Challenge change to PIP mobility for people with mental illnesses

The government is planning to restrict access to Enhanced Rate Mobility PIP, blocking people who experience "severe psychological distress" from qualifying on those grounds.

Labour are challenging this, as are a group of Lords (I think).

If you want to encourage your MP to challenge this change, please email them. You can find your MP here: https://www.theyworkforyou.com/mps/

The text of my letter is below - you don't have to use it, it's just there in case it's helpful.

I'll be calling my MP's constituency office tomorrow as this is a time-sensitive thing, to ask if your MP is able to challenge this change. Emails can take a while to be read, and a call will help get it seen!


Dear My MP

The recent government decision to refuse Enhanced Rate PIP to people who can't travel outside alone because of severe psychological distress directly contradicts one of the reasons we were originally told DLA was outdated and needed to be replaced.

In the DLA to PIP consultation, it was noted that people qualifying for Higher Rate Mobility tended to be people with physical conditions, and this was to the detriment of people with mental or cognitive reasons for being unable to travel alone.

This was included during the October 2013 government response to the consultation on PIP (Moving around activity).

"4.3

When developing the Mobility criteria, we were aware that although DLA includes deeming provisions which award the higher rate Mobility component to claimants who are deaf blind, severely visually impaired and severely mentally impaired, the higher rate Mobility component is predominantly awarded to claimants with physical mobility difficulties only. The DLA lower rate Mobility component has been awarded to those individuals who require guidance or supervision outdoors. This means that many claimants with mental, intellectual and cognitive impairments do not receive DLA higher rate Mobility, despite facing significant barriers to mobility and therefore to independent living.

 The PIP Mobility component has been designed to reflect the impact of impairments on an individual's ability to get around, regardless of whether it has a physical or non-physical root cause. The Government was aware that this approach would mean a reprioritisation of finite resources and those individuals with a physical health condition or impairment would be more likely to see a reduction in the mobility support they receive relative to those with non-physical impairments requiring support for moving around." (my emphasis)

https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/251631/pip-mobility-consultation-government-response.pdf

This was also referenced during Steven Sumpter's court case where he unsuccessfully challenged the consultation process.

What was also raised during the case, by the DWP's barrister was:

"126
i) So far as assistance with mobility was concerned, the policy intention was to treat those with physical impairments and those with non-physical impairments equally."

in reference to the 2012 consultation on reforming DLA. 
http://www.bailii.org/ew/cases/EWHC/Admin/2014/2434.htm

Now according to reports in the FT & Morning Star we are being expected to accept a change where people with non-physical conditions aren't deemed to be disabled enough to need support outdoors?

(referring to: https://www.ft.com/content/2b3a7aa8-faa8-11e6-9516-2d969e0d3b65)

Anxiety disorders and other conditions that cause "severe psychological distress" are incredibly disabling, and not easily mitigated for. The financial support and stability enhanced rate PIP provides will help meet extra costs incurred as a result of struggling to leave the house, and acts as a passporting benefit indicating that individual as being significantly impaired by their condition.

Please challenge this change. It is cruel, and further shows up the change from DLA to PIP as being more about cutting costs than about better spreading the welfare budget around.

Please can you raise this with the relevant Minister?

According to the FT article Labour members are looking to challenge this this week, please feel free to forward this email on whereever it might be of use.

Yours sincerely

UK Disability inequality enquiry required

I've just written a quick letter to my MP asking that Theresa May conduct an enquiry into the inequalities disabled people face.

This is the text of my letter - I'd encourage you to write to your MPs also, feel free to use my letter as a guide, but it's not particularly great so it's probably better if you write your own.

Dear My MP

I'm glad to see Theresa May announce plans to examine racial inequality within the UK. 

I'd also like to see her looking at how disabled people fare in the UK currently, would she consider a similar process to look at the impacts of government policies on disabled people?

I understand the UN is currently examining the government's treatment of disabled people as potentially breaching their human rights obligations, so it may feel like overkill for the government to also conduct research into the same area. However, the government has persistently refused to acknowledge how much damage their policies has done to disabled people.

Disabled people are most likely to be living under the poverty line, to be digitally excluded, to be under-employed, to be struggling to participate in society. The only line we get from the current government is that they seek to improve the potential for disabled people to get into work. This ignores those for whom work is unrealistic, those who can only work part time so will always have a limited income, those disabled people who have caring responsibilities, and the fact that not all problems disabled people have will be fixed by getting a job! 

Please could you ask Theresa May if she would look at researching inequalities faced by disabled people in the realms of social inclusion, education including further and higher education, access to public services, access to healthcare, access to employment, the effects of central government cuts to council funding on social care, and access to housing? And if she isn't willing to open such an enquiry, given the level of inequality disabled people experience, how can she justify not doing so? 

Yours sincerely etc

Editing to add:

You can find your MP via http://www.parliament.uk/get-involved/contact-your-mp/

The reason I suggest this rather than set up a government petition is, petitions asking for government action on disability inequality have in the past struggled to get signatures. If you ask your MP to ask a specific question of another MP, they're obliged to do so.

Petitions are great for popular issues, but, here's the irony of the whole thing, disability inequality isn't a popular issue - yet another inequality disabled people face! So I need you to make the effort to write to your MP personally.

You don't have to support them, you don't have to have voted for them, you just need to live in their constituency.

Thanks for your time,

Robin

Access to Work - the government's in charge of another car crash

The government is actively making decisions that make it harder for disabled people to find and stay in work.

This, despite their rhetoric of work being good for you.

You'd think a government scheme that brings in £1.48 for each £1.00 spent on it (ref. 1 below) would be a flagship scheme, widely trumpeted and funded to the gills. But no, Access to Work, a fantastic scheme, that met the costs linked to meeting disabled people's access needs so they wouldn't disadvantage either employer or employee is being screwed around with, and is turning into a car crash.

Disabled workers are being made to wait 6 months upwards for decisions on whether the scheme will cover their needs. For some, this is too long, and people are having to leave jobs before decisions are made.

Previously, Access to Work was administered from multiple regional offices. Individuals would be linked to a specific advisor, who would understand the detail of their conditions, work, and requirements. This meant less admin time for both worker and government employee as explaining every last detail of work roles, conditions, and needs only needed to happen once.

Now, those regional offices have been closed, and a smaller number of central offices have opened. Those experienced in the system have lost work, and new staff have been employed. Workers no longer have a dedicated advisor, so have to go into minute detail every time they contact the AtW office. Hours can be lost to repeated phone calls - all time spent on admin that a non-disabled worker doesn't have to do. And all costing taxpayers' - our - money, as an inefficiency has been added to the system.

I have a small amount of self employed work as a printmaker. I need to go to art fairs to sell my work - just relying on internet sales isn't enough. I am medically unfit to drive, so need to take my work - including framed prints up to 60cm square - on the bus, or in taxis. I struggle to lift and carry heavy items, so need help with this.

Formerly, AtW would help with taxi costs (within reason) to get to fairs, and a support worker, to help with physical tasks I can't manage. Bear in mind this is stuff a non-disabled person could do alone. However, recently AtW are asking for proof I have a profitable business before they'll consider me eligible for support.

How many self-employed people turn a profit in the first couple of years of operation?

I am only taking the same risks that a non-disabled person might take, but to have my access costs funded, I'm being asked to prove I'm paying NI and turning a profit immediately. To do that, I need to get to fairs, to expose my work to the public. To do that, I need support to get to those fairs. To get that support to got those fairs I need to apply to AtW. And if I cover the the support myself, I'm having to earn half as much again before I turn a profit because 50% of my earnings would go on access support... You see the Catch 22?

Access to Work should be more widely available and better funded. It can really act to remove barriers to work for disabled people, and secondarily creates employment through both the infrastructure of the scheme, and through the employment of trainers, mentors, support workers and interpreters.

I strongly believe if there is any contraction in the Access to Work scheme the government is both shooting itself in the foot as fewer disabled people will be able to stay in work, and will be making yet another decision that actively worsens conditions for a group of people who already face systemic discrimination.

The government can choose to act to remove barriers to work for disabled people here. Challenging systemic discrimination should not be falling on the shoulders of those who already carry the burden both of that discrimination, and live lives that carry the challenges of impairment. As a government, you have the capability to lift that burden significantly, and not to do so is to shirk your duty. Those who have been placed in power by the country should use that power to better the lot of those with the least, and disabled people are amongst those both with the least, and who will struggle the most to change their own situations.

Ref. 1: https://www.gov.uk/government/uploads/system/uploads/attachment_data/file/49779/sayce-report.pdf

Steroid & anaesthetic injections in hips

I had steroid and anaesthetic injections in both hips just before Christmas to try and reduce the burning nerve pain I have down the outside of my legs, and to make it clearer whether the pain I have is coming from my hips or back (or both, and to make it clear what is coming from where.)

Before the procedure I was given very little information, and nothing I could find online was particularly clear or detailed. My main anxiety was down to this lack of information. I knew it was a common procedure with low complication rates, and that if it didn't help, it was unlikely to make things worse.

A friend's sister is having the same jab, but in a different place, and wanted a bit of info, so I sent the following as an email. It seemed sensible to put that here so maybe it will be useful for someone else, too.

The procedure was amazingly low discomfort - so much that I'd not worry about getting my back done, and am thinking of asking about that.

I went in early in the morning, it's counted as day surgery, but it's not done with any sedation or anything, just local anaesthetic where the injection will be done. I was allowed to eat & drink as normal beforehand.

I walked into the theatre & hopped on the table, they swabbed my hips with iodine stuff and stuck sterile drapes over my midriff, with just two holes where they needed to get to the skin. They did the anaesthetic injection which was a little stingy using a thin & not very long needle. They did a couple of jabs of anaesthetic each side, using the same syringe & needle for each. 

A portable x-ray machine had been wheeled in shortly after I lay on the table. They took a first image, and they popped the first big injection in - it was a spinal needle, so 4-5cm long or so, with a cannula around it. They took another image to check it was in the right place, then took the needle out leaving the cannula in place. Then they attached a syringe to the cannula and popped the steroid / anaesthetic mix in, checking after it was all in with another x ray.

These were lowish dose x-rays, so several in the same day isn't a problem,

At one point there was a dull pressure ache down my thigh, as the steroid went in, but the whole thing was far less painful than anything my body does to me.  Each side took about 5 minutes maximum. 

When they had finished, the peeling off of the sterile drape was the most painful part, as the adhesive part of the drape gave me a free waxing >_<

After this, I was wheeled up to recovery, then to the obs ward to have a cup of tea & biscuit, and show the nurse I could walk - which I could.

I had no increased pain at all, it was like the burning in my legs was switched off. This is a good response, and some increased pain for a couple of days can be experienced. As the local wore off, before the steroid kicked in my hips were a little grumpy, but less than they had been.

 I went to the shop I do odd shifts at for my shift straight from the hospital, sitting on  hard chair thee for about 4 hours with no more than my regular pain.

 Pain wise, it's been 2 months now and my thighs sometimes have a bit of soreness, my hips ache a bit, but it's dialled right down, and has let me get a lot more exercise. I feel like it might be starting to wear off, annoyingly, but I need to see how it goes. I've not needed my crutches since the jabs, and have been able to reduce my tramadol intake by 1/3.

Overall, it's a very straight forward procedure, and although unpleasant, is IME less unpleasant than dental work and a lot less sore than the pain of trapped nerves.

DWP Consultation on PIP assessment - Moving Around activity

This is my response to the DWP's consultation on the Moving Around activity - specifically with regard to their plan to not automatically award Enhanced Rate to people who can only walk from 21 - 50m, with or without mobility aids.

It's not amazing, but I want it to be in public so the DWP can't try and claim no one was clearly against the distance reduction. 

Someone who can only walk 21-50 metres with a mobility aid does not have enough mobility to not need considerable support to live a full and independent life. The very use of a mobility aid often makes doing some things harder. I walk with crutches – automatically this means I can’t carry more than a very small amount of shopping, for example. Whilst they mean I can walk further than I could unaided, they also create an access barrier. On balance I find them worth that inconvenience, but that barrier is still very real, with real consequences.

Given access to schemes such as Motability are based on receiving higher rate DLA, and then Enhanced Rate PIP, people who have a small amount of mobility will be severely impeded by losing access to those schemes.

The DWP itself has estimated some 90,000 people will lose their Motability eligibility – which includes the hire of powerchairs, so that really is causing people to lose their means of mobility.

Many people can’t drive precisely because of their impairment. If public transport is inaccessible to people because of distance to stops / stations, or not being able to get on trains or tubes, or buses causing pain or nausea or sensory overload, the only alternative is to take taxis. Taxis are expensive, so without access to adequate benefit payment – which Enhanced PIP would provide – taxi journeys would be out of of reach for people on Standard Rate.

If people need to use taxis to get around £20 won’t pay for more than 2 or 3 cab journeys, if you’re lucky. Which will see people who need to travel having to decide between which to travel to - GP, hospital appointments, adult education, the Jobcentre, voluntary work, - heaven forefend disabled people should want a social life and to see friends or family!

21-50 metres is not far enough to get to many bus stops, or from one’s front door to a local corner shop, or between benches on a high street.

To get to work many people – including disabled people – need to get from public transport to their place of work. For how many people is this less than 50m? I suspect not many. For me, it’s a 180m walk. Taxis can’t get to all workplaces so Access to Work isn’t necessarily going to be able to meet people’s transport assistance needs.

Supermarkets are bigger than a 21-50m walk to get around. Bus stops near supermarkets tend to be more than 20m away from the front door. The assumption that everyone has access to a car to get them to a supermarket is deeply flawed.

Many disabled people need to have shopping delivered. The cumulative delivery costs of shopping online for the bulk of one’s needs shouldn’t be a burden on disabled people. The point of benefits like DLA / PIP is to mitigate these extra costs. If it is only a small sum, there’s no way it’ll stretch to meet all of these extra costs. Someone with mobility as restricted as only being able to walk up to 50m is likely to also have trouble standing for extended periods – problems queuing are difficult to mitigate. Problems carrying shopping means often having to rely on other people to carry things for you – which if someone lacks support of people who can do this, means needing to pay people to do this.

Being unable to walk less than 50m even with an aid, should qualify someone automatically for Enhanced Rate PIP.

I will go further. Being unable to manage 100m should continue to be the distance at which it is considered someone’s mobility is considerably impaired. That is far enough to hobble to a corner shop & back, over to a post box & back, or from a bus stop to a shopping centre’s wheelchair hire office. Being effectively tied to one’s house by a piece of string 50m long (because you have to get there AND BACK) is incredibly restrictive. If that piece of string is cut down to 10m, that’s only to the garden gate. That is cruel, and is going to further restrict disabled people who are already living lives restricted by pain, fatigue and immobility.

There is a choice now with PIP. Choose to enable people living with impairments, or to further disable those people. A government that actively creates policies that worsen the lives of disabled people is inhumane and cruel.

I also want to add when I responded to the PIP criteria before, 20 metres distance was nowhere to be seen – this late addition consultation should never have been needed. Again, this adds a burden to disabled people, requiring us to repeatedly consult.

New Bus for London - an emblem of Boris Johnson's contempt for disabled people?

The New Bus for London / New Routemaster has been chugging around selected London routes, boiling its top-deck passengers and irritating me every time I see one.

I loved the old Routemasters, but I also appreciated that they'd done their job and needed to be retired. They weren't comfortable to travel on, and if you had luggage / shopping / a buggy / were a wheelchair users / had impaired mobility / long legs... etc etc they were either less than ideal or totally inaccessible.

As a bus designed from scratch, the New Bus for London could have been designed with all of London's passengers in mind. Instead it seems to be a step backwards in accessibility terms. Design choices have been made that are active barriers for some disabled people.

The wheelchair user's space has been designed with, seemingly, only smaller manual wheelchair users in mind. Handrails have been put in awkward spaces, and it's just not big enough for larger powerchair users.

The destination blinds are in white-on-black, which goes against TfL's own standards for legibility.  When I asked about this choice, I got the following response:

"Black and white blinds were chosen when designing the New Bus for London as these are in keeping with the traditions of the original iconic Routemaster bus, which partly inspired the design of the bus and its front and rear profile. They provide information in a format that is clear and legible for passengers, particularly at night when it is back lit.

As it meets legibility standards for contrast and visibility, no consultation was required" (my highlighting)

Most guidance I can find on legibility says yellow text on black provides best contrast for visually impaired readers, and the response from TfL contradicts the earlier information on TfL's legibility standards.

To me, this seems like a backsliding of access provision - a choice of style over readability for a wider group of people, and as such is a discriminatory choice.

This, combined with the decisions around the space for wheelchair users being less than ideal (and again, worse than existing spaces on other buses) makes me feel like the design team for this bus and Boris Johnson as the figurehead of this project, don't care about disabled people being able to travel around London, and are happy to actively place barriers in people's way.

How do Tories actually "help the most vulnerable in society"

The Independent Living Fund was a scheme whereby people with high levels of care needs were enabled to live independently, in their own homes rather than in residential care, through personal care being funded from central government.

Local councils have a responsibility to provide care for residents who have care needs, but in reality many councils are rationing this care and only providing it to those in the most desperate need - and then, only providing the minimum required. So someone who isn't incontinent, for example, may be put in nappies overnight rather than fund a personal assistant to assist that person with toileting.

Some councils are also looking at putting people into residential care if it would be cheaper to care for them there rather than in the community. (http://www.worcesterstandard.co.uk/2013/01/01/news-Legal-challenge-over-council%27s-care-cap-59039.html) The ILF has previously been used to top up people's care funding meaning disabled people could continue to live in the community.

Yes, it is councils' responsibility to provide social care, but the Coalition knows councils have shrinking budgets - they're the government providing those bloody shrinking budgets to the councils! All they're doing is going "Not my problem" about everything, and shoving it all onto other people's budgets.

I think the Tories hide behind "localism", and know people will suffer as tasks fall to different regions to legislate, when dealing with some things nationally is realistically the only way to ensure fair access to those things.

There are many people supported by the ILF - one woman is someone I know through work, Sophie Partridge, who has put a video together voicing her concerns.




Further discussions with people affected by closure of ILF: http://falseeconomy.org.uk/blog/people-affected-by-the-closure-of-the-independent-living-fund

The Independent Living Fund really did support some of those the Tories refer to as "the most vulnerable in society", people with incredibly complex care needs, who need 24 hour support. The Tories have closed it, and councils will be expected to pick up the tab, but the money is just not there.

How is this "supporting the most vulnerable"? As far as I can see it's just making those "most vulnerable" not their problem, passing the buck, handing over responsibility, and ultimately not giving a toss as long as their bottom line isn't affected.

Here is a letter from the DWP about the closure of the ILF:

"Thank you for your recent correspondence, raising issues arising from Government policies which are the responsibility of this Department. Government Ministers receive a large volume of correspondence and they are unable to reply personally on every occasion. I have been asked to respond to some of your points.

There are just over 19, 000 ILF users. There are approximately 13,000 users in England, 3,000 in Scotland, 2,000 in Wales and 750 in Northern Ireland. The average weekly ILF payment is £347. The most common use of ILF funding is to pay for personal assistants.

There are approximately 3,000 Group 1 users (joined pre-1993). While many Group 1 users receive some support from their local authority, this input is not part of their ILF eligibility criteria. There are approximately 16,000 Group 2 users (joined in or after 1993). Group 2 users have care packages which include a minimum contribution of £200 per week from their local authority.

94% of ILF users receive support from both the ILF and the local authority. Around 41% of these users receive direct payments from both the ILF and their local authority but under different eligibility and charging functions. Around 1, 200 ILF users do not have a known local authority contribution to their care package.

Having carefully considered all the responses to the consultation, the Government believes that closing the ILF in 2015, with funding devolved to local government in England and the devolved administrations in Scotland and Wales, is the best way forward. The significant changes in the wider system of care and support for disabled people mean that the care and support needs of current ILF users can, and should, be met within a single cohesive system. It is not justifiable to continue to support those disabled people who were ILF users when the fund closed to new applications, in a different way from other disabled people with similar needs. I can reassure ILF users that the Government remains fully committed to maintaining current ILF user’s care packages up to April 2015.

We believe that individual local authorities are best placed to provide locally tailored funding and services integrated around individuals’ needs through direct payments and personal budgets. Local Authorities already have a statutory responsibility to assess and fund the care needs of all disabled people – those who have been ILF users and those who have not. Over 18,000 existing ILF users already receive expert assessment and a contribution to their care funding through their Local Authority and discretionary ILF payments and have never taken precedence over this. However, operating the ILF in addition to the mainstream care and support system has duplicated functions and created unnecessary bureaucracy for both users and local authorities."

I don't find that letter satisfactory. It offers absolutely no assurance that people will continue to get the support they need to continue to live their own lives as we all have the right to.