Hello.
We are looking at using respite care for the first time for our 20-year-old with Learning Disabilities. Does anyone have any idea what we can expect or should expect? What are your experiences of using such a service? We are thinking to try it out for maybe overnight and build up?
Thank you
We started using respite when our son was 16. He started one night and built up gradually . Drop off is at 4pm and pick up 3pm. That was 5 years ago. It was a lifesaver for us as we literally had no life before that as we couldn’t go anywhere. We all got a break and he really enjoys it.
In September he went away to a specialist residential college. He stays there term time. I never thought it would happen but respite helped with this transition. He’s doing amazingly and thriving there,
That is really encouraging advice. Thank you. Can i ask what did they provide in the respite package? what type of support. Is there an assessment process. sorry loads of questions
There was an assessment yes. He used to get 40 nights a year but now he’s at residential college I’m not sure how many he gets, obviously we don’t need the 40 but a few nights in the holidays helps break up the time for him. When he’s there he’s 1:1 at all times and 2:1 when out in the community. I don’t get a detailed feedback any more but they put in lots of activities for him and take him out when there are enough staff to do so. There is nothing really locally here for respite so there is nothing really to choose from but this centre works well for him. He also has holiday support for day times . Is your son at college?
Social Services normally help disabled children/teenager/adults and normally arrange respite care or residential school where they are looked after (properly) 24 hours by 2 -4 carers
Thank you for replying.
Hi
I think it depends where you live and on the local authority.
My son is over 30 still lives at home, he has never had any form of respite.
I dont want to sound negative but there is very little in our area regarding respite especially to meet my sons needs, he also needs 2;1 when out in the community.
There is a scheme called shared lives which you could also explore but it is not for everyone and they would have to find a match which could take some time to find or put in place..
Obviously your son would need to be assessed before any plans would be made.
Hi
Gosh it's been a long time since my son was first offered respite (approx 12yrs),I thought it was a great idea, but at first he was very very anxious about it,I spoke to his social worker at the time and she said that they always arrange each new service user to visit for 'tea' on 3-4 occasions before they stay an actual full day/night to get them familiar with the staff ,the facility itself and other service users who may be staying overnight (although of course not the same people will be there Everytime ) there was a large mixture of ages and abilities amongst the other clients,i thought my son visiting before he took the plunge as it were was a fantastic idea as he was super nervous..(almost backed out at one point he was working himself up)
As it turned out he enjoyed the dinner visits..6pm to 7
I picked him up and dropped him for these.
After three sessions(over 3 weeks) he was ready for his first overnight stay.
I packed his overnight suitcase (which he took to college with him that morning) at the time he used to get transport (local council provided)theypicked him up from college & took him 4ish to the respite facility.
He had his own room with en suite wetroom,tv and use of a DVD player.there was a communal living room (with cable TV)& games room.
He thoroughly enjoyed it..the staff were approachable and very helpful,they'd do his laundry and make tea/coffee and give snacks during the evening .(or when asked)
He absolutely loved going there ..he would look forward to staying in his "own place"...doing his own thing as he said 
He had been assessed by social services and they said he was granted 24 days respite a year,we were advised that this funding had been agreed but that it was up to us how we used it... meaning we could use it as single days or in a block of like a week...if we so wished..places permitting,obviously we had to book a block placement well in advance.
They also had some emergency spaces available too...in case a carer couldn't suddenly be there to look after a service user or other family emergency
This helped us as once I had to stay in hospital for a week and the respite staff made sure my son was well looked after till I was back at home.
He made new friends with some of the other service users (they would then coordinate their stays) the staff would take them shopping at times & other outings (usually when he was there over the weekend)
His confidence soared! & I don't mind admitting I loved the break myself too.(just getting my hair done or some other treatment) it really recharged my batteries too.
Sadly we lost the respite when we moved home under a different authority and they had a different criteria for elegibility..(it was when all the cuts were going on too)
It was very very helpful for us both whilst it lasted.
Hope this information helps somewhat.
PS:I have to mention the food those guys provided was top quality..nutritious,cooked freshly on the premises and plentiful.
As you will already know, every transition provokes anxiety, perhaps none more than setting your child up for an adult life....the thing some of us have always dreaded. Availability of services and the current economic and political climate can leave us feeling stuck with fitting square peg into round hole, but by now we're familiar with that. Our experience has been fortunate but we have learnt a few things: First and foremost, Notice staff and management and how you feel around them; their attitude, interest in you and their job, is there a high turnover, do you feel a need to tread carefully with them. If you don't feel welcomed and involved there is something wrong. It is a joint enterprise, you have to work in partnership the correct social care package, (money and support). If your child is going into anything communal, the mix of personalities is a real priority in success or failure. Our experience has been exactly what we had hoped for any of our children in life, that they thrive and have to be encouraged from their busy, happy lives to be bothered with parents. As it should be.
Thanks so much. Really helpful
Hi explore shared lives for respite I have respite for our 20 yr old she is to have her 3rd visit this week and enjoys it ... it’s like a home from home about 6 hrs at the mo but will get to overnights but will be a while coming but such a gd back up for us
Thanks
Respite Care is an essential service for the whole family. Remember you are your child's main support so you need to lookafter your self. Also your child probably has never had the fun of a sleep over or stayed somewhere new. It may surprise you how much they might get from experiencing another family. My son has no communication skills so I made a little notebook of all the things he liked/disliked and a lot of tips entitled "What i do when....". This helped everyone in the early days. However it is good for all if they can work out their iwn and maybe new ways around issues. That's one if the benefits of new e experiences. Go for it!
Thanks for getting in touch. Your absolutely right. Can I ask what you get in your package? For example who pays for activities in the community? Do they provide food or do you have to supply your own?
He has a 24 x 7 package. SS commission the care from a Not For Profit Charitable Company. He pays for rent, utilities, food , motability car all from his government benefits. He spends 3 days in a Day Centre (funded) one with own staff on activities and one day for which i rin his direct payment. Things eg horseriding, holiday i fund
Family bought his annual zoo pass and vou hers for cinema, bowling etc.
Respite care can be a godsend. Make a list of questions to ask beforehand however about activities etc. There is a assessment process, the council social services department can support you with this part. Call them on Monday morning to start the process. The assessment can take up to five hours and is your chance to ask questions. It is up to you to decide which care company you will use. In my area there used to be a day centre but not sure if that still exists however.
Getting care funded by the NHS 
transport to and from social care
care fcilities for our son 31
