Help. Disabled son and struggled with finding home for him.

Mil_30

Hi!

I really hope someone could help in some way or point us to what to do next as we are absolutely exhausted.

My partner (we don't live together) she's currently living in 2bed home with her 3 sons (disabled 24 yo, 15yo and 11yo). Due to lack of space and home being unsuitable for her disabled son K. He does need her care and help but badly need his own space as he don't even have his much needed hospital bed anymore due to lack of space and is stuck in his bed or sofa most of time due to stairs in home.

When spoke with council, we been told she can wait very long time for 4 bed home on one level with no stairs and wet floor shower (unfortunately we dont know how long K got left to live due to his conditions as well as his mobility is severely worsen in past year). She applied for edinex number for her son couple years ago. Which she never received any letter or call other then being told she could see if can try to swap home which wasn't much of option as there's not any homes available suitable for his needs and 4 bedroom on one level.

After two years we went to our MP try to see if he can help, she found out that her son does have a edinex number and never was informed. In May he was awarded gold medical priority. Since then we looked at homes every week and applied only for those that are suitable (only 4 were since May) most of them unfortunately were either sheltered or for over 60. I don't think it's right to bid on homes that can't meet K basic needs.

He does have complex needs, like there must be no steps, as his walking is worse so he more often use wheelchair in home, as well as only freedom outside he got is his mobility scooter. He need to be close by so we are still able to care for him, (dialy hot meal cooking, medication, shopping, a lot of doctors appointments, helping in shower etc). He don't allow other people to help or touch him thats why it's us taking care of him.

His mental health as well as my partners are really bad at the moment. They are all trapped on top of each other. My partner sleeps in bed with her 11 year old, and 16 year old sleeps in room with disabled 24 year old. So geniuly nobody have any personal space. Nobody is listening or being on our side. Feels like loosing battle.

Not long ago we had email from HART team that K need to bid or more homes or his golden medical priority will be taken away from him. We explained his conditions, his needs, the whole situation just to be told that they think 1st floor with lift is suitable for him and to start bidding on those as well. Problem is that those homes have no back space or safe space for his mobility scooter which is his only way of any freedom or normality (other then driven my his mom in car). We saved every penny for his scooter so he can have just a little normal life thats why it is very important and he needs it. As he don't have any friends, he only got his brothers and us. His scooter is big as he is a tall and big boy. That's exactly why most of homes that are 1bed and suitable for wheelchair user are the ones either sheltered or for over 60. If home would be not close by (up to 10min drive) then he would need fully sheltered home with carer that due to his disabilities he woudnt accept others help.

I don't even know what to do next, I dont know who to speak to, who to ask for help, because everywhere we went we felt not understood. Only people that understand us were our gp and occupational health team that met K and seen the needs he have and way they live right now.

Can please anyone help and advise what to do or how to deal with this situation.

We know we don't expect miracle and find home soon, but for them to take away his gold priority because he don't bid enough because there's no properties meeting his needs is absolutely horrendous and heartbreaking.

Thank you for any advice or comment!

Rachel_Scope

Hi @Mil_30. I'm so sorry to hear about your situation. It sounds so difficult and I can understand your frustration as you just want your children to be cared for and comfortable. The only advice I could give is to maybe contact the Ombudsman for public services in Scotland. They could maybe get things moving and try to retain the gold medical priority as your children's needs are so complex and you need a specific type of property.

Mil_30

Thank you for your advice. We getting right now all the professionals input on paper again so we can at least again prove that those are our son needs not wants. Will look into ombudsman as well in meantime. Really appreciate your reply x

Rachel_Scope

Not a problem @Mil_30. That's great that you're getting all the evidence again. I really hope you get it all sorted. Will you keep us updated?

Mil_30

Ofcorse, hopefully soon will have some information of what's happening next. Thank you x