October 28, 2010 at 11:44 am #73298Housing Advice!
My name is Paula, I’m 34 years old and have Limb Girdle Muscular Dystrophy. I currently work full-time as a teacher and am keen to continue working for as long as possible, with this in mind I am now going through the assessment process for an electric wheelchair, this means I will be able to work for a bit longer.
My question is around housing. I currently own my own home, whilst I don’t need any adaptions it’s not ideal. I know eventually I am going to have to give up work and claim some form of Housing Benefit, which I will not be able to claim if I own my own property. Ideally, I would like to sell my home and go into rented accommodation so that in the fututre when I do need to claim benefit I will be able to, however, it’s been a minefield!
I’ve heard horror stories of people moving into rented places and the Landlord decides to sell, hence they have to move out with 3 months notice etc. I need to move somewhere where I have stability and can live long-term. I have tried to look into Housing Association etc but the information out there is huge and confusing! Could you give me some advice on how I apply for Housing Association, do you feel this is a suitable option, are there any other options out there for me?
I would really appreciate any help or advice you can give me as I need to make plans to move and my head feels like it’s going to explode with all the research I have tried to do!
Thank you!ArmadilloParticipantPosts: 10Joined: 28/10/2010October 28, 2010 at 3:03 pm #77213Re: Housing Advice!
Housing needs can be an absolute minefield, we know what we need now but some organisation do not seem to understand that we also want to, in fact need to, take into strong consideration the long-term effects of our conditions. I do not have LGMD, I have FSH, I could give you another horror story of how I went about getting independently housed eighteen years ago but it would serve no useful purpose.
You are correct with regards the private housing sector, the majority are done on short-term assured tenancy agreements, a maximum of six months, get a good one and each six months it is a paper work formality to get it renewed. However, there are instances where the Landlord decides not to renew the agreement, or decide to terminate the agreement before it expires, giving the tenant the required notice. If you are someone who needs a number of adaptions to a property the likelihood is that the Landlord will not be one who pulls the rug out, but there are no solid guarantees.
Housing Associations may be the best option. I do not know what associations are available in your geographical location but where there are waiting lists and assessments required try and get on the list as soon as possible in order to have accommodation available at the time when you need it the most.
Most associations have a good working relationship with social services and occupational therapists. I appreciate that there may be a great deal of paperwork to understand, in which case, an organisation such as CAB or DIAL may be able to assist you. They are likely to have knowledge and understanding of your local organisations. Ask loads of questions, get friendly with the association people so that they get a good understanding of what your current and future needs will be.
Hopefully all will come together at the right time.
I don’t know if any of our board members are housed via these associations or local council housing.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015October 28, 2010 at 3:13 pm #77214Re: Housing Advice!
I am a housing association tenant and I waited about two years for somewhere to come available that was suitable. I was visited by someone from the district council and also made my parish council aware of my housing needs as I knew there were plans for more HA builds within my area. I was assessed and was awarded a number of points according to needs then put on the list in a number villages/towns within a certain radius of where I was living at the time.
I just came across this link, might be worth a look
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015October 29, 2010 at 8:22 am #77215Re: Housing Advice!
I too have LGMD, Type 2A. I was living with my parents waiting for housing for a long time with the local council. I decided to chase them one day after two years on their list only to be told they had no note of my disability & specific needs despite me stating quite clearly my diagnosis & giving them contact details of my GP & specialist. Once this was pointed out to them I was offered a bungalow within two months by my local housing trust who now take care of social housing in my area. Once I moved in I contacted a community occupational therapist who came to see me at home & to address any needs or problems I had. She has had extra storage fitted for me, grab rails where I needed them, supplied a rising reclining armchair, a perching stool, an elevated seat for my toilet, raised my sink & draining board & because my condition has progressed she has put me in touch with the wheelchair service who are going to supply me with a power chair too. The power chair it self has created more problems because it doesn’t fit around my home I’m currently in. So, now the lady from the wheelchair service together with the community OT are doing a report to submit to the housing trust again insisting I am moved to a bigger bungalow.
The housing trust themselves haven’t been much help but, this lady I met, Hayley, who is my community OT is absolutely invaluable & I suggest you try to make contact with somebody similar local to you to throw some weight behind any of your needs, especially if you’re going to approach your local housing authority. I had to find out about Hayley for myself by making some phone calls, nobody told me who could help me or to what extent. I think it’s a shame there isn’t somebody attached to the housing trust who wouldn’t step forward straight away to address their tenants needs or put them in touch with the right person.
If I can offer any advice or help, please ask.
There is nothing noble in being superior to your fellow man; true nobility is being superior to your former selfI, Disabled BlokeParticipantPosts: 540Joined: 29/10/2010October 29, 2010 at 12:54 pm #77216Re: Housing Advice!
I just wanted to say thank you so much for your posts and advice. I finally feel like I am a little clearer on what I need to do!
Sounds like it’s a lengthy process so I better get cracking.
Wish me luck!ArmadilloParticipantPosts: 10Joined: 28/10/2010January 30, 2011 at 8:29 pm #77219Re: Housing Advice!
Please bare in mind Armadillo, that you will not be able to claim any housing benefit if you have a sizeable amount of capital in the bank from the sale of your home.
I can’t speak with much authority regarding housing benefit limits but i can tell you about ESA which i claim. I can have £6000 in the bank but they would take £1 away for every £250 i have over that figure and up to £16000, whereafter i would receive nothing.
RanaldranaldParticipantPosts: 747Joined: 05/09/2010March 19, 2011 at 10:08 am #77220Re: Housing Advice!
Hi, I am in a sticky situation. My mobility is very poor and our current home is unsuitable. I am not allowed stairlifts as I have 2 children under the age of 7. I am not allowed a through lift as they say there is not enough room. I am not allowed to convert the garage into a bedroom, so that I have ease of use to the bathroom.
There are no suitable properties available for my needs, I have been on the Adapt waiting list and normal housing list for 2 years and have heard nothing !!! I am at my wits end, I am confined to one room and I feel this is making my mobility even worse as I am not able to move about much.
I feel that I have been left to it and that no-one seems to understand the urgency of this situation.
Is there anything that you can suggest, that I can do to help us get a home quicker??? AllyAllyCat1979ParticipantPosts: 2Joined: 19/03/2011March 19, 2011 at 10:11 am #77221Re: Housing Advice!
I know someone who has been in this situation – it is so frustrating. What he did was to get his MP involved. I will have a dig about and see what other action you could take.
A learning experience is one of those things that say, “You know that thing you just did? Don’t do that.” - Douglas Adamssar78ModeratorPosts: 2,246Joined: 05/03/2015March 19, 2011 at 12:34 pm #77222Re: Housing Advice!
Gosh Allycat, how confining for you. I feel for you, sadly it sounds like a fairly familiar story and in most cases I think it was persistent calling, chasing and pleading that got the matter moved in anyway. Case of he who shouts loudest …..
What sort of relationship do you have with your GP/ Consultant/ Physio/ Occ Health people, sometimes a strongly worded reminder from some or all of them can help ‘bump’ thing along. Also, review your DLA, it may not increase your payments but will add evidence to your case and high light the need.
Sorry, wish we had a better method for getting you the right help.
I'm always the animal, my body's the cage
I blog about nothingness www.amgroves.comAMParticipantPosts: 4,751Joined: 05/03/2015March 19, 2011 at 12:48 pm #77223Re: Housing Advice!
Hi, I am in a sticky situation. My mobility is very poor and our current home is unsuitable. I am not allowed stairlifts as I have 2 children under the age of 7. I am not allowed a through lift as they say there is not enough room.
That is such a strange rule. you get stairlifts design with specialist seats for young children!! It must differ on what council you are under. I have had a stairlifts since the age of 11 and never heard that rule before. There was under 7s in my household, one of which was a baby when I had my last one fitted. I have a stairlift with riser (stands me up) to allow me to be both indipendant and also be safer for me to look after the children on my own.
And from a safety point. children who are born and brought up with adaptations are very aware that things like stairlifts are not toys. none of the children in my family look at it twice, would never joy ride on it and are all mindfull to remind friends not to touch. Yes they had a wee shot when anything new comes into the house, but hey aids are pretty boring and thats that.
And I haven’t seen a lift that doesn’t come with a key that cant be removed. When keys out chair wont move.
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010March 19, 2011 at 1:27 pm #77224Re: Housing Advice!
Just had a thought. Have you tried getting an independant survey done by a Stairlift company ie pretend your a buyer.
I have found that sometimes the rules/road bloks the council puts in your way differes from the actual law and what you could get if you were a cash/private buyer. I searched the internet high and low for the riser seat stairlift, only to find out that the council does fit them but dont advertise the fact coz they cost alot more than your standard lift as you need the more expensive track.
Try getting a couple of surveys and take them to your MP etc.
They only issue I ever had with stairlift designs was space, as our front door opens near the stairs. I needed a lift that would fit snug behind the front door.
Also Can you still walk?? I can shuffle about the house but it has been highlighted that as soon as I need a lift with room to transfer they may not provide one as the law says wheelchairs need 900 to turn in and I only have 860 grrr. Soo I will be shuffling around as long as I can
"""""""What doesn't kill you makes you stronger""""""Cat (Mod)ModeratorPosts: 1,002Joined: 20/09/2010
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