Assisted Living

[Imagine1]

Hi everyone, I need advice on my son who is 31 years old and has Asperger syndrome. He has struggled all his life from the age of 4 years old. He never got a diagnosis until he was 11 years old, I was even told by one specialist? that he was an odd child and he will grow out of it. Well what a thing to say to a parent. He was wrong. A teacher at the special school that he went to diagnosed him due to the fact she taught children just like my son Ben. What myself and my husband, Ben's step dad are worried about is when we get older and are no longer able to help Ben with his needs what will become of him. Ben has no life skills, he can't cook, iron, wash his clothes, do the housework because he has tried but he tends to wreck things, eg, breaks ornaments. His social skills are poor and he has no confidence. We have tried our very best with him and helped him the best way we can, but all I get from him is abuse, he treats me terribly and I do everything for him. I would love Ben to be independent, this is why I would like it if he tried supported living or assisted living, He has never had to fend for himself before because I have done everything for him. If he has to do things for himself then he might be able to do them, well he will have to. Has any one got advice on what to do or where to go? I live near Manchester. I have tried Social care and unless he is old they don't want to know. Thank you in advance for any advice.

[lecsmum]

I have a girl who sounds a bit like your son, she now lives in a Bungalow with 24 hour care but we went through hell all her childhood! Local Community Living team sorted it for her!

[Imagine1 in reply to lecsmum]

Aww thank you for your reply and I am so glad that it has worked out for you and your daughter. The problem with my son is that specialist teams etc, don't realise that Ben has problems, because of this we have never got the help that he has needed. There are college courses that he can go on to help him with his life skills etc but once they see him they don't believe us when we tell them about the help he needs.

[Bananas5]

Go to the carers centre. They will provide advocacy and support for the parents, with understanding of local services etc. And persevere. Also don’t accept abuse - but get support from the carers centre with that - they will understand

Near Manchester could be anywhere! If it’s England - There’s the Gaddum Centre in Salford and Manchester Carers centre over towards the Etihad. There’s a charity called Carers Manchester who are a partnership of all the carers organisations who could maybe signpost ?

For example Lifted is specifically for parent carers of children with learning needs

But if you’re north of Manchester there’s Bury Carers hub. If you search for a local carers service - not social care - at least you'd get advice and support. Probably no magic wand but you wouldn't be alone in it

x

[Imagine1 in reply to Bananas5]

Aww thank you for your reply. I actually live in Droylsden near Manchester. Some people on here will not know where this is that is why I said near Manchester. The Carers Centre have been in touch with me today and they are sending me a referral claim pack for an assessment and other help that they can do for us. Hopefully they will help us.

[Chocolate-heals-all]

Hi Imagine! I do sympathise with you. I’m part of what you might call an autistic family. There is a process of separation from adult offspring, and it’s helpful to do it while you’re fit and well enough to keep an eye on them even after they’re no longer living with you. It might take months or years, and it’s hard, because it means putting trust in systems that seem unreliable. I think you should try to persuade your son to name someone he trusts, maybe a sibling or cousin, and to give them lasting power of attorney, for health and welfare, so that if anything goes wrong, decades from now, and if any authority figure tries to say he lacks mental capacity to make a key decision, he will have an advocate who can stick up for him. My son has named his sister, and organising the LPA is on my list of things to do.

If you want to get your son into some kind of supported living, you’ll need evidence that he needs that support. One gets into supported living by being referred by social services. They assess whether one needs that. You can refer him to social services for assessment. They will ask for his consent. That’s another thing that might be tricky. In my son’s case, I give him time to make these decisions: I explain how it will help him and then stay very quiet.

I wonder whether your son is receiving PIP. If he can apply for PIP and be found eligible, statutory services take that as evidence that he needs support. You might also be eligible for Carer’s Allowance.

Also he may be receiving Universal Credit. If not, then I wonder whether he’s in employment. If he isn’t then he should definitely be applying for Universal Credit, because they will pay his National Insurance stamps, and you can declare that he has high-functioning autism (the new term for Asperger’s syndrome) which means he’s entitled to special coaching and support from a disability advisor within the Jobcentre. He may even get “Limited Capacity for Work and Work-related Activities” which reduce his obligation to engage with an advisor and seek employment. But he might want employment, he might have valuable skills, so there’s no harm trying that route.

You may well be able to apply to act as his appointee, to apply for benefits for him, if he refuses to engage in the process. I am appointee for one of my sons. But it’s really difficult to fill in the forms. It’s definitely a good idea to get someone from an autism charity to help you with the wording. It’s easy to miss deficits that are in front of one’s nose 24-7. An external advisor will ask the right questions to help you to draw an accurate picture for the assessors. That will probably be true for when you approach social services too.

To get an assessment of needs, you ring the duty officer for your local adult services, or email them. Ask for a carer assessment for yourself, too. Explain that he’s having difficulty with daily living tasks and that, in practice, he relies on you for day-to-day care and that this is causing extreme stress for him and for you. You’re entitled to an assessment under the Care Act of 2014. I think it’s in Section 9. Here’s a link to a web page summarising the duty of the local authority. There’s a link on the gov dot uk website too, with the exact wording of every Act of Parliament.

scie.org.uk/assessment-and-...

If social services refuse to assess, you can email again citing the relevant legislation and escalate via the complaints process of your local authority. If they come back to you saying that your son’s needs aren’t sufficiently substantial to merit intervention by them, you can write a support plan yourself and take on support workers privately. Also, your local charity might have an advisor to help you appeal if you disagree with the assessment by social services.

I’ve pasted here a link to a Manchester autism charity, because they can probably help you and your son to apply for benefits for him and to get him referred to social services for a needs assessment. They also support carers such as yourself.

i-am-autism.org.uk/

There is something called secondary disability caused by people failing to gain competence because they aren’t given the opportunity to do so. It’s hard for a carer to draw the line between providing necessary support and encouraging a person to act for themselves. A skilled support worker can help a person gradually to take on more responsibility for their own wellbeing. If you can afford such a service, or if you could get direct payments from social services, you could agree with your son that you’re going to absent yourself for three hours a week during which time a support worker will spend time with him and help him to gain skills he’d like to have: cooking, housework or activities outside the home or even volunteering locally. That would be a start, for you both.

To get further evidence of need, maybe you could approach your GP and ask whether your son can have an updated psychiatric assessment. It will take time, to get that on the NHS, although I believe one can get seen quicker if one uses private services.

[Imagine1 in reply to Chocolate-heals-all]

Aww thank you for your reply. Ben get's PIP which he has received for 25 years, along with ESA because he is unable to work because of his lack of life skills and money management being 2 difficult areas for him. He does volunteer at a local charity shop, it is called The A World, after the TV programme the A word which is an autistic charity. He loves it. It helps his confidence, he also helps coach small children at a football club which he really enjoys. He has been on teaching assistant courses because he wants to work with children like himself. As yet there are no jobs for him. We have tried since he was very young to find places for him to get help with his social skills, again without any luck. The problem with Ben is that he quits everything that he does. He might enjoy something but if someone says anything that he doesn't like he won't go back. He has missed out on so many opportunities. Last year he did a placement at a special needs school which he went to himself when he was a small child, he really enjoyed it, He was told that he might have to work the odd time at another school which was local to us, he didn't know where it was so he went to look for the school, he found it and went to look at it, without going into the schoolgrounds, a teacher came out and asked him what he was doing there, he told the teacher about possibly having to work there and told him that he had Aspergers. He was asked to leave which he did, then another teacher shouted to him to come back because the police was called. He never did anything and he was leaving. The police came, they frisked him and brought him home in a police car as though he was a common criminal. I couldn't believe it. He wasn't charged with anything. This has ruined my sons life. He was on a course which he nearly finished, he would have passed it and then he would have got a job at the school he did the placement with. The problem was they wouldn't let him finish the course because of what he did? This was 8 months ago when it happened, I have reported this when it happened and all I have had back is that the school did nothing wrong, I am not happy about this and I have tried to take it further without any luck as yet. They are not going to get away with what they have done to my son. It took him since the age of 17 to decide what career he wanted to do and working with children IS what he wanted to do and they have ruined it for him. He is now 31 years old.

[BenjaminBunny]

Your son was doing nothing wrong. Just went to view his maybe future work place.The school are saying they did nothing wrong, just wanted to know who he was.

There should be some way of making the peace.

It sounds like he has done really well.

I hope you manage to get something sorted.

Benjamin Bunny

[Imagine1 in reply to BenjaminBunny]

Aww thank you for your reply, I have tried everything to sort this out but nobody wants to know. My son was getting on with his life and thought that his career was mapped out for him until this happened and the way they treated him. The problem with this as well the school that it happened in is in special measures, the pupils swear and slap the teachers and they get away with it. And they treat my son like this. It doesn't make sense.

[BenjaminBunny]

He could always change his interest to horticulture. The nature grows back again so there is always work. There are also loads of nice places that are going unloved and not being looked after. Also the fresh air is good for us so would keep him nice and healthy. If he can find someone that will do him an nvq or city and guilds there might be an apprenticeship somewhere for him as well.

[Imagine1 in reply to BenjaminBunny]

Aww thank you, he isn't interested in horticulture I have tried to get him into this too and he is not manually capable. He is interested in sports which he also does, he helps out young children with their football skills as a volunteer and he also plays walking football. He just wants to be able to teach in schools as well.