>My submission to the consultation on DLA reform

>

I am lifelong disabled. Always have been and always will be.  Specifically I have cerebral palsy (CP) and use a wheelchair 95% of the time.  I’m able to stand and take a couple of steps, enough solely to move between bed, wheelchair, toilet, powerchair etc.  I also have clinical depression and anxiety.  This was not caused by my physical disability but is made much worse by it.  I was diagnosed with this in 2003 and have been on treatment for it almost continually since then.  I have many concerns about DLA reform.
As someone who is lifelong disabled I’ve been in receipt of DLA at the rate of Middle rate care and Higher rate mobility since DLA came into being.  There is no cure for my CP which means I’ll never improve to a state where lower levels or no DLA is needed by myself.  CP being a static condition also means that there is little chance of my condition becoming such I require higher levels of DLA.  As such I have an indefinite award.  That doesn’t mean it’s a permanent award, it just means that they recognise my circumstances are such they need not be reviewed regularly.
I am concerned the greater impact of these proposed changes hasn’t been assessed correctly.  I live in Oxfordshire and in 2007 my support from Social Services was withdrawn as I wasn’t considered to have high enough needs.  Since then the criteria have become even stricter.  My DLA has enabled me to continue living alone.  It means that I can pay for a cleaner to come once a fortnight and mop my floors, change my bed and clean the kitchen/bathroom.  The rest of the time I live in a very messy house I have no choice.  It pays for extra washing because I’m incontinent and also because sometimes my clothes catch on my wheelchair and get dirty quickly (and sometimes for extra clothes because they rip).  It pays for new batteries for my powerchair as I have no other form of out the house independent mobility but don’t qualify for one of the NHS.  For heating as I get cold easily.  Slightly more expensive foods that come in packets I can open without help and things which are low effort to prepare.  If I was to lose my DLA I would have to go back to social services and they would need to find that help for me, something which would likely cost more than the DLA I receive each week.
My family (parents and younger brother and sister) all work full time.  They’d have to find a way to help me out much more than they already do.  I’m not being melodramatic when I say they would likely end up having to do all of the support that DLA allows me to arrange for myself.  Doing that on top of full time work would be very difficult.  My mother runs her own business which would likely suffer if we found ourselves in that situation.  Surely that isn’t good for the economy? 
Then there would be the increased cost to the NHS.  My family wouldn’t want me to feel guilty or like a burden but it’s how I would feel.  I’m 29 and I’m independent, but I’m really scared I’ll lose that.  That’s making my mental health problems worse – I had a panic attack yesterday about the possibility.  If the situation becomes a reality it’s very possible my medications will need to be increased at a higher cost to the NHS.  I’d also no longer be able to afford repairs and maintenance on my powerchair so would have to go back to the NHS for reassessment there.  Parent and other family carers also have a high level of health problems due to their caring responsibilities, again another possibly increasing and likely high cost to the NHS.
Currently I live in a fully adapted flat which I rent from a housing association.  It was designed for a wheelchair user as it was built.  Without my benefits and the support they provide I could face having to give up my flat and move back with my parents.  I’ve never lived in the house they currently live in and it’s not suitable for my needs.  A disabled facilities grant or similar would be needed to adapt it, another cost which DLA helps avoid in my case and I’m sure in many others.
Emma Crees
17th February 2011