Family Rights - Adult Non-Verbal

[Lills]

Hi! I have a 37 year old, non verbal daughter in Supported Living, and the lack of supervision in her placement is terrifying. I really need to know what rights I have over her care - to change/manage/supervise it myself. Please help! Thank you

[miriam.valencia]

Dear Lills,
I work for Mencap’s information and advice service. Thank you for posting your question on Family Hub. I am very sorry to hear that your daughter is not receiving the right support in her home. That must be extremely worrying for you. Your daughter should be getting care and support that promotes her wellbeing and protects her from abuse or neglect. I don’t know the details of your situation, but before dealing with your question, I wanted to say that if you believe that your daughter is currently at risk of abuse or neglect, you should raise this with the local authority - I can imagine you have already approached the care and support provider about your concerns. You can approach the adult social care team, or each local authority also has an adult safeguarding team (sometimes called an adult protection team) – the details should be on your local authority website. More about this is on Mencap’s website here: https://www.mencap.org.uk/advice-and-support/social-care/what-do-if-you-think-someone-being-abused.
You asked about what rights you have to change, manage and supervise your daughter’s care yourself. There are two areas that it might be useful to get to know about here. The first is the Mental Capacity Act, which is the law that governs what should happen when a person is not able to make a decision themselves, in other words, they lack the mental capacity to make the decision. Your daughter should be supported to make her own decisions as much as possible, but if she is assessed as lacking the capacity to make a particular decision – such as moving home – this decision should be made in her best interests. There are safeguards in place in relation to how decisions are made, and you can read more about this on the Mencap website here: https://www.mencap.org.uk/advice-and-support/mental-capacity-act. Sometimes family members can be appointed by the Court of Protection to be Deputies for their relative and to make decisions on their behalf on certain issues. However, you shouldn’t need to have this status in order to be involved – there’s a useful toolkit you can use to make sure you’re always involved in decisions here: http://www.irwinmitchell.com/personal/protecting-your-rights/factsheets-and-template-letters/best-interest-decisions-tool.
The second area it could be useful to read up on is self-directed support. This is where your family member’s care and support is funded by direct payments or a personal health budget – the local authority, or CCG would provide a sum of money that would enable you to employ staff directly and manage your daughter’s care that way. You can read more about this at the following websites:
www.in-control.org.uk
www.employingpersonalassistants.co.uk
www.vodg.org.uk/publications/top-ten-tips-when-choosing-a-support-provider/
Some families find that this is the best way to make sure that their family member has the right support. However, it is a lot of work to organise and oversee a significant package of care and support, and it’s important to bear in mind that you may have the responsibilities of being an employer too. Your local authority should provide information and advice for people managing direct payments, and you might be able to get some tips from other families on this site too.
Please give our helpline a call on 0808 808 1111 if you wanted to talk about this further.
I really hope that you can get the right support in place for your daughter so that she can get the best out of life.
With best wishes,
Miriam

[Lills]

Thanks for this Miriam, I do appreciate your input. Truly I have done all the safeguarding/complaint procedures etc., to no avail. CTPLD and the provider collude together to exclude me, with the result that my daughter isn’t getting the care she deserves. I am 70 in a few months and not sure I can take on the management of her care myself, but am absolutely sure that this won’t get any better without that. Over the 2 years L has been in this company’s care, I have tried to distance myself from the day to day supervision over and over. Every time I let go of the reins, something happens which, in itself may seem minor, but put together look to me like neglect - i.e., she has severe scoliosis and was walking around in shoes that were falling apart and very worn down, because ‘she chooses them’. When I said ‘well don’t offer them to her … put them in the bin’ they just look at me like I was a monster or (more often) ignore me. How can I trust them with the big things, like medication, if they can’t even throw a pair of shoes away without instruction? It’s not like she doesn’t have others! Also in the recent 84 degree heat, she was sunburt - twice - because ‘she didn’t want to come in’! Also, the company keeps asking me to write things I have taught members of care staff AND management and they should have notes on, but don’t (or just won’t show me!). They ‘manage the placement’ but don’t ‘supervise the placement’ - i.e. it’s all done by remote control from the office, taking the word of the carers but almost never (if ever) making unsolicited visits to see what’s going on. I am going demented. I feel that any supported living placement will be unsupervised, leaving poor L, who has already been abused in a care home, at the mercy of people who either don’t know what they should be doing, or don’t care. It’s scary.
Regards
Chris

[miriam.valencia]

Dear Chris,
I’m very sorry to hear about your daughter’s experience. I think it might be helpful to discuss this to see whether our information and advice service could help you challenge the support your daughter is receiving. If you’d like to get further help, do give us a call on 0808 808 1111.
With best wishes,
Miriam

[Mumof3girls]

I found myself in a very similar situation with my daughter - in her case it was a social worker taking really stupid decisions that put her at high risk of permanent physical harm. I applied to the Court of Protection to be appointed as her deputy. It was a really simple process and gives me a lot more clout than I had before - I can now overrule bad decisions that put her at risk. It would empower you to say that her current living situation is not suitable and demand that social services find a better alternative. You just fill in a relatively simple form to apply, and then once a year you have to fill in another quite straightforward form with a welfare report, and once a year someone from the Office of the Public Guardian visits you to talk tings through and see if you need any help. So the process is nowhere near as daunting as it might sound, and does put you in a stronger position to insist on better treatment for your daughter.

[Lills]

Hi, and thank you for this. It’s very helpful and I think I’ll try this route. I have a meeting on Tuesday 22nd with CTPLD, and if nothing looks like changing, then I may have no choice.
The latest is … I called in to see L on the off chance she might be in, and was told by carer I had to phone first!! My only question is WHY? If they have nothing to hide, what difference is that going to make! So now … I can’t talk to staff about anything BUT L’s care (I’m frightened to ask how they are!), staff can only talk to me about selected parts of L’s care, I can’t call in without an appointment (!), I mustn’t email the Management, and I may only see selected records regarding Leanne! And of course, everything that is wrong is my fault … like I left her in the sun - in 84 degrees - to get burnt (twice), and I left her wearing shoes with the soles flapping about and her toe sticking through the upper (she has severe scoliosis … footwear matters! I am truly tearing my hair out! Thanks for letting me rant!

[Mumof3girls]

Everything you’ve written is ringing alarm bells for me. Of course you have an absolute right to email, phone and visit without notice. In fact, as well as my daughter in her care home I also have elderly relatives in an old people’s home, and in all their cases I make a point of never letting the home know when I’m coming because I’ve found over the years that you learn a lot more about what’s really going on from unannounced visits. Being appointed as her deputy would enable you to overrule them on this, and also to investigate whether there is somewhere more suitable that she could live.

[Joyrock]

Hi I am a Mum and my 26yr son is in supported living and I too feel I am fighting the system as I want to continue to be involved in my sons decision making but feel I am being excluded by Social Services saying they now make his decisions and after I have constantly question this they finally replied after 11 months saying while I can be included in decision making they state referring to me that she ‘does not have a unilateral veto on any decisions’

So basically I could be involved in decision making but they will have the last say.

Having investigated this as much as a sole parent possibly can it would appear supported living is a very grey area and not supported by rules and regulations of residential care.

I would suggest you take care of your daughter as you feel is best for her needs and let Social Services take a case against you if they don’t agree…not the other way around.

You are her Mother the only person she has known all her life and it is my opinion you should continue your role in helping her make decisions and the Social Services should be supporting you in decision making not the other way around.

I am thinking of starting a group for parents/carers for Supported Living as I am very concerned how parents/carers are being treated/advised.

Keep fighting for your rights and your daughters.

Happy to be contacted by PM should you wish or anyone who is in a similar situation.

Joyrock.

[Lills]

Thanks for this. For the time being I am being treated with some respect, and as a result my daughter is getting better care (of course, and not difficult!). We have lost the two junior managers who made life such hell, and are dealing with a new locality manager and the Area Operations Director. Between them they have quite quickly managed to organise a fairly good team of carers, who all listen to me and ask my advice … a very great improvement over having been instructed to shut me out in every way!

One of the manager’s used to laugh at me right at the beginning, because I left every meeting we had with the passing shot ‘Time Will Tell’! That’s all I can say for the present … I am praying and believing that the hideous past is gone and a beautiful future is marching firmly towards us with a smile on its face!! Time Will Tell!!!

Thanks again for the support and advice, trust me, they will NEVER get rid of me, and every time they try I become more determined. You’d think they’d know that after 28 years with this council!

God bless

Lills