Respite care

pastalady · May 2013

Do you get any respite care? We just got it and have our first day set for Sunday.

i am nervous but excited at the prospect of DH and I getting a date lol!

I am in Canada, and from what I hear my province is pretty good for services. We have a lady lined up who has a grown DD with AS. DD will get to meet her first on Thursday, then she will come over on Sunday. She has had extensive background and police checks. We use an agency who directly bills the government so no cost to us.

we have 50 hours to use by February. I think we will go to our neighbourhood pub, so if anything arises we are only 5 min away.

We don't have family willing to watch DD anymore. DD is a wondered, Bolger so we don't feel comfortable hiring a typical babysitter. I feel good this woman has had training and a child herself on the spectrum.

anyone have respite care? How often do you use it?

pastalady · May 2013

She is a wonderer and Bolter it should say lol!

realisticdreams · May 2013

Our respite here in VA works a little different. We have a medicaid waiver which provides attendant and respite care, but we choose the person and they go through a hiring process. Since we live in the middle of no where, their aren't really any people qualified near us. If we had switched over to the more medical portion of the waiver, they would of hired LPN's etc, since P would have been cathing.

Try to have fun!

MaxandRuby · May 2013

I get respite through the Army. We get so many hours per month to use (you don't have to use all of them) which just got reduced since H is home from deployment. It was really a Godsend during the deployment because it allowed me to work from home in the evening and then still have free time in the evening to myself to use as downtime. Now that DH is home, I still plan on doing that (DH will take our older son out for one on one time). This will also allow us to have the occasional date night which DH and I are big believers of. :-)

gimmietimmies · May 2013

We were granted respite too, but never got to use it. When it was on our contract through child and family services, the agencies wouldn't take his case because none of the workers felt comfortable taking a medically challenging child, even though that's what they were contracted to do. I also remember the day they changed the definitions of the law as well defining special needs and they removed medical diagnosis off (excluding cancer and a few others). So ds is no longer covered because he's purely medical by their definition.

I was also disappointed when they said for respite they didn't do sibling care. I was sleeping 2-3 hours a night because of his dialysis machine, while dd1 was a newborn. All I wanted was sleep and someone to help with light housekeeping and I was told it only covered the caregiver for the contracted child and not siblings, we'd have to get another person in for that on our own dime. We just didn't bother because at the time ds' medication cost more than we could afford and it wasn't covered.

If you have respite, fight to keep it. And use it. I got lucky when ds was transplanted, the nurses took dd1 and cuddled and played with her and sent me to the quiet room to nap. They saved me, and I'm still close to them now.

Jenny952 · May 2013

We are in the process of applying for respite care. In MN for our DD's condition we would get up to 8 hours/week of respite care, and all of that time will be used toward her daycare. Right now she's in the infant room at her current center. We are moving to a new center in 2 weeks who specialize in caring for children with disabilities. They will have her in a mainstream room and in regular enrollment, but will have 2 hours/day of extra care. She's in a wheelchair so she'll have 1:1 care for morning and afternoon drop-off times, just to make sure she's being watched carefully during the most hectic times. She will only go 4 day/s week so our 8 hours of respite care will go towards those 8 hours of extra care at daycare.

If I chose to stay home with her and we were able to get 8 hours of respite care, then I would send her to her new daycare center 2-3 days/week so I could have some alone time.

Enjoy having some time to yourself! I'm sure you deserve it!!!!

mrsschrager · June 2013

We have respite provided though a private company that we were referred to from our counties regional center... We get 20 hrs a month or 60 hrs a quarter ( 3 mo) they also watch siblings for a small fee... Our son is asd and is a bolter as well... We love respite! We actually get to go out and be adults once and a while... We have literally no help from family so we use every hr we get.

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