Care and support young adult with autism and ld

[MissJeanBrodiesmother]

I would really appreciate any advice from other carers or social workers.
I have a young adult dd with severe autism and ld. She needs the same care as a young child would in many ways. She cannot be left alone and needs to be with an adult all the time. I have some social care support for wrap around - four hours a day and during the day when she is not in education. I work full time.

I am now a single parent. Her dad doesn't want to know and help is very minimal.

I want to be able to take a holiday and to be able to go out without her. In short I also want a life.

Social care don't seem that interested in helping me. Her allocated worker left and we are back on the waiting list.

What do I do?
Am I entitled to care to enable me to go on holiday and go out or is this it unless I make the decision for her to move out? She is 20.

Has your daughter had a transition assessment at all?

If she is still in education then some of the funding still comes from education and some of the funding from adults and it can be a bit messy until the education funding stops - there can sometimes be a view that 'education' is providing respite during the day.

You can ask for a carers assessment for yourself and this often provides a small pot of respite funding for e.g a sitting service for a few hours a year.

For longer periods of respite it will need to be funding added to her support plan and agreed as part of her support package.

Busy Adult Social Care departments prioritise work depending on urgency so if you are sitting waiting quietly they will assume everything is OK unless they hear from you. If you ring them and say you are booking a holiday for August and you need some respite arranging you will be put on a more urgent list for someone to come and sort that out.

Four weeks respite a year is usually the standard amount offered. Different local authorities all do this bit differently but in the one I currently work in the funding would be given to the local specialist respite centre by the LA and you would ring and book the weeks you wanted with them directly.

You can ask for the equivalent as a direct payment though and arrange something yourself.

Another option for some of our young adults who are in education is that their college has a residential option as well and most families choose to book them in with the college resi team for those weeks so they can continue to go to college during the day.

She was assessed when she left her school aged 19 about six months ago but at that time her father was saying he would help with her. It now transpires that he has changed his mind. He won't do any overnight or regular care beyond an hour here and there if he feels like it and on his terms at times of his choosing.

I have approached a respite as I was going to arrange it privately as am desperate for a break but they can really only do a couple of nights midweek and nothing in the school holidays. I am a teacher and can only go away in the holidays. The respite also largely expect the person to be out during the day and see themselves as a kind of b and b. I would have to arrange care in the day. They also have no weekends available until the end of the year!

I really just want to be able to book a week's stay so I can get on a plane and have a real break. I am pretty heartbroken to be honest. It feels very much like I have to choose between myself and having a life and my dd. I don't want her to move out and she isn't ready for that. I want to keep her at home for the next couple of years but I need to have a decent break and be able to enjoy my own life a bit.

Social care also told me they are in business continuity due to lack of workers. I suppose this means sod off.

Wow that sounds like they are absolutely on their knees then which doesn't help you but does explain why you are not getting much response.

I worked in an LD team like that once where for a while I was the only social worker left and yes unfortunately was literally only able to deal with the high risk safeguarding stuff for several months until we got some more staff (at which point I left through burnout). It was heartbreaking letting families like yours down day in day out. The only time I got any assistance was when there was an MP complaint and someone from another team would be sent to chuck money at the situation to make it go away... just a suggestion.

Adult social care should be able to provide you with a list of respite providers for under 65s in the area as a minimum if self funding is an option for you.

Also consider that you don't just have to look within your own area for respite - anywhere you can travel to prior to getting on a plane yourself is an option. Think of it as a holiday for your daughter as well.

Perhaps try posting one of of the specialist boards here asking for recommendations from other parents?

The carers assessment is often outsourced to another organisation (like a local carers organisation) so you should be able to get that even if social care aren't being responsive.

Do consider speaking to the MP though if they are usually quite proactive. Good ones really can make thigs happen.

Good luck!

Thanks. I have emailed my mp and a county councillor to see if they can push things along.

Whereabouts in the country are you and how do you feel about her living in supported accommodation? Up here in Lincolnshire we have several fantastic places that do long term and also short term residential. Ask your Sw for help in finding places , does she go to college? If so do they have anything at all they can offer you

No college. They rejected her as too high needs. We are in Suffolk. Supported living was the plan for in a couple of years not now. I want her to live here but I need some help.
I can't commit to never going on holiday or out at the weekend without her. It's too much.

What social worker? They won't allocate her one at the moment.