quality of accommodation

[Beansprout1]

Our daughter is 22 years old with severe learning difficulties and autism. We are beginning to explore assisted living and viewed a property yesterday - this is the first property we have looked at and it was pretty appalling, the walls were dirty with a layer of grime, her bedroom had pipe work from what must have been a toilet left against a wall. A smoke alarm was left beeping as if the battery needed changing.

Is all accommodation this poor and is it thought to be acceptable that our young people should live like this. The care company had a good cqc but how could they care and be happy to provide property like this.

[Jofisher]

speak to cqc about what you witnessed sadly they will also put as many bedrooms in a building as well as more bedrooms more money. It’s disgusting what’s going on out there to our loved ones. Make sure you are deputies for your loved one so you have some say in what’s going on because otherwise it’s like they get sucked up in the system and you start to loose them. Check out my safe homes for people with severe L.D.

[SpeedyH]

No, you are absolutely correct. This is not acceptable and should be a massive red warning flag to you that they are not a good provider. It doesn't matter how good and caring staff are, because they have to work within the ethos and framework of the company. If the company think this is OK for your daughter, you will just have constant battles with them over poor service. If the property is unclean and miserable your daughter will be unhappy and it won't work.

If you are not in an urgent situation for her to move out, take your time and look at available options. LAs tend to have properties with vacancies and bung young people in them with little person centred planning. You absolutely need to make sure your daughter would be happy with the accommodation, and with whom she shares it. Just like any person moving home would. Mencap, the downs syndrome association and the challenging behaviour foundation all have resources on independent living and there are probably more. You don't need the accommodation and care to be provided by the same service. You could rent somewhere and have carers come in for example. Find out where other young people live and do on.

And I agree with Jo above. Report the service to cqc.

[jollyfarmer in reply to SpeedyH]

Nothing surprising here .... very sadly. Bums on beds is the mantra of the LA's. We have scraped together funds to buy a property for our loved one. I know that's not an option for many, but renting might be... The bigest challenge is finding the care provision. It's a long & exhausting journey, but if yoy suceed the benefits of knowing that your oved one is happy and living as they are entitled to - it's worthwhile

[BarbaraGood in reply to jollyfarmer]

hi, I hope you don’t mind me asking but can you tell me a bit more about your situation for your loved one? How does a private property work? Do you employ carers? Does it have to be vetted by CQC etc? I am looking at the future for my son and absolutely hating the residential options available right now. Thank you in advance.

[BenjiB]

my son moved into a residential care home in September. We spent over a year looking, visiting and rejecting placements. We worked with the placement team and they were amazing. We eventually found a beautiful place not too far from us. He has a huge en-suite room and this year it will be joined with the room opposite his to make a “unit” so he’ll have a lounge and kitchenette. He loves it there. It’s very expensive, around £5k per week because he needs 1:1 in the house and 2:1 out of the house. There was a bit of wrangling over funding. There are some lovely places and some awful ones. It’s just a long slog finding the right one.

We said early on supported living wasn’t an option snd vetoed all supported living options we were shown. You have to stick to your guns and be really firm with LA’s.

[FoodBankKnitter in reply to BenjiB]

I'm worried now, how can anyone afford £5k a week?

[Bergersil400]

Totally unacceptable, and extremely unsafe as well as unhygienic.

We went for a new build, but also looked at the company's similar property which was 4 years old to see how it compared. We were satisfied that as the standard was good for the older property the new build would have a good chance of being well maintained.

The outside is kept tidy as we have to pay a service charge, and inside has to be kept clean and tidy which is inspected at each hand over. It receives a deep clean we think once weekly more if Covid is in the building. She has been living there a year at the end of the month.

You are not obliged to accept the first property offered, just as you wouldn't buy or rent the first property you looked at for yourself.

[Bluedandy]

You may want to look at HOLD schemes (home ownership for people with long-term disabilities). Perhaps involving shared ownership with a housing association. This separates accommodation from the support provider. Advantages and drawbacks. Good relationship with support provider always important.

[redsails]

Hi Beansprout. Not all supported living environments are as you describe which sounds truly awful and shame on the care provider for not pursuing proper maintenance. My son is also severely learning and physically disabled and has autism and has lived in his supported living environment for almost 20 years. He lives in a single person flat which is one of 10 under one roof and there are communal area’s and gardens. Everyone has a small staff team who provide support according to individual need. He pays a maintenance charge along with his rent to a local housing association which covers the cost of communal decorating, building and garden maintenance. He is responsible for furnishing and decorating his own flat, he got a grant for basic household items prior to moving in and has subsequently furnished and decorated with his own money. We have a long established relatives group who meet and visit our relatives regularly and meet with care management to ensure the housing association remain proactive with their maintenance responsibilities. I hope you find somewhere more suitable for your daughter, it’s not an easy journey you’re embarking on but do ask questions, who pays for what, ask how much maintenance charge each tenant has to pay and whether or not the care provider has a good relationship with the housing association. Good luck.

[Beansprout1 in reply to redsails]

Thank you to everyone who has replied to me and shared their experiences. I have been in touch with our social worker and informed her of our thoughts on this accommodation and why it was not suitable.

I feel really angry that they feel that this is acceptable and that there was a lady already living there who perhaps doesn’t have family who are able or willing to complain.

It feels like one battle after another for our young people and I live in fear of what might happen when we are no longer around.