My son was FINALLY awarded a slot on the DD waiver after years of waiting and struggling to find any help. When he was finally awarded the waiver slot we thought our troubles would be over. We signed up for agency directed care because I was so busy caring for my son that I knew I would not be able to give my full attention to finding him a caregiver that would meet his needs.
We tried to find someone through multiple agencies for over two years. In all that time we only found two individuals who were willing to attempt working with my son. One ended up not being able to pass the full background checks. The other was absolutely scared of my son and quit after 4 days observing me take care of him.
In the end we made the decision to move to CD so that I could become his paid caregiver. It’s not what we wanted but it has helped us as a family. I am already familiar with everything my son needs in his daily routine. I know that he is well looked after. It is our hope that, in time, as he gains new skills that we will be able to find an outside caregiver to help support him.
Now you propose taking away the option for us to continue to use CD if I am to continue as his paid caregiver?! You’re proposing that parents be referred to agencies to become their employees? Why? They failed us for years. Why should I now how to go through their training (which didn’t adequately prepare the one caregiver they could find for us) just to care for my own child?!
Families should continue to have the option of using agency directed care IF THEY SO CHOOSE. No family should be forced to use agency directed care simply because they are using the parent as the paid caregiver - regardless of the reason why they are doing so.
We live in an area of the state where there isn’t easy public transportation to our home. We also have hours of care that are determined by my son’s school and sleep schedule. We didn’t come to the decision to have me act as his paid caregiver lightly. By keeping his routine steady (not constantly changing caregivers) we help to make his life better. He thrives on routine and deserves to expect a high level of care.
Please don’t force this change on families. We already deal with so much.