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.

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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.

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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.

 

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Saving IRIS…one more time

About a year ago, in my role as a member of the Board of the Autism Society of South Central Wisconsin, I joined with other disability advocates to encourage the Joint Finance Committee to reject Governor Walker’s budget proposal to eliminate IRIS, which stands for, “Include, Respect, I Self-Direct.” IRIS is 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.

Save Iris

We were partially successful. Both the Joint Finance Committee and the Wisconsin legislature rejected Gov. Walker’s radical upending of Wisconsin’s long-term care system. However, in doing so, the budget which ultimately passed directed the Wisconsin Department of Health Services to obtain public input and propose a new system that would be managed by private health insurance companies, instead of the current non-profit care management organizations. This has become known as Family Care/IRIS 2.0.

Yesterday, I co-signed a letter from the three Autism Society affiliates to the Joint Finance Committee in which we state that we:

do not believe the Department of Health Services has justified the disruption of care to the 55,000+ people currently enrolled in Family Care and IRIS programs.

Specifically, we are concerned about:

  •   The uncertain future of self-direction and the IRIS Program: The concept paper does not reflect the level of self-direction of the current IRIS program. There remain significant questions as to how current IRIS participants will experience self-direction as they do now.
  •   The uncertain future of Behavioral Health Services: The concept paper is lacking details on how behavioral health services may be integrated in the new model.

    We also share many of the conclusions made by the Wisconsin Long Term Care Coalition in their Analysis of the Numbers behind Family Care/IRIS 2.0 on May 11, 2016.

    Given that there are no projected savings in long term care as a result of Family Care/IRIS 2.0 and there are still significant questions about the concept plan, we believe that moving ahead at this point would unnecessarily disrupt the lives of over 55,000 Wisconsin residents.

    We are writing to ask members of the Joint Finance Committee not to move forward with the Family Care/IRIS 2.0 concept plan as currently written.

The good news is that since Family Care and IRIS operate under a federal Medicaid waiver, they cannot be modified without federal approval. The Walker administration has already conceded that it understands this cannot happen until at least 2018. Hopefully, the next President will accept the recommendations of Wisconsin elders and people with disabilities, their families and friends, who are generally satisfied with the current Family Care/IRIS long term care system and do not want their lives disrupted, their independence lost, and their futures controlled by for-profit health insurance companies.

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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.

 

 

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.

Self Advocates

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.