Parents, carers and disabled parents
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Bedroom For Matthew

jannie41jannie41 Member Posts: 1
We moved to a more suitable house this year after our previous house could not be extended to enable my son to have a downstairs bedroom. The new house has plenty of room to create a bedroom and already has a downstairs bathroom. The original OT assessment done last year recommended a downstairs room and the new OT in May recommended the same. She has now changed her mind because my son does not use his wheelchair at school (special needs school) and she has seen him on a bouncy castle and playing with his peers at a special needs playscheme. I want my son to join in and have fun and do as much as he can, but when his legs hurt he cant manage the stairs and he goes up on his bum or I carry him,, but at 10 years old he is getting heavy. He does have a wheelchair that we use every weekend and during the week if we are out were he has to walk alot. His school is small and very flat. Ive got an appointment with my MP in a few weeks and have really got to the stage were I am fed up. I want my son downstairs so he is safe, comfortable and has some independence. Any help/advice would be great.

Replies

  • speedyinpainspeedyinpain Member Posts: 52 Listener

    Hi Jannie41

    Your situation is common of many people with disabled children or family members in that social services try to come up with any other options rather than build a purpose built room downstairs. This is because is all down to funding, and they try to back out of their statutory legislation to provide a suitable comfortable home. See enclosed information taken from the online facility detailing acts of parliament.

    Chronically Sick and Disabled Persons Act 1970
    the provision for that person of facilities for, or assistance
    in, travelling to and from his home for the purpose of
    participating in any services provided under arrangements
    made by the authority under the said section 29
    or, with the approval of the authority, in any services
    provided otherwise than as aforesaid which are similar
    to services which could be provided under such arrangements;
    (e) the provision of assistance for that person in arranging
    for the carrying out of any works of adaptation in his
    home or the provision of any additional facilities
    designed to secure his greater safety, comfort or
    convenience.
    www.opsi.gov.uk/acts

    You need to get professionals like your childs consultant, physio etc to support your request by expaining how the down stairs room would benefit your son and family. Its a cop out that the OT is not willing to proceed "as they changed their mind"

    Hope this helps if you need any other help please let me know.

    Andrew
  • sjturnersjturner Member Posts: 1
    hi Jannie41
    Unfortunately, cutting costs is happening everywhere. I have a disabled daughter that uses a wheelchair full-time. Nearly 4 years ago we had an assessment done on our house for adaptations to be carried out i.e downsatirs bedroom. Due to the layout of the house our local housing assosiation didn't think that this was appropiate and as they were re-vamping alot of houses in our area they offered to build us a brand new house with all the requirements that our daughter would need. At the time my daughter was only 4 and we were still able to carry her upstairs but as we knew this wouldn't be the case forever, we bit their hand off. 3 years ago, we moved into our brand new, specially built house and had nothing but problems since. Bedroom and wet room have been built too small to carry all the equipment she needs, everything in the bathroom has had to be arranged and arranged again. Unfortunately we found that most of this was due to cost cutting measures.
    We all know what is going to work for our children. My daughter does everthing that my elder son does, riding a bike, tennis lessons. We all have to fight fight, fight and not be fobbed off with anything.......All I wish was that it wasn't like this. Our local mp has been a great help when it came to our house and thatnkfully our OT has bent over backwards for our daughter. My sister in law is an encyclopedia of law so this has reallly helped us and to be honest when it has come to a few situations we have consulted a solicitor for advice.

    I wish you all the luck with your problem and hope that you shall get it resolved as smoothly as possible.....
  • carlagreencarlagreen Member Posts: 1
    Hi Jannie41 Your situation is common of many people with disabled children or family members in that social services try to come up with any other options rather than build a purpose built room downstairs. This is because is all down to funding, and they try to back out of their statutory legislation to provide a suitable comfortable home. See enclosed information taken from the online facility detailing acts of parliament. Chronically Sick and Disabled Persons Act 1970 the provision for that person of facilities for, or assistance in, travelling to and from his home for the purpose of participating in any services provided under arrangements made by the authority under the said section 29 or, with the approval of the authority, in any services provided otherwise than as aforesaid which are similar to services which could be provided under such arrangements; (e) the provision of assistance for that person in arranging for the carrying out
  • sardybearsardybear Member Posts: 1
    I know of this all too well Jannie. We had to fight tooth and nail to get our house adapted for our son, they wanted to install a through the floor lift in a tiny house that would not be suitable for that purpose. They finally built a bedroom and shower room downstairs and it's far too small. He has gone up two wheelchair sizes since and we can't even turn his chair round in either his bedroom or the bathroom. We have to back into every crevice just to get him showered and into bed, knocking and scraping everything in the way!

    Unfortunately they refused to adapt the front of our house. It has a small step and the hallway is too narrow. My husband had to build a temporary ramp and there is nothing we can do to the hall as it's far too costly for us to afford and the downstairs accommodation is just not suitable enough as our child grows anyway. He just had a new chair and now we struggle to get him through the hall. I have to lift and jiggle his chair around, banging his toes and knees and ankles (unwillingly) in the process. Once he goes up a chair again (he's 12 years old) he will NOT fit in our house at all. We have to move house asap as this house is unsuitable now, we are so frustrated that we went through all that to get what we thought we needed for it now to be completely unsuitable. We will have to pay to have another house adapted or buy one that has already been done (virtually impossible!) Not only have our local council let us down completely they have wasted their own money!

    I truly hope the process goes smoother and happier for you and your family. I wish you all the best,
    Sarah
  • michaella61michaella61 Member Posts: 2
    I am a foster carer, my foster child came to me as an emergency 3 years ago, he was meant to stay with me only for a few days. He has Spastic Diplegia Cerebral Palsy. My house is tiny and totally unsuitable for him, according to the council's report, the house present him significant danger, with possible electrocution, due to him holding on to the light switches with wet hands, after he has washed them. It does not matter how many time I tell him not to use the light switch for support, but he still does. He also does not seen aware of danger. He uses the kitchen counter for support to get to the toilet. The cooker is a built in oven, he has only an inch gap to hold on to, I am terrified that he may get his fingers burnt, if I am not in the house, and he wanted to use the toilet. I cannot go anywhere for long, I do have a walkie talkie for him to call me if he needs to get to the toilet, especially when the cooker is hot. My oven and tiny kitchen counter is on the verge of collapsing, I cannot do anything about it as I am waiting to find out if they are going to pay for the full cost or not. I have put my house on the market, but nothing is happening. The council has said they have only so much money to do the adaptation, that they do not have enough, they said they would usually expect the child's parents to fund the difference, but because I am not the parent of the child, it would then be the social services who would have to pay, but they said that they do not thinking that will ever happen. I am very very worried, that the child is in danger and I too. Regardless of the detailed report from the council the social services refuse to budge. He is also going to have major surgery in both his legs this month, I have had to move his bedroom in the sitting room, I cannot move everything out of it as I do not have anywhere to put the big 3 seater chesterfield, therefore that leaves me a space of 5ft x 5ft to work with, I will have to use a hoist, commode plus wash him in that room, I am very concerned that I might cause him an accident when the going gets tough and moving him around on my own. I am in despair, he is ten years old. I did not know that I was going to struggle so much to get social services to do anything, as they are supposed to protect him. I am only the carer. I have given them all this time to sort the adaptation out, now with this operation coming up everything seem so desperate and urgent. Has anyone come cross such a situation before, as a foster carer or carer? Any advice would be of great help. Thank you for reading.

    Kind regards

    Michaella
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