adult with autism/ld moving on

[Madasaflake]

Hello everyone. This is my first post and I hope to get some feedback from parents in my position. My son is 40 and has autism and learning disabilities. He currently lives at home with me and his dad. He has no behavioural difficulties and is calm and happy. He has communication difficulties and doesn’t understand concepts such as living with a peer group. His dad and I are both 67. Our plan was that we would be able to identify a supported living service that he could move into in a slow and measured pace as he has never lived away from home before. We wanted to do this before we are too old and decrepit to manage it! Covid got in the way of us starting the process. Over the past year we have been speaking with our local care management team and to cut a very long story short it is clear that unless we are in crisis and can’t cope there is no chance of any funding for this plan. There are lots of more needy people ahead of us. He has three days a week at present at a therapeutic placement and has been there 18 years and loves it. To be eligible for a PA he would have to give up a day or two here which isn’t an option so we would be happy for him to fund this himself. This doesn’t solve the dilemma. I am now getting quite anxious about what might happen if one of us suddenly isn’t capable of supporting him and the situation becoming an emergency, resulting in him having to be supported in quick time with no time to prepare. Are there any alternatives that I might not have thought of or any groups I could approach for help and advice? The case worker was useless and couldn’t even get her head round that she wouldn’t be able to have a meaningful conversation with him about what he wants out of life! She is arranging a review which is overdue but I don’t hold out much hope. I feel better for just writing this down and sorry it is such a long post but any input would be most welcome. We are in Kent by the way. Thanks for reading.

[Jofisher]

hi you could try mencap helpline or the carers association or I pay a consultant social advocate using my sons money as it’s for him. If you would be interested in me giving you her details do let me know or search consultant independent social workers. She is very knowledgeable with many years of experience. Good luck in whatever you decide to

[Madasaflake in reply to Jofisher]

Thank you. Sound advice and I’ll look into it.

[DrSarahmac]

hi. We have a daughter with LD and complex health issues and have always been anxious for the same reasons you describe. Like you we don’t get any support as we are doing it ourselves and coping. Without a crisis we aren’t a priority so no opportunity to plan ahead with social services. We decided we had to take control of this planning ourselves or risk her being placed somewhere in a crisis situation when we might not be able to advocate for her. We have taken a financial leap and rented a flat for our daughter. She lives there officially and as such gets housing benefit and universal credit which cover the cost and because of her disabilities she gets additional payments. It did involve some up front costs but it was worth the investment to get us in a place where we could manage the transition gradually. We use her benefits to pay for private support care. At the moment this is minimal but we will gradually increase this over the next few years so that there is support in place for when we might be ill or too old. In reality she spends a lot of time with us still but is also now fiercely protective of her own home and space where she stays 3-4 nights a week. We also have health and finance power of attorneys in place and have recently made wills and set up a trust into which her inheritance will pass in due course. Mencap run some very good workshops to help you navigate this. I hope this is helpful. Best wishes. Sarah.

[Clarinet22 in reply to DrSarahmac]

Hi may I ask how you set up the tenancy. Is it is her name or joint names. How did you get housing benefit to pay for it? The rules are so complicated!Thanks

[DrSarahmac in reply to Clarinet22]

Hi. The tenancy is in her name only. She was already on universal credit and works part time at McDonalds. We had no guarantee that they would cover it but I spoke to someone at the council and they explained the rules so we were confident she would be covered. We just had to be prepared to swallow it or fight if they said no. This was about 10 years ago so the rules may have changed so do check. We did have difficulty finding a rental that would accept her without sufficient earnings so had to stand as guarantors but as we were paying that didn't really matter. We are at risk of the landlord ending the tenancy but we would then effectively be in a "crisis" situation but would expect social services to step in and find somewhere but the benefit would be that we would be on hand to act as advocates. It's all a bit of a gamble but waiting for a real crisis is probably a bigger gamble.

[DrSarahmac in reply to DrSarahmac]

btw my daughter is 37 and we are 59 and 61. We have no other children or any close relatives to act for her when we're gone so need to get things in place well ahead of us being unable to support her.

[Clarinet22 in reply to DrSarahmac]

Thank you for sharing. I think unfortunately the rule changes may have made it difficult. Does she have social care support hours?

[DrSarahmac in reply to Clarinet22]

No

[Clarinet22 in reply to DrSarahmac]

Thanks, I think currently the rules are different.

[Madasaflake in reply to DrSarahmac]

Thank you for telling us about your situation. You have very similar concerns as we do. It sounds like a great idea but the costings concern me with our son as he requires 24/7 care and support as he is not able himself. Having said that maybe a joint enterprise with others of similar ‘abilities’ might be a way to go. Certainly something to think about.

[DrSarahmac in reply to Madasaflake]

Ah yes it does sound as if he has more care needs. I do know of a friend who has a daughter with more severe needs than my daughter. The mother recently reached a meltdown point and social services did find a place in shared supported accommodation quite quickly. It’s worked very well so far. We’re in East Sussex. There is a project in Eastbourne which was started by a mother in similar circumstances. They now have their own property for a number of LD adults. I’ll see if I can find info and send the link. Their journey may be of interest to you.

[DrSarahmac in reply to DrSarahmac]

1space.eastsussex.gov.uk/Se...

[Madasaflake in reply to DrSarahmac]

I would appreciate that. Any ideas or suggestions are very welcome. My husband and I have various health issues but manage between us at the moment and we do have an older son but of course he works and has his own young family so we would rather try and do things ourselves rather than lay it at his door. He’s happy to support of course.

[DrSarahmac]

I’m sure he is willing but I understand you don’t want him to have to. I’ve sent the link. Hope you can see it.

[Madasaflake in reply to DrSarahmac]

I have it and will take a look. Many thanks.

[AMPJAP]

There is hope I’m 71. And 4 years ago my son aged 41 who has severe LD C.Palsy moved with 3 others into a privately rented 5 bedroomed house in Stamford The rent is over £2000 per month paid by housing benefits .the care is paid via social services as a direct payment to each lads to pay for 24/7 care . Overnight 1-4 sleep in daytime is shared on a need base 1-1 or1-2 or 1-3 -2-4 .there activities are non stop , they go Day services ( bowling allotment boccia restaurant s music sessions art group. During others days swimming cinema archery football watching at the house they help with the household chores go shopping cooking gardening DIY he has a full life now we we’re getting old .

But we were the lucky ones in the right place when he opportunity to set the house up.The management had know the lads for over many number of years from council run Day services to the setting up of the own day services and lucky for use they decided to open a supported living house and with social services support and parents involvement we did it .its working extremely well for the lads The carers have worked at the day services and now at the house so the continuity’s is on going with any new staff

All the benefits PIP ESA ARE STILL PAID to parents and direct debits are paid for the lads spending

[AMPJAP in reply to AMPJAP]

Just slight update the direct payments from lincs

County council social services are approx £4000 per month for each lad which they all pay a contribution from there benefits about £90

[Madasaflake in reply to AMPJAP]

Wow! That sounds amazing! That’s exactly what we would like for our son but in the current climate with funding cuts etc I can’t see it happening here any time soon. We were told that as he has three days at a day service at a cost of around £120 a week we would have to relinquish one or more days there just to fund a PA. So no more money in the pot for support. So depressing. But I’m so pleased it works so well for your son. I can dream!

[Madasaflake]

Does anyone know which organisation would be the best to approach to get information about house shares or renting with like minded people, housing benefit etc? Might be the way to go. Thanks.

[DorrieReynolds]

Hi. Just a note of caution: I've met several adults who live in supported living with a private landlord, where the property has been sold, they've been unceremoniously separated from their house mates and placed where ever is available, anywhere in the county. I've also met young people who've been placed in supported living with much, much older people, which, when you're around 21 may not be that suitable. It's even more acute at the moment when councils have very little money. Weirdly, I haven't met anyone in supported living who does more domestic 'work' than my son does living in the family home; many don't shop, cook, do laundry etc. In my opinion supported living has to be very, very carefully thought through with a view also to your adult child's human rights, which may be undermined in any form of residential placement. Good luck and best wishes with your situation