I turned 43 on Thursday, and there was no place I’d rather be than with our family at our State Capitol speaking to legislators about the urgent need for specific home and community based supports. I’ve written about this topic before, and my passion to awaken understanding by helping others become empathetically aware of children and adults with disabilities is fierce.
Dan and I both believe in sharing our lives on YouTube, Facebook, Instagram, etc to show what it’s like to care for kids like Hudysn and Damek. It’s not always easy to get everyone packed up, looking nice and transported to the Topeka Capitol or to whatever meeting we’re required to attend in order to have our voices heard…but we do it anyway. We believe in using our democratic system (however inefficient you may believe it is) to continue to talk about what we need, what other families need and why it’s so important. Using our voice is the most powerful tool we have to fight inequalities and inequties in our community.
This week, I was invited by our DD Council Parent Chair, Kathy Keck, to testify at the Bob Bethell joint commitee on Home and Community Based Services. This committee oversees the Managed Care Organizations that provide services to families across all Medicaid waivers. THIS is where we give feedback to legislators on what’s actually happening at the ground level for families like ours who provide 24/7 care to a medically complex child.
This wasn’t my first time talking to legislators, but you would’ve thought I hadn’t done it in awhile by the shakiness in my voice! We left Kansas City a little later than we’d planned that morning, and by the time we arrived at the State Capitol, I wasn’t exactly sure how we were going to get Hudsyn inside because there’s basically only one entrance (unbeknownst to us) for wheelchairs. The rest of them are not wheelchair accessible. After calling Kathy, we found our way and went through security just inside the Visitor’s Center entrance. We frantically ran around, looking for the meeting room and finally arrived within minutes of me being called to testify. I was still a little out of breath after all of that, on top of some emotion I was feeling in having to ask for the things I was asking for in my testimony.
You can see the full committee meeting recording here, where you can listen to a LOT of parents sharing their opinions and recommendations for service changes and upgrades.
My neighbor, Dana, and I both testified that morning. After the 4th or 5th parent testimony, you begin to see a pattern: our in-home nurses are not being paid enough which is causing a massive shortage of in-home nurses statewide; and those of us caring for children with medical complexity often have to make huge financial sacrifices like one parent not working, or a single parent going into poverty just to provide proper care for their child.
This has to stop.
Not only are parents developing fatigue and burnout (especially after COVID), they’re developing their own chronic health conditions as a result of the neverending caregiving.
The room was filled with families, self-advocates and service providers that morning. I haven’t ever seen that many people in wheelchairs, navigating the limited space as we all waited patiently to share our stories. It was incredibly powerful. The committee members were respectful and looked each of us in the eye as we read our testimony. A few parents were able to log in remotely and share from home because they had no way of transporting their child to Topeka for a 3-minute testimony (our time limit). I loved this, because it shows our state is interested in hearing from those in rural parts of Kansas.
I posted about our trip to Topeka on Facebook, as did the others who were there. Steve Gieber, Executive Director of the Kansas Developmental Disabilities Council responded, and said he was SO proud of the advocacy he saw that morning. He encouraged more families to have their voices heard in the statehouse.
Janet Williams, owner of Minds Matter (and someone who also testified), shared, “I went to Topeka thinking I would give my testimony and listen to the usual advocates try to get through to legislators…[instead], I was overwhelmed more than once with a group of incredibly strong and powerful parents who told their truth. No tears, no whining, no yelling, just the straight forward truth. I’d say it was one of the BEST Topeka days in 30 years!”
Janet – I haven’t formally met you (yet), but if I could’ve encouraged a massive applause after your mic-dropping testmony, I would have. You also nailed it in regards to the crisis in attendant care for adults. I wish I could give a “ride along” experience to a group of legislators…have them be placed in a wheelchair or give them a temporary medical device so they could actually FEEL the day to day caregiving life of our kids & families. My favorite comment you made this week was, “If change doesn’t happen now, there are a lot of decision-makers who need to lose a lot of sleep.”
If you don’t want to watch the entire video, the asks from parents, caregivers and others included the following, which isn’t an exhaustive list, but represents the most popular and urgent needs:
- Due to the labor shortage in Kansas for in-home caregiving & attendant care (adults), we ask that the agencies employing them either have a percentage cap on the amount they keep from Medicaid reimbursement (thus withholding the increase to the actual individuals providing the care, be it nurses or attendant care professionals) OR we remove the agencies altogether and pay parents directly for caregiving (this includes benefits and overtime pay).
- The state approved a rate increase back in July but only for those on the TA waiver. We ask that the increase be applied to all waivers for those caring for individuals with medical complexity.
- Increase the hourly wage for adult attendant care professionals. Currently, these folks make a little over $11/hr. Someone at Starbucks can make more than someone caring for the extensive activities of daily living needs for adults with disabilities. This will also assist in reducing abuse and neglect.
- Turn the system of care upside down. The MCOs are at the top and the families/people with disabilities needing the services are at the bottom. The MCO system is based on trickle-down economics..give the agencies the MCO’s work with more money, and we assume that increase will go to the front lines of cargiving. It has not, and families continue to suffer.
- Help us get supported decision making, an alternative to guardianship, passed and overall be more supportive toward paying adults with disabilities an actual living wage (for those who can be employed).
Chairman/Senator Hilderbrand did agree to take a closer look at continuing the parent paid caregiving (beyond COVID), which I was very excited to hear. Our group of parents, caregivers and self-advocates was impactful today. The committee listened and took a lot of notes. The more challenging next steps will be to continue speaking up and repeating our asks until things get better. Today can’t be the last time this we communicate our overall situation…we ARE in crisis with the above asks. These needs are extremely urgent, especially the first few. I fear the next outcome will be hospitals and institutions will be flooded with our kids as they age, simply because the parents and caregivers will either pass away or need intense care themselves. And, it’s far more expensive to care for individuals inside institutions than it is in their community.
To participate in the next committee hearing, which typically meets quarterly, please make a comment below and we’ll connect you to the right folks who can help you get on the private citizen testimony list.
Is your book out yet?
“Every Now & Then, I Fall Apart: A Mother’s Memoir of Life After a Traumatic Birth”
Not yet! In editing as we speak, though;)