Hi I'm new here. I'm off work with stress due to my disabled daughters situation and taking the time to seek out a support group.
It's a very long story but I will do my best to keep it short and to the point.
I’m a mother to a 24-year-old with special needs, and for years, I’ve fought to be actively involved in her care and decision-making. Unfortunately, despite having Power of Attorney (recently) and a deep commitment to her well-being, I’ve faced consistent challenges in working with the services responsible for her care, including social services and her care provider.
As my daughter has aged into adulthood, I’ve found that both these agencies have increasingly alienated me, often excluding me from key decisions and limiting my involvement in her life. I’ve been pushed aside despite my legal rights, and at times, I’ve felt as though I’ve been shut out entirely, even when I’ve tried to advocate for her best interests.
To make matters worse, her care provider has been dishonest with me on several occasions, providing misleading or false information regarding her care. Their lack of transparency has made it incredibly difficult for me to trust them or feel that my daughter is receiving the appropriate care she deserves. Social workers have also offered minimal support, failing to advocate for my daughter’s best interests or collaborate with me effectively.
My daughter’s living arrangements are completely unsuitable for her needs, and despite voicing my concerns numerous times, I feel that my input is blatantly ignored. The care setting she is in does not meet her needs, and I am left feeling helpless as nothing seems to change. It’s exhausting to fight for her well-being when the services that are supposed to support us are either unresponsive or dismissive.
One particularly troubling issue occurred when I raised that my daughter’s severe allergy was not included in her care plan. The care provider manager actually argued with me, demanding proof over a life-threatening matter, rather than acknowledging the urgency of the situation.
I’ve been subjected to a lack of cooperation, which has left me feeling isolated, disempowered, and uncertain about how to continue advocating for my daughter’s needs. It feels as if I’m being actively excluded from decisions and information, and the emotional toll of not being able to support my daughter has been overwhelming.
I could tell more such as when my daughter told me that one of her support workers said she, " would like to punch me in the face". Of course when questioned they deny everything.
I’m reaching out to connect with others who might be facing similar struggles, especially in the context of caring for an adult with special needs. I’m hoping to find advice, support, or shared experiences that can guide me in navigating this challenging journey.
If anyone has dealt with being alienated by care agencies, facing dishonesty from providers, lacking support from social workers, or dealing with unsuitable living arrangements for their loved one, I’d be incredibly grateful for any insights.
Written by
Bibbysmum
To view profiles and participate in discussions please or .
Hi Bibbysmum! I see “Australia” is written in your profile. I’m in the UK. Here are my thoughts - although I suspect that you are ahead of me in this journey and have already thought of what I’m about to write.
I’m the mum of a 21-year-old. He gave LPA to his sister. He lives with me and his dad. Since he was 18 I have been trying to get a proper care plan so I could restart my career. But they don’t seem able to put in place what we need as a family. And when I email asking for information I get no reply, so it’s a matter of constantly chasing. My son’s needs are very subtle. He can do a lot, independently, but needs mentoring. We have not yet found an appropriate residential placement, and your daughter’s experience is what I fear.
I have heard a lot of stories similar to yours. Care services seem to treat family like the enemy. Some parents might be actively destructive in refusing to accept the potential for their adult offspring to gain skills. But often I feel that it’s because carers want a quiet life and don’t want to be held accountable when they are failing in their duties. They use mental capacity legislation selectively to support their argument when it suits them.
I would recommend you try your MP if you’re in the UK, or your daughter’s MP.
My husband did approach the local government ombudsman. It was heavy going. He didn’t get much success.
The more evidence you have, the better. That means that it helps if you communicate in writing with everyone so that things are on the record. In our family, we communicate in writing because we’re autistic. It does make it easier to track back and check what was said to whom. If someone insists on having a face-to-face conversation or phone call then it helps to record it (you don’t need permission to record, but if you didn’t notify them then your options are limited in how you use the recordings) or to have a friend listening in, and to send a follow-up email confirming what was said.
If you have LPA then there is now a way to put that on your daughter’s medical records, and once you have done that, you have full access to her medical notes via the NHS app So it might be absurdly simple for you to get evidence regarding her allergies and regarding the associated risks If you get that to the care provider, they have to do a proper risk assessment and to put it in the care plan.
I would like Mencap or Scope or Mind - or some person who has the organisational skills - to start a campaign group for people who have raised safeguarding concerns and have been ignored or, worse, suffered retaliation in the form of defamatory reports or adverse changes to care provision. I think that the problem is widespread, and I suspect there is a playbook, because there seems to be a pattern in the way retaliation is perpetrated against anyone who appears to threaten the comfort of a person who is more interested in their career than in the well-being of the people they support. I have heard of someone being advised to falsify records for their own convenience (in a care home) and of someone being ordered by their line manager to tell an outright lie.
In the UK there is legislation (I think it’s the Freedom of Information Act) giving individuals the power to request what records are held, concerning them, by an organisation. This is called a “Subject Access Request” - you can make a subject access request in a way that suits you, and they are required to answer within a given time frame, and you can then request further details and refer any gaps to the Information Commissioner. Also you can request details about a range of matters which don’t pertain to a private individual but which reflect the general practices within an organisation: for example minutes of trustee meetings of a charity, or minutes of meetings of leaders in a care organisation. Further information on how to get information is on
When the goal is to look after a loved one, it's easy to get into conflict with those who are getting in the way of or damaging that goal. What I learnt is that the conflict can make me lose track of the goal itself.
At one place, I eventually figured out that they were (underfunded) incapable liars, and any level of complaint process or ingenious tactics was never going to change them, so how to care for my loved one? Get him to a new place. The old place went down the toilet shortly after... Glad he was out of there... The warning was a blessing. Fighting to keep him in would had be been an awful outcome it turned out.
At the new place, there was stuff to sort too, but I figured out just in time that they are talented and well meaning, and the solution was usually cooperation.
I totally defend the right of anyone to use any suitable approach (eg if the punch comment was directed at a resident, I'd be looking to collect more evidence for safeguarding, if staying at that place was going to help my person.) That aside, I've tried many approaches to very similar problems, and my goal focused stuff, where I was determined but clear enough to be choosing from a range of tactics was the best way in the end. Sometimes I'd be mid conversation and shift to whatever decision or angle might work better.
You are an important person in all this, so keep your body and soul in good condition, and if there's a good coach or friend gifted in management or problem solving, it can really help the whole mission if you can bounce ideas and feelings off someone... Then things can sometimes go better for you and all. Still tough, but better.
Your experience is identical to our journey trying to get the best 'care' for our 60+ close relative whilst he is 'banged up' in a home specialising in mental illness cases.
We had Finance and Property (F&P) initially because of misuse of his finds and when we felt his Health and Welfare (H&W) needs were not being seriously addressed we applied for that too.
Ended up in the court if protection where a team of lawyers, barristers, a 'litigation friend' for our relative fought against unrepresented us and we were denied H&W and stripped of P&F. The lies and collaboration between the council care home NHS proved to us that if a relative fails to play the game or asks awkward questions where lies do not cut a proper answer, they are treated as vermin.
We had lip service from the agencies who are there to see transparency and inclusion of relatives who know what really is 'best'. It boils down to money in the end. The authorities want to cut costs, show a profit and get on with providing basic care with no interference from outsiders.
We witnessed threats from care home managers and their bosses directed at seemingly independent individuals such as doctors and advocates who despite being supportive initially, shrunk away into gagged silence when the prospect of them being asked to help our case turned up.
In the end our relative had to fork out over £30,000 of his own money to pay for his case being heard and worse still a 'transparency order' (what a wrong name for it!) means the case was not published and we cannot name the parties involved or we'd be in breach and could end up in jail too!
The whole thing has been so stressful we are no longer deal with the care home and our completely institutionalised relative is as good as dead whilst the care home is raking it in.
PS I met one carer in another home who confirmed this is endemic in places she has worked. She ended up losing her job after speaking out. Treated like a whistleblower she was demoted, given the worst jobs and sent to another home owned by the same company with a bad CQC rating all because she cared about the residents and asked the same questions that caring relatives might.
PPS You may or may not have seen my earlier post about the woman who's brother's 'care' only came to light after he'd passed away.
The only best interests the authorities care about is the best interests of their bottom line.
Be very careful in your dealings with this brood of vipers. The MP approach might work. Or perhaps BBC Watchdog with a 'mole' in the home. When we contacted the head of the council's social services, we could tell the defences were up and saw no point in flogging another dead horse.
I miss seeing our relative but it is my wife's sanity that I'm concerned about not pandering to those who claim they know best and who write reams of lies in care plans and daily diaries which (because they are 'professionals') pulls the wool over anyone who has no more than a passing interest in what really goes on 'inside'.
I wish you all the best and pray you do not have to go through what we went through. X
Thank you all for your responses. I'm gobsmacked by what I have read although at the same time I can believe it because the same, if not worse is happening in my daughters situation. Yes I live in Australia and my daughter is in care in the UK.On the positive side, it means she gets a few breaks a year because she comes to stay for 6 weeks at a time.
Some mentioned contacting the MP for my daughter’s situation. I did contact the MP and only yesterday I had another negative response. The MP is not interested in the slightest. It goes like piggy in the middle and nothing more.
Like this
1) I complain to the MP and state my case
2) The MP contacts the care provider
3) The Care provider comes back with a lack of knowledge about the matter and a huge amount of lies, absolutely zero accountability or empathy towards the situation, just " we didn't do it" attitude.
4) The MP sends me the response and hopes I will go away
Repeat steps 1 to 4 .....only yesterday the care provider came back and told the MP I must be "confused"! Along with copious amounts of lying.
They told the MP, I exhausted their complaints process, what actually happened is, they shut me down.
You couldn't make this stuff up.
How the hell are these people getting away this kind of attitude towards the family of service users ? It's atrocious and disrespectful and I am outraged.
It's affecting my relationship with my daughter because she is being pulled emotionally by the staff, she is being manipulated to think I am not acting on her behalf. My poor daughter doesn't know who to trust.
My daughter was born with brain damage and is autistic , one of the support workers decided my daughter was depressed, her opinion only, she took her to the GP spoke for her and hey presto! They had my daughter swallowing anti depressants without informing me. She didn't even know what she was swallowing.
When I raised this with the GP and explained she is not informed and doesn't understand what she's taking, they wiped it from the records. !
Support workers have had my daughter sitting on the floor in a fast food restaurant because she refused to wait in the queue as she was fatigued and they wouldn't get her a chair. The fast food staff offered my daughter a chair and the support workers said " no , if she can't be bothered to wait in the queue then she can stay on the floor" . They treat my daughter as if she's a naughty toddler. There is so much malicious gossip from the people who are supposedly caring for my daughter.
It's heart breaking for me to listen to.
There is issue after issue and I want my daughter out of that care provider and out of that home.
My only chance left is my complaint with the Ombudsman but after reading other experience, I'm not confident.
Hi Bibbysmum You are right in that you can't make it up.
Your own tale just gets more and more incredulous, and 'the system' which the authorities have created to protect themselves for all their deceit is well and truly supported by the so called independent groups, judges and individuals who have some power to intervene but would rather be doing something more interesting than sort other people's problems out
Don't know if you heard about the Post Office Horizon computer scandal and the TV series that raised awareness and brought about some results, but I do believe that if relatives could be represented in a similar and hard hitting TV series, maybe then something would happen. Real change and real action happens in this age of celebrities influencers and social media.
Any film directors out there looking for an Oscar?
You're completely right LaVerite, the entire system is wholly corrupt. Local authorities cover for poor excuses for ' care' providers and then the COP cover for local authorities. I think the fact Legal aid funding has been reduced drastically in recent years has made it much easier for Local authorities to get away with their appalling treatment of service users and their families. They know they can breach the Care act and violate people's human rights left, right and centre but they couldn't care less because most people unfortunately aren't in a position to legally challenge them.
I don’t know if you’ve seen my posts - link above? All your comments just add more evidence to our case for reform. I am writing to Mencap to ask for them to facilitate a meeting with Ministers for social care and guardianship so we can share our stories and change the current sustem that assumes state is better than family. I will keep you posted.
Hi Shedman1, I think your idea to push for change to the current biased system can't come soon enough for everyone, although I'm not sure if Mencap is really attuned to its members concerns, their CEO did a piece on ITV recently, stating that two thirds of those with learning disabilities were still living with parents into old age, and that parents needed to plan sooner for their future. Many of us found this extremely patronising, Mencap should be looking at why parents keep their loved one with learning disability at home as long as physically possible, the answer is all too obvious if only they read the harrowing comments on their own forum 🤷♀️
Thank you and interesting to hear what you say about Mencap’s CEO. I sent a letter to him yesterday, referring to all the posts on here and asking if he would facilitate a meeting with the relevant ministers for social care and guardianship so we could share our stories directly and discuss reforms. Let’s hope he backs us.
I totaly agree with your post about adults LD still living with an elderly parent . Mencap should be asking why as there is lots of reasons , one being they know how vunerable thier son or daughter is and are scared of the care system were they can be abused . We hear bad stories all the time . . Mencap seem to talk about more capable adults with LD who would like to work and dont need much support when ever I have seen them in the media . My son is 40 , he has very low IQ , non verbal, needs 24/7 care . Its been a very hard job looking after him all of his life , I know his vulnerabilities and carers he has had over the years have found it challenging but saying that , he is a happy and funny man except when something is not right in his life and being non verbal gets frustrated which leads to challenging behaviour which if he has the right consistent carer they understand him .its not always like that though .. Whats going on in the care sector at the moment and the demonising of disabled people in the media is very frietening which is another topic that needs addressing , perhaps by Mencap , I have read some very distressing posts in the paper today from the public which makes me wonder were the care realy is . I hope things get sorted out for all family members with LD , .....its tough .
I'm so sorry to read this and other comments in this thread. Deeply shocking and wrong. I'm so concerned with the stories I hear that I'm trying to do something different and have set up Satsuma Neighbour. We're slowly getting somewhere, though it's a massive mountain to climb. It won't be for everyone, but I do think it eventually could be for everyone, no matter their level of support need. I am convinced it is fundamentally wrong to house people with support needs only with other people with support needs. It is segregation. And that's where the power and abuse comes from. We're waiting our charitable status currently, but here's our website. satsumaneighbour.org/ Do sign up, if interested. We're also on instagram @satsuma_neighbour_
I think I read one of your posts a few weeks ago and will check out your website. I like you am totally against segregated living. Everyone should be able to freely live wherever they wish. This idea of forcing everyone with learning disabilities and support needs to live in marginalised communities needs to stop. It's disrespectful and a breach of their human rights.
Hi, so sorry you're having to live this, my biggest sympathies to you and your daughter. Re. the Ombudsman, I've found them to be toothless, useless, and a huge letdown. My son's post-school education application process was totally mishandled - definitely illegal and left him with zero provision. I also exhausted the Social Care complaints process and was gaslighted every step of the way. I went to my MP who did an 'investigation' in which Social Care told lies and the MP believed them. The response was 'they followed procedure and did the best they could'. It was my word against theirs and I lost.
I pinned my hopes on getting something from the Ombudsman. It's a long, laborious process and responses take up to 8 weeks. But their response was the same as the MP's and the burden was on me to prove that Social Care were lying about what they'd done. There was just a lot of 'Social Care said they did this...it appears you were offered that...', which was all lies. And the only outcome you can hope for is that they'll say you're right - they can't change any outcomes, or order that care or provision is changed.
In the end, the only thing I was left with was to make a complaint about the Ombudsman!
The whole thing broke me. So if you do go down that road, make sure you're very careful with yourself and don't get your hopes up that this will be the answer. Good luck, take care.
So sorry to hear about the nonsense and dishonesty you've had to put up with from Social Services. The two things they do actually excel at is lying through the skin of their teeth and trying to gaslight concerned parents and other relatives. They have been doing this to my mother for the last couple of years, whenever she raises concerns about my brothers care package, she's always dismissed and treated as someone who gets worked up about nothing. It makes my blood boil. I loathe Social workers and local authorities and I'm so frustrated that they can get away with their appalling behaviour and not be held to account. MP's really are useless. I've contacted two different ones in the past regarding my brothers care only to be told they can't do anything. The whole system is a mess.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
transport to and from social care
Autistic ADHD teen breaking up family 
Social Services Contributions - Another fight!
