with Down syndrome educated in mainstream classrooms or in special education classrooms throughout their full-time education. Progress is reported for speech and language, literacy, socialisation, daily living skills and behaviour. For all the teenagers, there is evidence of progress with age on all the measures except for communication. Communication continued to improve through teenage years for the included children but not for those in special education classrooms. There were no significant differences in overall outcomes for daily living skills or socialization. However, there were large significant gains in expressive language and literacy skills for those educated in mainstream classrooms. Teenagers educated in mainstream classrooms showed fewer behavioural difficulties. Further, comparison with data published by these authors in an earlier study, showed no improvements in school achievements in special education over a 13 year period in the UK (1986-1999). (more…)
About Coded Generations
As soon as children with special needs enter the public school system they receive an Individual Education Plan (IEP) and a code such as intellectually disabled, emotionally disturbed, specific learning disabled, developmentally delayed, autistic or other health impaired. Children without IEPs are labeled as Gifted & Talented or fall into the “typical” group. The vague definitions of IEP codes shape their education experience by influencing what they learn, who they interact with, and how their educators and peers perceive their abilities.
Beyond graduation, the experiences resulting from these labels follow them into the workforce where they encounter obstacles in reaching employment potential. The unemployment rate for individuals with disabilities is more than double the rate for their peers. Approximately 6,590,000, or 7% of American students attending public school between ages 3 and 21 have an IEP and many of these children will aspire to become productive members of our workforce. What opportunities will await them? Will the American workplace be ready to employ this steadily increasing number of individuals with special needs?
Coded Generations will follow the path of individuals with special needs from their first friendships in kindergarten classrooms to successful careers. These children and adults, as all of us, have vast potential if given a chance. Although they may encounter more obstacles along the way, Coded Generations will argue that their futures are worth greater investment from their communities, service providers and schools and that given the opportunity they can, and will, make contributions to this society that far exceed most expectations.
