I’m looking for other people in a similar situation to my family. My brother is 55, has spina bifida/hydrocephalus and PD/LD, self funds which is very fortunate, but he cannot afford residential care for the rest of his life. As there is no involvement from SS its hard to know where to get advice/support. He lives in his own flat/housing association tenancy, with support which is really just heating up a meal 3 times a day. He is not able to organise a social life/activities/appointments or getting out and about. We are looking for families in Cambridgeshire who might be interested in clubbing together to buy a property and create our own private community with shared support and some communal space. Does anyone else self fund and have experiences to share? Advice/suggestions welcome!
Here are links to a couple of threads where this has been discussed previously here on the Choice Forum:
Whilst this is a different area from the N/West, I’d have thought it might be worth contacting John Roberts who’s been the manager of a pilot going for 17 mnths NW Care Cooperatives - this is about disability led coops across supporting personal assistants. A consortium of North West based Disabled People’s User Led Organisations comprising Cheshire Centre for Independent Living (the project host), Breakthrough UK (Manchester), Disability Equality North West (Lancashire) and Disability Association Carlisle and Eden, secured funding from Disability Research into independent Living & Learning (DRILL) and the Big Lottery to support ‘North West Care Co-Operatives (NWCC)’ a two-year project to test, develop and gather research on, “Co-Operative” models of care for disabled people.
‘These organisations identified that disabled people who wanted the choice of “a life well lived” had no option but to become a direct employer, which many of them did not feel ready for. Otherwise they had to yield choice and control for “a life well cared for” the use of mainstream care agencies or the unthinkable – a return to residential care’. John Roberts (mailto:firstname.lastname@example.org). If you were in our area I’d suggest talking to a supported housing charity like Care Housing who do bespoke housing solutions for people. It might be worth seeing if you have one - they could potentially manage housing even if you bought it so you have a long-term solution. The right agency can also look at a range of solutions including shared ownership and rental situationls ofcourse.
Hi there - thanks for your helpful and sympathetic response. It’s a shame they are so far away from us! We do employ a PA and he’s great, but the process is not straightforward at all. I hope that now we are starting to formulate a solution but if it comes to nothing then I’ll definitely make contact with John Roberts and pick his brain. We re going to contact Inclusion Housing who manage lots of local supported housing to see if they are interested. Will see how it goes - thanks again though.
I hope it all works out for you - and good to share things that
work or might do. Good luck, rose
Even though your brother self funds he should still be eligible for an assessment of his needs under the Care Act. He may also be able to have a Care Act Advocate to support him through this process if he would have ‘substantial difficulty’ with having an assessment and you feel, as a family carer, that this is something you are struggling to support him with. I have found some links to various pieces of information and local organisations which is relevant and will hopefully be useful.
Contacting a local carers group to talk to other family carers who are considering buying a property for their relative may also be useful.
Link to Disability Cambridgeshire who can give you advice and information - there is also a helpline number on their website https://disability-cambridgeshire.org.uk/about-us/
This is a link to Mencap’s information about having a needs assessment by social services and eligibility criteria https://www.mencap.org.uk/advice-and-support/social-care/assessments-and-eligibility
This is a link to That Voice Cambridgeshire & Peterborough who are an advocacy service https://www.totalvoicecp.org/about-us/about-total-voice/
This is a link to easy read information about Care Act advocacy https://www.voiceability.org/easy-read/care-and-support-advocacy/
NHS information about self- funding and getting a needs assessment. https://www.nhs.uk/conditions/social-care-and-support-guide/money-work-and-benefits/paying-for-your-own-care-self-funding/
Cambridgeshire County Council’s information about getting a needs assessment and what they will need to know https://www.cambridgeshire.gov.uk/residents/adults/organising-care-and-support/care-needs-assessment/
I hope this is helpful and your brother gets the help and support that he needs.
Hello Charlie - thanks for your reply. I’ve been trying to get an assessment of his care needs since February - first they turned me down flat, saying he needs a diagnosis first, then they begrudgingly agreed to a meeting with a nurse and senior social worker from the LDP who turned him down saying he “does not meet the criteria for the health component of the LDP”. They did not explain what that means in practice, nor did they supply any evidence to support their conclusion. They don’t seem to accept that his diagnosis at birth of Spina Bifida meningomyelocele and hydrocephalus is in fact a learning disability . I thought about getting a private psychologist to assess him but was advised by Shine charity that this could be construed as biased because we would have paid. We tried getting the GP involved but he said he could not give a diagnosis of learning disability so I suggested (hadn’t occurred to him apparently) trying a referral to Neurosciences. That was turned down because apparently they only take patients who need a diagnosis! Which would imply that they accept his diagnosis of LD . . . Now we are trying to get a functional assessment from the Psychology consultant. In the meantime I have no support from any specialist LD service for my brother, and some services will only get involved if they have a referral from the LDP. And all this, despite not asking for anybody to pay for anything or provide any services. I’m totally astounded that nobody will take my brother’s very profound learning disabilities seriously, nor can be bothered to find out about them. I have sent a long letter to the LDP with plenty of evidence (unlike theirs) and await their response. Will see what happens!