Working out what support is available to you if you’re disabled can be difficult. Where should you turn and what are you entitled to? Simon Sansome, who became disabled in later life, believes councils should have disability officers, not just social workers, to help disabled people navigate the complicated system.
Being a newly disabled person can be a daunting experience. Not only does your entire life need to be overhauled, but there are no instructions and little or no knowledge of what help is available.
The current system for helping disabled people is complicated and messy. Because of this, people with newly acquired disabilities often lose out on the support that they urgently require and are entitled to.
In 2014, at the age of 32, I suffered a life-changing injury – spinal damage. Today, I live a full and active life as a disabled journalist. But it took me years to fully understand the system and how to get help.
Having previously worked for many years in adult social care, you’d have thought that I’d be an expert in the field of disability and mental health services. But, until it actually happens to you, you’re pretty much unaware of how the system really works for disabled people or how complicated it is.
For example, if you’re in a council house, you’ll have one number to call for the housing office. If you have a council tax problem, there’s just one number. If there is an emergency, there is an emergency response number. So why, after losing the full use of my legs, did I have to arrange interviews and phone calls with 15 different organisations to get things sorted?
Questions when you’re newly disabled
Here are just some of the questions that come to light when a person goes from being fully mobile to disabled.
- Am I still going to be able to work and, if so, how am I going to get there?
- How am I going to get washed and dressed in the mornings?
- Who is going to pay for my carers if I can no longer work?
- How am I going to pay my mortgage and bills?
- How am I going to get in and out of my house?
- What adaptations am I going to need for my house?
- Will I be able to cope mentally and physically?
- How will I look after my children?
- Will I be able to drive?
- What assistance will I get with benefits?
- What effect is it going to have on my family and partner?
The list is seemingly endless, and finding the answer isn’t simple. Some help comes from local authorities, other from the central government, and then there are a number of different organisations. So how do you know where to turn?
I had to learn the hard way what to do and who to contact, so I am always keen to pass on my knowledge in the hopes that it’ll help someone else in a similar situation. However, I shouldn’t have to.
Where to turn if you’re newly disabled
Carers and home adaptions – dealing with your local authority
Inevitable, if you become disabled, you’re likely to need carers. But how will you pay for them? To find out how much help you’ll get vs how much you’ll need to contribute yourself, you’ll be financially assessed by your local authority.
But carer assessments across the country are undervalued and underused, and they differ from one local authority to another. For example, our council pays £250 a year toward the cost of a carer (which is an insult as it is), while some offer nothing.
The local authority should also arrange home adaptations for you – such as handrails, toilet seats, bed alterations, raised chairs etc – and equipment, including kettle tippers, specially adapted cutlery, large remote controls, large clocks, and electronic medication dispensers. It’ll decide what you need by doing an Occupational Health assessment.
This should all be sorted out whilst you’re in hospital, so be in place when you’re discharged. If that isn’t possible, it should set up short-term alternative accommodation, again, before you leave hospital. In addition, your local authority should also organise any further adaptions you discover you need after going home.
Local authorities will also reduce your council tax band if you use a wheelchair indoors, or have an extra room for medical purposes. Speak to your local council tax department for further information as this as it will vary by local authorities.
PIP assessments – contacting central government
It’s when you come to needing to contact central government where things get really complicated. My injury meant that I couldn’t drive a standard car anymore, so had to get one adapted. Because they’re so expensive – as is most disability-related equipment – I needed to had to have a PIP assessment (Personal Independence Payment) to get help to pay toward it.
It can take up to two months for someone to come and assess your needs, and it can then take as long as eight weeks for any payment to start. This is far too long for anyone to wait, especially considering being newly disabled incurs a number of very expensive payouts for equipment, carers, taxis etc.
My PIP assessment took even longer as I had to appeal it. Thankfully the appeal was upheld, so I got what I needed, eventually. You can find out how it went by reading my PIP assessment blog post.
At the time of acquiring my disability, I knew nothing about the Motability Scheme. I had no idea that I could get my car adapted so that my scooter could be lifted into the boot. I also didn’t know that it was possible to get hand controls so that I could drive again. I had entered a world that was completely alien to me.
I struggled for months with taxis and lifts from friends and family until I was made aware of the scheme via a community chat group I had joined.
To be eligible for the Motability Scheme, you need to have a Blue Badge and a letter from your doctor to say you are disabled. Again, this can all be done through your local authority. Getting the car was actually quick and easy, although the adaptations took time.
The wait was definitely worth it – it’s changed my life. So why did nobody officially tell me about it? I had to find it out for myself.
Access to Work
Once I started to get my life back on track as best I could, I applied for Jobseekers Allowance, which I knew about, until I found a job. This is paid by central government, rather than your local authority. WAS THIS EASY TO SORT OUT? There is also Employment and Support Allowance if you’re unable to look for work.
What I didn’t know about was Access to Work. It is available for any business employing a person with a disability. So if, for example, someone needs taxis to get to work, or a ramp to access the office, Access to Work will pay for it. This applies to physical disabilities and mental health issues.
But I was told nothing of how it works when applying for a job, by anyone. Knowing what help I could have had, and therefore what jobs I could have applied for, would have been extremely useful.
Multiple organisations and the mental strain
In one fell swoop, you’re suddenly having to deal with a mountain of things – carer assessments, adaptations being made to my home, applying for financial assistance, getting Motability sorted, having a PIP assessment, applying for Access to Work, getting a reduction on your council tax – all while coming to terms with being disabled. It is all incredibly mentally draining, not only for you, but also for your family.
The system is far too complicated, and a newly disabled person just needs a little bit of help and guidance as to what services and facilities are available to them. Most people who are newly disabled have even never heard of many of the organisations they suddenly have to deal with.
Having dedicated Disability Officers in local authorities would be an immense help. They could guide and assist a newly disabled person through the complicated maze. It would make a world of difference to someone whose life has been turned upside down.
By Simon Sansome
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