A little like the Post Office scandal, care providers tell us and make us feel like we are the only one with issues but I know there are hundreds of not thousands of people experiencing the same and worst but there is no collective to unite together!
After clicking on some of the posts in the couple of weeks since I have joined, most people have written about single set queries relating to their current situation. Due to an two and a half year battle with my 30 year old sons current care provider, I feel I have covered most issues and wanted to share some advice. I would absolutely recommend Power of Attorney for your loved one if they have Mental Capacity for Health & Finance both of these were easy to apply for and free from the GOV UK website for a person who has a disability, solicitor wanted £600 to do it so I did it myself for free!
Court of Protection Deputyship is for people that lack Mental Capacity and is more costly and in depth I presume.
With current events, I believe if I did not have POA with the lies and collusion between local authority, care provider, staff and inaction of the five CQC complaints for my sons house, he would now be under the 'control' of the local authority, with all decisions being made for and about him taken out of my hands
My sons care provider were informed of my POA when I sent it to them. The care provider mounted a challenge that I was an unfit parent to have it. They want all tenants to be mute and all families dead, buried or uninterested, it makes their life much easier. Lies and falsehoods fed to the local authority about how I control my sons finances, do not let him spend any money! I welcomed any challenge as I had done nothing wrong and had eight years of spreadsheets to back all his finances and free spending up. I did not realise that what you cannot prove, you just make up and falsify!
When asked if my son could have a Malibu & coke in the pub, I replied, no, he has epilepsy and alcohol is a trigger for seizures. Can he buy a packet of ice creams when shopping, nope, buy just one ice cream as he cannot rest in the house till he has eaten them all in one sitting. Can I buy this picture I like for £130, nope we have just booked your 30th birthday party that you have asked for that will come in around £1000's. Always generally advice, agreed with my son with his agreement and discussion to weigh up the pros & cons after 30 years of knowing him but the new carer that has worked with him for a week, knows and understands his condition better than me and feels his life is being restrictive! God forbid that they are interested in listening to your reasoning and explanation.
Unbeknown to me a local advocate was despatched but she had a little chat to the staff first...first question to my son, are you scared of your mum? His response, of course not, that's bollocks, what sort of a question is that, I love my mum-advocate recorded his answer down as NO. Would you like to sort your own money and spend what you want, when you want? My mum helps me with my money and I am fine with that, advocate recorded his response as my mum would never allow that! They were only two of the major discrepancies.
At the end of the advocacy meeting, what should have happened was that she read his responses back to him to confirm but in fact when he had asked her what she was writing, she replied, Oh nothing, I'm just doodling. After I raised to my sons social worker that no one has ever read his report back to him, she obtained a copy and went through it with him. The conspiracy with care provider, staff and advocate came to light I have raised an official complaint.
In addition my son has a communal money tin between the five house tenants that they all contribute towards equally for cleaning products, loo rolls and all associated other things needed in the home. I have currently suspended payment to be held in a holding account as I have been asking for 2.5 years to have sight of the spreadsheets to see where all the money is going to no avail. I am told it is because of GDPR a curtain that a lot of care providers hide behind. I am not sure why if all gents contribute the same amount monthly where the GDPR comes in for toilet rolls, bread and milk ?!?!
Then.....I am sent an unofficial work WhatsApp group by a member of staff that has left, disenchanted with a company that she has raised safeguarding concerns to that went ignored, that have called her a liar and troublemaker to the point she left the company. Eight months of WhatsApp messages between a Team Leader, House Senior and staff and it was horrific. The level of personal insults, salt in parents tea when we visit, staff being told by a manger, write a report and make it sound terrible. Keep going people, remember parents are irrelevant, we are doing the job that they can't. looking after their loved ones and much worse!!
Any how, I am taking them on, speaking to a public law solicitor Monday, not for compensation, because I cannot get the last six months of my families sanity back to to make them have to stand up and be accountable for their abhorrent apathetic behaviour.
In 2.5 years we have had three safe guarding issues, seizures not recorded on house paperwork, five months to get a risk assessment to go swimming, four staff that have raised issues finished or moved, staff involved in safeguarding issues moved to other house rather than disciplined and sacked and even more horrors.
You may ask, why don't you just move him? One of the staff is marvellous with him, he did have two but they just finished her for raising a concern, with immediate effect! My son lives near his Nana and me and loves the local area and most importantly....to where, everywhere is full!
In eight years of supported living, we have only ever had three great vocational staff, one at his previous house and two more recently, they are few and far between!
Supported living is a cash cow, HMO's and housing associations come under different rules for housing benefit, it is basically a licence to print money, my sons house with five tenants receives £1180 per WEEK in rent from the local authority, £236 each tenant. If I rented next door as a private tenant to move my son in, for a two bedroom house LA would pay £124 per week housing benefit, but they pay my sons care provider £1180 per week for theirs.
If I could do it all again, never pick a care provider that owns the property because if it all goes wrong, you cant just change provider if they own the house but if it is a housing association owned house you could if all tenants in agreement to change.
Life is not great at the moment, too much worry, I need to find a forever home for my son in case I have a heart attack soon which is what they would love, I think.
While I still have a breath in my body I will fight for my son to have the home and life he deserves to have. He is the most amazing person and a joy to be around but I moved him out for independence for him and comfort for me to know he will be looked after when I am no longer here. Little was I to know what a complete shower of s*#t that some companies are allowed to be.
Protect yourself and your families and do a POA or COP Deputyship tonight! It gives you some protection at least for your loved ones.
I am sure there are great providers out there and great staff too, just not where we are at the moment!!!!!!!!! Not sure if this current nightmare will be resolved without an empty bungalow appearing soon with a space on the ground floor!
Money left for activities for our 23 year old son in residential care
Employment for people who have learning disabilities 
Hisson
