JeanneA

Has anyone got the same problem with their autistic young adult as I have? My son who is 27 has been in independent living for 4 years, has 2:1 24 hour care. The problem is there has been a high turn over of staff during the past 18 months. I went to visit again after the covid lockdown, while the first visit went well with 2 new carers there, the next 2 visits went really badly, he became extremely agitated, hit out at staff and me and the property, staff managed to get him to his room but this behaviour continued until he starts to calm down but not for long, I’m told to leave as they don’t want the behaviour to escalate further. In the past the visits have been varied but these recent ones have been far the worst overall in the 4 years. I really don’t know what to do, any help would be grateful. Thanks

Hi Nikki, sorry to hear of what you are going through. My son Glen sounds very much like yours, he is 23 now, but he went to a residential school when he was 17, we were recommended this placement via Glen's clinical psychologist and social worker. We agreed with the placement after having a visit from the manager and director of the placement, we were very pleased with what they had to offer so haven't been in your position. However, you do need a good social worker, sounds like your's isn't doing the best of jobs by keep cancelling appointments, why don't you complain to the manager of your social services, demand to speak to him/her. Also has your son got a clinical psychologist/educational psychologist, as these are the professionals that can be very helpful. I really do feel for you and hope you get the school that you want. Do you know if this school has places available/have you visited the school? Please keep in touch, private message me any time. x

Really good news :-}

Hi Paula I really feel for you, it's all laying on your shoulders. I think you have done extremely well, 23 years, I lasted just 17 years and sadly had to place my son into a care home. Although that didn't work, he is now going into supported living in about 10 days time I really hope this will work out. I think you are doing the right thing in getting him in supported living. Do let us know how it all works out. I hope your son has come home now by the way.

Hi Paula, just want to say how much I feel for you, why is it disabled people get penalised for being disabled, well that's how I look at it. You shouldn't have to show your son's bank account, pay slip details for a 1 hour a week job that he is, I think it's absolutely ridiculous. The system is so unfair and so stressful for disabled people and their families. I hope all works out for you both in the end as I'm sure it will (( ))

Hi Paula, I hope all works out and your son is awarded the PIP benefit. Was he receiving the mobility part of DLA as well? My son Glen, has been awarded the higher rate of care and mobility for PIP he only got the higher rate of mobility because he is registered blind now. Let us know how you get on.

Thanks very much, most helpful.

Hi, my son Glen has been awarded the enhanced rate for living and mobility recently. He is moving into supported living where he will be looked after by 2 carers 24 hours a day. He needs transport so with being awarded the enhanced rate for mobility is entitled to a mobility car. I just wondered what the procedure is, has anyone else been through this, how long does it take to get a car? I have heard that 2 people car go on the insurance to drive the car which means it will have to be the carers and not myself. I presume I can still order a car though as I do have deputyship now for Glen's welfare and finance. I would appreciate any advice thanks.

Thank you very much, I appreciate your help!

Hi, yes I know you are unable to get the money until you have left hospital, at least doing it now I can then let them know when Glen leaves hospital and moves into the bungalow so that they can then start paying the benefit. On the form the declaration, I will be signing it as I am doing this on behalf of my son Glen. Do I print my name or his?

6 months is a long time but I thought it would take a long time. Glen is still in a mental health hospital so they will help regarding the forms, they will write reports etc. Glen is hopefully moving into a specialist supported living accommodation next year and will need a mobility car, so I'm hoping he will be awarded the enhanced rate for daily living and mobility.

Thanks very much for the info. I have had the phone call and I am now awaiting the form to come.

Hi, my son has had a change in circumstances, he is on DLA, higher rate for care and lower rate for mobility, I have been told by my son's social worker to ask for the mobility part to be looked at again as he will be moving into independent living in the near future and needs the higher rate for mobility to enable him to have a mobility car. I have been told that he will now have to be assessed for PIP. I am awaiting a letter form PIP after contacting DLA. I was told it will take up to 10 days to receive a letter which will then tell me to ring PIP, so how long will all this process take? My son is now blind in one eye and has very little sight in the other which the ophthalmologist from Moorfields Eye Hospital has said his sight in this eye will gradually deteriorate, he can only see light and shapes now, and needs guidance from staff to get around in the hospital he's currently in which is why the social worker thinks he will qualify for the enhanced rate for mobility.

Hi fade, I just wanted to say you sound so much like my eldest son who is 31 and has not been diagnosed for ASD or Aspergers, but I do feel he is on the spectrum, but I haven't brought this up with him. He has problems interacting with people, he hasn't any friends, and all his says at work is 'Good morning' and 'Good night' that's it. I agree with Trekster, an Asperger group sounds ideal. I hope you contact the one that he mentioned. I think you are doing well, it will take time but I'm sure you will get there especially with the help of the group. Please keep us updated. I wish you well.

I do feel for both of you ladies. I know only too well what you are going through. I have been through it myself with my youngest son Glen who has ASD and very challenging behaviours. He is 22 now and has been in a mental health hospital for 16 months. He is not doing well at all. A placement is being sought for him, but funding is an issue. I wish I had kept Glen at home, but then again I was struggling with his aggressive behaviour and would not have coped much longer. He sadly went into a residential home at the age of 17. Anyway, I do hope things get better for you both, I don't really have advice I could offer except keep pushing for help for your sons. They deserve as much help as possible. Sadly due to funding cuts etc things are not very good at the moment. Thinking of you both.