Please take a moment this Holiday Season to think about all the positive ways people with disabilities are impacting your lives, directly or indirectly. We are very grateful again this year to all those who took the extra mile in helping a child or adult with a disability overcome challenges and live happy and successful lives.

Our Coded Generations Team made a great deal of progress this year and will have 95% of the filming done by the end of December. Both our main characters have experienced life changing events and our team has a deepened understanding of the complex issues surrounding inclusive education and inclusive workplaces. We will be presenting and exploring those complexities of inclusion in our documentary.

We would like to take this opportunity to thank our incredible supporters this year: Rosetta Stone, Best Buddies International, The National Down Syndrome Society, TASH, The Institute for Economic Empowerment, Docs in Progress and ,of course, our wonderful filmmakers for their dedication and many volunteer hours: Olha Onyshko, Sarah Farhat and Marc Alexander.

If you would like to help us bring this film to the big screen sooner we welcome your kind tax free donations! Also if you need some ideas for your Holiday shopping, please check our Amazon Shop or the wonderful products offered by the Down Syndrome Footprint (please include CODED at checkout so our film will get a percentage of your purchase).

Wishing you all a wonderful Holiday Season and a Healthy and Happy 2012!

With Best Buddies initial support, Rosetta Stone proves that it is possible to successfully hire an individual with disabilities as long as you are truly committed to this relationship and we hope that this company receives as much gratitude from our community for their efforts as we can offer. This year, they are sponsoring again the Best Buddies Challenge, the event that made their relationship with Erin possible! Check Erin and Jay Topper, Rosetta Stone Captain on live TV!

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Will you please help us show our thanks for everything they are doing for our community? Click HERE to support Rosetta Stone Team and give them a chance to shine as a Best Buddies Monumental Sponsor!

With gratitude,

The Coded Generations Team

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!

Yes, there has been a lot of progress: many children graduate neighborhood schools and some get jobs (look at Erin) or get married (look at David and Monica) and live happy lives in the communities they grew up in. However, the advocacy work needs to continue until we no longer hear stories like the young man in Charles County, MD, who is not allowed to join his brothers and sister’s home high school because “Westlake HS doesn’t offer a program suited for him” (http://charlescounty.wusa9.com/news/news/fighting-logan/59229) .

It is my understanding of IDEA that children like him have the right to Free Appropriate Public Education in the Least Restrictive Environment-LRE based on an Individualized Education Plan –IEP. Well, LRE means that he should have the right to go to the closest, age appropriate general education classes in the neighborhood school alongside neighbors and friends. The law says nothing about kids with disabilities having to go to schools where “appropriate” programs are developed for them! Therefore, I still don’t understand why so many children with disabilities are refused education in their home schools because they do not have the type of “program” that would suit their needs.  My son for example doesn’t need a special program, he just needs a modified curriculum and to be supported in learning alongside his neighborhood friends in the same school community as his brother’s. They create the most effective learning environment for my son to develop the social skills and emotional abilities that will enable him to be successful in life and I believe this to be the case for a large majority when the school environment is adapted to provide an inclusive education experience.  

Fortunately, there are also many wonderful things happening around the country as a result of long term advocacy. I have had the pleasure and opportunity this year to advocate on Capitol Hill with the National Down Syndrome Society-NDSS and talk with our legislators about important pieces of legislation for our community in Maryland.  Like many other representatives, Congressman Van Hollen kindly received our large Maryland Delegation and committed to continuing his support of legislation that protects our loved ones with disabilities (http://vanhollen.house.gov/News/DocumentSingle.aspx?DocumentID=200682). It was also a wonderful surprise to have the opportunity to interview Representative Gregg Harper who introduced the TEAM Act in Congress earlier this year. This legislative package “ aims to streamline federal programs and services intended to support youth with significant disabilities from adolescence to adulthood and rebalance federal funding to focus on improved outcomes in post-secondary education and integrated employment”. (http://harper.house.gov/press-release/harper-introduces-intellectual-disabilities-legislative-package)

Tomorrow, I plan on joining TASH for another day of advocating on Capitol Hill. This time we are talking about the TEAM Act as well as the reauthorization of IDEA but more importantly for me personally is advocating for the Keeping All Students Safe Act (H.R. 4247) http://www.opencongress.org/bill/111-h4247/show. I am very excited to participate and look forward to being part of a wonderful community that continues to fight for a better future for our children!

The idea for Coded Generations started only 3 months earlier with an answer to Olha’s simple question: why did we want Marcu in Ms. Merritt’s kindergarten class and not in the little, 4 student group called the Learning Center across the hallway? She did not settle for my short answer of our belief that Marcu will develop fully only in a regular environment where he would from observing and learning from his typical  developing peers.  That was how discussion started and continues on topics such as inclusive education, what it means, what it takes, Universal Design for Learning, IDEA, fair choices for children with disabilities to free appropriate education, fair choices for young adults with disabilities to meaningful employment and productive lives and maybe most importantly, on social justice.    

John Rawls, the American philosopher and leading figure in moral and political philosophy argued that “the most reasonable principles of justice are those everyone would accept and agree to from a fair position”. When asking people to look at justice, he used the veil of ignorance “No one knows his place in society, his class position or social status, nor does anyone know his fortune in the distribution of natural assets and abilities, his intelligence, strength, and the like. I shall even assume that the parties do not know their conceptions of the good or their special psychological propensities. The principles of justice are chosen behind a veil of ignorance.”   That’s certainly an interesting thing to think about with regard to people with disabilities. If you weren’t sure whether YOU were the person with the disability or not, how would you design and develop the necessary support systems for individuals with disability to live as independently as possible? What would you consider a just social environment if it might be you?

Coded Generations will try to show what might be needed for our society to give its population with disabilities fair access to happy and productive lives as per Rawls’ principals of social justice. 

What maybe less know, is the vision he provided as one of the founders of the National Head Start Association and his relentless work in setting this organization on the right direction, an organization that prides itself with believing that:

• “ all children should reach their full potential,
• every child can succeed,
• we can impact the success of “at risk” children,
• quality early education fundamentally transforms children and families.” http://www.nhsa.org/  

Head Start programs opened their doors around the US to including children with different needs, providing high quality services in partnership with The Council for Exceptional Children’s Division of Early Childhood (DEC). Together those organizations “promote policies and practices that enhance the development of children with special needs and support their families in the Head Start community”.

YouTube: Sargent Shriver, David Bradley on Head Start

In one year, our friends in the Shriver family have lost two loving parents and our community has lost two incredible advocates for our children and adults with disabilities. We are truly grateful for R. Sargent Shriver and Eunice Shriver’s legacy and their children’s continuous efforts to ensuring that individuals with disabilities have access to inclusive opportunities in our public schools, workplaces and communities.

Sincere Condolences

The Coded Generations Team

Camelia Fawzy, Olha Onyshko, Sarah Farhat and Mark Alexander

The opportunity came when Timothy Shriver (Chairman and CEO of the Special Olympics) was receiving a special award from the Arc of NOVA to honor his support for the organization (http://thearcofnova.org/gala2010/). Erin was able to meet with Mr. Shriver at the Special Olympics offices and ask him questions related to the Arc of NOVA’s successful successful campaign  called “A Life Like Yours”. We were all touched by Mr. Shriver’s encouragements to “live the life that we each have with dignity and make the best out of it”.

A few days after this event, Erin had another amazing opportunity, and this time she interviewed Anthony Shriver, the Founder and Chairman of Best Buddies, an organization supporting children and young adults with intellectual disabilities in more than 50 countries. We will let you judge Erin’s performance as an interviewer when our documentary Coded Generations is released but for now we can say that we were very impressed and proud of our wonderful colleague.

We are thrilled to have been able to witness Erin’s interviews as they confirm once more that given the opportunity, one can make the efforts to meet expectations.  Please take a few minutes to check what Erin has to say about her experiences on her blog: www.codedgenerations.com/erin.

What are Olia and Sarah doing when not working on Coded Generations?

Well, they just returned from the Hamburg Film Festival where they successfully screened their Film “Three Stories of Galicia”, a beautiful, emotional documentary that “reveals the intimate stories of three courageous individuals who took it upon themselves to preserve the dignity of the human spirit” during the second world war .  You might like to check their Blog for some fun insight stories!

“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?

On the other hand, we saw that children who have no disabilities but are exposed to working/learning together with those who have them develop high level of tolerance and patience. Seeing children interacting with their peers with different abilities we learned that our youngsters are able to do an amazing job in making sure that no one feels excluded in their classroom. In our film, you will be able to see how the school community achieves that inclusion, the work behind the scene and the secrets of the positive results that benefit everyone in the classroom.

We would like to thank both schools’ wonderful educators, specialists and school administrations for accommodating our crew’s needs and schedule. We would also like to thank our little stars for their participation and cooperation and for making us laugh and cry at the same time.

Please join our mailing list for updates on this production here!