Advocacy, Advocacy and Advocacy Again!
I have always admired the rights and liberties the American people enjoy but it has been only a few years since I understood that it is the people who made it all possible through their incredible volunteering and advocacy efforts. While many Americans regularly engage in advocating for rights in all kinds of areas of interests of their own choice, those of us connected with individuals with disabilities do it as a chronic need! During my Parent Leadership training with Maryland Coalition for Inclusive Education, I have learned that at the time I was born, children with disabilities like my son were placed in institutions and it is only since 1975 that the Education of All Handicapped Children Act was voted into a law, renamed IDEA in 1990, giving our kids the right to free public education like any other child in this country. There really have been no more than 50 years of incredible advocacy efforts that enable us younger parents to send our children to neighborhood schools and demand appropriate education for them. Although progress has been made, things are not as great as I would hope.
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!
