January 22, 2025
Sitting Pretty (but Vigilant) in Wisconsin
Jason Stoffer
Here we go again, and hopefully for the last time. The Wisconsin Legislative Session has officially begun and after six long years of trying to get a spinal cord injury research grant bill enacted, we are sitting as pretty as we ever have. Hopefully we can escape the fate of Sisyphus and finally be rid of this boulder!
Here’s a quick refresher of our advocacy campaign in Wisconsin thus far: a group of stalwart advocates have been showing up for years now to educate legislators on the “joys” of living with a spinal cord injury.
They’ve cited the quality of life costs to our community (severe secondary health conditions, reduced lifespan, lack of independence, etc), the taxpayer cost of supporting our population ($250M/year in Wisconsin alone), the loss of opportunity (in certain careers, financial/earning power, recreation, etc), the slow pace of research and the systemic friction preventing faster interventions for functional recovery. Most importantly, our advocates have put a real-life face to the one sheet summary we hand to staffers and lawmakers at every legislator meeting.
Above, a slide illustrating that friction I mentioned, from Dr. Vance P. Lemmon’s article, “What does ‘Disruptive’ mean? Thoughts on the NIH SCI 2020 meeting.”
Our current bill, originally crafted in 2018, which has undergone very few revisions since then, seeks to address the concerns outlined above. It will enact a competitive grant program, focused on innovative work in functional recovery. It puts an 8% cap on non-research administrative costs which have sometimes risen to 55% of a grant when left unchecked! Most importantly, this bill ensures that those with lived-experience will be decision-makers alongside researchers and clinicians in peer review and administration.
Our Wisconsin CAN advocates’ hard work culminated in a 93-3, yes-no roll call vote on the assembly floor last year. We were CERTAIN that it would be just a matter of process to pass in the Senate, but we came up short at the 11th hour.
Above is a representative sampling of the advocates who’ve been working diligently on our $3M SCI Research Grant legislation in Wisconsin. Not pictured: the Messling and Rammer families.
For this session, here are some things to be excited about:
- This team is DEEP with motivated, savvy, knowledgeable and articulate advocates. We’ve suffered and celebrated together. We’ve cut our teeth in legislator meetings, committee hearings and strategic tactics.
- We are proud to have the support of the American Legion and the Paralyzed Veterans of America again this year. Our Veteran community “gets” the particular significance of this work for the spinal cord injured in their ranks as well as non-vets.
- There has been a shift in the party makeup of the legislature. It has deviated from being a “supermajority,” making it a touch more balanced. With a bill that is quintessentially bi-partisan, this party balance should work in our favor.
- We have allies in some new, key leadership positions in the Senate and Assembly. For example, our supporter, the pragmatic Senator Mary Felzkowski was elected Senate President!
- We’ve gotten enthusiastic support (beyond co-signing) from lawmakers including one Assemblyman who benefited from our bill in Minnesota!
- There have been very few detractors regarding this legislation, but we were fortunate to have lost a couple in this last election cycle.
- Governor Evers has agreed to include us in his budget this year, so we will have some redundancy in our chances for success.
- One major holdup for us last year was the pointless languishing of the purse-string holding Joint Finance Committee (JFC). Well, Governor Evers brought a lawsuit against the JFC which could require the powerful committee to operate with more efficiency this session.
Unfortunately, it's not all roses.We lost a fierce advocate to the last election cycle, Representative (and quadriplegic) Jimmy Anderson. We are so incredibly thankful for his work and previous authorship of this bill. We hope that this break from legislative work provides him some well-needed downtime and we wish him luck as he opens the next chapter in his career.
Representative Jimmy Anderson (center) was the original champion of our SCI Research Grant bill. Here he is at a press conference where he introduced our bill back in July of 2019.
As I said at the beginning, we are sitting pretty, but need to stay vigilant. We cannot let our guard down. You can expect to be called on in the near future for key strategic actions, such as writing and calling these WI lawmakers on behalf of our community. We have a series of meetings scheduled with various legislators and committee members in the next month and we’ll need your support.
Looking forward to getting back into the fight with you!
