By: Allison Wohl
Several of our coalition’s partner groups had a discussion recently where we tried to define the three largest barriers that citizens with disabilities face in our country today. Our conclusion was that low expectations leads to segregation, which leads to permanent and intractable poverty. According to the US Department of Labor, Americans with disabilities have been the poorest minority group for the past ten years in a row. If low expectations lead to segregation, where do we begin to break down these barriers in our system of public services and supports? Just follow the money.
My son, who has Down syndrome, turned four last week. He is in a segregated public preschool class comprised of students with disabilities who have Individual Education Plans (IEPs). Because of federal funding mandated by the Individuals with Disabilities Education Act (IDEA), these classes must exist. Our county does not have a universal preschool program, so a segregated program is the only public option where he can receive the supports and services that he needs. We will push to have him integrated into a typical classroom through elementary school, but that will be increasingly challenging for the schools as he gets older. Ninety-five percent of students with intellectual disabilities in this country are educated in segregated classrooms apart from their typical peers. Segregated education prepares students for segregated working environments. It also sends the message to other students that students with disabilities are different and need to be educated separately—what is often referred to as the “tyranny of low expectations.”
When my son ages-out of the youth system, he will enter the adult system. Many funds intended to support individuals to live, work and engage in their communities continue to be misdirected to services that produce the exact opposite outcomes. As a result, thousands of individuals continue to receive services that result in further segregation, impede individual progress, and create additional barriers for individuals to successfully participate in society. Again, the belief that young adults with disabilities cannot work is used to validate their segregation—and pay salaries below minimum wage. The businesses that serve this population receive federal dollars to do so; integrating this population would mean changing their business models, which they are loath to do.
These vulnerable and capable citizens are trapped in lives of isolation and poverty. Both the legality of sub-minimum wage and the outdated income restrictions of Social Security make it impossible for them to earn and save, making the poverty intractable.
The laws and attitudes that both support and trap citizens with disabilities were created for generations and expectations that have proven to be outdated. The civil rights of other minority groups have been championed and extolled. Systemic and societal discrimination against Americans with disabilities is still accepted and acceptable in this country. It is time to modernize our systems and fold the nearly 4.6 million citizens in this country who live with intellectual and developmental disabilities into our communities, our workplaces, our classrooms and our economy.
Allison Wohl is the Executive Director of the Collaboration to Promote Self-Determination (CPSD), a coalition of 21 national disability groups advocating for modernization of outdated and fragmented systems. Like CPSD on Facebook to learn more or engage them on Twitter.
Zeh Lezeh (For One Another) 
I am so glad you posted this today. I have been trying to explain to people what it feels like to have an LD and it’s not just about how the LD looks from the inside out. It is about the segregation, the emotion, the poverty, and the expense of disability. I content that there is no such thing as a free public education for students with disabilities because we a attached to some type of service. I have also tried to explain to others that even the most “cost effective” program can be crippling to an already struggling parent. Wonderful post! Thanks so much!
Although I agree with the spirit of this article, I do believe that the public school system in our country is addressing the issue of inclusion. Ms.Wohl states that 95% of students with intellectual disabilities are in segregated classrooms apart from their typical peers yet the 2005 study which she cites states the exact opposite. “According to the U. S. Department of Education (2002), approximately 95% of special education students with disabilities have been receiving their special education services in general education classes and contexts for at least 80% of the day.” Her argument though, does hold true for most of our Jewish day school system which continues to hold by the “old school thinking” of separate but equal. Jewish Day School principals continue to shirk their responsibilities by not creating inclusive educational environments in their schools. At most we find the Jewish community has created the “school within a school” model. This model allows for a special education entity to come into a school and say “we will work with the school to allow for segregated classrooom settings within your school and please allow us to integrate those students in specific areas which won’t infringe on your teachers class.” The time has come to shift the reponsibility of these special education entities back into our dayschools by saying we will work with you to create inclusive classroom settings by doing inservice days for your teachers on differentiated teaching and project based learning methodologies. We will use our knowledge and resources to strengthen and work with your repective school so that all our Jewish children and their families who seek a Jewish education will feel they have a place in our Jewish schools.
We will do this because in this instance instead of following our Jewish traditions and being ohr l’goyim, a light onto other nations, we need to be k’chol Ha’goyim, like other nations and try to create 95% of our students to be included in our classroooms because studies have shown that this is what makes for the best learning environment for all our students.
Thank you for your post. Let me clarify what this statistic means. Talking about general education “classes and contexts” leaves a lot of latitude. “Contexts” can mean eating lunch, having “health” or “art” class, but it does not go to grade-level academic content in grade in which the student is enrolled. Context can mean, as you state, being in the same building but in a segregated “learning center”. It is a rare school that has a co-teaching model or uses Universal Design for Learning (UDL), where students with intellectual disabilities learn alongside their typical peers with modified curriculum. In fact, inclusion rates in public schools have been going down since the mid-1990’s when they were at their peak. The “school within the school” model that you reference is very typical in public school settings. There is also the issue of the Alternate Assessment on Alternate Achievement Standards (AA-AAS), which effectively throws students out of the general state testing and thereby absolves the school district of accountability for the academic growth of these students. Once a student takes an alternate assessment, it is nearly impossible for him or her to earn a high school diploma, which is an unconscionable consequence of these decisions. Schools tell parents that they can always get back into the regular testing pool but this is not so. This often happens with a child’s kindergarten placement, rendering the student unable to pursue a high school diploma as early as preschool. We know the outcome statistics for students who don’t have a high school diploma.
You are exactly right, Allison. The truth is that inclusion is considered inclusion if they can eat lunch together. I fought it for years in the education of my son. He graduated in 2010 and his inclusion occurred only because I was “a troublemaking mother” who had to stay in the school and be constantly advocating. Parents who are intimidated by the system find themselves settling for less than full inclusion. I am encouraged after two meetings with Michael Yudin, Acting Secretary of OSERS in Washington DC to report that OSERS in Washington is very well aware that inclusion at the local level is working at less than ideal and they are working to push the concept harder than ever. Mr. Yudin gets it. Parents of small children must NOT accept anything less than full inclusion and should be willing to sue systems in federal court to make the point. There are advocacy organizations who are looking for cases to push, but until parents open their mouths, cry foul and not be fearful of bucking the system, permanent change will never happen.
I read this letter from Zeh LEzeh with mounting trepidation.
My son, when he was 3yo, having been identified with DS , was able to access a preschool program for children with labels (disabilities if you will). He shared a school building with children in HEadStart. But even at age three, the differences in his needs and the children in HEad Start was very noticeable. My son didn’t walk yet. He needed to be carried or was in a cart to get from activity to activity. When put on the floor to ‘play” he sat and observed. Would he have been served better in an integrated classrrom? Could he have been served in a way to benefit him. ? I doubt it.
So following the thinking of 25 years ago, I poushed and prodded for him to be included in regular Kindergartedn – and he was- along with a co-teacher. HE was either pulled out or in group for speach and OT, PT – often having to take the place of recess or reading sessions with his class. Did this benefit him or the other students? So they knew him and so him as less able then themselves – lovingly- but still less able. Was that good for him? Did it benefit him?
We did the same push for inclusion for first grade and then for 2 years of second grade. Byt third grade, we saw that this ‘inclusion;’ modle – no matter how skilled the instructors, was not meeting his needs for small class, quiet, individual instruction. We were proving apoint, but our son was suffereing. Third grade was the last time he was included in regular instruction.
After this year, all his academic instruction and life skills were taught in a separate class. HE joined his age peers for Art, music, and for a time PE> IN middle school he joined for ‘specials’, not PE (he really needed an adapted program and again – small class, individual instruction) and SOCIAL STUDIES – with a wonderful teacher determined that he would succeed.
The rest of middle and highschool was spent in segregated classes where my son could get the individual attention that he so desparately needed.
He is now 28 yo. He lives in a townhouse he rents with his friend/companion/caregiver whom he pays with his MEdicaid waiver. While he had a job briefly before the down turn in economy, in the public economy, he now confines his efforts to helping elderly folks in his community with chores and helping them with what ever they ask of him. He does not get paid in coin – which he doesn’t understand anyway, but in invites to dinner, a baked pie or sometimes just a hug. He loves his work – and asks each day what the calendar schedule is for work.
What I mean to say by this way to long message, is that weach of needs to be aware of the varieties of ways our children learn and the varieties of things there are to do to be part of a community.
<My dream when my son was 3 was that he would have his own home, and be able to work at things that satisfy him./ But my vision never encompassed what is a satisfying life as he sees it. But he has it! His face and demeanor tell me he loves his life.
sarachaya,
Thank you for your thoughtful response. As a fellow parent of a child with Down syndrome, my intent is not to judge other parents for the loving choices that they have made for their own children but to educate families that there are other options than the current (and pervasive) model of segregated education and “work”. What we are trying to do is to expand options to families of loved ones with intellectual and developmental disabilities and to petition our state and federal governments to alter the funding streams so that an agency or school district should have to prove why an individual should have a more restrictive placement. The current system has a built-in institutional bias, in which an individual must “waive out” of a more restrictive (and substantially more expensive) placement, rather than the opposite. It makes more sense that one should have to prove WHY an individual should need a more restrictive service option.
My dear friend and colleague, Ari Ne’man once said that “we make adjustments and accommodations, we add services and we individualize programs as necessary–but the point of what we are doing is not to create something special. It is to create something equal. Justice, not charity.”
Incidentally, these principles don’t change based on severity of disability. Our system presumes the incompetence of individuals with disabilities, when in fact, it should presume competence.
There’s a lot of talk lately of inequality and, just this morning, NPR began a series on the anniversary of the War on Poverty (focusing on a county in my home state). Thank you for bringing attention to our fellow citizens who have languished too long in poverty.
Thank you. Wonderfully written. I agree.