Caregiver Support Respite

Is your child on the waiting list for a medicaid waiver? If so, and you live in Indiana, then you may be eligible for caregiver support respite. (I say may be eligible because I am not absolutely sure to which waivers this applies. My daughter is on the waiting list for the DD and the support services waivers and these apply. I'm not sure about the autism waiver or others.) Caregiver support respite entails calling your local BDDS (Bureau of Developmental Disabilities) office and requesting a provider pick list. Once you receive the list, you can call and interview providers to make a selection. Many families have their chosen caregiver such as a relative (grandma or aunt, for example) become an employee of said provider, then the caregiver can get paid to take care of the child and it removes the financial burden from the parents. The amount of respite, I've been told by BDDS, is about $2000/yr; which works out to about 10 hours of respite per month. You can have it scheduled each week or use it for a vacation or emergency use. I've heard that with the long waiting list (last I heard in IN it is 5 to 7 years for the DD waiver), the state is "throwing a bone" to the families by providing caregiver support respite.



Our experience: We've had the provider pick list for over a month now. I've made a few calls to providers but I have to admit that I am struggling with this. Only Grandma and Grandpa (and of course her Daddy) have taken care of Kaia when I'm not around. We have left her for a couple hours at a time in the monthly Parents Night Out program a local agency/church offers also, and that has been difficult for me at times. I actually used to work at a provider in my former workplace life (I'm still technically an employee but haven't worked in a year now) and I checked out their website for respite care. I always said when I worked there if I had a child that needed services I would never use them. The situations we find ourselves in. I've worked for several companies though and said the same thing about all of them. I just saw too many employees come and go that didn't care at all about the clients and blatantly disregarded company rules and parental wishes. So I am really hesitant to utilize this with the lack of control over who actually comes into our home. I think the only way to have control over the individual that comes into the home is to do what I mentioned above (have a relative or other trusted person become an employee of your chosen provider). The only other way is for the person to get licensed (not sure if that's the proper term) through the state as a provider and I'm not sure how to do that. So, anyway, all that said, we are still considering this. I probably sound overprotective, it's because I know that I am! I did read some hints/tips for parents having respite care in the home (I can't remember the website right now or I'd link it here). One tip was to create a binder/folder with all your child's info in it for a respite worker unfamiliar with your child (code for an absolute stranger walking into your house). The other was to put keyed locks on rooms (like your bedroom) that the respite worker shouldn't need to access.


If you can't tell I am pretty nervous about doing this. But I know that hubby and especially me need a break sometimes so I am definitely trying to work through this. Do you use respite? Why or why not? Was it difficult for you and how did you work through it?