We start our series with a post on “SYSTEMIC CHANGE” related facts and questions:

Fact 1: INCLUSIVE EDUCATION is an educational model that benefits ALL* students when proven best practices are effectively implemented.

*by ALL we mean students with disabilities and their “non-disabled” peers learning together in general education classes more than 80% as per the IDEA Least Restrictive Environment requirement.

There is a lot of quality research data that supports this fact based on many successful education experiences across the US. The research supports Dr. Whitbread’s argument that “placement in inclusive classrooms does not interfere with the academic performance of students without disabilities with respect to the amount of allocated time and engaged instructional time, the rate of interruption to planned activities and students’ achievement on test scores and report card grades (York, Vandercook, MacDonald, Heise-Neff, and Caughey, 1992). The types of instructional strategies found in inclusive classrooms, including peer tutoring, cooperative learning groups, and differentiated instruction, have been shown to be beneficial to all learners. For example, Slavin, Madden, & Leavy (1984) found that math scores for students with and without disabilities increased by nearly half a grade level as a result of working in cooperative learning groups.” http://www.wrightslaw.com/info/lre.incls.rsrch.whitbread.htm#.T4M1mgI_cB0.email

When the Inclusive Education model is properly developed and implemented the result is superior education for all students involved in the process and one of my favorite such examples is the Henderson Inclusion Elementary School in Boston Massachusetts featured in the Willing and Able Documentary as well as by PBS:

Henderson Inclusion Elementary School, Boston

Question 1: Why do some states choose to strategically develop their education systems in adopting Inclusive Education as the preferred model while other states resist implementing well proven approaches and choose the status quo of separate education thereby failing to offer parents an inclusive model as a viable choice for their children with & without disabilities?

I learned from the last Maryland comprehensive system assessment report  “Inclusive Education in Maryland-A Blueprint for Change”  published in 2003 that “Out of the 50 States, Puerto Rico, and the District of Columbia, Maryland ranked 34th for its placement of students with disabilities in the general education classroom.”   Ten years ago,  Maryland fell far below states like Vermont and New Hampshire, which have the most inclusive education systems in the country and that “systemic policy and practice explain Maryland’s poor showing”. http://www.mcie.org/docs/publications/BlueprintforMaryland.pdf

Since this report, the trend of including children with disabilities in general education classes in Maryland has been slowly on the rise with only 56.9% children with disabilities (ages between 3 and 21) in general education more than 80% of their school day in 2009 and a target of 62% in 2011. Although by 2009, Maryland ranked above the national average of 53% for students with intellectual and developmental disabilities in least restrictive environment, the state was still far below others like Vermont (71%). http://www.uvm.edu/~cdci/archives/mgiangre/IDD09_47_1_53-56.pdf

This explains why in 2009, we had to have our own private eligibility evaluations and an educational consultant with us at our first IEP meetings in which my son’s placement in kindergarten was decided and in which we argued for him to attend a regular education class and not the “learning center” in our neighborhood school as per their proposal. I understood the potential advantages of him being placed in a small class and having more teacher support but we decided that school is more than learning reading and math…school should prepare him both socially and academically for life in our community.

Besides the progress being painfully slow for those parents who would like their children with disabilities included most of their school day, the process has been very inconsistent from county to county. While some county leadership embraced the recommendations made by the “Inclusive Education in Maryland-A Blueprint for Change” and implemented best practices that allowed a larger percentage of children with a variety of disabilities to be placed in general education classes more than 80% of their school day, others continued to fail. Why for example in 2009 did Maryland counties such as Cecil (90.24%), Harford (82%), Frederick (80%), and Howard (76%) were able to reach percentages of children included in general education classes substantially higher than the state average of 56.9% while counties such as Prince George (49%), Baltimore City (50%), Calvert (55%) are either barely reaching the average or falling far below? http://mdideareport.org/SupportingDocuments/MDSpecialEducationEarlyInterventionCensusDataRelatedTables.pdf

And is it really only a matter of numbers? Is it about how many children with disabilities are educated in a Least Restrictive Environment (>80% time in general ed) or about how many children with disabilities are receiving an appropriate public education in LRE? Montgomery County which has the largest number of students with disabilities in Maryland, a total of 16,898, has steadily improved the percentage of kids placed in general education classes increasing its number to 68% thereby reaching above mandated state target of 62% in 2011. Starting in 2006,  Montgomery County began phasing out the programs in its middle and high schools in which children spent most time in special education learning centers. However, while a welcomed direction by many in the county, especially those concerned with the very large numbers of African Americans placed in segregated settings, some argue that it was only a solution to improving LRE data.

The table below with data collected from MCPS Annual Reports shows a very mixed picture. The significant progress made by students with special needs in LRE in Math and Reading is consistent with research data that shows better academic progress in these areas when they are learning alongside their typical developing peers.  However, other indicators such as suspension and dropout rates, remain alarmingly high and/or on the rise fueling concerns that not enough is being done to implement best practices in inclusive education and consider the multiple intelligences many children with special needs have while ensuring a more balanced approach to their education.

Maryland is raising the bar yearly requiring counties to improve the numbers of children with disabilities spending time in general education classes for more than 40-80% but the question is how are the counties fulfilling these requirements? Are counties following the guidelines provided by the Blueprint for Change when improving their LRE data or not? The answer to this question has dramatic impact on all students’ quality of education as research shows that placing a child in general education is not equivalent to inclusive education. Unfortunately, too often, placements in general education environments that do not implement best practices in inclusive education are reinforcing the argument that “inclusion doesn’t work”.

Do you know of similar discrepancies in your states? If so, can you give us examples and/or possible explanations? Do you think this is a state/county leadership issue, a state/county systemic issue or both?

We welcome your thoughts, ideas and hope we can develop a productive discussion around this and future subjects. Quality research provided will be included in a database to be accessed on this website by anyone interested. We will not share e-mail addresses or other information unless given permission. Please let us know if you want your comments/information to be uploaded as an anonymous source. If you prefer, feel free to e-mail us at codedgenerations@gmail.com but please understand that although we will read each message we do not have the capacity to respond to all your e-mails at this point.

I read as much as I can that comes my way on the internet regarding disability issues and have an ever growing favorite list of articles to reference but I would like to start the first blog of 2012 on our Coded Generations site by referencing Amelia’s story which has recently attracted an incredible public outrage and rightfully so: http://www.wolfhirschhorn.org/2012/01/amelia/brick-walls/. So many found it unbelievable that we live in a society in which some doctors and institutions charged with our “well being” exercise “god” like powers in denying a little girl born with Wolf-Hirschhorn Syndrome the right to live excluding her from a transplant waiting list because she was expected to continue life with an intellectual disability (“mental retardation” on the forms presented to her family). Her story, although incredible, is not an exception but the unfortunate reality for too many. But there is hope as social media finally empowers parents like Amelia’s to fight a system they would have no chance to do so otherwise: http://www.washingtonpost.com/blogs/on-parenting/post/denying-an-organ-to-a-mentally-retarded-child/2012/01/17/gIQAR5i25P_blog.html 

The question I have is: why do these parents have to deal with something so outrageous like this in the first place? Don’t you think that we, as a society, have a real problem when decisions made to care for children with disabilities are based on their perceived future contribution?  I think the situation gets even worse when thinking about some service providers in health and education with such low expectations of children with disabilities that prohibits them from seeing any value in “investing” effort and resources. The unfortunate reality is that far too many still do not see the value of a human being unless they have a high probability of contributing “productively” to society (although nobody defines expected productivity for the kids without disabilities). On top of this, add plain ignorance as so many ignore the growing evidence that shows the great achievements children and young adults with all kinds of disabilities are capable of when given access to real “appropriate” supports & accommodations, when enabled to attend school with their non-disabled peers and work in “real” workplaces. There are many examples to support this but if you have a moment I encourage you to check Carly’s Blog: http://carlysvoice.com/ and see what she can finally communicate to her parents, family and the world: http://www.youtube.com/watch?v=vNZVV4Ciccg.

The question many have, which bothers me the most, is “how much is it worth investing in children with significant disabilities”, what is the “appropriate investment” in those whom so many see little value in “investing”?  I think the answer should be “as much as it takes” to give them fair access to learn and grow just like all others have since day 1 of their lives if we want them to succeed.

It took a law to invest in adapting buildings to give people in wheel chairs but don’t we all benefit from this investment when we push strollers and shopping carts? “We” invested in captioning TV programs for people with hearing disabilities but don’t we all benefit when watching news in airports, rail stations, restaurants/bars and other public areas? “We” invest in studying Alzheimer like conditions and heart defects in Down syndrome but won’t millions of others benefit from the results? “We” invest in Universal Design for Learning (UDL), developing more inclusive educational environments for children with disabilities but won’t all children benefit from having instruction delivered in different forms and using a variety of materials to making learning more exiting and reachable for all? “We” developed Positive Behaviors Interventions and Supports (PBIS) for managing behaviors of children in school with these challenges but once PBIS is implemented school wide all children benefit from a more positive school culture, reductions in suspensions and bullying as well as more teacher instruction hours that leads to better quality education overall. 

Since it seems that investments made for people with disabilities has potential for improving everyone’s quality of life perhaps it is easier to define “appropriate”  as what  it takes to enable those children access real education , proper medical care and ultimately to the same quality life as others?  Don’t we owe those children, their families, their friends and society at large our best efforts in developing a truly inclusive society that takes into consideration their challenges and allows them real access to developing and exercising their abilities to the fullest extent possible?

I strongly believe in J.F Kennedy’s quote that “Children are the world’s most valuable resource and its best hope for the future” and like to believe that by “children” he meant ALL of them with or without challenges. 

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!

NBC WashingtonDC

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!