A Place of Their Own

My daughter is 37, totally blind with some mild learning/autistic tendancies/medical needs. In the last 18 months, (after the loss of my parents within 9 months of each other), we have started talking about the idea of her moving into a place of her own and she is up for it! I am looking for very specialist accommodation, which will meet all her needs. There is a development being built which could meet her needs and all of a sudden it seems very real. .I am now nearly 65 and we need to make this happen, so I can have some peace of mind about her future and she can develop an ‘independent life’. I would love to hear from parents whose adult children are living away from home or who, like me, are at the beginning of this ‘journey’.

My son has SLD, went to boarding school at the insistence of my GP, my health permanently damaged by caring. My son is now in Supported Living, he has his own flat with support staff coming in. It’s been a rocky road, getting the right carers is vital but difficult. M and I have made his flat a real home from home, he comes home every second or third weekend. You are doing the RIGHT thing.

Hi pollyanna3
I fully encourage independent living for all. It’s finding and keeping the right support that is difficult. You might be surprised about how much she learns to do for herself. The fact she is “up for it” means you are already over the first hurdle.

Have you also put ‘guardians’ in place who would take over your role should anything happen to you?

Hi, thank you for your replies, it really does help me not feel so alone.

I can already see a difference in my daughter’s attitude to ‘independent living’ she is now keen to do as much as she can for herself and talks positively about having a ‘place of her own’. I don’t have anyone I can appoint as her ‘guardian’ . I have just changed my will leaving her ‘inheritance’ in a Trust. I am her Deputy, (set up with the Court of Protection) and responsible for all ’ finance and property decisions’ but there no one to take over from me. Any idea what happens in these circumstances?

I think, if you don’t appoint someone then the council takes over , under the Court of Protection. Does the inheritance trust name trustees? Could they take on the other roles too?

Mencap seems the charity with the most information on such subjects.

Hopefully it’s all a long way off and you can enjoy helping your daughter become more independent. My boy has anxiety issues which have held him back which he now seems to be overcoming and its lovely to see him interacting with the rest of society.

Thanks for your reply. I set the Trust up with Mencap, I have named family members in my ‘letter of wishes’ and hope they will choose to be involved unofficially. Losing both my parents unexpectedly, gave me the wake up call I needed to stop thinking about my daughters future and take action. We will know in the next 12 months, when the development is built and have details of the accommodation/level of support whether this is the right place for my daughter… watch this space…

That’s the wrong way to think about it.
If there is somewhere being built near you, then get her name on the list and make sure she gets a place. THEN (and only then) start agitating if you don’t think there is enough support.
My friend, widowed, with health issues, in her 70’s with a Down’s Syndrome daughter, desperately wants her daughter to move away from home but she keeps rejecting all the places that she is offered as they “are not quite right for …”
Once someone with special needs is in residential accommodation/supported living, the council is duty bound to ensure that the person concerned has what she needs.
When did your daughter last have a Needs Assessment, and you, a Carers Assessment? These are VITAL, and you must say very clearly I want X to be living independently this time next year or whenever.
The alternative, that you die and she has to move out to wherever has a space, when she is grieving and you are not around to help, is surely a million times worse?

Yes, finding a suitable place is only a small part of the picture. Funding can take months and months to sort out. My relative in supported living has ‘lost’ several placements because funding wasnt agreed in time.
Start talking with the social workers now!

Thanks for your advice. Our situation is a bit different as the development is being built in Surrey and we currently live in North London! I do have her name on the waiting list for a place. This is a unique development where specialist housing for people with visual impairment are being incorporated into a small development of houses for sale. The new houses are coming onto the market in January and, if the price is right, we may decide to move into a house on the development anyway then I can make enquiries with Social Services re assessments, funding etc.

No. You MUST get the assessments done asap, by your current authority, many authorities take a very long time to do an assessment. There is an agreement that any new authority will provide care at the same level until reassessment is completed. Places will be allocated long before the building is complete, if my area is anything to go by.

Assessments ?

Time wise … a post code lottery … upto a YEAR on some manors !

Best check with your own LA ( And new one ? ) as to likely waiting time if plans to move are afoot.

Even then , time delays in one LA taking over from another … 16 months in my case some 17 years ago !

What was on offer from one LA might not be so under another.

I’m hoping that someone will produce a " Waiting time post code checker " … similar to the UC rollout / benefits ones … to save ANYONE time in doing their research !

The Ombudsman has said that an assessment should be completed within four weeks!

I recenlty attended a talk about the planning for a new development for people on the autistic spectrum, it really started about two years before anyone moved in.

What the Ombusman says and what’s happening on many LA manors is comparing chalk and cheese ?

I would be surprised if ANY LA undertook assessments within four weeks of being requested.

Same with the infamous Care Act 2014 … what it says and what’s happening in the REAL world … as numerous postings on that thread will reveal.

Hospital discharges can be added to the above !

Unless someone enforces whatever with a sledge hammer , NOTHING will change in the real world.

I totally agree Chris. The LGO is now involved in M’s situation. LA promised reassessment in June, they might have done an assessment but it’s riddled with errors, I keep telling them of course. Now just 12 working days left before M comes home to me for Christmas, then starting with a new provider December 27th. Still no accurate assessment, no personal budget, no agreed care plan.

This is why it’s so important to start things asap if the OP’s daughter wants one of these places.

" Enjoy " this one … July , 2018 … The Guardian :

**_Autistic people wait years for diagnosis in some parts of England.

MP says " Scandalous waiting times " affect access to NHS support for those with autism._**

**_People with suspected autism are being forced to > wait more than two years > to be assessed and > almost four years to receive their diagnosis> , new NHS performance figures have revealed.

The long delays have been criticised as “scandalous” by the former health minister Norman Lamb, who obtained the figures, and “completely unacceptable” by the National Autistic Society.

Under NHS guidelines, children or adults in England who are thought to be autistic are meant to be assessed within three months._**

Interlocking thread … legal aid cutbacks … how can an ordinary person take on the " System " … full of quasi professionals with their jobs and reputations at stake ?


Talk about the System protecting it’s own ???

Hi Pollyanna
It isn’t just the cost of the house, it’s who will pay for the support personnel etc. Do check with the provider where this would be coming from an what the process is
My ASD relative is in a Home provided by Autism UK, a charity, but his place is funded by the Council where he used to live, some 200 miles away

Thank you for that information… I see what you are saying now … I will get on to Social Services to request an assessment, I had not realised assessment would be transferable.
Thanks Bowling Bun

Thanks too Mrs Average…as you can see I’m new to this process and all advice is much appreciated.

My son lives in a privately rented flat on the edge of the New Forest. His rent is paid for by Housing Benefit, except for about £2 a week. As he is a vulnerable adult the rent is paid directly from the HB authority to the letting agency.
The care is funded by Social Services.
There are big wrangles locally about whether or not someone needs support at night. You need to write down exactly what you think your daughter needs help and support with.
He had a financial assessment, the LA takes some of his disability benefits to go towards his care costs, roughly about £70 per week. The rest is funded by SSD.
It would REALLY help your daughter’s case if you said that you do not want to care for her any more from xxx. Accidentallly on purpose make this around the date the new facility is going to open. I know it’s wrong to have to do this, but you need to learn how to play this “game”.

Thank you for your very helpful advice. I left a voicemail message with Social Services re: Assessment, I’ll keep you posted on how we get on.