I realise this was on ITV a month ago, but wondered how others felt about it? Involving Jon Sparkes new Chief Executive of Mencap.
Personally I found it a little insulting, the future and planning for our loved ones is constantly a worry, especially those totally unable to live independently who are nonverbal with the cognitive understanding of toddlers. The video directs you to Mencaps wills and trusts, which is useful, but will not help monitor our loved ones benefits and wellbeing when we are no longer here.
I think the fact, as they stated , that two thirds of those with learning disability continue to live with parents into old age, should tell them that we have no faith in societies provisions to care and protect our loved ones who are extremely vulnerable to abuse in residential and supported living settings.
For those with severely impaired cognitive ability, I feel mandatory CCTV in all areas of residential and supported living, would give greater protection for the patient and the paid carers, protection is far more important than privacy , many like my son have no sense of self consciousness or embarrassment, obviously those who have more awareness about dignity and privacy could choose whether they want CCTV.
Mencap needs to campaign with The Downs Syndrome Association and Alzheimer's Association for greater protection and ongoing training, at the moment care companies when advertising for staff often state 'no experience necessary ' which is ridiculous, because they are desperate for staff.
This is a National problem, we will continue to see heartbreaking images of abuse until things dramatically change.
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Bluey203
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Parents often have no choice other than to plan their child's future. However, legal responsibility stops when the child becomes an adult. But, the moral argument gets used against us every time.
Hello Bluey,I didn't see the program you mentioned but relating to your comment on cctv/monitoring, I agree.
I have a 61 yo brother who has severe LD, Autism, lacks capacity and has the comprehension of a toddler. He lives in a residential care home and needs everything doing for him, similar to a toddler's needs. Fortunately I am his RPR for DoLS and hold the deputyship for his property and financial affairs, as well as being his sister. Both of those give me more say on his care than just being his sister so I can use them to make complaints more forcefully.
Despite his being funded for 16 hours per day of 1-1 care plus overnight support, I really don't think he gets the support paid for.
The supported living model seems to be in favour by care services because the funding moves from local authority purse to elsewhere. I have been told it gives the person more dignity and choice although from what I've read here I'm not convinced it gives the safety and protection many of them need as they are still vulnerable.
A social worker informed me my brother's needs are too great for him to live in a supported living environment. In addition, as far as I am aware SL services are not monitored by CQC, so they have even less oversight. Coupled with no CCTV or proper monitoring we have to put our trust in services that exist to make money.
My brother lived in a residential care home since 2004. His care was great, the carers were all long serving, worked well together and when you walked in the door there was lots of interaction with the residents. It was clear they cared and the whole house was like entering a family home.
Unfortunately the people who oversaw it were no longer able to manage and passed it on to a larger care service. They left it to run as it had fir a few years then took over, drove most of the existing staff out because they were on their original contract terms, and put a Supported Living manager in place although it was a residential care home for high needs, non-communicative residents. Needless to say care failed, many complaints followed, a couple of residents died, and the care home was put under investigation followed by enforced closure.
Fortunately we moved my brother out before he experienced any real harm, but since then I'm afraid to say that even residential care homes seem to be being run as SL services now. We are having to be constantly vigilant and I feel like an unpaid member of the care services staff, as I am providing the monitoring they should be doing.
I know of a family who put their high needs, nonverbal daughter into a residential care home a few years ago. They raised many concerns and had a bad feeling so placed a hidden CCTV camera into their daughters room. This gave them the evidence their daughter was being abused and they brought her back home.
Putting a hidden camera in place is illegal but they were not charged because of the abuse finding.
It is clear the whole system is failing. Brexit caused a lot of good european workers to go back home, funding cuts are resulting in low wages and many staff are doing the job because it suits their needs and not because they care for the vulnerable people they care for. More unscrupulous care services are opening up because it's a money making machine with limited oversight. The result is that the most vulnerable in society are the people that are suffering and being failed.
My own experience with my brother's carecis that it's taken 8 years to go from great care to my having to be constantly vigilant and involved. I am lucky because I have the time, ability and persistence to do this but I realise that many don't.
It's a heartbreaking situation and I really hope it starts getting better soon because I can't bear to think of the consequences of it getting worse. Unfortunately the economy is not looking too great at the moment for me to have confidence in the system.
Thanks for posting as it's a really important topic.
Your social worker is incorrect about your brother's needs being too great for supported living. It can be used for any level of need. Some people have an individual property set up for their needs with staff supporting 24/7. It's worth looking into further, you can push for this if you think it would be a better option. Apparently it's cheaper for the LA too because the person can claim housing benefit to cover the rent. It may be possible to install cctv in such a setting because there would be only 1 vulnerable person.
My family member's supported living worked very well for many years but the support provider (charity) has had to make cuts impacting both support workers and manager input. Quality is affected.
NHS CHC and local and national government do not seem to acknowledge the lifelong needs of learning disabled adults as they once did. As a result, their support is overlooked in favour of those with other needs.
People with a learning disability do not have a voice, particularly if non-verbal and severe cognition. Families are their only voice, whether in the family home, in supported living or residential home. We have to be proactive, offering advice as tactfully as we can so that we aren’t recorded negatively.
People with a learning disability do not have an effective champion for their rights.
Groups for carers of people with a learning disability have been subsumed into general carers groups. At one time our specific lifelong caring role was seen. No
I am involved more than ever (after over 10years) in our family member’s supported living to see that all is as it should be. I try to make this as much of a partnership as I can. I believe the support provider is doing their best in difficult circumstances. It is important to let social care and health know how difficult it is, and how this affects your family member.
Hi, The CQC has written about personally using CCTV, from what I understand, it should be OK so long as you get the cared for persons permission, or it's 'in their best interest'.cqc.org.uk/contact-us/repor...
I'll have to take your word for it as I don't know, but if your loved one has DoLS in place then any monitoring equipment has to be approved by a DoLS Assessor.
My brother has DoLS in place and I tried to get a Sleep Analyser approved during his last review. This would provide a better indication of his well he is sleeping as lack of sleep can lead to epileptic episodes. It was refused on the basis it was too intrusive. He currently has a baby monitor in place to determine how he's slept which, imo, is more intrusive and less informative but the Assessor still didn't approve the Sleep Analyser.
I've not given up but will be better prepared with evidence when the next assessment comes around.
That is shocking, there doesn't seem to be any common sense!! It would be in your brothers best interest for his health, it is so frustrating when a 'professionals' opinion overrides yours, when you obviously know your loved one better than anyone and will always have their best interest at heart because you love them.
Absolutely wholeheartedly agree with you . It’s time the needs and safeguarding of our vulnerable loved ones are listed as top priority and not the needs of the people who ultimately care for them. The second point as to “ No experience necessary “ fills me with horror and that Care provider should be avoided at all costs. In my experience of trying to find a suitable placement for my Autistic daughter I’m afraid I came across so many providers that were only interested in filling the vacancy and not whether the placement would be suitable for my daughter or in fact the impact that she would have on the other residents. It’s a nightmare. and unfortunately not one that I have woken up from yet !
I agree. It takes a certain type of person to go into the caring profession. Some people do it for all the wrong reasons. I’m 62 my daughter with LD is 37 and I know that living independently with support would be the best thing for her but in my heart I just can’t do it. The thought that she might end up with people who don’t actually care about her , fills me with dread.
agree wholeheartedly re cctv. I found the ITV article patronising. Oh really?… I hadn’t thought of planning ahead!! As you say we can plan a certain amount but it’s the lack of faith in the support system that’s the problem. I constantly balk when they talk about caters as “unskilled”. There are so many skills needed in that role. I know they I don’t have them all despite being highly qualified in other roles. So let’s also start asking for these carers who have such a vital role to be given the status they deserve.
Agree the status of care workers needs to be raised, better training, professional status and better pay. Some people do it as a fill-in job because they can't find another job and staff turnover is very high.
What they don't tell you regarding Mencaps wills and trusts presentation is that no high street bank or building society will offer a disability trust account I contacted mencap to inform them of this and advised this should be in every solicitors presentation so people don't spend hours going around with a trust document compiled by a solicitor trying to open an account but no reply to date this was 9 months ago !!!!!
Thank you for your feedback and huge apologies you never received a reply from Mencap's Wills and Trusts service regarding trust accounts. Please email us again and we will be happy to help you regarding trust accounts.
Once again the issue identified completely ignored I know about trust accounts my point is every presentation should inform all candidates not to bother with all high street banks and building societies when it comes to trying to open a trust account
Hi JP1711, I’m very interested in this very point re bank accounts for trusts. I know I need to set a trust up for future planning and as I work in a bank am also aware we don’t offer bank accounts for this purpose. I haven’t so far been able to find out what the solution is, do you know how to overcome this problem and what type of account is needed, and who provides it?
Happy to contact Mencap myself if you don’t know . Many thanks!
Absolutely agree with everything especially cctv. This last ten years that my son has been in SL has been the worst 10 years of mine and his life 75 and 50 respectively. Shocking this has cost 100s of thousands of pounds for absolutely zero effort from this company. I've complained etc etc, yes cctv and capture them sitting around the kitchen table drinking coffee and chatting all day long!!!! This is what their worried about.
hi. I’ve opened a trust account through metro bank. They were the only ones I could find offering these accounts. I wasn’t impressed with the responsiveness of mencap to queries so went with Renaissance Legal for setting up and managing the trust. They’re actually cheaper than mencap too for administration.
We have set up a discretionary trust attached to our wills which will activate upon our death, but I'm now considering transferring it to Renaissance Legal (even though we're in Devon) as we put our other son as trustee with his uncles for our son with severe learning disability , but realistically I now think it's too much responsibility for them (our other son has autism/aspergers and struggles with official paperwork)I see Renaissance Legal can act as joint trustees, dealing with all the legal side of things, so my other son could also be a trustee/beneficiary with support from a very knowledgeable firm, I notice Mencap only act as sole trustees.
I worried transferring would be complicated, but upon research it is straightforward, the solicitors you want to transfer to do all the work and you don't have to contact the original solicitors.
Hi, I was very impressed with Renaissance and they are relatively local as I'm in Sussex but most of it was done by email. I only visited once to check out the offices and see how professional things looked. I have no siblings and no other children so I had to have a totally independent trustee. Myself and my husband are trustees and then it will pass to Renaissance. I have provided a comprehensive list of wishes that set out what should be paid for. Any remaining fund passes to children of close friends and charities. Mencap trusts as you say can only exist with them as sole trustees and I felt I was never going to speak to anyone of seniority. Renaissance weren't cheap (£2,500 for the joint wills and trust set up) but the peace of mind is priceless.
Thanks for sharing this and I agree that it is a little insulting. It's what we're all lying awake at night worrying about and why so many parents are still looking after their adult children at home into their old age. The situation is so precarious. My son is nearly 28 and still living at home. He has a fair amount of independence but needs support and is vulnerable. I have set up a charity (our CIO application is pending) called Satsuma Neighbour, to try to campaign for a change in thinking about housing for those who need care and support. But also how we ALL live, as I think it's fundamentally wrong to 'segregate' those with support needs into whatever supported housing model that exists. It's not good for them and it's not good for society and is why there is so much abuse (of varying degrees) in the system. We want to build a supportive, properly inclusive, urban community (in London, where we live), for those with lower support needs, like our son, but there is no reason why this shouldn't be extended to those with higher support needs. And we have national aspirations that there be a Satsuma Neighbour community in every town and city in the UK. I have been having meetings with an organisation in America called OSG (Our Stomping Ground), set up by parents, and they now have 7 communities fully functioning. One of the young people is 'Emma' from the film 'The Reason I Jump' (a must watch if you haven't seen it!), who has very high support needs but now lives in her own apartment within a building that is entirely inclusive where other people/families etc live alongside. She has care coming in but she is also totally accepted and looked out for by her community. It can be done and change must happen here too. Please do have a look at our website satsumaneighbour.org/ and sign up to our mailing (and follow on Instagram @satsuma_neighbour_). We have a mountain to climb but we are climbing it! I cannot leave this earth with my fingers crossed that something will change/get better, as I don't believe it will. And even though my son has lower support needs (and won't need a residential care home), it is precisely this group of more independent young people who are prey to exploitation and modern day slavery etc.
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