I commend the hard work that has been put into writing up this proposal for parents to become paid attendants for their disabled children permanently. However there are a few concerns I have as a parent of a disabled child that this affects.
This will place barriers on families if we have to go through agencies to become employed with the regulations proposed. I live in a rural area and it’s already difficult to find an agency that would work with me as consumer directed. They’re swamped as it is and these agencies don’t have the resources for this. Also, most of us parents wouldn’t be able to get the qualifications required as we can’t leave our disabled children to go do them. Hence, the whole reasoning behind this. It also takes away our right to choose between agency directed and consumer directed. This will hinder so many families from accessing this resource. Many of us jumped through a lot of hoops to do the appendix k when it first was initiated but we did it. I can’t imagine trying to do the proposed ones.
The 40 hours per week also negates our children’s personal needs. Each child is unique in what they require. A umbrella number of 40 hours isn’t taking that into consideration. Parents don’t come up with this number. At the least it should be capped at 56 hours as that’s what is allowed for live in attendants.
I implore you to look into the many parents who have written in to express their concern over the proposed regulations. We all want what’s best for our children. The Appendix K has been a big blessing to many of us, myself included. Please consider the impact of the proposed regulations and how it would actually affect families that cannot leave their children with just anybody.
Thank you for your time.