IACC August Meeting Public Comment

To the members of the IACC,

I want to start by thanking you for your dedication to improving the lives of autistic people, their families, and the people who love and care for them. This committee is made of people from so many different walks of life, and it is admirable that you have all come together with a common goal in mind. 

The need for this committee is so great, and it is wonderful that we have an IACC to focus on securing and coordinating research, resources, services, and supports for people with autism while also being good stewards of the resources we have. 

I am a professional who has worked in homes, schools, and communities all across Wisconsin, and I have gotten to work with autistic people of all ages and levels of need. I truly believe what autistic people need the most is access to Home and Community Based Services (HCBS) that can provide appropriate support in our homes, our schools, and our communities. The IACC knows how important these services are, and it is absolutely critical to center these services in the strategic plan. HCBS are the foundation of supports for people with autism, and countless people rely on HCBS to live safe and healthy lives in the community.

Truthfully, I am concerned about policy shifts and recommendations that have been moving away from HCBS and towards re-institutionalization of our most vulnerable citizens. HCBS keep our neighbors our neighbors. HCBS keep people at home or in home-like settings, and everybody deserves that. There are people alive today – young and old – who have been harmed by institutionalization. I know people who spent decades living in an institution before they were “rescued” and returned to the community where they belong. I know young people who celebrated their 18th birthdays at the state hospital, then went on to live in a group home and never went to the hospital for mental health or behavioral reasons ever again.

These aren’t really my stories to tell, and they are only a handful of stories out of countless. Countless stories of people whose lives are possible because of HCBS. Stories of people who survived institutionalization, de-institutionalization, and now face re-institutionalization all over again. Stories of people who can live and work in the community because of HCBS. Stories of parents who can support their disabled child at home because of HCBS.

It might seem like the costs associated with HCBS are high, but the costs of institutionalization are actually much higher. Financially and otherwise. Please continue to prioritize HCBS and enhance people’s access to life-saving services and support. We don’t want HCBS to become inflated with for-profit companies entirely motivated by money, but we do need caregivers and providers to be compensated in a way that encourages more people to work in disability services rather than viewing it as unskilled labor and a last resort.

Caregiver shortages are a huge issue nationwide, and in pretty much every area of special education and healthcare. There just are not enough teachers, para-professionals, direct support professionals, OTs, PTs, SLPs, or other specialists and support staff to go around. Bringing additional people and resources to these fields should be another priority area for the IACC. This has a huge impact on autistic people nationwide. More than just autistic people, too, if you think about all of the people aging into needing care, and the fact any of us could become disabled at any time. Caregiving shortages should be a priority for everybody.

I know there are so many different areas that need attention and support. As an advocate and a professional, I truly believe that addressing the quality and accessibility of HCBS and caregiver shortages should be important focuses of the IACC strategic plan. These are some of the most impactful ways to provide support and enhance quality of life for autistic people and their families who rely on these services every day. 

Thank you for your time,

Cheyenne Ver Voort Kane