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I Have MS And I Am Too Expensive

I am facing a new problem.

Housing.

This house is getting harder for me to live in. We are back on the list to be moved to home more suitable for my own needs.

Yes I am already in a LHA home, but this one is presenting new obstacles for me, but please bare in mind, these are not free and we pay our rent every month.

Moving on.

I am back on the list, we have fought our way to gold plus banding, with my medical needs. Not an easy process I can assure you.

I noticed on my recent letter that I will only be allowed to bid on flats and bungalows. Something which tend to be rarer than flying pigs these days.

I called the council with my concerns.

See this house has one bathroom downstairs, so it makes going to the toilet in the night a real “mission impossible” for me. I struggle with stairs. Which leads me to my next point. Our staircase is too narrow for a stairlift, especially when you have to factor in, the normal use of the stairs for the rest of the family.

With the phone call I was met with the worst possible news ever.

That because of my Multiple Sclerosis, they would not allow me to have a home that needed adapting, because “they cannot afford to adapt a home for people with MS anymore”

I mentioned that I would try and gain the funding for this myself. With the help of my OT. They said “we still wouldn’t put you here because we don’t want our new homes changed”

Today saw another phone call.

A different lady said once again. We are not adapting our new homes. We have adapted far too many in the past.

The lady on the previous call also said to me “you have to face facts, you will get worse, and we won’t pay for that”

Now, after I have cried all the tears, which trust me these last few days I have.

Not only am I a burden on my whole family. But now I am a burden on the people who are meant to be there to help people like me. I expect this from a private rent, but never from multiple LHAs.

Please let me reiterate. These homes are not free. We pay our rent.

I am now faced with discrimination due to having a disease I DIDN’T ASK FOR.

I don’t want to be here. I don’t want to be living in my body and forcing my family to live with this disease.

But its happened. And I am living it everyday.

I live quietly through the pain, the appointments, the needles, the questions, the everything.

And now I am being told that ‘people like me’ cannot live in a normal home. because after all, I still have a normal family. A family who just want to live like everyone else.

But we can’t have a home with a toilet both upstairs and down because they won’t adapt homes for people like me anymore.

People like me?

I need help. Even more so now than ever.

So please share this post, because I am looking for answers. I want to know who told the LHA it was okay to say no to ‘people like me’ because they don’t want to change their homes anymore. They suddenly don’t have to be there the help ‘people like me’ when that was their whole intention in the first place.

To be a lifeline for ‘people like me’

But not anymore.

Because I have MS and I am too expensive.

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21 comments

  1. Nicki Cawood - July 29, 2014 11:09 am

    I try not to swear on other people’s blogs so will simply say that is blinking awful. I really hope you get the help and support you need.

    Reply
  2. Judith Allen - July 29, 2014 2:08 pm

    What a horrible position to find yourself in. I know I am so lucky that my dad is able to help, without it I would have to rely on the supposed safety net too. Keep as strong as you can. Have shared on twitter and fb.

    @JudeVFR400

    Reply
  3. Liska @NewMumOnline - July 29, 2014 4:26 pm

    Hi hon, are you not protected by the DDA? I am sure what they are saying to you is in complete disregard of the DDA no? I am astounded. You need to fight this. I know you will. Will share. L x

    Reply
  4. Shelley - July 29, 2014 4:35 pm

    I am so sorry you are being treated this way. I wish I was commenting with some help or advice but I don’t have any I’m afraid. I simply want to stand with you and say how disgusting this is. ‘people like you’! How dare they!
    Sending strength and love X

    Reply
  5. suzanne3childrenandit - July 30, 2014 3:58 pm

    I’m so sorry that you’re forced to go through this and that even worse, you are being treated like a scrounger. This should NOT be happening. I hope that this gets shared and the right people see it. Lots of love to you x

    Reply
  6. kat pearce - July 30, 2014 4:11 pm

    Oh my word! I honestly can’t believe people in such a position are able to stay employed for any amount of time. It’s utterly disgusting! I really hope you find a solution soon lovely. It must be awful for you and your family. Much love xx

    Reply
  7. Andrea - July 30, 2014 4:11 pm

    Wow, I am totally shocked and disgusted by this. It seems that like the whole benefits system the LHA are only there for the people who can’t be bothered to work, not as a support system for people who need it through no fault of your own. My Aunty had MS, and it’s an awful disease – I am so sorry for you :(

    Reply
  8. Petit Mom - July 30, 2014 4:19 pm

    That is not on, not on AT ALL! I am outraged and disgusted how they are treating you and I can only guess that they are treating others with similar illnesses. If I could hug you right now I would, but for now I’ll do what I can to promote this and bring awareness and understanding that this is not how you treat people whether they have an illness, disability or not.

    Reply
  9. Lucas James - July 30, 2014 4:24 pm

    Shocking – I have no words of wisdom I’m afraid, but just wanted to let you know that you’re completely correct – this is unacceptable. We are lucky enough to live in a LHA bungalow (and pay rent! We face these assumptions too!) which suits my 12 yo son with SLD, complex health needs and part time wheelchair / walking frame user. Unfortunately it means my 10yo daughter shares a room with her 11yo brother (as Smiler needs his own room), and the property cannot be extended, either out or up. LA response? Shouldn’t have had a third child then should you.
    Hope they come to their senses soon and adapt an appropriate family friendly home for you.
    Take care
    Lucas

    Reply
  10. Susand Crochet AddictUK - July 30, 2014 4:52 pm

    Wouldn’t it come under the disability act? If I was you I would find a no win no fee solicitors. I think you would have a case under European human rights – the right to a family life. The only reason lots of us don’t get what we have a right to is because we don’t kick up a stink.
    My gran was in the benefits office. She had a letter saying she was entitled to a benefit and wasn’t receiving it. The lady at the office said the letter was wrong and she couldn’t have it.
    When she was leaving an elderly asian looking man came up to her “excuse me mam you know what your problem is – you just accept what they say. If you complain you’ll soon find you’ll receive it. I bet I receive a lot more benefits because I fight for what I’m due not take no as the first answer.”
    You have a disability and laws project you. Don’t let them walk all over you! You derseve better!.
    The solicitor that is looking at the bedroom tax might be a good place to start. It would be fantastic publicity for them! How the government is discriminating against the disabled and their families.

    Reply
  11. Anthony Turtle - July 30, 2014 5:27 pm

    Like many others in the renting market, I too am discriminated against by landlords. People with disabilities are on benefits as we tend to be unable to have the energy, pain relief to last in employment.

    This means that we fall into the private rental trap of “No DSS/Benefits”. LHAs cannot afford to adapt housing for us. So we are given another wall to climb over.

    “Normal” people don’t realise the hassle we have!

    Wishing you all the best, Chelsea!

    Reply
  12. Sal - July 30, 2014 7:28 pm

    Do you have a room you can live in downstairs? Then you have the use of a downstairs bedroom/bathroom combo, and it will give your children more room upstairs?

    Not ideal, but if you were in your own house, then you would have to do something similar. Maybe this is an option.

    Reply
    • Mummy - July 31, 2014 12:01 pm

      its something we have looked at, but we have very limited space. And we would not have the space to have a sitting area for family let alone putting a bed in.

      Reply
  13. Adele - July 30, 2014 9:49 pm

    And this is one reason we need to fight against the assisted suicide bill! If that comes into place situations like this will just get worse. We will be expected to end our lives as it will be cheaper! It’s really scary. People say it won’t Happen, but if you really feel like a burden on society and you have people pressuring you to end your life many people will!

    Reply
  14. Chris McNamara - July 31, 2014 7:35 am

    Re your housing problem, you should get in touch with Habinteg HA. They aren’t everywhere but you never know. All their stock is wheelchair accessible, and if they can help I’m sure they will. It’s just possible that they can help. Good luck!

    Reply
  15. Stephs Two Girls - July 31, 2014 11:34 am

    This sounds so unfair. It’s not your fault! They should be doing everything they can to help you :( It’s a battle for you at a time you could least do with it. So sorry to hear this x

    Reply
  16. Fran - July 31, 2014 7:07 pm

    I’ve bdeen ‘lucky’ in some ways, I hbave a LHA bungalow for the past 6 years and social services and the HA paid for my bathroom to be adapted, yet we have to pay bedroom tax. We were offered this property because there were no other available properties suitable for a disabled person. I have since enquired about smaller properties, most often there are none and when trying to source and exchange any that do appear for exchange, they go very very quickly as you know! We have been penalised through no fault of our own, we did not deliberately choose an extra bedroom and are made to suffer financially purely because I am disabled and have a chronic incurable neurological disease, we were offered what was available. We applied for discretionary payments, but our application was apparently ‘lost’ by the local authority. I hope they sort this out for you. Are you going to the press and/or MP with this?

    Reply
  17. Alison - August 2, 2014 3:20 pm

    They’re a bunch of idiots! Enabling you to live independently in appropriate housing is waaay less expensive than a care home would be – and yes, if / when you get worse they *will* have to pay, because that is the law. Have you had a needs assessment? There’s some good advice on the NHS website: http://www.nhs.uk/Livewell/Disability/Pages/help-for-disabled-parents.aspx
    Good luck – stay feisty!

    Reply
  18. Kahn Johnson - August 4, 2014 10:54 am

    Hi Chelsea,
    I wonder if you’d like to drop me a line – this sounds like something we should be highlighting in New Pathways magazine.
    If I can help in any way by raising further publicity about this, I’d be happy to do so.
    Let me know.
    Cheers
    Kahn

    Reply
  19. Amanda - August 20, 2014 9:55 am

    I am so far behind on blog posts, so please excuse my delay in commenting on this!

    Your post made me cry… I just cannot believe that you cannot get the help you need. Well, I can, because I know how hard it is to get help, but it just completely and utterly breaks my heart that you are facing this. Nothing I can say other than I am thinking of you, and shall share this!

    Reply
  20. Katie - August 26, 2014 4:29 pm

    I CANNOT BELIEVE THEY SAID THAT. “You’ll get worse and we won’t pay for that”. That’s why we pay taxes. I used to be proud to be in a country that always looked after it’s sick and needy. People who are down on their luck or taken a wrong turning. The elderly who have contributed so much to their country. Those that have become ill – through no fault of their own. I am ashamed. Communities rely on these groups governing them – deciding how to spend the money we all work so hard for. The whole ethos of our country has disappeared to line the pockets of the select few, and meet the ‘targets’ of those select few.

    I relate to the first paragraph, where you feel you have to justify things you get because if your illness. I have MS, and I feel the constant need to justify and explain why I receive extra payments. Not just to the government but sometimes to my friends as well. What is the LHA making your life so much harder than it is already? Perhaps some naming and shaming needs to happen…

    Reply

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