Experience of Supported Living

[MRST2B]

Hi,

We have an ongoing battle with adult social care to get funding for activities for our daughter who is 24, has Autism (PDA) & moderate learning disability. As she needs a high level of care support (24/7) we are told there’s no money available to fund activities which are essential to keep her occupied. It is documented that she needs to be busy to maintain her mental health & prevent the need for crisis intervention. She needs more than a walk in the park each day!!

I’m hoping someone will be able to share their experience of supported living in terms of costs. I’m looking to understand what benefits people are entitled to, costs of accommodation & care, care contributions & costs of living (food, bills etc)

I’ve seen that some accommodation has only the basics like a fridge, cooker & bed. How do young people afford to equip their homes? Are grants available?

Thanks in advance.

[Eeviee]

This sounds identical to my son. What part of the country are you in ?

[MRST2B in reply to Eeviee]

East Sussex 😀

[Creamcrackers20]

Hi MRST2B 12 years ago I asked for a grant to furnish and equip a 2 bed flat for my daughter I was given £100. I was told it was for 2 knives, 2 forks, 2 chairs etc. etc.

Family and friends rallied round and she now has all she needs and a beautiful comfortable home.

Her benefits, pip and eesa amount to £288 per week but out of that she has to pay £97 per week towards her 24/7 care package. It's a tight budget which doesn't leave much for activities or holidays so we subsidise her income by paying for luxuries like activities, short breaks etc. and a shop to fill her food cupboards.

It's not as it should be but I can't see things improving any time soon. Unfortunately It's down to care staff to find inventive ways of stimulating activities, not easy in the present climate, and with covid restrictions.

[Hope2222]

The best way to fight this is to engage a public law and human rights solicitor that has a contract for legal aid. The local authority cannot say that they cannot provide for activities; they have to provide according to NEED. Clearly there is need. You will need to ring round solicitors to find someone with a legal aid contract and space to take the case on. Try firms like Bindmans, Simpson Millar, Irwin Mitchell etc. If they can’t help ask for others names that may help. Wishing you all the best.

[SpeedyH in reply to Hope2222]

Hi there. The local authority does have to meet assessed eligible needs but has no statutory obligation to pay for the specific activities that a carer wants for their loved one. As a public body, the LA has a statutory duty to be mindful of the public purse and must meet the assessed need in the most cost effective way. The LA are providing 24/7 support here so their reasoning is probably that this will facilitate access to things like free opportunities available in the community etc or activities that the young person pays for out of their benefits if they prefer those.

[ScrufDog]

Get her PIP and ESSA reassessed. When you speak to PIP say that her needs aren’t being met and it needs to be increased to allow for this. Big you have it documented then it should be easier. Try your local Council as well for any activities they can offer. You can also go to your MP who should be able to help you if you have a case. Good luck

[sl20]

Hi, this sounds like the situation my son is in. I fought hard to get him into supported living which is based on a 4 to 1 ratio. I have tried to get him some individual personal hours but have had no luck. We pay for him to attend activities out of his benefits and our savings. Sometimes the house all do activities together such as swimming or bowling. Re funding he has esa and pip but has to pay £114 per week towards his care package ( basically what he receives for pip) His money does cover bills, food and some spending each week. His rent is covered by housing benefit. We used some of the money saved up before he left the family home to furnish his bedroom. The house itself has things like sofas cooker etc. I think we will always have to have a lot of input keeping him occupied and funding holidays etc. we wanted him to try supported living as when we are no longer around we wanted to know he was somewhere safe. Unfortunately I don’t think the perfect placement is out there!

[LDAutie]

hi MRST2B i am very similar to your daughter and i live in supported living now. i have 24 hr care and onnly dropped down from 2-1 to 1-1 support:24hrs a day (staff always with me) in jan 2016.

my mental health,communication,interaction and behaviors have really suffered as the activities i did-which was/is a art studio for people with learning disability stopped for a little bit then they switched to doing sessions over zoom-they were amazing with me as they gave me an ipad to use for a camera for zoom and my own ipad was used for communicating with them through my proloquo2go AAC app.it has kind of returned in smaller groups,but i also have a lot of health issues like two forms of epilepsy and chronic vertigo which means i often cant get off the recliner to go there.i also went to a day centre in a neighbouring borough but they had such a good rep that i went with them over what i woud have been offered in my borough.theyre amazing staff and dont judge me like the staff in my supported living facility,however because i live in full time care i along with others in this situation are not priority to go back yet and the service is still fighting the council to get funding or something like that-for us service users to go back to them.

another activity i did was DSLR photography but being a wheelchair user in an area that isnt designed for us i cant get out much,and ive lost the ability to hold the camera as its profesional and so heavy so i recently (last week) used some of my savings to buy a simfree top camera phone-a motorola edge 20 pro as the weight is ok and the photos are amazing,i cant get a contract phone as im under an apointee and to carphone warehouse or whoever my address and the appointees adress wont match up.

i no idea what amount i i get but i know i get high rate everything and have had a lifetime award of high rate mobility/motability cars for many years due to my LD,my complex autism needs and behaviors and my epilepsy (i also became physicaly disabled when i was sectioned into a learning disability hospital and a lot of unlawful restraining was done to me which damaged the spinal nerves and crumbled a small but very painful part of my spine)and going out in the car for drives is an activity for me,but the CLDT have said they wont force this company to make it a rule that anyone who works with me has to be able to drive my car,because it means if they cant meet this i woud have to be moved elsewhere,which at the moment cant be done as it takes a long time for me to prepare for it plus its all set up to partly what i need.

i also used to go to the david lewis centre (a specialist college for people who have learning disability,complex autism and epilepsy-its one of the few who offer post 25 places),i had to pay for it privately as i live quite far away from it.

there is also special olympics GB training which i did for a long time until being moved here which is to far from it but i had to pay for it.

apart from activities like specialist college and day centres-ive never known activites be free in supported living, some residential homes have farms and getting a grant to be used for activities but ive never seen it done here.sorry for the waffling.

[Clodagh_Darling]

Hi. Have you considered applying for continual health care funding with the NHS. That will help with care support costs if you are successful (they use a point system to test eligibility) and many good folk don’t know about it. If granted, it’s a help for people with ongoing health issues requiring additional support. Whilst it will be reviewable from time to time, it can be worthwhile looking into 🤓 for help whilst you really need it

[Clodagh_Darling in reply to Clodagh_Darling]

Sorry, meant to reply to someone else! Excuse me. I’ve been reading your posts and you’re very knowledgeable. We do have CHC funding for our son but unfortunately here in Torbay can’t find any properties suitable for long term rentals, supported living accommodation. Now been waiting well over a year