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.

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.

Speaking Truth to Power

Yesterday, I participated in the Autism Society’s Day on the Hill, during which advocates from all over the country met with their members of Congress to advocate for better health care and education for people with autism. We had a strong Wisconsin delegation which was able to meet with almost every member of our Congressional delegation to express our concerns about possible changes to the Affordable Care Act, Medicaid, and special education. We also asked each of them to join the bi-partisan Congressional Autism Caucus, which has well over 100 members.

Brian Beeghly, Mary Fruits, Emily Levine, Kirsten Cooper, Howard Miller and I prepare for our Autism Society advocacy with the Wisconsin Congressional delegation.

Since I have been doing public interest lobbying at both the federal and state level for over 30 years, the less experienced advocates on our team asked me to brief them about each member of Congress prior to each meeting. Before we met with Rep. Glenn Grothman, I told my colleagues that I had known him for many years as although this was just his second term in Congress, he had served in the state legislature for many years prior to that, and during that time, I had met with him many times. I further informed my colleagues that they should expect him to ask an outrageous question.

Mary Fields, Kirsten Cooper and I emerge with smiles after meeting with Rep. Glenn Grothman.

Sure enough, almost immediately, Rep. Grothman walked into his office where we were already sitting down with his legislative assistant, and recognized me and said:

I have to ask you a question. Do you believe that vaccines cause autism?

While I could not have predicted exactly what outrageous question Rep. Grothman would ask me, I had anticipated that he would ask an outrageous question. I could have demurred and said that this was not what we had come to talk to him about as it was not one of our issues, but my past experience with Rep. Grothman was that he would not give up until he got an answer to his question. So, I replied by saying:

No, I do not believe they cause autism.

Of course that did not satisfy Rep. Grothman, so he persisted by asking:

How do you KNOW they don’t?

So, I replied:

You asked me if I believe they cause autism. I do not BELIEVE they cause autism because science has not demonstrated that they do.

I then proceeded to put him in his place by telling him the story of my brother who died from a pertussis vaccine in 1966. We know this because science proved it and Congress passed a vaccine compensation program for such medical mistakes. I further informed him that fortunately our son was born after scientists developed a dead virus vaccine which is safe so we could give it to him. I closed with informing him that people who do not give their children vaccines are bringing back diseases into our community and they are a public health menace.

By the time I finished, Rep. Grothman recognized that he was not going to win this argument and our meeting was able to continue in the manner that we desired by discussing the issues that we came to talk about. The lesson, of course, is that well prepared advocates will not get thrown off by those in power who choose to pursue an irrelevant agenda. By speaking truth to power, I was able to provide both personal and fact based information to Rep. Grothman and steer the meeting back to what we came to talk about.

While many politicians thrive on intimidating others, it is worth remembering that they are just human beings like every one of us, and treating them as you would treat any other human being helps advocates speak to their legislative representatives as equals, instead of being intimidated by them.

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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.

 

Celebrating Independence Day–Escaping Institutionalization

In a recent case of mine, frantic parents retained me worried over the future of their son, who has autism and challenging behaviors.  Equally troubling was their fear that government overreach was in the process of removing their parental rights.

These parents had done everything they could to help their son succeed at home and in school, but due to state funding limitations of the Children’s Long Term Care waiver, in-home services declined and then virtually disappeared over the past year. Not surprisingly, this evaporation of critical child and family supports resulted in a downward spiral.  First, in mid-fall, the school district determined that it could no longer educate the boy in school and started providing his education in the family home.  Then, the boy’s challenging behaviors escalated.

As the parents sought answers, they received recommendations to send him to a state Institution where the state no longer admits long admits long-term residents, but does provide 30-60 day assessments to, in theory, help families in situations such as these.  Unfortunately, my clients’ decision to send their son to an Institution developed into an over 5 month stay there because the County determined that it needed to take over parental medical decision making and further determined that the child was not fit to return home.  The County pursued this case in court seeking to send the boy to another Institution 4 hours from his home, without a plan for returning him home.  The County even took the drastic step of seeking transfer of medical legal custody of the boy from the parents to the County.

The parents retained me only a few weeks before the scheduled 1/2 day trial. Initially, I contacted the county’s attorney to determine whether settlement was a possibility. Sadly, the County was unwavering on its Institutionalization path and had no interest in settlement.

As the trial began, my first witness was the child’s pediatrician who was strongly supportive of returning the boy home to his family and fully supported the parents’ medical decision-making.  Initially, I felt a need to rush through the case because the court had only allotted a few hours for the trial.  Fortunately, the judge quickly realized that this case was too important to rush and announced that he had cleared his calendar for the following business day as he knew we needed to carefully put on all relevant testimony.

Another compelling witness was the boy’s 17 year old brother.  He told the court that he was the only one who could get his brother to talk and calm down and that he had no regrets that he needed to spend most of his non-school hours at home helping to care for his brother.

For its part, the County only put on 2nd hand hearsay testimony (allowed in these types of cases) critiquing the parents’ caregiving.  While it did not budge from its Institutionalization position, the lead county social worker did testify that if the boy returned home, he would need ample in-home services.  Sadly, the Guardian ad Litem (GAL) supported the County’s Institutionalization position.

When the judge announced his decision, he concluded that the parents’ first-person testimony, from themselves, their son, and their pediatrician, far outweighed the county’s second hand testimony, and convinced him that the boy should be returned home with the ample home-based services which the county social worker testified were necessary.  The parents were elated and his father can proudly state that his service to our country in the armed services is that much more meaningful as the family celebrates a very meaningful Independence Day in their home today.

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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.