By Charlene N. Rivera-Bonet | Waisman Science Writer
At a Glance:
- WI LEND trains self-advocates – The Wisconsin LEND Program prepares individuals with disabilities to engage in policy discussions, giving them the tools and confidence to make their voices heard. Many LEND trainees participated in Disability Advocacy Day to speak with legislators.
- Medicaid at the center of advocacy this year – This year’s focus was Medicaid, a critical healthcare program facing potential funding cuts. WI LEND self-advocate trainees shared personal stories demonstrating how Medicaid supports independence, mobility, and essential care, highlighting the impact these services have on their lives.
- WI LEND helps build leaders – LEND peer mentors and training coordinators guide new disability advocacy trainees through self-advocacy skills, helping them grow into effective advocates beyond the program. Many WI LEND graduates continue their leadership educating policy makers at the legislative level, shaping policies that impact the disability community.
Every year for the last 13 years, self-advocate trainees from the Wisconsin Leadership Education in Neurodevelopmental and Related Disabilities (WI LEND) Program meet with legislators from their district to share their stories on issues that matter to them during Disability Advocacy Day. This year it was Medicaid.
Disability Advocacy Day, which was held on March 12, is organized by the Survival Coalition of Wisconsin Disability Organizations and is a day-long event in which individuals with disabilities first meet to talk about the issues at hand, then are divided in groups to meet with legislators from their district to share their stories and raise awareness. “There are a lot of facts, there are a lot of data. What’s most important is your story,” Patti Becker, Survival Coalition co-chair, told the self-advocates as they prepared for the meeting. Professionals like social workers or healthcare providers that offer services to individuals with disabilities also participated.
The issue at hand this year was the proposed cuts to Medicaid. Medicaid is a federal and state program that helps cover medical costs for some people with limited income and resources, including individuals with disabilities, offering benefits like high-quality health care coverage, long-term care, and other resources that promote physical and mental health and well-being.
More than 1 million individuals in Wisconsin use Medicaid and Medicaid-funded programs such as BadgerCare Plus, Family Care, IRIS (Include, Respect, I Self-Direct), Katie Beckett, Family Care Partnership, PACE (Program of All-Inclusive Care for the Elderly), and the Children’s Long-Term Support (CLTS) Waiver Program. During the meeting with legislators, self-advocates shared how cuts to the program would be detrimental to their health, well-being, and independence.
Jack Hoselton is a man with autism and WI LEND self-advocate trainee. While meeting with Representative Francesca Hong, he shared his story on how Medicaid has transformed his life. “I really enjoyed getting to tell my story and getting to advocate for why I think we still need the services,” Hoselton says. “It’s definitely been important to me throughout my life.”
For him, supports funded through Medicaid played a role in achieving his educational goals, including college, and independence. It also pays for Paratransit, which allows him to move around Madison and attend work. He hopes that in the near future Medicaid can be a part of what supports him living independently in the community.
Anastasia “Stasia” Wilson, former WI LEND trainee and current WI LEND peer mentor, also shared her story on the impact Medicaid has for her as a woman with cerebral palsy. Her power wheelchair, communication device, g-tube supplies, physical therapy, Botox treatment to relax her muscles, and 24/7 residential support that allows her to live on her own, are just a few of the supports she has received from the program and would be at risk if cuts were made.
Wilson, along with several other WI LEND mentors, with and without disabilities themselves, support self-advocate LEND trainees in learning how to share their stories to raise awareness for themselves and others, which includes preparing for this day. “Getting to meet my peer mentor [Wilson], who’s a woman with cerebral palsy, who’s a fantastic advocate, can help show more of what good advocacy looks like,” says Lizzie Oster, a 23-year-old autistic WI LEND trainee who attended Disability Advocacy Day.
Oster also attended the advocacy day in 2024, where they discussed multiple topics such as accessible transportation and Supplemental Security Income (SSI), which provides monthly payments to people with disabilities and older adults who have little or no income or resources.
Oster sees value in attending these meetings, not only for educating others, but also for becoming more aware of the issues herself. “Just by joining you can be more aware yourself, because everyone around you always has such great input on things and a lot of knowledge. But I think also it’s just one of those things where the topics are rather dear to my heart,” Oster says. As she prepares to move to Houston, Texas, she hopes to become familiar with the programs in the area so she can continue to do advocacy work.
Julie Schears, a WI LEND mentor, has been working with self-advocate LEND trainees for 13 years. Most of them come into LEND without any experience with policy or educating policymakers, particularly at the legislative level. Through WI LEND they acquire the tools, skills, and experiences they need through training modules and regular meetings with staff and peer mentors like Schears and Wilson.
“I feel like [LEND has] prepared me not only to be an advocate for other people, but also to advocate for myself based on experiences I’ve already had and the ones I intend to have in the future and how I need to be able to advocate for myself going forward in life. I feel like LEND has played a huge role in that,” Hoselton says.
Claire Bible was the first LEND self-advocate to attend Disability Advocacy Day in 2012. Bible and many other former LEND self-advocates such as Stasia Wilson, Erin Miller and Abigail Tessmann have gone on to become consistent and outstanding advocates at the legislative level and out in the community.
Wilson recently shared her story via e-mail with Senator Tammy Baldwin on how she would be personally impacted by the proposed Medicaid cuts. Baldwin wrote back stating her appreciation and commitment to the community.
Tessmann also attended a round table with Baldwin that discussed the detrimental effects Medicaid cuts could have for individuals with disabilities.
“I’ve seen it be so empowering for people to know that their story matters, that legislators are really listening to them,” Schears says about their participation during the advocacy day. “I think it’s just a huge confidence builder and a great leadership experience.”