Archive for January, 2012

The Search For Housing

As you probably know, I became disabled back in 2009. Today I’m still living in the same privately rented house I was then.

My current house is pretty decent on paper; it’s in a nice area, it’s close to good bus and rail links, it’s got a nice garden, a good kitchen and it’s plenty big enough for my partner & myself and our housemate. Sadly for me, it has stairs & steps galore. A set of stairs leads to our upstairs (and only) bathroom, steps lead down to our front door and steps lead out from the back. As we have a shower over a bathtub there is even a big step to be covered if you want to wash. I can’t really manage steps, lifting my leg up to go up a step (especially my right leg) pulls on my damaged abdomen and that causes severe pain. I’m sure you can see why this is an issue.

Back in 2009, when we first discovered my condition was permanent we started asking ourselves how we could go about moving to somewhere that wouldn’t leave me unable to wash without assistance as well as stranded upstairs on bad days and trapped in the house (as the wheelchair won’t climb steps itself) most days. I was, as I still am, unable to work and my partner had taken on a very low paid part time job with Royal Mail so he could balance his need to support me and his need to earn. We were not getting any ESA or DLA because of appeals and alike and we were only getting a tiny bit of housing benefit because of the way Birmingham City Council deals with couples (we sorted it after a 20 months of arguing).

Naturally we started looking at privately rented properties online to begin with. We just wanted somewhere which;

  • was on the ground floor or could guarantee working lifts – because there was no point moving to somewhere with stairs.
  • had level access – so I could get my wheelchair out front door and onto the street.
  • had a level access shower – I can’t bathe without a lot of help and it always causes extra pain so a walk-in shower would be ideal.
  • was in range of my GP, both of the hospitals I attend, my psychotherapist and my psychiatrist
  • had somewhere we could store my wheelchair – be it a garden we could put a secured shed in, a garage, a large cupboard in the house or a decent sized hallway.
  • ideally had a second bedroom so my partner could sleep when I was up all night with pain – but we were also aware how that would be a luxury a couple on less than £7k a year would ever be able to afford.

Of course we found nothing. Purpose built flats or expensive re-purposed buildings were the only ones with level access. Most of the ‘flats’ in our price range were a couple of converted rooms in a HMO (houses in multiple occupation) with steps all over and no where to store mobility equipment and more often than not no shower, let alone a walk in one. Any places which had walk-in showers described them as ‘wet-rooms’ which added an extra large price tag to the property. We quickly began to realise that accessible meant; spacious, purpose built apartment with storage space and a wet room and all of those things are pretty desirable to able bodied folk too. It didn’t talk too long to realise we were never going to find a 1 bedroom accessible home privately for less than £650pcm in Birmingham – which I assure you is pretty much double what we could have ever thought of affording at that point. Nowadays it’s about 1/3rd more than we could safely afford.

We spoke to someone from the council who explained that if we wanted to go on the council housing register we’d have no hope unless we applied at the same time to be on the disabled persons housing register. They also explained that we’d have no hope of being accepted onto that without being in receipt of DLA. So until my DLA came through we were stuck where we were.

The next step was calling Social Services and arranging for an Occupational Therapist to assess us so we could get some adaptations in our home.They kindly fitted us with grab rails in the bathroom, a toilet seat raiser, a extra banister on the stairs and a railing to help with the steps in the front garden. All of which made getting around the house a bit easier and have reduced the number of falls I have quite a bit but none deal with the problem of the severe pain caused by using stairs. Because we are in a privately rented property and I can walk (albeit with a lot of pain) we couldn’t have a stairlift put in so the worst of the problems with the house were left unresolved.

Eventually, in 2011 my DLA was awarded and we got onto applying for council housing. A fortnight ago (Jan 2012) we were awarded points and placed on the disabled persons housing register. Hurrah! Last week we got a call inviting us to go see an adapted property that would suit our needs and we naturally jumped at the chance to go see it.

It took three buses to get there and we soon discovered that it was in another area where whoever built it clearly thought lowered kerbs were optional extra they could do with out. The property was in a nice little cul-de-sac with a lovely community feel to it hidden away in a slightly rough bit of Birmingham. Looking at the building we could see it was two storey, but we assumed we were either a downstairs flat or that the building had a lift. The rep turned up and opened the front door and we were immediately greeted with this sight;

Needless to say it wasn’t quite what we expected from a level access home suitable for a wheelchair user… I stayed outside in my chair whilst my partner went to have a look around (because if it was really good we thought we could contact social services and ask about getting a stair/wheelchair lift put in). Where we need a walk-in shower this place only had a bath tub. Where we need wheelchair storage this place had none. It also was missing white goods and most of the sideboards in the kitchen too. You might not be surprised to hear that we turned it down. The housing rep who was with us was mortified to realise that we’d been sent to this property so kindly phoned the people responsible and gave them both barrels on our behalf.

The search is still on and I’ll keep you informed of anymore hilarious housing mishaps along the way.

 

Report By Disabled People Slams Government DLA Plans.

Today a Report compiled by disabled people, led by the wonderful Sue Marsh & Dr Sarah J Campbell has been released. I’m posting the body of the press release here.

Revealed: New Report shows overwhelming opposition to coalition’s disability benefit reforms kept hidden by the government Conservative Mayor of London heavily critical of government’s plans for Disability Living Allowance

The report was entirely researched, written, funded and supported by disabled people.

A report published today (9 January) finds that Government misled MPs and Peers over the
hostility to disability benefit reform. It finds that Parliament has been given only a partial
view of the overwhelming opposition to the Coalition’s planned reforms of a key disability
benefit, Disability Living Allowance (DLA). It finds that this opposition was previously not
released to public scrutiny by the Government.

It is based on the responses to the government’s own consultation on its planned DLA
reforms, which were only made public once disabled people requested them under the
Freedom of Information Act. Findings included:

  • 98 per cent of respondents objected to the qualifying period for benefits being raised from 3 months to 6 months 
  • 99 per cent of respondents objected to Disability Living Allowance no longer being used as a qualification for other benefits
  • 92% opposed removing the lowest rate of support for disabled people
In all three cases, as well as many others, London’s Conservative Mayor, Boris Johnson also
objected to the proposed changes. He said in his response

“The Mayor would call for the Government to retain the three‐month qualifying period as the increase to six months will mean that people with fluctuating conditions have increased difficulty meeting the qualifying period. People with fluctuating conditions face the same barriers that all disabled face in relation to higher costs of living and DLA is essential to maintain a decent quality of life.”

“We would recommend that the passporting system remains the same as under DLA as it has worked well when signposting people to additional benefits to which they may be entitled.”

“The Mayor does not support this change, as those on the lower rate care component may have additional costs as a result of their impairment but may lose their access to this benefit as part of the proposed removal under the reforms.”

The Mayor also objected to the government’s strategy for clamping down on disability benefit fraud, arguing:

“The government proposes imposing penalties if disabled people do not inform the government in changes in their circumstances. However, the Department of Work and Pensions statistics give the overall fraud rate for Disability Living Allowance as being less than 0.5%. For those with fluctuating conditions asking them to report every change to their condition would prove very stressful.”

The Mayor’s views were representative of the overwhelming majority of responses to the
Government’s consultation..

The new report, Responsible Reform, suggests that the government’s DLA consultation
breached the government’s own code of practice and was “highly misleading”. Researchers have used the Freedom of Information Act to obtain more than 500 responses
to the consultation that were submitted by disabled people’s organisations, disability charities and other groups – including the response submitted by Boris Johnson – and have carried out the first detailed, independent analysis of those responses.

The analysis showed overwhelming opposition to replacing DLA with a new Personal
Independence Payment (PIP). The government also plans to cut spending on DLA/PIP by
20%.

The new report has been researched, written and funded by sick and disabled people, thousands of whom contributed to the research through their use of social media.
Its authors now hope to use the report to persuade members of the House of Lords to back
an adjournment debate calling for a pause of at least 6 months. In that time, plans for PIP
should be reconsidered with the views of disabled people properly taken into account.

The report has already been backed by organisations and disability experts including

Disability Alliance
Mind
Papworth Trust
Scope
Bert Massie CBE &
Ekklesia

Disability Alliance ‐ “The Government’s mis‐portrayal of the DLA consultation response is
truly shocking and could represent a betrayal of the process of consultation and engagement with disabled people. The Government has refused to provide a justification for a 20% cut in DLA expenditure and we fear that the same faulty rationale, misunderstanding of disability and higher costs of living and poor judgement exposed in this report sadly underpin the basis of the entire reform plans.”

Paul Farmer, Chief Executive of the mental health charity Mind, said:

“The ‘Responsible Reform’ report is essential reading for everyone with an interest in
Disability Living Allowance (DLA) reform including the Government and Department for
Work and Pensions Select Committee. It is a vital contribution to the debate on reform and a
huge achievement for the volunteers who have produced it.
“As well as forensically deconstructing many of the arguments offered by the Government
for their proposed reform, the report shows that much of the rise in claimants over recent
years has been down to better access to the benefit for people with mental health problems,
whose needs are often fluctuating and invisible.
“Rather than getting out of control as the Government claims, DLA has been increasingly
going to people who really need it. The proposed 20 per cent cut to the budget will have an
enormous impact on many people with illnesses and disabilities, and we remain very concerned about the unintended consequences this could lead to.”

Papworth Trust supports this report’s concerns that the decision to reduce DLA by 20% may
have been based on incomplete or misleading data about the reasons for growth in DLA.
Our recent survey found that almost 9 out of 10 people would have to cut back on essentials
such as food or being able to get out and about if their DLA payments were reduced or
stopped under PIP. We believe that the proposed 20% cut will push more disabled people
into poverty.

Given that this report was entirely researched, written, funded and supported by the people
that these changes will affect, we believe that the questions it raises should be answered by
the Government.

Richard Hawkes, Chief Executive of disability charity Scope said:

“This report once again reveals the very real concerns disabled people have about the
government’s reform of Disability Living Allowance.
“We know that this benefit is a lifeline for millions of people and families.
“It gives them the opportunity to meet the extra living costs they incur as a result of living
with a condition or impairment and we know that people are genuinely worried about the
impact these reforms will have on their quality of life.
“We urge the government to listen and act on these concerns and to ensure its replacement
takes into consideration all the barriers disabled people face in everyday life so they can live
independently and play an active role in their local community.”

Sir Bert Massie CBE said:

“The Government’s proposed changes to the system of financial support for disabled people,
from Disability Living Allowance to Personal Independence Payment, has caused anxiety to
many disabled people. I have always found the explanations offered by the Government to
be unconvincing and I therefore welcome this report which analyses the evidence on which
the decisions were based. It shows that rather than being broadly welcomed by disabled
people and disability organisations the new proposals were subject to widespread criticism
and alarm. I hope this report will result in the Government reviewing its proposals so they
enhance rather than damage the lives of disabled people.

Simon Barrow, Co‐Director of the beliefs and values thinktank Ekklesia, said:

“This is an excellent piece of research. There remains a gaping chasm between the government’s rhetoric about maintaining support for disabled people and the actual
evidence about the impact of the changes and cuts it is imposing. The voices of those at the
sharp end are not being listened to in a way that shapes policy. The concepts of justice
dignity and social solidarity are being eroded and replaced with a piecemeal approach to
provision which sees care as essentially voluntary.”

Sue Marsh, the disabled blogger and activist who led the research, alongside Dr Sarah J
Campbell, said:

“For some years now, poorly designed Social Security reforms have created a “trust deficit”
among disabled people towards government.

“We believe that reform must be measured, responsible and transparent, based on available evidence and designed with disabled people at the very heart of decision‐making. Currently, we do not believe this to be the case. 
“While disabled people welcome reform of DLA where it will simplify the system and better support their needs, they do not want a new benefit. They believe it is a costly irrelevance during a time of austerity.
“We urge members of the House of Lords – across party political boundaries – to take note
of this research and the strength of opposition to the proposals. It is not too late for them to
halt these deeply damaging reforms.”

Another contributor to the report, Kaliya Franklin, said:

“Cutting spending on DLA will increase the burden on local authorities, the NHS and
community services at the very time they are seeking to find savings by reducing eligibility,
particularly for social care support.
“Sick and disabled people have voluntarily combined our skills, experience and talent to
produce this report, demonstrating that if we are able to work in the way our conditions
demand we can participate in the world of employment, but only if it is willing to receive us
on our terms, with more flexible ways of working and participating.”

Among the report’s conclusions:

  • Only 7% of organisations that took part in the consultation were fully in support of plans to replace DLA with PIP
  • There was overwhelming opposition in the consultation responses to nearly all of the government’s proposals for DLA reform
  • The government has consistently used inaccurate figures to exaggerate the rise in DLA claimants
  • The report shows that nearly all of the recent increase in working‐age claimants of DLA has been associated with mental health conditions and learning difficulties.
  • Between 2002 and 2010, the number of working‐age DLA claimants – excluding
  • those with mental health conditions and learning difficulties remained remarkably
  • stable
  • 98% of those who responded opposed plans to change the qualifying period for PIP from three months (as it is with DLA) to six months
  • 90% opposed plans for a new assessment, which disabled people fear will be far too similar to the much‐criticised work capability assessment used to test eligibility for employment and support allowance (ESA)
  • Respondents to the consultation repeatedly warned that the government’s plans could breach the Equality Act, the Human Rights Act and the UN Convention on the Rights of Persons with Disabilities

Other Points to bear in mind:

  • The government’s response to the consultation on its DLA reforms was published in April 2011
  • Discussion of the Welfare Reform Bill is due to resume at its report stage on 11 January in the House of Lords
  • The report was written by Sue Marsh, the author of the blog Diary of a Benefit Scrounger, and Dr Sarah J Campbell
  • Employment and Support Allowance is the replacement for Incapacity Benefit introduced by the Labour government in 2008
  • The research suggests that, although the number of people with mental health conditions claiming DLA has risen continuously over the last 15 years, only one in 100 working‐age adults is claiming DLA in association with a mental health condition. This is far lower than estimates of the population prevalence of more severe mental health conditions. This is a global phenomenon and unlikely to be related to the design of the UK benefit system.
  • The research also suggests that the rise in the number of people with learning difficulties claiming DLA is likely to be due to earlier diagnosis of certain conditions
  • Boris Johnson’s full response to the consultation can be found here: http://www.leftfootforward.org/images/2012/01/Mayoral-Submission.pdf

If anyone reading this want’s to get in contact with Sue Marsh please either drop me a line & I can pass on contact details or please visit her blog, Diary of a Benefit Scrounger.

Please do what you can to spread the word.

Exhaustion & Pacing

I’ve been a bit quiet on here these last few weeks because I’ve not had the energy to do very much of note or to even write about anything. My desktop is awash with half started pieces that I’ve not been able to finish.

This of course is part of living with my condition. Most people when they look at me see my wheelchair or my crutches and assume lack of physical mobility is the most disabling impairment I live with. When this first happened I too thought it would be the most disabling impairment too. Looking back over the last few years I can see I was wrong, exhaustion is by far one of the most disabling conditions I have to deal with.

I can deal with not being able to walk without pain by using a wheelchair. I can deal with not being able to bend by using grabbers or asking for help. I can’t grab a ‘aid’ to help me when I’m too exhausted, both mentally & physically, to cope with talking, typing, watching a DVD or simply sitting up-right. The lights are on but no-ones home and that is so disabling I can’t really find words to describe it, yet I’m going to try in this post.

Before I became disabled I didn’t really feel like there were limits on the amount of energy I could draw from (have a read about Spoon Theory analogy if you want an easy to digest description). Now things have changed. Personally, I find there are quite a lot of things that drain my available energy;

  • Pain – being in constant fluctuating levels of pain (varying between 5-8 on the pain scale) everyday saps at my reserves.
  • Severe Pain – when my bowel gets obstructed or partially obstructed the agony (between 7-9 on the pain scale) drains my reserves really quickly.
  • Hiding the pain also saps at my reserves. You may ask why I hide it? No body really wants to be around someone who can only say “It huurrrrtttts!” all the time. Sure, it’s fine with an acute issue like a sprained ankle. Less great with a chronic condition. 
  • Stress – too much stress causes my PTSD symptoms to flare up, it also causes me to tense up which increases my pain (which increases my stress… you see the cycle here). I also have a lower tolerance for stress before it all gets too much. Things I find stressful include dealing with people, being in a big crowd, raised voices (especially male ones), anger (be it overt or covert), feeling trapped, not being able to keep the house clean etc…
  • Sickness – throwing up drains my energy. Simply feeling sick does too.

There are other things that do it too, far too many to list on a blog entry I should have finished days ago. Regardless, I spend much of my time too drained to get anything much done. I’ve been writing this tiny post for three days now.

I deal with it by pacing, working out how much I can or can’t do and applying it to my daily activities – asking for help and support or using aids to do the most draining ones and stopping myself from doing things that will wipe me out. I know the walk to and from the kitchen costs me so if my partner is around I ask if he can do it instead. That way when he isn’t I have a chance of managing it. It’s painful having to always ask others if they can grab something for you or make you a cuppa when you fancy one but ultimately it’s less painful than doing it all then ending up trapped in bed writhing in pain (and needing them to do everything for you, rather than just grab a cup of tea).

I’ve still not learnt to pace properly, I still do more than I my body can cope with regularly but I’m learning and that’s what’s important. If you’ve got any fab pacing tips I’d love to hear them in the comments.

    %d bloggers like this: