It's two years now since I was diagnosed with Ehlers Danlos syndrome and Postural Orthostatic Tachycardia and officially became one of the millions of people, young and old, who live with a disability. It's given me an interesting perspective to see the world both as a parent of children with special needs and from that of a disabled person myself. And I can see what is to come for them from a very personal perspective.
I know all about the difficulties experienced in the National Health Service: Because of the severe shortage in autonomic specialists in the UK, I'm still waiting for my NHS follow-up appointment for the autonomic testing that I had last July so that I can get more appropriate medication. My appointment is in May, just after the election. At first I thought there had been a mistake with the appointment date, but apparently not. A 10 month wait for the results of your tests is quite normal in this area.
And I have to admit, it's very, very depressing. I veer between being accepting of my reduced mobility, extreme fatigue and constant pain, to being plain, bloody suicidal. The latter state is more frequent than the former. Don't be shocked, just imagine you're me and you'll see what I mean. Only the knowledge that my boys need me, whether I'm in a partially useless state or not, keeps me breathing.
Every new indignity is like a sledge hammer. The recent loss of a friend hit harder than I could have imagined. Fighting battles for my son to get him the necessary GCSE scheduling concessions feels like I'm scaling Everest - with low blood pressure and in a wheelchair. And to add insult to injury, now the warm weather is back, so is the debilitating, dehydrating perspiration courtesy of being unable to control my body temperature.
But it's not just my own health condition that depresses me. Looking up from my own self-pity brings me face to face with the way the Coalition government has continually put the boot in to the vulnerable, particularly my fellow people with disabilities, while spinning it to look like the very thing that will save Britain's economy for "hard working families."
A Manifesto for Disabled People.
With this in mind, I was very interested when an email pinged into my inbox from The Surrey Coalition about the South East Network of Disabled People's Organisations containing their "Disability Manifesto - What disabled people want from our political parties."
Arriving of course in the week that the political parties launch their own manifestos, it was interesting to note the Twitter hashtag that SENDPO has adopted:
Yes indeedy, 12 million votes ready to be cast by disabled people young and old for whoever they want. For many, it will be their first time being old enough to vote.* According to BBC Ouch, that's 20% of the voting age population.
I wonder how many of those people will be heading the Tories and LibDems way after the last five years have shown just what the coalition thinks of disabled people and those with long term medical conditions.
I won't go into the rhetoric - we all know of the shockingly avoidable deaths, the veiled vilification, the hate crime, that has been fuelled by a weasly undercurrent in certain right-leaning news outlets that people with on benefits or disabilities are the very opposite of those "hard working people". See this excellent article by David Blunkett for more on this issue.
Disability is not another word for work-shy and those who can do go to work full or part-time, or have their own businesses and many more would if there was work available that they could access. But over the last five years it has become harder than ever to thrive or, in some cases, exist, through ill-thought out or punitive welfare "reforms" and £8 billion in cuts to vital social care.
And for young people? Social Care cuts affect them too. Meanwhile, working hard and getting to university will mean you miss out on an Education, Health and Care Plan that disabled, (paid) apprentices can have and students also have cuts to Disabled Students' Allowance on the horizon as well.
So what is in SENDPO's Disability Manifesto?
The SENDPO Manifesto is not a partisan document, it is a setting out of what is important to people with disabilities and a list of issues that all political parties should take note of if they want to secure the votes of the 12 million people at the ballot box on May 7th. Never has my vote felt more important. (For reference, I live in Health Secretary, Jeremy Hunt's constituency.)
The very first item is, in fact about employment and if you have a son or daughter about to leave school, this will be of major concern to you:
- We call on all political parties to commit to halving the employment gap for Disabled People over the course of the next Parliament.
- We call on all political parties to commit to doubling the number of Disabled People benefiting from Access to Work support in the next 3 years.
Access to Work is the scheme that funds reasonable adjustments and special equipment in the workplace as well as help and support to enable disabled people to be successful in the workplace. It has recently been both extended and cut - work that one out. If your young person is disabled and in the job market, this is something you should be looking into with them.
On welfare reform, the manifesto says:
- We call on all political parties to commit to undertaking – at the earliest opportunity – a cumulative impact assessment of the impact of welfare reform, changes to social care funding and eligibility criteria and the closure of the ILF on Disabled People. All further cuts to welfare benefits for Disabled People should be put on hold until this has been completed.
Well, quite. In fact, something I have noticed in the SEND reform changes is that rushing things through for political reasons is something of a theme in Westminster. What a jolly good idea, let's do it. Right now!
It's a shoot first, ask questions later, approach that this government seems to have repeatedly embraced without stopping to evaluate if, or how well, their approach has worked until the casualties start to mount up. Literally, in some cases.
On Social Care:
- We call on all political parties to commit to extending the timetable for reductions to local government budgets. This would give councils time to reconfigure services and develop more preventative support, allowing them to deliver services more cheaply while still protecting people who are most in need.
- We also call on all political parties to commit to increase the funding for social care in line with the EU average as soon as public finances allow. Spending on social care in Britain currently lags well behind, at just 0.9% of GDP, compared to an average of 2% in comparable EU countries.
- We also call on all political parties to commit to reinstate the Independent Living Fund – which currently supports over 19,000 Disabled People with the highest needs to live independently. In the interim, we also call on all political parties to ensure that the budget that has been devolved to local authorities is ring-fenced to ensure it is not absorbed into general council budgets.
The ILF abolition has been fiercely opposed by disabled people's groups and its closure, slated for June barring a last ditch intervention, is likely to severely impact the ability of many to live independent lives. What will happen to our young people when it's time for them to attempt an independent life without this support?
On the NHS
- We call on all political parties to commit to eliminating health inequalities faced by Disabled People by 2025. This is a challenging target but one that can be achieved if the will is there to do so.
- We also call on all political parties to commit to ensuring that Disabled People are able to access NHS services on an equal basis as everyone else.
On Education, my particular area, the manifesto says:
- We call on all political parties to commit to reducing the gap in educational outcomes for Disabled school leavers and achieving parity of access to further or higher education for Disabled People by 2025. This is a challenging target but one that can be achieved, if the will is there to do so.
- We also call on all political parties to commit to delivering a fully inclusive education system with a range of mainstream and specialist provision to meet the needs of all Deaf and Disabled students.
- We call on all political parties to promote a more constructive and inclusive approach to immigration, which recognises the social and economic benefits of immigration and cultural diversity.
So many disabled people have found themselves being unfairly penalised by the Bedroom Tax and losing Housing Benefit because an extra bedroom is perhaps needed for equipment or for carers or because the disabled child cannot share a bedroom with siblings.
The manifesto says:
- We call on all political parties to introduce legislation in the next Parliament to require all new housing developments to be built to lifetime home standards, with at least 10% of new housing to be fully wheelchair accessible.
- We also call on all political parties to urgently amend the rules on Housing Benefit under occupancy deductions to prevent Housing Benefit being cut for Disabled People who have a legitimate need for a second bedroom.
Transport is another area of difficulty for me and for many families. It takes courage when you or your child has a disability, to even step outside your front door.
Public transport, especially the Tube, is a nightmare. For me and of course for families who have a child who needs a wheelchair or who is claustrophobic for example. If you've lost your Motability car in the changeover to Personal Independence Payment, however, you just have to struggle on.
- We call on all political parties to commit to an urgent review of the effectiveness of legislation and public initiatives aimed at improving access to transport (including bus, rail, taxi and transport by air and sea) for Disabled People and to set out what steps they will take in Government to ensure compliance with the UK’s obligations on accessible transport under the UN Convention on the Rights of Disabled Persons.
On Law and Order:
As mentioned, disability hate crime is a huge concern and the cuts in Legal Aid creates a barrier to justice for those on low incomes who can no longer qualify for financial help:
- We call on all political parties to set out the steps they would take in Government to improve access to the legal system for all Disabled People.
- We also call on all political parties to set out what steps they would take in Government to improve the reporting and prosecution of disability-related Hate Crime and to tackle disability-related harassment and bullying in schools.
On Political Participation
- We call on all parties to make a firm commitment to ensure that all of their campaign meetings and election materials are accessible to Disabled People during the forthcoming election.
- We also call on the Government to guarantee that all polling stations will be accessible so that no Disabled Person who wishes to vote is prevented from exercising their democratic right.
Finally on the UN Convention on the Rights of Persons with Disabilities:
The latest independent monitoring report on Implementation of the UN Convention on the Rights of Persons with Disabilities (UNCRPD) highlights a number of areas of where the UK is failing to meet its Convention obligations.
- We call on all political parties to state a firm commitment to ensuring full compliance with the UK’s obligations under the UNCRPD and to set out what steps they will take in Government to address those areas where the UK is not fully compliant.
Although this manifesto is published by a group of disabled people's organisations in the South East of England, the issues are national. Perhaps you know of a similar group in your own area.
Ask your prospective candidates what their plans are to support disabled people. Because whether it is you or your children who have a disability - or as in our case, both, you have an opportunity to send a message to Westminster.
*Are you and your adult children registered to vote?
Are you registered to vote? If you've recently moved house, make sure you're on the electoral register for your area or you will be disenfranchised. If your son or daughter is 18 or over, make sure they are registered to vote where they will be on election day or look into a postal vote or a vote by proxy.
You can register online but you only have until April 20th, which isn't very long, to get it done. Do it today.
- Download the whole SENDPO manifesto here (PDF)
- These are the electoral rules to enable disabled people to vote
- The Daily Mirror's Operation Disabled Vote campaign
- Mencap's Information about voting in Easy Read style
- Why do disabled people feel ignored when it comes to voting?
What do you think of these ideas - and do you have some of your own to share? Is your 18+ disabled son or daughter registered to vote?
- Ombudsman report says councils are “standing in the way of support” by failing to offer personal budgets during the EHCP process - November 24, 2023
- 10 reasons the Change Programme might fail, by experts from across the SEND sector - October 27, 2023
- For children with SEND and their parents, a compassionate teacher is key - October 20, 2023