My 32 year old daughter has Aspergers. She is an intelligent and lively person with 11 Gcse’s and is a talented pianist.
She was diagnosed aged 18, and found that very difficult, becoming clinically depressed and hospitalised. It became very difficult to care for her at home, as we became unable to keep her safe and her dad had a heart attack due mainly to the stress.
We sought help from social services, who told us we had to remain as main carers, and after much pressure gave her a placement in a lockdown unit with very deeply autistic people who were non verbal. She became suicidal and was admitted to
a Psychiatric Unit, for severe depression.
Ultimately she was given a placement in a supported house, where she has lived for over 10 years now.
She was the first “client” in this house, and after a few months more people came to live there. At first this seemed OK for our daughter, however she has been very unhappy there for some time. Her fellow residents include a man with Downs, and a severely autistic lady. She has become increasingly infantilised, identifying herself with the other residents who are limited verbally and need substantial care.
She has now become extremely agoraphobic, and cannot now manage public transport to come home on visits. We parents are in our 70’s, We visit her weekly and are increasingly concerned that this placement is not meeting her needs. Her room is chaotic (she has poor executive functioning) and not kept clean, with food detritus and piles of unwashed clothing. She now sleeps in until lunchtime, and has no programe of activities to her day. The house manager continually tells us that they have staffing problems, and although she is funded for 14 hours one to one support, most often there is no staff available to even take her out to a local cafe. Although a couple of staff are trained to understand Autism, most day to day staff seem untrained and when she has difficulties, including massive anxiety attacks, they don’t get it. She calls us several times a day and late at night, recently saying she is deeply unhappy, feels bullied by some residents, and has resorted to calling an ambulance when she had a full on anxiety attack after an episode with 2 residents, which was not effectively handled by the member of staff.
She has a yearly review from the funding authority, however our and her concerns are not addressed. The SW states action plans, but these are never acted on.
We parents are presently at a loss as to how to proceed to help her, as clearly this placement is no longer meeting her needs, and indeed seems to be deepening her problems.
We would be grateful for any practical advice and insights that might help us assist our daughter.
I’m am saddened to hear of your daughters situation, so hard on you and her.
It’s obvious the shared living arrangement is totally unsuitable for her. Autistic people need routine and structure to feel safe and she clearly isn’t getting that. It’s the wrong mix of residents.
It is so wrong that others who are more disabled and so different have been placed there.
I have two with additional needs one who is recently in supported housing but a smaller place than your daughters.
I’m thinking that either a one bed flat could be suitable within a small building of say five flats where they have sleep in staff could suit depending on assessments or a two bed house where she has full time live in support.
Clearly staffing is an issue throughout the country but your daughter clearly should have better.
What county are you in?
I think her GP needs to be contacted about her mental health condition.
If it were me I would also kick up such a stink
And do everything I could to get a new placement.
We had to get our son moved from his first placement due to it not being suitable.
Your daughters wellbeing g is being affected. It can’t go on.
You mention an episode with two of the other residents …I think the unpredictability of the environment will be causing added anxiety.
Uncertainty is a big driver of anxiety in autistic people…I imagine the same would be said for asbergers.
You could also put your daughter on the council waiting list…though that’s not a quick solution.
You really need a solution more quickly.
Also ask the social services department within your council to place your daughter on the supported housing list for an urgent new placement.
Also, as your daughter is calling you every day saying she feels bullied I personally would be contacting the safeguarding department of the council.
Jump up and down until someone listens.
So sorry to read this. It is dreadful and from what you say it doesn’t seem like the right place for your daughter. She is not getting the support or care she needs by the sound of it which is shocking because these places are getting paid approx £26,000 a month to care for people!! I have outlined (on another thread) what has been happening to young people in homes here in Norfolk and it is dreadful that these places are letting down people so badly.
Don’t listen to their claims about staff shortages etc. Just get on to Adult Services at the appropriate council and tell them this is a Safeguarding issue and threaten them with your MP if necessary.
I have a daughter of similar age with autism and also learning difficulties and I can tell you I would be banging their door down and removing my daughter if this was her!
There was a story in the news last week about a young autistic man who has finally been “released” from a home after 14 years and he is living in his own place with lots of support and going out and about and living a good life after all those years of doing nothing.
You daughter needs her whole case reviewing and, as she is such an intelligent and talented young woman she should get the chance to live in the community again with the support she deserves. Could you imagine her living in that place for the rest of her life? Also, if you think about it, these places have no incentive to encourage these young people to get better and leave because they are being paid these massive amounts to “care” for them.
My daughter has a boyfriend and they finally have a nice HA flat in a small town and she does some voluntary work, she has a PA who she goes out with once a week, she had support workers go in 3 lunchtimes to help her cook etc and her and her boyfriend go to the cinema, shopping and whatever they like at weekends. No way would she get that in a home of any sort and she also hates being told what to do and when to do it (like her mother!!). Wherever we go, somebody knows her and she always introduces me. Leaving home has been far from plain sailing but we are slowly moving forwards and, for her, is a million times better than any institution.
Please let us know what happens. xxxx
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