Sensory Summer

Since last fall, I have been engaged by the Madison Children’s Museum (MCM), to help facilitate the implementation of a generous 3 year grant it received to improve its services to children with autism and other sensory processing disorders and their families. This has been a unique opportunity to bring together parents, self-advocates, providers and educators to engage with MCM staff in order to map out a strategy that will not only improve MCM’s services to this group of children and their families, but to provide a national model for other museums to improve their services.

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After my first meeting with MCM staff, I noticed this light on the main floor of the museum and it truly represents the vision of the incredible staff with whom I work on this project . Deb Gilpin, the Executive Director, has been very supportive of this truly unique project. The project lead, Sandra Bonnici, pours a tremendous amount of effort and passion in order to make sure this project succeeds. She considers it, “a great opportunity to truly understand community aspirations and challenges for people on the spectrum and their families and to collaborate with the ASD and SPD community improved experiences and genuine inclusion for these children and families both at MCM and within the museum field.”  Her very capable colleagues, Heather Davis, Kia Karlen and Anneke van Lith, have provided the support she needs to carry this project to fruition.

After getting substantial input from the Advisory Group, MCM staff realized that the museum needed to conduct an assessment of itself in order to determine both its strengths and weaknesses when serving children on the autism spectrum and their families. Fortunately, the enthusiasm of the Advisory Group has resulted in a steady flow of participants eager to help with that assessment. University of Wisconsin Professor Karla Ausderau has recruited some of her students to help with this assessment, which will include gathering information from museums around the country to determine what they are doing in terms of serving children on the spectrum.

In additional to a professional assessment, Dr. Ausderau recommended that we use the museum itself as perhaps the most critical assessment tool. As a result, the museum is now engaged in planning a Sensory Summer. While the museum is still working out details and will get more input from the Advisory group, the basic idea is twofold:

  • Provide free passes to children with autism and other sensory processing disorders and their families over the summer and request that they fill out on-line or paper surveys to let the museum know which parts of the museum work well for them and which do not. Of course, the museum will also seek information regarding suggested improvements which it could make to enhance the experience of these children and  their families; and
  • Schedule 4 sessions when the museum is normally closed (early weekday evenings and weekend mornings) to allow children on the spectrum and their families to enjoy the museum without the normal chaos of many other children participating in the many activities which the museum has to offer. During these sessions, the museum will create some quiet and sensory spaces and provide some assistive devices that may help some of these children enjoy the museum more. The museum will also engage well trained friendly observers to make note of what works and what does not work with the children who attend these sessions.

Before Sensory Summer begins, we will engage a planning committee composed of volunteers from our Advisory Group, and the museum will contract with an expert trainer to provide basic autism and sensory processing training to its entire staff.

In my nearly 25 years of disability advocacy experience, this is the deepest engagement I have seen a non-disability public entity voluntarily take on to better serve a generally underserved group of children and their families. This is truly systems change at its best. It is voluntary, enthusiastic and inclusive. I am truly honored to help the Madison Children’s Museum become a national (and perhaps international) model for how to best serve children with autism and other sensory processing disorders in a public museum setting.

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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 in the Family

We all have telephone calls we receive that we never forget. Two calls which I will never forget came from my brother-in-law and sister-in-law, Jeff and Miriam. The first call informed us that their 4th child, Arielle, was born, which was wonderful. However, they reported that Arielle had a stroke in utero which resulted in cerebral palsy.

Much to the credit of Jeff and Miriam, they were determined that Arielle would get the medical and therapeutic care that she needed, as well as a high quality education. Her 3 older siblings, were very supportive, and the family included Arielle in all their travels and adventures. Although the cerebral palsy weakened Arielle’s right side, she persevered and participated in all the physical activities at school and in the neighborhood park, as well as the many hikes her family enjoyed.

Her mother, Miriam, is a Rabbi, and her father, Jeff, is a Jewish educator. They made sure that she got a high quality Jewish education, including learning the Hebrew language and prayers, and most important of all, Jewish values.

When Arielle was growing, she often needed to use a brace to support her left lower leg. This made her disability visible to others, including some neighbors, who created the reason for the second call that I remember so clearly. Apparently, a neighbor did not think it was appropriate for Arielle to ride a bicycle like all the other children her age, so she called the police. The police, in turn, contacted child protective services (CPS), who contacted Jeff and Miriam, to investigate. Jeff and Miriam called me for legal advice and I supported them in being completely honest with the county social worker to inform them that they wanted Arielle to have all the joys of childhood and that she was perfectly capable of riding her bicycle regardless of the misperceptions of their neighbor. Fortunately, CPS closed the case without further action.

Two years ago, Arielle and her parents moved from Massachusetts, where she had lived her entire life, to Greensboro, North Carolina, which was a challenging change for Arielle. In addition to a significant cultural change, it required her to make new friends and navigate around a brand new school. A couple of weeks ago, my wife and I were pleased to travel to Greensboro to watch Arielle receive her diploma with a variety of academic honors, from Grimsley High School.

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Arielle in cap & gown with her parents Jeff & Miriam, and sister Leora, who recently graduated from Washington University.

The graduation took place in the evening. After the graduation, the school held an overnight alcohol-free party for the graduates. Arielle does not drive yet, so her mother took her to the party which started at 11 PM. Her parents assured her that they would keep their cell phones on overnight by their pillows in case she wanted to come home early.

My wife and I were staying in a guest house across the street from Jeff, Miriam and Arielle’s home. I am an early riser and shortly after I wake up, I meditate. While meditating, I relax my eyes and while they are often closed, occasionally they open. The morning after Arielle’s graduation, while meditating, I opened my eyes to see Arielle walking up to her house at around 6:15 AM, after being dropped off by a friend. That is a beautiful inclusive vision that I will never forget.

Arielle has been admitted to the University of Hartford, but she is contemplating taking a gap year before starting college. I am confident that whatever she decides, she will continue as she has done thought her life, to move through life with joy and confidence that she can and will be included in whatever she chooses to do.

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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.

Saving IRIS=Include, Respect, I Self-Direct

A few months ago, I joined the Board of Directors of the Autism Society of South Central Wisconsin (ASSCW). With my advocacy experience, I was quickly drafted to join an advocacy team that includes members from all 3 Autism Society organizations in Wisconsin, including the Autism Society of Wisconsin and the Autism Society of Southeastern Wisconsin. While we are working on many issues, one of the most critical advocacy issues for adults with autism as well as other people with disabilities and the elderly with long-term care needs, is Gov. Walker’s budget proposal to eliminate IRIS, Wisconsin’s self-directed, community- based, long-term care program for adults with disabilities & older adults with long-term care needs. People using IRIS have the flexibility to self-direct their plan of care within an authorized budget based upon their individual needs and desired outcomes. ​IRIS participants choose and direct the services and supports that make it possible for them to live, work, and participate in their communities- allowing more people to stay in their homes and avoid costly nursing homes and other institutions.

IRIS stands for, “Include, Respect, I Self-Direct,” so it makes sense that the Governor’s drastic budget cut inspired the creation of the Save IRIS organization which has helped to organize the fight to keep this incredibly successful program in place for the 12,000 people who use it to self-direct their long-term care.

Save IrisSince the Wisconsin legislature is controlled by the Republican party right now, the 16 member  Joint Finance Committee (JFC) includes 12 Republicans, who hold the key votes that will deterine whether or not IRIS will be saved or eliminated. So, yesterday afternoon, I organized a trio of advocates, including myself, a former special education teacher and former ASSCW board member, Char Brandl, and Abby Tessman, an IRIS participant to meet with staff for all 12 Republican JFC members.

As our marathon afternoon of legislative meetings evolved, it became clear to me how critical it was that Abby Tessmann, our IRIS participant team member, joined us. After all, the whole point of IRIS is that participants get to control their own lives. By clearly explaining to all 12 Republican JFC member offices, why IRIS was essential to her living as independently as possible, she evoked consistent responses from legislative staff that the Governor’s proposal to eliminate IRIS had caused their bosses serious concerns. Abby handed staff from each office her business card, indicating that she is an Advocacy Mentor. Abby is pictured on the right along with other great self-advocates involved in the Save IRIS campaign.

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By the time we finished our marathon session of 12 meetings, we felt confident that the Governor’s proposal is unlikely to pass. It remains unclear exactly what the legislature will do, however, so people with disabilities, their allies, families and friends, should continue to advocate for IRIS, the empowering program: Include, Respect, I Self-Direct. After all, isn’t that what all of us want?_________________________________________________________________

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

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.

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.