Stop Paternalizing Children with Disabilities

In the many years I have advocated for children with disabilities, I have frequently encountered those who purport to care so deeply for children with disabilities (rarely their own) that they support methods of care and support and even legislation that purports to protect these children, but when analyzed more closely, does a great disservice to these children by preventing them to live as fully and independently as possible.

My advocacy has included combatting paternalistic policies and practices including segregating children with disabilities in separate schools, which prevents them from making friends with non-disabled children who will help them with sustaining networks in their adult lives.  Even worse, is institutionalizing children with disabilities under the guise of protecting them, but ultimately ruining their chances to live free and independent lives.

It has recently come to my attention that under the guise of helping students with disabilities, Louisiana’s legislature is proposing 2 bills that would undermine those children’s access to a quality education.

House Bill No. 993 contains the following highly damaging provisions:

  1. Waives the requirement that students with disabilities must meet state and local performance standards in order to graduate high school;
  2. Waives the requirement that students with disabilities must pursue the same “rigorous curriculum required for his chosen major by his school as approved by the State Board of Elementary and Secondary Education,” as all other students.
  3. Waives all state and local graduation requirements for students with disabilities.
  4. Waives the requirement that students with disabilities (along with all other students) must read at the “approaching basic” level on either the English/Language Arts or mathematics component of the 8th grade state assessment, as well as the other objective criteria established by the local school district, in order to be promoted from 8th grade to 9th grade.
  5. Waives the requirement that students with disabilities (along with all other students) who score at the unsatisfactory level on the state assessment, must complete a summer remediation program in that subject area in order to complete a high school major in that subject area.
  6. Provides that all pupil grade progressions for students with disabilities shall be determined by the child’s Individualized Education Program (IEP) team.
  7. Provides that if a pupil with disabilities meets her IEP goals, she can receive a high school diploma.

House Bill No. 1015 goes even further down the road of degrading the education of children with disabilities in the name of protecting them.  It would:

  1. Exclude children with disabilities from the same grade promotion standards as all other children and simply allow their IEP team to determine whether to promote the child to the next grade.
  2. Excludes all state and local assessment scores from children with disabilities from the state’s accountability system.

While some may believe that these provisions serve to protect children with disabilities, my experience has demonstrated otherwise.  If these bills pass, Louisiana will be able to graduate its children with disabilities after 12th grade, even though federal special education law clearly allows students with disabilities who need up to 3 more years of education to receive those critical additional years of education.

Furthermore, these bills will make it impossible for parents of children with disabilities to determine how well their school districts are educating their children.  Parents and advocates of children with disabilities fought long and hard for the federal law provision that requires schools to educate children with disabilities in the general curriculum.  These bills take Louisiana down the road of a separate and unequal education for children with disabilities.  This is particularly troubling because the vast majority of children with disabilities are of average or greater intelligence.  Why take those students out of the the accountability system unless Louisiana simply wants to wash its hands of its responsibility for them?

The National Center for Learning Disabilities published an excellent report about the low graduation rates of children with learning disabilities (who by definition have average or greater intelligence).  That report reveals that Louisiana has the 2nd worst graduation rate for such children in the nation (only Nevada is worse).

This graph shows how badly Louisiana’s students with disabilities are faring when it comes to graduating from high school.  As you can see it fares poorly in comparison to both national and other state data.  Indeed, currently more students with disabilities drop out of high school in Louisiana than graduate.

HS graduation rate graphIf these bills pass, Louisiana will look like it is graduating the most students with disabilities even though it is providing less education to them.  Parents and advocates of children with disabilities cannot allow this to happen. Indeed, my fear is that if it happens in Louisiana, your state could be next.  For that reason, national disability advocates should weigh in to oppose these problematic bills.

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For more information on how I can help you accomplish effective, progressive systems change contact Jeff Spitzer-Resnick by visiting his website: Systems Change Consulting.

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Inclusion as a Path to Friendship: Time to End Segregated Schools

During the past few weeks, I have been blessed to reunite with old friends going back over 3 decades.  In England, I reunited with friends from England, Scotland and France, with whom I worked as a volunteer on Kibbutz Ein Gev in Israel during the winter of 1979-80.  In Idaho, I reunited with an old high school friend who lives in Delaware now, as we hiked in the White Cloud Mountains.

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These reunions helped me recall how important friendships are not only in my own life, but how critical they are for anyone who desires to live a fulfilled life in what can often be a challenging world.  Yet, through my many years of advocacy for children with disabilities, I have learned that one of the biggest challenges for them is whether typically developing children will welcome them into their circle of friends.

In their book, Friends and Inclusion, the authors correctly describe a significant flaw in our disability service system:

People who are at risk are often seen by the public, community organizations, and families as first and foremost needing services and the help of professionals. While this response is sometimes useful, it can impede the development of meaningful friendships. Our society for the most part still assumes that people with disabilities mostly require services rather than a rich life in community with friends.

They go on to point out that:

The opportunity to have real friends occurs through participation in family, school, neighbourhoods, and other places where people gather. Real friendships are genuine caring relationships where people share common interests, love and respect each other, and want to spend time together. Contrary to the idea that these kinds of friendships can only happen naturally, our experience is that discovering and building real friendships often requires intentional or deliberate action.

Recently, a child therapist who works with many children with disabilities expressed shock to me that Wisconsin still has publicly funded segregated schools in which all the children who attend those schools have disabilities.  Indeed, there are 3 such schools, Lakeland School, in Walworth County, Syble Hopp, in Brown County, and Fairview South, in Waukesha County.  While these schools and the parents who send their children there will certainly extol their virtues, among the reasons I have represented many parents who do not want their children with disabilities to attend these segregated schools, is that they deny the opportunity for their children to make friendships with typically developing peers.

As educator Helene McGlauflin notes:

Establishing friends for students with severe and profound disabilities is best done intentionally. Like most schools, our school has always grappled with how to integrate students with very special needs into the regular classroom and the entire school with dignity, respect and an awareness of their particular educational needs.

Purposefully creating a group of friends for each student has given our inclusion efforts more structure and focus. It has required special education teachers and regular education teachers to more carefully coordinate when, how and why the special needs students are in the classroom, examining times and activities when the friends can help with the integration process.

Thus, placing children with disabilities in segregated schools denies them the opportunities to make friendships with typically developing peers.  Indeed, this can have long lasting economic and safety implications, as it is common knowledge that most people gain economic success through networking with friends, and it is far more likely that a friend will assist a person with disabilities in a time of need than a stranger.

In the name of friendship, which we all treasure, it is time to end the public funding of segregated schools.

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For more information on how I can help you accomplish effective, progressive systems change e-mail Jeff Spitzer-Resnick or visit Systems Change Consulting.