The impact of not having accessible housing

Kerrythompson

Kerry Thompson is a disability and lifestyle blogger who spends a lot of time being a Changing Places Campaigner.

I think it's everyone's dream to leave your parents’ house and live independently, whether it's renting or buying. The thought of making your own rules and being able to come and go as you please gives you that sense of being very grown up! I remember that feeling I had waking up in my first home, a sense of pride and excitement as it was all mine. If I wanted to paint the walls bright pink then there was no one to stop me, if I wanted to stay in bed all day then I could.

Unfortunately, my dream of living independently became harder after I was diagnosed with a rare form of Muscular Dystrophy, which is a progressive muscle wasting disorder. The perfect sanctuary I called home was becoming very claustrophobic and unsuitable. I was unable to use my wheelchair inside, with space to manoeuvre being limited. The thought of losing my independence was scary and upsetting, which caused my mental health to suffer.

It was time to face facts. I needed a more suitable home and more space for me to move around. A home that was adapted for my needs would be critical as my Muscular Dystrophy was going to get worse, rather than better. I will eventually need equipment other than my powered wheelchair and this needed to be taken into consideration when looking for a new home. It took 3 years of being persistent and being turned down by my local council for being too young for a bungalow to get somewhere with the process. I wasn't 65 years old or over and this was a large barrier for getting support. I will never understand why this rule is applied, a bungalow should be seen as a home for any disabled person or family, not just those over the age of 65.

However, I was now fully reliant on my powered wheelchair for getting around, but it couldn't be used in the home I was living in. I felt stuck, you could even say trapped, this wasn't my idea of living an independent life. Being trapped in the same four walls was extremely hard. You get stuck in your own head, your mental health suffers, and it definitely took its toll on me. This is something that mentally and physically affected me for a long time. As crazy as it sounds, this pushed me even more to not give up on the idea of living an independent life.

My story has a happy ending, don't worry. For the past 8 years I've been living my best life with my husband, independently in a two-bedroom bungalow that has been purposely built for disabled people like myself by Habinteg. I have a kitchen big enough to manoeuvre around in and a living room that I can dance in if I want.

I class myself as lucky to have the independence that I do. By having a home that's adapted for my needs it has made the world of difference to my life. The appropriate housing can dramatically improve disabled people’s ability to live independently, with houses that meet accessibility needs showing a reported improvement in health and wellbeing.

New figures published in June by the Housing Association Habinteg reveal that, outside of London, under a quarter of new homes due to be built by 2030 are planned to be accessible and adaptable. Only 1% of homes outside London are set to be suitable for wheelchair users.

You can read more about Kerry Thompson’s campaigning work on her blog: My life, Kerry’s way.

Have you found your house affects your independence? What are ways that your house has promoted your own independence? Let us know in the comments below!

April2018mom

We live in a apartment.
Honestly since my apartment is on the first floor I have not had too many issues with my son’s wheelchair. My son was born with a lifelong birth defect that causes lower body paralysis and serious bladder issues so he needs access to a toilet constantly. He uses a wheelchair at the moment. To enable him to remain fairly independent, we are currently renovating the bathroom for him. 
After a year of inquiries and research we found the perfect apartment. We had help from his therapists. It was not easy but it was worth it. We are moving into our new apartment on Saturday afternoon. It is not far from this one either. I agree. I’m thrilled to see the place and to make it my own too. I hope that accessible properties will be easy to find when my son becomes a adult as well. 

Chloe_Scope

Thank you @Kerrythompson for such an informative post! I'm so glad you were able to find a suitable house and I hope you are able to dance as much as you'd like now!

gwynneth

our house has 3 floors, i have ms so i struggle to get to the 2nd floor where our bathroom is. we,ve been told we can't have a wet room downstairs it would cost too much but i can have a commode. they will put a small lift in the corner of our small sitting room which will take me to my sisters room which is bigger than mine. she will have to move to my smaller room which i prefer. we can only offset the money they are offering us towards everything downstairs its all a nightmare and not doing anything for my sanity

JennyF

Hi
I'd like to put in a word for people who have difficulty with stairs but are not wheelchair users. My daughter  has multiple difficulties and is in a property with awful stairs, and this seriously impacts on her life. However, she has no chance of getting a bungalow because wheel chairs users always have priority - the solution of course is to meet the need for single-floor accommodation by building enough bungalows and flats in blocks with lifts. 

JennyF

And on a different issue - many disabled people cannot work and must depend on benefits, including housing benefit. However, many landlords will not take housing benefit claimants as tenants - some of this may be prejudice, but a lot of the reluctance is caused by the way in which benefits can be withdrawn without notice, leaving the landlord out of pocket through no fault of their own.

Topkitten

I'm 62 and have been disabled officially for about 8 years (12 according to my GP). Up until 3 and a half years ago I was struggling in a rented house of 3 floors and sleeping in a recliner chair to avoid some stair usage while I waited 18 months to get far enough up the list to get something suitable. My area allows disabled people under 60 and old people 60 and over to move to a bungalow, which is what I did. Whilst this place was fine then I have a degenerative condition that no one, not even specialists, has ever heard of. So, after 6 months I could no longer use the garden and for 18 months have been housebound. I should be in a wheelchair full-time but this place isn't suitable and cannot be adapted for one but, due to mistakes by both the hospital and care services, now, not only am I suffering much more than I should I am also being prevented from moving into somewhere suitable. The various health and support services are far more interested in supporting each other when mistakes are made and to hell with the patients health and sanity. Currently I spend 23 hours a day living and sleeping in a recliner chair and walking a little (and in tremendous pain) to occasionally eat and have enough drink to take medication.

I do not understand why I am left to suffer in such a manner. Due to deterioration in mental health I have tried suicide around 30 times in the last year, trying various methods I am limited to and ended up having two dozen ambulance visits during the same period when I failed (I have also spent around two weeks in hospital beds) and the numbers for the 6 months prior were about half as many again. It is costing the services a fortune all to protect two people's incompetence. No wonder the health services are in financial trouble.

It took me 11 months instead of 2 to get Occupational Therapy to assess me (due to further incompetence by the GP surgery) and whilst the guy agreed I should be moved his English was so bad he completely misunderstood and trivialized my problems as "back pain" and covered up the lack of care stating I was coping. Why would the Council move someone who is coping? The only visitor I get other than my son sometimes is a cleaner which the idiot changed to a carer covering 'personal needs'. I also had to teach the guy the limitations of wheelchair use by actually trying to maneuver around corners and through doors because he obviously had no experience whatsoever.

Personally, in spite of my children's hopes, I hope that one day I will succeed in ending this pathetic situation. I have nothing else to look forward to except increasing misery.

TK

worried33

yeah I have noticed that a lot of housing ideal for the disabled is targeted at over 50s only.  Seems to be age discrimination which is a shame these practices still exist.