National Disability Smorgasbord

 

The concept was utterly brilliant.   A perfect political move: a strategy targeting over 14 million people, a fifth of the population, of whom the vast majority are voters.

And it goes on giving: With hospital waiting lists already topping 5 million and forecast to reach 14 million, there’s potential to double that disabled constituency.   Just ask someone like Peter who’s been waiting two years for a hip replacement: constant pain, can hardly walk, had to give up work, income crashed.   With 40% of the population to play for, it’s no wonder that politicians and public servants are aiming to up their game (Command paper 512 Published 28 July 2021).

How does this new National Disability Strategy measure up?   Surely everyone can applaud the broad ambitions buried away in Part 2 of this long document:

  1. Ensure fairness and equality – we will empower disabled people by promoting fairness and equality in opportunities, outcomes and experiences, including work.
  2. Consider disability from the start – we will embed inclusive and accessible approaches and services to avoid creating disabling experiences from the outset.
  3. Support independent living – we will actively encourage initiatives that support all disabled people to have choice and control in life.
  4. Increase participation – we will enable greater inclusion of a diverse disabled population in the development and delivery of services, products and policies.
  5. Deliver joined up responses – we will work across organisational boundaries and improve data and evidence to better understand and respond to complex issues that affect disabled people.”

 

So good so far and, sometime, someone will hopefully provide the baseline and target data so we can actually measure performance against all those stirringly impressive goals.   But there’s another wrinkle: surely the Equality Act has already had 10 years to achieve pretty much the same?   It may be too optimistic to expect a mere ”strategy” to do better when it doesn’t have the muscle of legislation or the alleged enforcement role of the EHRC.

Step forward Part 3 to provide that essential accountability muscle: hapless Ministers making personal commitments for their respective Departmental actions.   Presumably, each time there’s a reshuffle, new faces and names will simply replace them.   Perhaps it would be a good idea to include the top mandarins too as they might have more longevity?

It seems curmudgeonly to look this gift horse in the mouth by asking if the commitments of Government Departments tackle the most important challenges facing disabled people.   The original strategy concept seemed so brilliant, but the end-product gives the overwhelming impression of civil servants desperately cobbling together actions that were already underway or would cost little or nothing in the future.   For example, extending jury service to Deaf people is certainly overdue but where’s the data and commitment to reducing the wholly disproportionate number of prisoners with mental health conditions.   Both are important but probably don’t have the same impact on society and fairness.   Likewise, there are huge gaps in the “strategy”: The Treasury doesn’t feature so presumably there’s no link between financial or tax policy and fairness; likewise, that massive NHS waiting list and its potential to double the disabled population doesn’t merit a mention.

The strategy is like that weary buffet after someone has taken all the choice cuts: an unappetising mismatched miscellany of scraps.   If this brilliant concept is to realise its political potential, Government needs to go back to the drawing board: ask Departments to share the data about where their current policies, practices and procedures have the most negative impact on fairness and equality for disabled people and then tell us what they are going to do about it.   We want dates, data and targets that will prove that there has been real progress plus the carrots and sticks to motivate them.   Meanwhile, this disabled person isn’t holding her breath for any significant change and just wishes that Government acknowledged that equality law applies to them too: leading the way would encourage the rest of society to do better too.

 

(P.S.   It’s taken me longer than hoped to read the strategy: the “Special” Policy Adviser in the Cabinet Office didn’t really understand what accessibility means in relation to blind people – say no more)

 

 

Filled with despair

Stand by for a toot!

I’ve been working in the disability field with Government Departments, businesses and employers, charities and more for over 20 years but feel an utter failure as the battle for fairness seems harder than ever.

A bit of history: more than quarter of a century ago in 1995, there was the Disability Discrimination Act that placed legal duties on all sorts of bodies to make reasonable adjustments.   In 2010, the Equality Act was more specific about requiring all those public, private and voluntary sector organisations to make information available in alternative, accessible formats.   But we are still banging our heads against this brick wall and the most awful ignorance and prejudice.

This is the sort of stuff I face in just one week:

* One new disability charity wanted a quote for their leaflet.   Not only did they want to define me by my disability rather than my professional activities, they had the temerity to re-write the quote into the most ghastly mediocre and mundane words alongside factual errors.   I stepped back from it all.

* Another charity was trying to set up on-line links between visually impaired people.   It all fell apart as their hierarchy had decreed use of a notoriously inaccessible on-line conferencing system.   Pity their procurement team were so completely ignorant of the law, their beneficiaries, their needs and accessible technology.   One wonders how they manage to operate at all.

* I was asked to take part in some research into disability and employment, but the consent form wasn’t accessible.   It is (nearly) laughable to ask blind people to tick or initial boxes.   Even if I could, how would I know which side of the paper to scan and send back to them?   My solution was to write a statement confirming I’d read everything, gave my consent and an electronic signature.   But not good enough for their ethics committee.   Their solution: they’d send a hard copy.   Did they think I’d miraculously recover my sight?   When ethics are so blinkered about reality, I wonder whether they have any credibility at all?

* An environmental charity was seeking membership and donations.   I would have been interested had they been able to provide information in some accessible way – a simple Word document attached to an e-mail (how quick, simple and cheap is that?).   But all too difficult.   Yet they claim to have an “equality and diversity specialist”.   Pitiful.

* I wanted to get more involved in the sous-chef’s beekeeping but, once again, the national association doesn’t provide information in a format I can read.   Their response: they are “actively” pursuing a solution – it has already taken them 11 years not to succeed so I’m not holding my breath.

Most of this is probably less important and little skin off my nose but restricts how I can take part in the life that others enjoy.

But it becomes more crucial elsewhere.   Take health for an example.   Years ago, the (then) Chief Medical Officer reported that blind people have more health problems than others.   One reason is not difficult to find: the NHS is still appalling at making adjustments for people who can’t see.   Telling our GPs about our needs doesn’t make any difference.   Imagine the fun and games of opening a package with all sorts of paraphernalia.   Eventually, I discover it is a bowel cancer test kit.   I leave it to your imagination as to how blind people can manage to use it, complete any paperwork and return it.

In the midst of this pandemic, resorting to on-line “E-consult” seems to be the only way to get some health care.   How do we do that when we can’t see the screen?

Making information and communications available to everyone isn’t just about equality and fairness, it becomes a matter of life and death.

If you are involved in sending out information: a simple Word attachment without fancy layouts, logos etc is quick and easy – or just paste it into an e-mail.   Done and dusted: legal and fair.

Cath from Blind Veterans contributed the ginger cake featured on the latest on-line live baking session https://youtu.be/myfVZVzVflU

.   We were all rather concerned that the mix was too wet, cooking in the microwave was too risky and that it just wasn’t done.   But her 9-minute cake turned out beautifully.   The trick is to have faith in the timing and accept that it will continue to cook while resting.

It is not a cake that is going to last as it gets somewhat dry after a couple of days.   I treated mine more like a pudding: cooked in a silicone ring mould which left the perfect opening for accompanying pear slices gently cooked with crystallised ginger plus the reduced poaching liquid.

145g milk.

115g butter.

85g syrup and treacle (about 2 tablespoons of each).

85g brown sugar.

115g self-raising flour.

1 teaspoon bicarbonate of soda.

1 teaspoon mixed spice.

2 level tablespoons ground ginger.

Pinch of salt.

2 eggs, beaten.

 

Gently heat the milk, butter, syrup, treacle and sugar until warm and the sugar has dissolved either in a pan or the microwave.

Mix all the dry ingredients in a bowl (I used a hand whisk).

Add the heated ingredients and mix in.

Add the eggs and mix well.

Pour into a microwave-proof ring container that has been lightly buttered and floured.

Cook on High Power for 9 minutes.

The cake should feel barely done: soft and spongy but will get firmer as it rests and cools before turning out.

 

 

 

 

 

 

 

 

Hot Stuff

What Government organisation interacts with just about every disabled person in the country and should be leading the field on accessibility etc?

Give up? It is our National Health Service and you may already have heard the reports that disabled people are disproportionately dying from Covid.  Set aside the arguments about priorities for vaccinations and just consider the mechanics of actually getting one.  For me, our glorious NHS stumbled at the first fence: is there any point sending a printed letter to a blind person?  Years ago, I’d done as requested and told them how I need information but it was clearly barking at the moon.  I realise that I could have waited for contact from my GP but hadn’t had a peep after four days.

Luckily, I had someone around who I could trust to read my mail, take me to the appointment, guide me through the various stages and get me back.  But I suspect that there are many others who don’t even know that they’ve been counted towards the target as having been “offered” a vaccination, let alone been able to get it. OK: rant over.

These samosas filled with lightly-curried vegetables follow the theme of eating lots of different plant-based foods – and are also a good way of using anything left over at the end of the week.

 

1 tablespoon oil.

1 onion, peeled and diced.

2 portions GGG.

2 rounded teaspoons garam masala.

1 teaspoon each cumin and coriander powder.

Half a teaspoon each of turmeric, chilli and paprika powders.

A mix of vegetables cut according to their hardness – carrots small, mushrooms larger.

About 6 tablespoons water

2 rounded soup spoons coconut powder.

12 sheets filo pastry, cut in half lengthwise.

Oil for brushing/spraying.

Sesame seeds to finish.

 

Gently sauté the onion and GGG in the oil until softened.

Add the curry powders and heat until they smell spicy.

Add the hardest vegetables, followed by the remainder after a minute or two.

Add the water and stir to remove any of the curry powder on the bottom of the pan.

Cover and cook over a gentle heat:  the vegetables on the base will be heated while the remainder steam.

When the vegetables are just softened, stir in the coconut powder and remove from the heat.  Replace the lid and allow to cool (perhaps overnight in the fridge).

Cut the filo pastry in half lengthwise and keep covered with a damp tea towel while making up the samosas.

Brush a strip of filo with a little oil.

Place a spoonful of the vegetable mix at one end of the strip – in a little and on the right-hand side.  Fold the left-hand corner over the filling to create the basic triangle shape.

Fold the triangle away from you, then to the left, away from you again.

You will probably have got nearly to the end of the filo strip so fold over the last pieces, brush with a little oil and dip one side in sesame seeds before placing on a parchment paper lined baking sheet.

Cook for 10 minutes Gas 4 and then turn over to crisp the underside.

 

If you don’t have a whole range of ground spices, just the garam masala or a curry paste/mix will do as well.

I used: 2 carrots, 1 sweet potato, 12 French beans, 12 sugar snap peas, 1 red pepper, thinly-sliced broccoli stalks, 2 tomatoes, 5 mushrooms, 1 courgette – whatever you have available – and had some filling left-over.

GGG is ginger, garlic and green chillies (de-seeded) in weight proportions of 8:4:2.  Roughly chop and then reduce to a rough paste in a food processor.  Divide into teaspoon portions and freeze ready for future curries (Indian, Thai, Sri Lankan etc).

These are quite fragile crisp hot parcels with a moist but not runny filling.  They need something “wetter” served with them – perhaps a yoghurt raita or we have delicious home-made and home-grown tomato chilli jam.

https://www.eventbrite.co.uk/e/baking-with-penny-for-visually-impaired-blind-people-tickets-141946530895?ref=eios

 

NHS catches up with equality legislation.

What do you think:

  • Does your GP or hospital always give you information that you can read and understand?
  • If not, does it mean that you miss out on appointments, treatment, care or health checks?
  • Does your health suffer?

It has taken the NHS 21 years, some significant disasters in care and its own internal Standard to take the law seriously: providing accessible information and communications as originally laid down in the Disability Discrimination Act (1995) and then strengthened by the Equality Act (2010).

Back in 2014, the Chief Medical Officer reported on the poor health outcomes for people with sensory impairments:  in addition to increased prospects of dementia or Alzheimer’s disease, people with blindness or deafness are more likely to have other long-term health conditions, anxiety or stress and have less confidence in managing our health.  I wrote to her and blogged suggesting that our difficulties in getting information from the NHS was probably a significant contributory factor because our contacts with medical care are fewer and probably less successful.

Now the NHS has introduced a new Standard aimed at those involved in health care and adult social care to change how they treat patients, service users, carers and parents, where their information and communication support needs relate to a disability, impairment or sensory loss.

If you have information or communication needs (or look after someone who does):

  • tell your GP practice manager (ideally in writing) and;
  • give them permission to share your requirements with others in the NHS or adult social care (which saves you from repeating it).

Then they should flag your records and take action to meet your needs.

Act Now:  The more of us who ask, the better they should become and then we have more chance of better health in the future.

 

Penny Melville-Brown OBE

Disability Dynamics ltd www.disabilitydynamics.co.uk

Helping disabled people to work since 2000

Equality for disabled people

What do you think? • Have 5 years of the Equality Act made any difference for disabled people? • Will House of Lords review of equality legislation make any improvement for disabled people? • Do disabled people face systemic and institutionalised discrimination?

There has been a recent call for evidence from The House of Lords Select Committee on the Equality Act 2010 and Disability as part of their review of whether the legislation is working for disabled people.   Drawing on previous blogs over a couple of years, I sent them the following comments – and couldn’t hope to cover all the other areas in which we still aren’t getting an equal chance.

Without doubt, five years of legislation have had limited positive benefit for disabled people and, in some ways, their situation is probably worse.  This is particularly true in relation to the failings of the Public Sector Equality Duties. The Government initiative to enable disabled people to fulfil their potential and have equality of opportunity by 2025 has become a creature of smoke and mirrors, shackled by austerity cuts, deaf to the legislation’s demands during policy creation and blinkered to it’s requirements in delivery.  The generous amongst us may believe these failings are simply oversights of lazy, broad-brush policy thinkers whereas the more cynical may perceive systemic and institutionalised discrimination emanating from the very heart of the nation’s public sector.  Would other laws be flouted so blatantly?  How can we possibly hope that employers, businesses and others will comply and make a difference when it is so obvious that the public sector does not?

 Perhaps the answer is really simple?  The majority of “disabled” people (about two thirds of us according to the Office for Disability Issues research) wouldn’t use this label about themselves.   So we are very unlikely to have any homogenous coordinated political voice.  Would another 20% of the electorate be ignored so consistently?

 One wonders how these public policies, practices and procedures will be squared with the protection afforded by the UN Convention on the Rights of Disabled People when the UK’s performance is next reviewed.

 Just a few examples of issues that have been publicly evidenced over recent years:

Life chances:

  • Prisoners.  The 2014 Ministry of Justice report was lamentable (out-of-date data and disability definitions) but did reveal that the proportion of prisoners with limiting long-term health conditions was about twice that in the general population.  Does this mean that, as a nation, we manage some impairments through the criminal justice system or does the system itself create those impairments – or both?  We are probably unimpressed by other nations that imprison disproportionate numbers of those from, say, ethnic minorities but seem to barely raise an eyebrow at similarly skewed outcomes of our home-grown justice system.
  • Bedroom Tax.  There is a disproportionately higher level of disabled people in social housing.  They are more likely to be receiving housing benefits.  It is good news that there has been more flexibility in waiving “bedroom tax” for those disabled people who need extra space for their impairment-related equipment.    But how were their needs considered when the policy was created and the rules designed?
  • Disproportionately poor health outcomes.  The Chief Medical Officer’s 2014 report highlighted that people with visual (like me) or hearing impairments are more likely to acquire dementia, Alzheimer’s disease, other long-term health conditions, anxiety or stress and have less confidence in managing our health.    Yet suggestions to her that a key issue is the failure of the health sector to communicate effectively with us using alternative formats, auxiliary aids etc received just the response that Equality Act compliance rests with individual health providers.  So where is the leadership and policy drive to redress the situation and implement the legislation?  The consequences are not just discriminatory but life threatening.

Employment issues.  My primary interest area:

  • Increased age requirements for State pensions.  Expecting people to work longer before they can claim their state Retirement Pension goes hand-in-hand with an ageing population.  But does all the supporting policy make this feasible for that majority of disabled people who acquire their impairments during their working lives (some 70% according to DWP).  It is very well known that propensity for disability increases with age (under 5% of those starting their careers which more than quadruples to 23% of those approaching retirement).  So, let’s have the policy but make sure that it works in reality by tailoring and delivering employment legislation, practices and support accordingly rather than jeopardising the livelihoods of even more people with impairments.
  • Work Programme and Work Choice.  The original concept was good: help people to get back to work.    But it needed much more attention to practical realities to avoid disproportionate outcomes for disabled people.  Instead, flawed funding models, poor contract management and insufficient specialist delivery has left those facing most work barriers still on the shelf.  Overall, it looks as if the improvement in the economy is probably the biggest factor in the employability of jobseekers whereas publicly-funded employment support has more potential impact amongst disabled benefit claimants.  But this depends on good delivery: holistic, individual, specialist, tailored, flexible, local with all adjustments in place and empathetic, experienced front-line teams – so quite different from much current delivery.
  • Employment and Support Allowance, Work capability Assessments and Access To Work (ESA, WCA and ATW).  These should be the three pillars that help disabled people get back to work.  But a 2014 Select Committee report described WCA as de-humanising and distressing, stressful, confusing, uncertainty and more.  Another Select Committee report the same year was similarly highly critical of the ATW system for providing in-work support for disabled people and said it required substantial improvement (and those self-employed have had a particularly hard time).   So, with two legs buckling if not actually broken, are the policies properly in place to give us equality of opportunity?  Instead, it seems that unlawful discrimination and harassment are endemic in the delivery systems.
  • New Enterprise Allowance.  Where is the evidence that the policy design and delivery detail for this initiative took account of the needs of disabled people?    It should have been a basic consideration that then merited even higher attention because disabled people are the largest and most costly group of unemployed people and, as shown by the 2011 Census, those who work are more likely to be self-employed than their non-disabled peers.  Of course, some disabled entrepreneurs will have survived the judgemental processes and inadequate timescales but was the real potential of the initiative fully realised?  We receive phone calls and e-mails from across the UK each time one of our new disabled business owners is featured by the BBC –showing that the demand is there but the NEA is not hitting the mark.

Return to the old box-ticking equality impact assessment processes would just risk resistance to bureaucratic red tape.  But we know that one-size doesn’t fit all.  Instead those creating and delivering public policies need to undertake more robust success and risk impact assessments that address equality issues.  Where citizens with protected characteristics such as disability will be most affected by a policy, those characteristics need to be at the heart of decision making and delivery design in order to be successful.  “Most affected” means that disabled people (or other protected groups) may experience positive or negative consequences at disproportionately higher levels in relation to either/both the overall population or individual impact.

There is an untapped resource of experts with practical experience who can contribute to shared goals alongside those in the Government Departments that most affect disabled people.  Utilising them offers more chance of getting policy and delivery right from the outset rather than years of subsequent criticism and costly change.

Current enforcement seems patchy at best and very difficult for individuals to access.  While there is scope for improving enforcement, it is highly preferable for those in the public sector to be better motivated from the outset by recognising that effective consideration of disability issues will improve the success of their policies.  More carrot than stick!

Penny Melville-Brown

Disability Dynamics ltd www.disabilitydynamics.co.uk

Helping disabled people to work since 2000