Self Directed Support and perceived future difficulties

I am wondering if any of you out there could kindly give me some ideas (and I am always up for innovative ideas) of how to set up future plans for my daughter please. My daughter is 31 years old and was diagnosed with severe and complex learning disabilities, large and fine motor difficulties and is on the autistic spectrum.

Current situation:

Housing: My daughter lives in the same village she grew up in and where I also live. She has ‘community presence’ and is well known by local people. Her home is owned by her Disabled Person’s Trust and only my daughter lives there with 24hr support paid by her Personal Budget. This has proven to work brilliantly for her which is evidenced by her building confidence, and autonomy.

Support: Having a personalised team of support, employed directly, really works for her. Two of the team have worked with my daughter for over 10 years and the others not long behind. My daughter needs consistency and having different support coming/going would increase her anxiety, and it takes time for support to get to know and understand her. So, using an agency would not work as they have a high turnover of staff, however much they promise consistency. Currently I am the Responsible Employer and manage the team. We have a team leader in place who manages day to day employment matters.

I have Joint and Several Deputyship with an organisation that provides a Deputyship service, for my daughter’s Finances, so they are set up and ready to take over when I am incapacitated. However, they will not take over the role as Responsible Employer and they only use agencies.

I have sole Deputyship for Health and Welfare which allows me greater strength at Social Care annual reviews. There is no family close by and young enough to take over this role (I say young enough as in to grow older with my daughter)

As you can see there are holes that need a solution:

a. Responsible Employer needed so my daughter’s personalised support may continue when I am incapacitated. Who would Social Care regard as a Responsible Employer (my reckoning is that it would have to be someone with financial responsibility)
b. Someone to regularly visit to check on my daughter’s welfare. Ideally once a month! This person needs to get to know my daughter and be consistent ie. same person visits.

If anyone has any ideas or know of a similar situation where this has been resolved please advise. I would be extremely grateful, thank you

1 Like

hello ,
i completely and totally understand your Delema, all of my life i have observed my parent struggle with the thought , what will happen to my daughter when we are not around .
my name is don i am/ was the sibling brother carer . by now our parents had passed i was the full time carer
the year January 1st 2000 massive change in the care act transforming care in the community for learning difficulty and a whole range of other people.
most of what i am about to say will be in legislation and to the best of my knowledge still active, but totally ignored .
i consider myself lucky this all happened in my time , that i was able to take full advantage of this wonderful opportunity to provide my sister with a life that i myself would be happy with
for the parent and people that are not aware January 1st 2000 was the introduction of a policy name fare access to care .
in short this gave every family needing assessed care and support the opportunity to live in the community in their own place .
You request an assessment of need from your local health and social care department for an assessment of need .( this may have changed in name by now you need to check )
once you have had the assessment done you look at the hours an organising has been providing, this will play a big part of the assessment as the the auothorites have alrady agreed this these hours can be changed into money, to satisfy your health and social care department, i would suggest you go to three care provider organization in your aria with your personal care plan ask them what it would cost to have this support provided in the care plan ,
after you have quotes from all three care provider organisations take the lowest quote back to your local health and social care department, inform them you would like all the hours in the assessment turned into money as you would like to manage the care and support of your family member yourself or appoint someone to do this under your guidance.
once all this has been agreed .i would suggest you visited a solicitor explaining you would need a trust deed show him/her its aims if he/ she is satisfied a trust deed will be wrown up ,for the duration of the persons life the deed will clearly outlined what the deed was for .
i now turned my attentation to aproaching three close friends with a request asking them if thay would with myself be trustees for my sisters trust care fund , all agreed .
there names were added to the trust deed
now we are ready to start advertise for support carers i used a couple of local agencies with a brief of the personal care plan and a requarment for a CRB (criminal record bureau ) check would be part of comdition of employment , bank details would be needed to pay wags direct as we did not handle money , all were enthusiastic to help.
i found this very empowering for the first time in my life i knew a little background about people in my sister life , also baring in mind our family home was now going to be the new work place, in many ways it felt like i was going back to 20s/30s when some familys had personal staff
my next step was setting up a bank account with trust name all went well

i then approached an accountant explained the aim and would need her to deal with all matters related to wages. The accountant questioned me bout how the wage information would it be forwarded to her , i told her it would be by means of a spread sheet with names hours worked also agreed all personal details of bank account would be forwarded, the acountant agreed .
then the accounant explained to me for, her to do what i had requested she herselt would have to become a trustee to access funding for wages
well i did fel a bit arkward as i asked how did she feel about a CRB check ust to kep the recd strieght we al thoht it was funny the accontant agreed
all that was left was to inform the funders on such and such day all funding to be paid into this named trust fund.
thing went so well on the financial review all i did was to prsnt the ledgersfrom the bank showing what had come out and the lrdger from the accountant showing what had been paid and the ballance
by now you are saying no way , trust me be clear in what your aims are, you will get push back, professionals see this as a direct threat to themselfs.
just a bit of iceing on the cake ,.
i also set up a seperate trust on my death should i go before my sister the family home to be transferred into a discretionary trust to ensure my sitster had some where to live as long as it met her needs
also left instructions for trustees to apply for housing benifits to be payed into the discretonary house trust for maintance of the property .
it was hard work but hell was it worth it😍
hope this will give some hope if there is a wiil there will be away.
take care,

It’s a great dilemma - I was wondering if in your lifetime you could make a National charitable trust as the Responsible employer . I was thinking of MENCAP/ MIND etc who have unbiased trustees and could be made responsible for overseeing such an arrangement. Just an idea . Good luck .
Lina Graham

Thank you, that’s a good idea Lina and I’ll pop it on my ‘to explore’ list as in a National Charitable Trust eg. Mencap/Mind and I’m sure there will be others. I know of Mencap Golden Lane Housing but rather not sign my daughter’s home over to them, plus they also provide a care agency so my fear would be the support would morph into their agency staff, ‘but’ who knows until I make enquiries.

Self Directed Support is a brilliant idea and works but long term for those lacking mental capacity … Anyway, I’m sure there is a solution out there

Thank you again

I thought if it might be ok to twit this as you might have someone or other individual in similar situation and might be of help. From my experience, I found social media platform very useful for support and sing-posting. This is just a thought!!!

Hello Claudia

I’m happy for you to tweet but personally I don’t use twitter or facebook for various reasons. That would be great and very kind of you thank you very much.
I am a member of the county’s carers network and a member of several national groups.
All my peers who went the self directed support group, as in employing support workers directly (not using agencies), are in the same situation and so far we’re unable to come up with a full proof solution!
I’m sure we’ll get there one day
Thank you again

Hi Sallyanne, in recent years I have heard a few other families talk about similar issues but don’t feel I know enough about the solutions to advise. I think it would be worth contacting the Family Support Service at HFT who may have some ideas -they are very helpful at unpicking financial and legal issues (it’s a free advice service for families whose relative is over the age of 16- they help with a very broad range of issues). I’d be interested to hear if you find some answers that help to sort this out. I have written a planning guide for families, ‘Thinking Ahead: a planning guide for families’ which I am looking at updating next year and would be good to include information about this.

Hello Christine

Thank you for your response. I’m a member of Essex Carers Network and have come across HFT before, plus of course the ‘Thinking Ahead’ guide, you probably know Wendy Burt too.
HFT are now definitely on my list to follow through with.

There is a company called Home Care Direct who will take over the Responsible Employer role of directly paid support workers, but the last time I got a quote from them a few years back, they charged a fortune per hour which I doubt Social Care would fund. Though I suppose I could put it in my Will and Discretionary Trust to pay privately for their service. Just seems a rip off, but sharing the info with you in case you’d find this intel useful. Link below:

Thank you again

Hi there, Essex County Council have really adopted the Thinking Ahead guides which has been great to see. Wendy and I work together to run Thinking Ahead: Family-to-Family in Essex (workshops for family carers run by family carers- funded by the council). Thanks for the information- will have a look. I have wondered whether DOSH might provide support with this but you have probably already looked.
Hope to meet you in Essex when we are all moving around again, Christine

I think we have already met, years back, but I’m sure we’ll meet again.
I’m on the management team of ECN so Wendy always keeps us informed (Wendy also aware of this problem!)
Hopefully I’ll find a solution and then let you know
Take care