My son is 18 with MCI,LD and numerous complex needs I am looking into assisting living with 24 hour supervision/support waiting list is long so I'm thinking of putting him on now can take years don't want him to go now but things need putting in place as not get any younger and I have health issues .Also adult social care have now given us a social worker as he been failed by the system saying he can have support workerbut I have to be employer to pick our own or he will get agency and different person everyday my son can't have this I'm being now bombarded with prepayment cards ,having to find someone ,get liability insurance etc etc with no help just here's info get on with it I work some evenings when husband home from work and I care for my dad aswell as my son and other children this is all to much with no help with a getting support worker and setting it all up I tell them it's overwhelming but I'm worried they ll say taking to long too late .I have done financial assistance application my son has to pay £100 a week towards from care component of pip for support worker .I need to also find things for my son to do places to go that doesn't use all his money as support worker would need to be paid for too get no help with that advice on groups with people with complex needs .Has anyone any advice of how I go about all this as just been told do this then have to do it myself thank you in advance sorry for long post I am just so overwhelmed with it all feel so low.
My son 18 assisted living and support worker - Mencap
My son 18 assisted living and support worker
I only have a 10 year old so don’t really have direct experience.. but do have some experience of the health education and social care world.
I think there’s a lot of information been given to you here on top of all your other commitments.. I would try and take it one step at a time.. if your son has an EHCP i would get in contact with your local parent carer forum for some local advice they should be able to support you and your family up to age 25. Plus speak to your local carers service.
in my experience having a direct payment is a pain like you say you have to sort the insurance, find the worker, pay them and people don’t want to do it forever.. but if you could find someone the benefit would be they’re consistent... perhaps put an advert out on a local FB group, think about neighbours, family friends who might have young people who would be interested in this type of role.. also local charities have lots of young people wanting work experience and may be able to help.
Social care shouldn’t say too long/too late as by the sounds of things they have assessed his needs formally so the money will just build up/be returned if unused.. do they not have a brokerage service that could help you find someone..is ther not a managed service option you could choose?
If they’re offering an agency.. I would get to know the service/ see whether they can offer 2-3 workers to support your son on rotation- this is what we have.
Local charities depending on your sons needs might have activities to access that aren’t too expensive.. social evenings/activities for young people.. what about safe travel training/ life skills.. does he know/able to go to the shops and buy/prep his lunch for example. What about council sporting activities/ these are all relatively low cost activities too..
it is a lot of work.. you won’t get it sorted over night, but it’s something he/you need and it’s worth taking it a step at a time to get the right support..
I hope this helps a little and you manage to work your way through everything..
one other thing.. there’s a very good FB group called SEND Gin & Cheese with lots of supportive/experienced parent carers that have experience that could help too..
wishing you all the best
Hi our council can advertise for carers, ask them if they can do this or if they have a register of carers. You can ask for self employed carers, that way they deal with their own tax and insurance etc they just invoice you for care provided. Ideally have a bank of 2 or 3 carers who know your son well and can cover for staff absence. Going rate in Herts is £25 per hour. Ask for more hours than you need because council only pay £18 per hour.Does your son have EHCP? Don't let the council end this, he is entitled to education up to age 25. Look up IPSEA for advice.
For groups, your council should have a list. Many don't staff 1:1. If your son needs 1:1 support you can use the council direct payments to hire a carer to support at group. Ask them for more money to pay for this.
I have been going through this myself. I wonder why they’re clawing back £100 a week from his PIP. When they do the financial assessment they’re supposed to deduct disability-related expenses from the person’s stated income. It might be worth your going through this with someone from Mencap or a carer charity.
We were told that we couldn’t use the direct payments to pay for employee expenses such as meals or transport, and we couldn’t use the dp to pay entry fees or tickets. He was really enjoying the excursions paid for with dp when that was allowed. Now we aren’t using the money. It gets clawed back every so often.
I know people who use agencies. Some agencies are very good and send people who are already known to the service user, a small team of regulars. Some simply act as an introduction service. Snap Care do that. They find good people and give advice about managing payroll and contracts.
It’s much cheaper for the local authority to offer help you can’t use. Then you don’t take it up, but it makes them look as if they’re responsive when the inspectors come round - even though in fact they were no help at all.
Just to clarify, your direct payments can pay for self employed carers then you don't have to deal with insurance/tax etc. You can also use it to employ agency carers. Tell them that you only want regular consistent carers. If staff are absent and they can't provide cover we occasionally say we will do without for the day rather than upset my son with an unknown carer.As others have said tell SS about disability related expenses like if he uses pads or gets through excess clothing or bedlinen etc. You may have to provide receipts. This will reduce the contribution your son has to make. My council deduct from his direct payment fund so there is not an extra invoice to deal with.
I would try the agency and see how it goes. You might find there's much less turnover than the council are suggesting.
For my brother 
visiting my son.
22 year old son with autism - moving into own place and living more independently 
