Hi guys so after a long time of been left with no help I’ve heard That a lot of people are stuck in a situation who have a learning disability or autism And are in supported housing But not getting the help they need for example carers are not helping them to do the things they cant do on there own like brushing their teeth So after a long time of been neglected and abused by people that are meant to help us and all the damage they done to me and lots of other people we are going down the route of living in my own house but paying out of my personal budget for OTs you OTs that specialise in different things so you can get a mental health OT a OT that has experience in learning disability. From the sounds of it is better if a person can be supported to live in there own home because i have lived in lots of supported housing and I haven’t had good experiences you can’t be sure that they are getting the care they need. In my old supported housing a staff member smoked weed in my neighbours room and got fired. Staff would go to sleep when they are meant to be helping us. Things like that. I think the way forward for some of us with a disability is to go private and get OTs they can help with lots of things they can help with if you get angry and break things this could be helpful for lots of people so police don’t get involved because lots of police are unkind and criminalise people with a disability it’s best to stay away from them if you can they sometimes hurt you they have hurt me before they have pulled my pants down. So I’m trying to be helpful so also if someone is going to have support at home in my experience it’s best if someone can help the person that’s needs help to choose there own support worker and not just go with support workers they are given a lot of the time people are not that experienced in helping people with disabilities I think it’s to easy to get to be a support worker at the moment I think it’s needs to be changed so all carers and support workers have to have a certain level of training before they can do the job. Also don’t rely on social workers to find you new support workers I told my social workers that my old support workers were treating me badly and they didn’t care they have just left me with no help for a long time while they go on lots of holidays. I would say when your choosing your support staff make sure you interview them and see what there experience is. If you decide to get care at home for someone in your family and you want to be sure that they are been cared for properly you can put cameras in your house and let your staff no that you will be recording and that will help you to no they are getting good care and there no been treated badly. I wish I knew to do that before. So I hope my post is helpful to you guys this is the route I’m going down and i lived in lots of supported housing where I haven’t been helped and the staff have not been experienced and have treated me badly at times and now I live in my own place It’s good because your not stuck with the same people all the time if there not good. Even though I’m really not ok at the moment because I’m been left to it and I get abused to much I’m a bit happier because I’m not stuck in a place I have no one treating me badly where police is coming all the time with loud music and people smoking weed. If anyone wants to ask me anything I would be happy to try and help you if I can I hope you have a lovely day everyone ❤️
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so my benefits have been reduced because of silly people to the lower rate of pip I should be on the high rate of pip so the way I am paying for private OTs is through my personal budget what is money that is for me to pay for my care it’s called direct payments I think so just trying to explain because I no a lot of people won’t have lots of money to pay for things like private OTs I don’t have lots of money I want to make it clear that it should be accessible for most people getting private OTs if they have a personal budget that can pay for it if you want to ask me any questions about this if I no I will tell you
Sorry for the long post
Thankyou for your post. I hope this new way of living works out for you and you will be very happy. You are so right about supported living, a lot of places unfortunately lack the right staff to care for these vulnerable people and are basically seen as babysitters as they are generally unskilled. Caring should be a vocation like nursing with proper training and pay but sadly this will never happen. It’s deemed too expensive and people with LD are seen as not as worthy as there unable to give enough back to society in the eyes of the government. It’s all very political. Some vulnerable people do have really good care but not the majority it’s a bit of a lottery. Until the Mental Capacity Act is changed, and people are being assessed as having capacity when it’s obvious they really don’t have, nothing will change.
All the best to you and take care.x😊
Hi Ilove cows ,It’s lovely to hear from you and everything you have written is very true and like a breath of fresh air . Social workers are also not very understanding the very people who are supposed to support you. Totally agree with everything you say . I have two young adult sons I care for and I will increase the support for them as I do struggle . You mentioning an OT is that occupational therapist? Deep inside I know as you state that nobody out there is cheap and experienced to deal with autistic and disability young people . Any body can be a carer as there is such a big shortage . I am glad you have found piece in your own place .Keep in touch with your close ones and friends as you are on your own .
Keep in touch , best regards
Rupertthebear
Im so sorry you have been treated so badly its a disgrace.My son will be going into supported care at some time so you have prepared me look to the best people and i will take on your advice I hope your life will get much better for you God bless
if you can I don’t no about if your son can do this on his own like if he had problems with carers and I don’t want to ask you personal things I have a disability to so I don’t no what’s ok I really struggle to with things like computers phones but I got told by someone I should get CCTV if your son finds things hard like to no if people are treating him badly what’s ok then you could get CCTV to see if he is getting good care I don’t no what’s allowed but I have had lots of experience with social workers
I been in supported housing my own home in custody and in hospital and I would say in this world with the way things are there needs to be some way of making sure your son is getting good care ❤️
Ilovecows thank you so much for your open honest and insightful comments on the difficulties faced in supported living and on the potential benefits and advantages of living in your own home where in your own environment and space you can have more control over your daily life your routines your preferences and over choice of who supports you and how. As you rightly point out, although this option gives you more power and a greater voice over your life it is not without it's downsides, namely cost and finding the right carer/s that are best fit for you and your needs/wishes. There is hopefully more accountability for care staff and more scrutiny which is important for safeguarding. I agree with Rupertthebear who has highlighted the need to have family/friends supporting you in your place who can help oversee and promote good working relationships with you and your carers. Your warmth and generous spirit comes across in abundance in all your messages on this forum. You are inspirational and a very valued and valuable member of this group. Keep us all updated on your new path and continue to reach out to those you trust to give help as you so generously give us help and advice. Take good care ⭐
I am very sorry that you have been put through this awefjl.life so far and damn right abuse.. I would seek support from.chsrities that support people with learning disabilities and also write to your local MP if you have any other issue. Maybe there are agencies or charities that can be your advocate too. You can report people to the care Quality Commission (CQC) if it's care you are receiving but be advised by MP or go to CSB for support too. Good luck it sounds like you made the best choose to get out. I am a self employed Support Working in West London and think this is disgusting. More people are turning to self employed Support Workers because you can hire and fire them if their standard is not up to what you expect. I think you will find that they are more about your needs and the institutional needs of suppted housing or care homes. Many are great but equally many are not. I'm 56 and have been in care and support for 39 years so I do have a lot of experience and knowledge and as I saw best thing you could have done
Hi, I'm mum and carer to my adult forever child and have been trying for over 2 years to get some day care for my child, or access to Direct Payments. It awful what you've been through and the position you find yourself in. Friends and family tend to think that there are sufficient services provided by the local council for people who need it, but unfortunately these provisions have been eroded over the last decade or so. I wish you so much luck in your new venture and wonder if you would be able to share a home with a friend or 2 and then you could club together and employ an OT. Of course this may not be suitable for you, but if it is, could be worth some consideration. I would also recommend setting up a 'Income and Expenses' list or spreadsheet, just so that you know how far your funds can stretch, as well as how much Direct Payments you will have to ask for/ be able to receive (sorry, I have not much idea how the system works as to how much you can get or how you get it back). An Income and Expenses sheet will also help you stay within a weekly/monthly budget and will be very helpful if you choose to share a home with others in your situation. Good luck 
Hi guys thanks for all your lovely messages it might take me a while to reply because it’s a lot to take in I will reply as soon as I can x
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