I think the most important thing for me to say here first is please forgive me if I offend anyone by posting; I feel like an intruder, at best, on your forum and I apologise for that but would really welcome any ideas or advice anyone felt able to offer, thank you. I apologise too for such a long post; I feel very vulnerable so I would also say please if I do cause offence that is my furthest intention, I have nothing but admiration for you all having read many of your posts over the past couple of weeks.
I saw details of this site/forum when trying to find some help but had assumed it would take me direct to Mencap where I could ask if they knew of any similar organisation that I might seek help/advice from in my situation.
The situation being that I am feeling quite desperate in terms of how to help my younger daughter, 27, who is Autistic and non-speaking also has OCD, social and generalised anxiety, lives in chronic pain and has a long list of physical problems affecting her ability to walk or use her hands/arms although she does not have a Learning Disability and I realise that is where I am the proverbial cuckoo here so to speak.
I have discussed her living independently with her for several years as I want to do all i can to help her settle while I am still here and she is open to that; at this point she has been on the council waiting list for about 4 years and I understand she could be offered accommodation relatively soon now. That is positive of course but I am concerned how she will cope with noise from neighbours etc. as she is hypersensitive to noise. I have asked that she be considered for end terrace type properties with minimal party walls because of this but the council said they cannot do this and she may need more specialised accommodation which, of course, takes us right back to the Social Services conundrum.
She has had 2 assessments from Social Services, the first SW said she had no needs, the second SW in 2020 initially offered her Supported Living but then reneged on this and left (she told us that being Autistic meant she automatically had a Learning Disability and I assumed this was why the offer was withdrawn); I complained and was told she could have another assessment with someone who "understood" ASD but, to be honest, that whole process was so harrowing for us on both occasions that I have not pursued a further assessment. The Nurse Practitioner at our GP surgery said at the time that they see this so often because parents are caring for and supporting their adult children and that they will "have to do something when I am dead" (little comfort I confess...)
She has no mental health support, local services refuse saying she is "too complex"; I know everything comes back to funding these days but I feel so alone in all of this and I can only begin to imagine how vulnerable my daughter feels.
Although I do see such great potential for her in living independently, it also terrifies me on many levels, mostly I think because she cannot speak and I just don't know how she will cope because that makes her so vulnerable; she has never been able to go outside alone or even answer the front door because of her anxiety, she had 121 support at school but they were always calling me to pick her up saying they could not cope because she would become overwhelmed and shut down. She takes time to trust people and I have tried to get a bit of support while she is still here but you never get the same carer or people just don't seem to want a permanent situation (I know she is viewed as difficult because and read as refusing to engage/co-operate/communicate but she is unable to, not refusing). She has no friends, non-speaking and processing difficulties make this so difficult and we have no family apart from her older sister who has BPD and says she cannot look after herself let alone her sister so isn't in the picture. I have no financial security or anything to leave her myself and it worries me sick as to what will become of her when I am no longer here.
Reading this back I probably come across as overly neurotic, I get that believe me, I just felt I needed to say it out loud I think and felt this would be a safe space.
Thank you to anyone who got this far with me, I appreciate that.
Wishing you all strength xx
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Rhama1975
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Hi so sorry to read about you and your daughters experience. I hope this helps.My daughter is 31 and has lived in supported living for 8 years. She has SLD, autism and some physical difficulties. From being a baby we always knew she would move to supported living and like you, wanted to know she was settled should anything happen to us.
It's a long road and I think you have to start somewhere. For me, I started going to the local Carers Centre and met other parents and heard about their experience and overtime my knowledge of how to get what my daughter needed, grew.
I got support and made some good friends.
It doesn't change what's happening at home, but I felt I had other parents to turn to for advice. In my experience, other families are key to telling you the truth about what is available and how to get it.
Eventually, I got a personal assistant, 4 hours a month!!!! when she was about 13. That gradually increased, me pushing for more hours.
I also went to carers forums ran by the council and through that found out about other areas of support for my daughter.
The road to supported living took about 4 years and we turned down the first two houses as they weren't right for her but she has flourish and for us it was one of the best things for her and us.
Maybe you and your daughter work out where she sees her future. Where she would like to live, what sort of support she would like. Whether she wants to live on her own or with other people. What activities she likes. Whether she likes holidays, what she likes and what she doesn't. Any health issues. Get it all down on paper. Basically, person centred future planning. It can be fun to do. You can then use that as your starting point. There's lots of info on the Internet about person centred planning.
Thank you so much for sharing your experiences and particularly your advice regarding person centred care (I think that's where my instincts lay reading that), I am so grateful. I did try to send you a response earlier but somehow lost it in the ether.... but thank you again! It was so lovely to hear that your dear daughter is so settled, my best wishes to you both xx
Hello Rhama1975. Congratulations in getting as far as you have got. I think eventually you will be able to fight and get what your daughter needs. It is very hard. As a person with a diagnosis of autism, your daughter has rights. How to get them realised: that’s the big question we’re battling. I’m autistic too, and I know plenty of other people who are. But it affects us all differently. I live with anxiety but have got to the point of seeing it as an unpleasant voice in my head and telling it to shut up sometimes. I had supportive friends, I went to support groups, I tried medication (one needs to be very careful) and I had psychotherapy.
I had a late diagnosis, and I recall the psychiatrist telling me that all psychiatric and psychotherapeutic services I received need to be autism-friendly. I’m not sure where you live, but there are centres in Kent and Essex which have been set up to offer psychiatric and psychological support for women who are autistic and have other complex needs. They are called the Lorna Wing Centres. I suggest you try to get her GP to put her on the waiting list to be assessed there or at another specialist centre. They do private consultations too. They may be able to suggest strategies for helping her to push back some of the boundaries that are restricting her. Even if it takes years, this can give her a path forward. Even a report would be helpful, because it could then be used when someone (you, and a social worker perhaps) writes a care plan. For example, she could be eligible for a grant to soundproof her home and to put in a ventilation system that would enable her to keep windows closed in summer.
If you can’t get to a specialist centre via a day trip then you’re planning overnight stays, but one can do that. I explain in advance to hotel staff my special requirements, and I assess from their response whether I should stay there or go elsewhere. Also, some centres now allow consultations via videoconference, and that’s better than nothing.
Autistic people have deep vulnerabilities but huge strengths too, and in time she can learn to use those. For example, Greta Thunberg is autistic and was so paralysed by social anxiety that she could not leave her home, but, when she discovered there was a climate crisis, that propelled her to “face the fear and do it anyway”.
My friend fell between the “mental health” and “learning disability” stools but eventually got six hours a week from social services, to accompany her on outings and to help with chores such as housework and paperwork. If you keep pushing your local authority then eventually you will get something for her. In her case, it happened when she fell into crisis, and she had me helping her to push for recognition of her needs.
You can use the formal complaints process for your local authority and for anyone who turns her down saying her needs are “too complex”. That’s discrimination. Your MP or local councillor might help. Also the National Autistic Society field volunteers, and I’m sure other charities do too, and a befriender might be able to help by visiting regularly and gradually establishing a rapport.
Finally, in my local authority (Barnet) there is dedicated accommodation for people who are autistic and so-called “high functioning”. Your local authority might be able to point her towards some similar scheme. Again, the National Autistic Society might signpost you.
ĹThank you so much for your response, you have given me so much to look into and I really appreciate all that. We're actually only about 3 miles from the Lorna Wing Centre in Chigwell but I wasn't aware that you could go there for anything beyond assessment.
Like you I was late-diagnosed Autistic, (at 62 through screening as part of my daughter's assessment ) She was refused diagnosis until age 22, (could write a book on that journey...). For me personally it made sense of a lot of stuff on many levels and I naively thought the diagnosis for my daughter would help but as I think you say, a lot of the services I have encountered don't seem to have the capacity, or inclination, to try and understand it.
Thank you again for replying, I really do appreciate that. My best wishes xx
SOUNDS LIKE MY STORY, Social services were bad news for my daughter! they told me she only had Moderate Learning difficulties so no help in school etc, she became acutely anxious and school refusal, I had to become a researcher, and found she has ADHD, Autism, Sensory processing disorder( very common with Autism) PDA, Dyspraxia, PNES, and other complex co- existing disorders, Now diagnosed! I think it is a very common issue for Community Living teams to disregard Human Rights. Books from Dr Beardon available on Amazon, have been more help!
Thank you so much for taking the time to reply, I really do appreciate that, I have been so moved by the kindness and generosity of spirit by everyone towards me.
Many years ago I fought for almost 2 years and got 121 support for my daughter in school 32 hours a week but they would ring me practically every day from secondary asking me to go and collect her because they couldn't manage ... all she needed was basic routine and consistency but they always knew better but that is so unfair that your daughter was refused help in school.
My daughter also has sensory processing difficulties and information processing delays and we were told last year she has hypermobility in some joints; it's very true there are so many co-existing conditions.
Will defintely look up Dr. Bearden with my good friend Amazon, thank you for that!
I have been talking daily with Parents for years, Senior School is such a common trigger for the anxiety to step forward! The wrong environments are a huge common problem where ever we live.
I'm here with an autistic adult son so you are in the right place - there is plenty of good info here which applies across the spectrum. Your daughter's needs sound very complex and it doesn't sound like she could live totally independently - how would she go shopping for food or speak if she needed healthcare? I think I would push for another social work assessment and emphasis how vulnerable she is. I know a lot of social services have tried to get out of care duties by claiming autism does not qualify due to no learning disabilities. Would it be worth starting to look at a few shared living facilities as if you found one you both loved, they might help with how to get funding or it would give you that extra drive to push SS. Wishing you loads of luck - you have a lot on your plate. You can also get a carers assessment for yourself.
Thank you so much for replying, I really do appreciate that and you spoke right to my heart of hearts in that I think I am only actually now facing the reality that her needs are far too complex for her to live totally independently. We take so much for granted these days but what good are shopping delivery services if you can't open your fro t door? As you mention, I think of all the everyday things like if something needs fixing or whatever, let alone her being ill and not being able to call for help. That torments me and I need to get out of ostrich mode and take a different approach whatever it takes.
Thank you again for your kind help and encouragement, my best wishes to you and your son xx
Please don't apologise for asking for help when so many others have let you down to date. You are in a safe space here so no need to say sorry when all you are doing is trying to find the help that you so clearly need for both you and your daughter.
Sending you a BIG hug of support.
Unfortunately I can't offer any useful advice although others have. What I can say is that if your daughter is in chronic pain, has physical problems and is non-verbal then the council response is, at best, extremely unsympathetic. Add to that you've been informed by a Supported Living service that her needs are too complex, doesn't that underline the fact that she is extremely vulnerable and needs social support?
Another area to explore is residential care homes although shared accommodation sounds tricky for your daughter. Some residential care services also offer Supported Living too. They would therefore be in a good position to determine what sort of care your daughter may need and give advice about what you might be able to do to move forward.
The following is the link to the CQC who assess quality of care in residential care homes, though not Supported Living as I understand it.
I hope this makes sense as I'm ill with flu at the moment but if I've confused you please let me know and I'll try to explain better.
The last thing I'll say is that the care system is on its knees and councils are trying to reduce their expenditure. This means if you accept what they say that's in their interests, but not in your daughters Best Interests. In mt experience the louder and more often you contact them the more likely your voice will be heard.
The Care Act (link to Care Act Guidance Factsheets below) continually hoe's on about things being in the Best Interests of the person being cared for and it might be useful for you to get to know a bit about it so you can use the right terminology and not be pushed around the houses.
I wish you and your daughter the best of luck. Please remember not to apologise for asking for help and support. You are kind and caring and concerned so just say as much or as little as you want or need too, you'll likely get a response from someone on here.
Hello and thank you so much for writing to me most especially because you are unwell yourself. I really appreciate all the kindness and acceptance I have found here, it has moved me to tears and words cannot express how much that has meant to me.
Thank you for the links, I will definitely look at those although I know my daughter wants to live in self-contained accommodation (because she feels so vulnerable around other people if that makes sense) but I know I have to learn more and get myself back into fighting mode!
First off, WELCOME! You belong here the same as us all. I can't imagine why you wouldn't! Thanks for reaching out.
For your situation, again you'll have a lot in common with many of us, it is really tricky, and sorry to hear you're in that place on the journey. For me, at times all I had left was to "proceed with optimism", and to try whatever can be tried as many times as was needed.
It's interesting that "living independently" and "too complex" are both mentioned. That suggests both "few needs" and "too many needs"? Her true and important needs are the key. Eg, if she needs your help a lot every day, then a care home setting (which nobody wants to mention as they are expensive) would fit the needs best if the needs are that kind of level. For "Independent living" I'd really want to know what support if any was going to help that would avoid neglect or problems long term.
Underfunded social services are not kitted out to do what they used to, but with enough persistence they have to recognise a major need. It may take going through higher channels, etc if the main system isn't working right.
A lot of people on these forums recommend private social workers. I've not used one, but I hear they are gold dust in telling you what you're actually entitled to and how to get it. They can also tip you off on the various bumps in the road that pop up, so they they are not a barrier or a surprise to you (getting an "assessment" to drive the process, capacity check, best interests meetings, provider choices (and reputation!), Care Act, etc). Details of some private social workers may be on the other threads, or you can post again and ask for recommendations.
A long shot but it might be worth checking this chc link too which is an NHS scheme for medical/physical needs, but every case is different, and there may be an overlap. Problems for her physically moving sounds quite serious.
If following that, do Google up guide books on the best way to approach it.
Finally, look after yourself. You are doing great things in a tough corner. Do have at least some time every day to breathe out and recharge. I found that the more nutty the situation was, the more learning some mindful breathing gave me a break from it! Which everyone deserves at times!
Hello and thank you so very much for your kindness and encouragement, I so appreciate that.You're exactly right of course regarding Social Services and funding and I was grateful to your referencing that they have to recognise major need surely; I guess it's just keeping on and being persistent and finding myself new doors to knock on!
I will definitely check out that link thank you and, also, the use of private Social Workers. That was something that hadn't entered my head (and not sure I could afford it) but sounds a very good way of navigating a very broken system that seems set up to make you give up ...
Sincerest thanks once again and, yes, I am not very good at taking care of myself but do really benefit from 4/6 breathing when I am desperate. Note to self to do more often!
Thank you so much, I really appreciate that Junik, it's so kind of you and no doubt if you're here your path in life isn't easy either, you take care.My best wishes xx
Hi, it sounds like your daughter has multiple needs and is absolutely entitled to Supported Living. If she was to go into a private rental she would have the issue of insecure tenancy. She may be waiting many years on the regular council list and they are unlikely to consider her needs.It may be stressful going through the process but hopefully would be worth persevering. If your daughter receives PIP, use the wording on the PIP application as a starting point to write down all of her difficulties, how they affect her daily life and what support she needs to help her both with daily care and with accessing the community/activities, socialising and managing her mental health, managing any medication. Also help she would need to manage finances/forms/house maintenance/travel/medical appointments
Refer to any medical/psychiatric/educational reports.
Be aware of the Care Act and your daughter's rights. If social services resist, be prepared to emphasise again her needs, quote from the Care Act and go through their formal complaints process if necessary. It may be necessary to follow through the stages of the complaints process which will take some time unfortunately.
Regarding Supported Living and Residential Care, the 2 are different. Supported Living can accommodate all levels of need and will be much cheaper because your daughter can claim housing benefit to cover the rent. She can live alone with support or with others. It's worth researching this. Good luck.
Thank you so much, I really do appreciate all your advice, it's all very useful to me.I admit I am concerned that even council properties no longer have Secure tenancies these days but am also wary of Supported Living as the Social Worker from Essex County Council said that is only for two years at most, then you are housed by the local council with no say whatsoever in where they put you which terrified my daughter and largely influenced her decision for us to apply for housing to live independently and pay for whatever support she can afford from her PIP. Which then leaves me terrified as to how she will cope when she cannot speak or open her own front door; I'm sure I don't need to expand on all the other everyday things that run through my mind .. I really don't mean to be so negative, I have great faith in my daughter, she is very determined despite everything but I'm a realist too and the world can be a very cruel place especially if you're very vulnerable.
What I don't understand is why someone like my daughter is evidently supposed to just "get better" and suddenly be able to do things she has never been able to do her whole life after a spell in Supported Living; it just feels the difficulties she has aren't taken seriously. We did quote the Care Act to them in the complaint we made after her last assessment but Social Services chose to ignore everything stating that the Social Worker was no longer employed by them and they could not answer anything raised in our letter but my daughter could have another assessment. I see now this is when I should have stood my ground and fought but it was such a traumatic experience for us all (at that point my older daughter was still involved) and I just backed right off... I imagine they rely on people like me doing that too because funding is so short but lesson learned.
Sorry, really long post, honestly don't expect you to reply you've already been very generous with your time but thank you for reading and giving me the opportunity to put this out there, that's been really helpful too
Sounds like social services are fobbing you off to avoid forking out. Many people could never look after themselves after 2 years in supported living and remain there for life. I would advise to present your case again, always correspond and ask for response in writing so that you have the evidence to take it further. The tenancy agreement will state the terms of the tenancy so you can check and show your daughter that it is a secure tenancy. If the process is causing her anxiety, you could ask for her agreement that you act on her behalf with assurances that nothing can go ahead without her agreement.Regarding their response that the social worker has left, make sure your complaint is directed against social services/council rather than an individual social worker. They are responsible for their processes regardless of the social worker involved. I would think they shouldn't need to re-start the assessment process, just adjust the findings based on further evidence from you. I would either take to next stage complaint or start a new complaint if you need to make clear that your complaint is against the department rather than an individual.
Thank you once again and, yes, I agree wholeheartedly about our having been fobbed off. It's helpful to hear you say that many people remain in Supported Livimg for life, that's exactly the security someone like my daughter needs to enjoy any quality of life in my opinion.
I really am grateful for all your advice and encouragement, it's been really helpful to me 😊
Hi , my son is Autistic and Epileptic, he is 48 and moved into a new supported living house last May he shares with 2 others. Attached to the house are 2 self contained flats. Last September a young woman moved into the downstairs flat. She is non verbal Autistic with a lot of problems , issues. The care provider for my son also support the young woman. She has 1-1 24/7. At night she has a waking staff . She is still in education presently when not at school she has 2-1 so they are able to take her out. They use iPad for some communication, she understands some of what she is being told. They do have some challenges but so far it’s working well. It’s never easy getting the right package of care and can take a long time. As others have said get as much info/advice as you can. Sadly some areas are better at this , we should all be able to get the same level of help and support wherever we live. Good luck.
Thank you so much for taking the time to write, I really do appreciate that and especially hearing about the young lady who is also non-verbal, it sounds as if she has a really good care plan too bless her.
I think you're right in that some areas are better than others unfortunately and I'm afraid I have to say I think my daughter not having a Learning Disability is used against her as well as the fact that she just shuts down and completely withdraws. I think she's just regarded as compliant and, like me, a bit of a pushover in their eyes and I understand I really have to be a lot more determined about all of this now.
I do hope your son is happy in his home, it sounds a very good place with good support.
Thank you again for sharing and your good advice, it's all been so helpful to me.
Ask for a new assessment, or file a complaint about the old one. Use this website to prepare for the meeting. scie.org.uk/assessment-and-... Make detailed notes on how she is eligible for services, which areas she struggles with, and how her struggles are related to her disabilities.
Thank you very much for taking the time to reply and for your advice and encouragement, also the link; that's all really helpful and much appreciated.My best wishes xx
Thank you so much for responding, much appreciated. Someone else mentioned the possibility of employing a private social worker, hadn't entered my head that they existed but most certainly looks the best way forward and will definitely follow up on this if I can.
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