VOICEOVER: Susan Kane PCA Services & Travel.
SUSAN KANE: Hello, everyone. I’m Susan Kane, female from Lake Elmo, Minnesota, wearing a pink top. I’m the mother of Hannah Kane. Having grown up in the ’60s, and being aware of how people with disabilities were treated living in institutions, one of the many fears we had when we realized the gravity of our daughter’s disability was, like all parents, where and how would she live after we were no longer able to care for her?
That concern of where and how she would live became secondary to the many, many more pressing, immediate concerns as she and we negotiated doctors, therapists, educational systems, and so many other challenges as she grew to become the vibrant, outgoing young lady we know today. We have encountered and dealt with many hurdles, both expected and unforeseen, and now we find ourselves facing head on, in very real time, our initial fear of what’s to become of Hannah after we’re gone.
One of, if not our biggest concern is housing. We thought Hannah’s housing was dealt with. Hannah lives in her own home. We planned, we worked very hard to save and pay for her home. She has staff that come in to assist her with her essential life functions and ensure she is safe. To accomplish this staffing, we were forced to switch from the Developmental Disability Waiver, or DD waiver, using the Consumer-Directed Community Supports, known as CDCS option, to the DD waiver using Individualized Home Supports, known as IHS.
One of the unintended consequences of that change is the reason for bringing this to the attention of the legislature. We have discovered that according to the law, Hannah cannot get the support she needs if she is to travel out of state. Previous to this change, she was able to bring staff with her when she traveled, and she was free to travel with staff, with or without her family. We always paid for her. We always paid for staff travel expenses. The waiver paid for wages for staff via CDCS the same as they would if she was simply sitting on her own couch in her own home.
For Hannah to live a fulfilled life, it is important that Hannah is able to travel to visit her many cousins and friends that we have fostered relationships with throughout her life. We have done this knowing seeing her friends and family makes her happy and fulfilled. And we believe being connected to the people she loves will make her future happy.
When we are no longer living, it is our goal to have these relationships, cousins, to help give her added natural supports. This is only achievable by being able to travel. It seems obvious the IHS service was missed as the many other DD waiver services allow for out-of-state travel.
Frankly, the way the ruling is worded, IHS disallows Hannah to go to Wisconsin for lunch with her staff, which is mere 10 minutes from her Minnesota home. In short, our fear and our greatest concern will be that she is trapped in her own home, isolated from the people that love her and care for her. Just as in previous generations, she may have been trapped in an institution.
We do not believe that was the intent of the law, and when it was written, and indeed contradicts the freedom to travel freely that we all take for granted. Instead, it discriminates against people with disabilities living in their own homes to travel with the supports they need. We respectfully request the law be amended so that Hannah and all her peers can live the life they deserve to travel if they wish with the support staff, and not be restricted by any of the waiver programs. Thank you for listening.