Friday 20 May 2016

Two lives? Not any more.

I read a post this morning by a fellow lupie about "getting frustrated about what you used to be able to do". While I long ago stopped doing this, it resonated strongly with me for the phrase "life seems to separate into the time “before” the incident and life “after” the incident."

This took me a very long time to get over. I used to say that I had had two lives. Worse, it felt like the first was the good and "proper" one, while the second was a bad, "wrong" one. For several years I hid all "evidence" of my "old life". For instance my old sports medals got put in a box under the bed. It was too painful to look at them.

But over time, this changed. My life now feels like a whole, albeit with a drastic life changing event at the start of adulthood. But it makes no more sense to say I had two lives than, say, for married couples to say they had two lives: pre and post marriage. They are just different stages of a varied colourful life with its ups and downs.

I won't say I don't get fed up about it. I always find the anniversary of the onset of my illness difficult. On the one hand I don't want to be ill. On the other hand I have been sick and disabled all my adult life. It has shaped who I am. So given the chance to go back and not become sick, would I do it? Perhaps not. It is confusing quite frankly.

What I would do given my current poor state of health is jump at the chance of an improvement. It doesn't even need to be a cure. I would just like to be well enough to go out and leave the house on a regular basis. Maybe even well enough to work again.

Anything else? I could take it or leave it. For instance I'm not that bothered about being able to walk or not. While access is still a nuisance, my wheelchairs would allow me to do most of what I want, if only my health would play ball.

But for all that I rarely think about cures or improvements.  I tend only to think about the things I can do right now. And if I do think back to my pre illness stage (or even my earlier less impairing stages of illness), I find they are not a source of frustration but one of joy. Those sports medals? They now hang on my bedroom wall and bring back a host of happy memories whenever I look at them.

Saturday 30 April 2016

#BADD2016 Earning your degree differently should be ok

This is my post for #BADD2016, Blogging Against Disablism Day 2016

People who know me will know that I have a maths degree. So far, apart from the astonishment that anyone would *want* to do a maths degree, nothing too much out of the ordinary.

What makes it less ordinary is *how* I got it. You see, I was extremely ill during those years and spent a lot of time in hospital and/or confined to my room.

When it first became clear during my first year that I was going to miss a lot of lectures, what do you think the reaction of the university and my doctors was? Was it how can we help you keep up? (ha ha ha)

No. Straightaway I was told to go back home to my parents who could "look after me". The most "support" offered was a 1 year deferral.
But I now knew I had an INCURABLE illness (diagnosed in Easter of my 1st year)! How the heck was this going to help?

At first I was very dispirited. I decided that the best option would be for me to do my degree at home through the Open University. That way I could get the course material and then study it in my room.
This is when I (finally) had my *lightbulb* moment.
Why did I HAVE to study like everyone else?
What rule said that the only way to get a good degree was to have a 100% attendence?
As it turned out, at my university, none.

So what was stopping me in creating my own Open University style course right there?
I already had personal care in place from social services, so that was thankfully not an issue.
I could stay at university with my new friends, enjoying the benefits of university life when well enough.
When really ill and unable to go to lectures, I could get notes brought to me and work on my own. I could even buy books to help me with money from DSA.
Excited, I decided that I WOULD go back and attempt my second year.

But I encountered resistance. "This is not how we do things."
Among other things:
  • Friends bringing me notes would be disruptive to them. (photocopying their notes after lectures and bringing them when they visit? Really?!)
  • I shouldn't be "encouraged" to miss lectures by authorising other students to lend me their notes.
  • Some lecturers gave out printed notes and, in a bid to boost attendence,  had a policy of not giving them out to students who did not come. They initially refused to make an exception for me.
  • One course had 10% set aside for handing in weekly coursework (1% per paper). I missed some deadlines due to being in hospital. This was not accepted as an excuse. The lecturers running it said it was "only" 1% so I "shouldn't be concerned".
  • I shouldn't take the exam having missed so many lectures because I would fail (no, I wouldn't, and I should be allowed to try).
A special commendation should be made to my tutor who fought my corner tooth and nail and solved most issues for me.
It was only when I passed my exams with flying colours that attitudes completely changed.
After that lecturers fell over themselves to be supportive, even visiting me in hospital to bring me notes.

Unfortunately not everyone is so lucky.
I follow the twitter feed @PhDisabled.
What is clear is that almost 20 years on, disablist practises such as grades being given for attendence, or no allowances being given for deadlines are still common.
It is also clear that universities are still set up for the traditional way of learning and simply cannot cope when a student needs to be different.
Yet it is ok to be different. I even went on to do a PhD and became a maths researcher!
I am proof positive that what is important is *what* you learn, not *how* you learn it.

Monday 21 March 2016

Iain Duncan Smith Legacy

EDIT: On November 07th 2016 the UN found the UK guilty of grave and systemic violations of disabled people's rights.
This was a direct result of the cumulative impact of the policies listed below.

The following is a list of policies and damning court decisions and findings undertaken under the watch of Iain Duncan Smith (emphasis on those affecting disabled people):

  • April 2011: LHA (Local Housing Allowance) is reduced to 30th percentile of local housing market instead of 50th with immediate effect.  Affects 775,000 households.
  • April 2011: Uprating of benefits is changed from RPI to CPI (a cut expected to save £6 billion).
  • January 2012: LHA single room rate is extended to under 35s instead of under 25s. Disproportionately affects disabled people who cannot flat share due to disability but do not meet the stringent criteria for exemption (mid rate care DLA).
  • April 2012: Contribution based ESA WRAG is time limited to 1 year (out of work benefit for those too sick/disabled to work), affecting 700,000 disabled people.
  • April 2012: The "Youth Provision" is abolished. This allowed young disabled people to access contributory benefits. It results in loss of income for 80% of those benefiting from it and total loss of income for 12.5% of those.
  • May 2012: LHA regulations are found to discriminate against disabled people for failing to allow an extra bedroom for overnight carers or children who cannot share due to disability.
  • December 2012: New Sanctions rules are introduced, allowing sanctions to start sooner and for longer.
  • 2012-2013: Remploy factories are closed down. Iain Duncan Smith famously says workers sit around making cups of coffee. 3 years on less than half have found employment.
  • January 2013: ESA regulations are amended, making it harder to qualify. Assessors may make a decision based on therapy or aids a claimant *could* have whether or not they do or whether it is in fact available, possible or (in the case of treatment) they have given consent. Physical impairments may no longer award points in the mental health and cognitive section and vice versa. Eg a physical injury causing cognitive impairment would have all such symptoms ignored.
  • April 2013: Legal aid is abolished for welfare cases.
  • April 2013: DLA is begun to be replaced with PIP to make 20% savings (benefit to cover extra costs of disability). 500,000 disabled people are expected to lose their benefit. By 2016 14,000 disabled people have had their motability car repossessed. This is just the start as most people have not yet been assessed due to errors and delays. EDIT (March 2018) This figure has now ballooned to 75,000, 43% of the 175,000 motability clients so far assessed.
  • April 2013: The Social size criteria more commonly known as the Bedroom tax is introduced. This removes housing benefit for "spare" rooms for social housing tenants. 660,000 households are affected, two thirds of which include a disabled member. 
  • April 2013: All benefits are capped to a 1% uprating until 2015, bar Carer's allowance, DLA/PIP and disability premiums. Ministers lie by claiming disabled benefits are unaffected, even though ESA is included (even the support group to some extent).
  • April 2013: Council tax benefit is abolished and replaced by council tax reduction scheme, administered locally. This leads to a postcode lottery with many disabled people, including those in the ESA support group, liable for up to 25% of their council tax.
  • May 2013: UK Statistics Authority finds ministers from the DWP repeatedly used false disability statistics to justify benefits cuts.
  • May 2013: In a legal court case the WCA is found to discriminate against claimants with mental health illnesses. As yet the recommendations to remedy this have not been implemented.
  • October 2013: Non time limited unpaid mandatory reconsiderations are introduced as an extra step before being allowed to appeal benefit decisions.
  • March 2014: The Work and Pensions Committee warns the DWP "to exercise care in the language used in accompanying press releases and ministerial comments in the media, to ensure it avoids the risk of feeding into negative public views about benefit recipients."
  • June 2014: The implementation of PIP is called a "fiasco" by the Public Accounts Committee after a "failure to implement a pilot scheme resulted in significant delays, a backlog of claims and unnecessary distress for claimants who have been unable to access the support they need to live, and in some cases work, independently."
  • July 2014: A court case against the restriction of high rate mobility from 50m to 20m in PIP fails. However the DWP admits (para 80) "we were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives".
  • August 2014: Figures reveal a 580% increase in ESA sanctions.
  • November 2014: The Government Work Programme is branded a failure by the Public Accounts Committee. 90% of ESA claimants have not been found jobs and providers are spending less than half than promised on these hard to place groups.
  • March 2015: A new study (Cheshire Hunger) shows that problems with benefits account for nearly half (47%) of all referrals to food banks, with sanctions accounting for 11% and ESA claimants 4%. A significant number remained dependent far longer than the initial crisis.
  • April 2015: A second study published in the BMJ finds that the unprecedented rise in foodbanks (soaring from 29 Trussell Trust banks in 2009-2010 to 251 in 2013-2014) is linked to higher unemployment, sanctions and cuts in welfare spending.
  • June 2015: The delays to PIP are ruled unlawful in the High Court.
  • June 2015: The ILF is abolished. 17,000 people lose funding to pay for their personal care. Some funding is given to councils for the first 2 years and then agreed for a further 4 years, but it is not ringfenced. Most disabled people affected see huge cuts to their hours and loss of independence.
  • August 2015: Following FOI requests, figures are released showing thousands of people died after being found "fit for work."  However the statistics released are confusing, omit key data and make it hard to draw accurate conclusions.
  • August 2015: The DWP admits to using fake claimants in leaflets praising the use of sanctions.
  • September 2015: Coroner rules that the death of disabled man Michael O'Sullivan in 2013 was a direct result of  his failed WCA.
  • September 2015: The UN confirms it is investigating the UK for "grave and systematic violations of the human rights of disabled individuals", the first time such an investigation has taken place in a first world country.
  • October 2015: Cap to Access to Work, is introduced, limiting or eliminating entirely work options for those with higher support requirements.
  • November 2015: Independent research is published suggesting 590 suicides and 279,000 cases of reported mental health illness can be directly linked to controversial WCA.
  • December 2015: Latest figures show that PIP appeals now account for 38% of all appeals and carry a 60% success rate. ESA and DLA success rates are 58% and 55% respectively. In contrast, appeal success rates for tax credits or income support run at between 25 to 40%.
  • January 2016: The Bedroom tax is found unlawful and discriminatory at the court of appeal in the case of disabled children requiring overnight care and people requiring panic rooms.
  • February 2016: Figures show half of those reassessed for PIP are losing their motability vehicle. There are 650,000 disabled people on the scheme and only 31,200 have been reassessed so far. Of these 14,000 have lost their car or wheelchair. EDIT (March 2018) This figure has now ballooned to 75,000, 43% of the 175,000 motability clients so far assessed.
  • January 2016: Conservative Disability Group launches inquiry into abolition of ILF following widespread concern about its impact.
  • March 2016: Evidence has emerged that a "prevention of deaths" letter was received by the DWP from a coroner in 2010, following the suicide of a disabled man who failed his WCA. Graying and Iain Duncan Smith failed to act or respond despite a legal obligation to do so, and the  WCA was rolled out with no change to millions of Incapacity Benefit claimants. The letter was also not shown to Professor Harrington, later in charge of reviewing the WCA to make it better and safer.

About to be introduced:

  • 2016-2018: £22 million is to be spent on the DWP to recruit presenting officers to support the department in PIP and ESA tribunals. (Recall that in contrast, claimants do not have recourse to legal aid, axed in April 2013).
  • April 2016: All benefits will be frozen for the next 4 years bar DLA/PIP and disability premiums. Ministers lie again about disability benefits being unaffected as once more ESA is included, including the Support Group to some extent.
  • April 2016: Disability benefits, premiums and carers allowance are frozen for 1 year due to a negative CPI in September 2015.
  • April 2016, Universal credit: Recent cuts to tax credits which were dropped due to fierce opposition will be included as part and parcel of this benefit
  • Universal credit (law passed in 2012): There will be no equivalent to the disabled working tax credit. Help will only be available to those who have "limited capability for work or work related activity". This will affect up to 116,000 working disabled people at around £40 per week (however the timetable for this is unclear, as the UC system can currently only cope with simple cases).
  • September 2016: DSA (Disabled Student Allowance) will be cut. Government is withdrawing funding entirely for some types of support and hoping universities will pick up the cost. This will affect 70,000 disabled students.
  • 2017: ESA WRAG rate is to be cut by a third by £30 per week to align it with JSA. This will affect new claimants and those with a 12 week break in their claim.
  • April 2018: Social housing rents are to be capped at LHA rates. This will see large numbers of evictions of single people under the age of 35 suddenly only eligible for shared rate (see above). It will also devastate the supported housing sector whose rents are naturally higher, affecting disabled people, elderly people, women's refuges and more.
  • April 2018: Support for Mortgage Interest (SMI) for people on very low incomes to be changed from a 'benefit' to a loan from 2018. Waiting time from application also changed from 13 to 39 weeks.
  • By 2020: Social care is facing a £3 billion funding gap
  • Universal Credit (law passed in 2012): Disabled people face the abolition of the Severe Disability Premium (SDP) at a cost of £62 per week. This will affect new claimants and those with a "change of circumstances". 230,000 disabled people currently receive this premium and will see their benefit frozen and/or eventually cut.
  • Universal Credit (law passed in 2012): The disabled child premium is to be halved, affecting an estimated 100,000 disabled children.
  • Universal Credit: Disabled people will have to attend a mandatory "health and work conversation" (work focused interview) BEFORE their WCA. This puts the onus on a medically untrained DWP jobcentre work coach to decide what the claimant is capable of doing prior to any medical assessment. Disabled people will be sanctioned if they do not attend.

March 2016: The budget sees further extensive proposed cuts to PIP: Iain Duncan Smith finds his conscience and resigns...??!

Important comment: Other than the major *direct* impacts on disability I have made a conscious decision not to include the fiasco which is universal credit in this timeline. This is because an account of the various stages of Universal Credit, the controversial inquiries, statements, court cases amd statistical rebukes concerning it would require a blog post all to itself.

NB: Please feel free to let me know anything I have forgotten.