Being a newly disabled person can be a daunting experience, not only is your entire life going to be overhauled, but also you have no instructions and little or no knowledge of what help is available.
The current system is complicated and messy, so much so that people with new disabilities are losing out on the support that is urgently required and what they 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 worked in social services for many years in Adult Social Care you would have thought I would be an expert in the field of disability or mental health services, but until it actually happens to you personally, people are pretty much unaware of how the system works or how complicated it is.
For example, if you are a housing tenant, you have one number to call for the housing office. If you need emergency response, you have one number to call. If you have a council tax problem you have one number to call and even if you have a phone plan, you have only one number to call. So why after losing the full usage of my legs did we have to arrange interviews and phone calls with 15 different organisations to get things sorted.
Here are just a few questions that come to light when a person goes from being fully mobile to being disabled.
• How am I going to get washed and dressed in the mornings?
• Who is going to pay for the carers, if I can no longer work because of my disability?
• How am I going to pay my mortgage?
• How am I going to get to work? (am still able to work?)
• How am I going to get into and out of my house?
• How am I going to look after my children?
• How am I going to cope (mentally and physically?)
• How am I going to drive?
• What assistance am I going to get with benefits?
• How am I going to pay my bills?
• What affect is it going to have on my family and partner?
• What adaptations are going to be needed for my home?
To answer a few of the above:
You will be financially assessed by the local authority as to how much you need to contribute towards your carers, if any.
The local authority should arrange adaptations, and this should be arranged in the hospital before discharge. Sometimes this is not possible and short term alternative accommodation may need to be provided.
Again, this should be done before discharge, however if you are discharged and need further adaptations this should be arranged by the local authority.
It should be noted that the local authority can do Occupational Health assessments to include things like hand rails, toilet adaptations, bed adaptations, raised chairs etc if they are too low. They also provide equipment to make sure you can manage in the kitchen, like kettle tippers, specially adapted cutlery, large remote controls, large clocks, and electronic medication dispensers etc, etc.
Things get more complicated when you need to contact central government. For my injury I had to have a PIP assessment and the review of my assessment can be found on the following link. https://abilityaccess.blog/2018/02/19/my-pip-assessment/
It is also my most read article with tens of thousands of hits.
Being newly disabled is very expensive and you may also need to buy equipment that is not available. For a PIP assessment it can take up to two months for someone to come out and assess your needs and it can take up to 8 weeks for any payment to start. This is far to long for anyone to wait. After my PIP assessment I had to appeal and so this took even longer, but the appeal was upheld.
MY PIP assessment pays for my Motability car. This brings me on to another subject. At the time of my new disability I knew nothing about the Motability Scheme. I had no idea that you could have hand controls for a car and have other adaptations also done to the car, i.e. so my scooter can be lifted into the boot. I had entered a world that was alien to me and so I struggled for months till I was made aware of the scheme on a community chat group.
You then need apply for a blue badge and get a letter from your doctor to say you are disabled and again this is done through your local authority but nobody official tells you this and it is something you need to find this out for yourself.
While dealing with all this being newly disabled, you are most likely struggling with the mental strain of coming to terms with your new disability as well as sorting out carers, financial assessments, Motability schemes, having a PIP assessment, having adaptations done to your property. It is just so mentally draining, not only for you but also for your family.
Carers assessments across the country are undervalued and under used and they differ from one local authority to another. One local authority will offer the carer a total of £250 a year for being a main carer, which itself is an insult, however we get this from out local authority and it helps with the cost of gardening in the summer. But again, you are not advised that you can apply for this.
When you have started to get your life back on track as best you can having a disability you now need to apply for job seekers allowance or employment support allowance, which ever is suited to your need. This is paid by central government.
You are also not advised about Access to Work. For example, you might need to get a taxi to work because of your disability or you might need an adapted chair or a ramp to access your office. Access to Work is available for any business employing a person with a disability not just a physical disability but also any mental health issues and this is unlikely to be explained to you, how this works when applying for a job, by anyone.
So at this stage you have had to contact Central Government, the NHS, Social Services, mental health services for counselling, Motability scheme, blue badge office, you now having daily carers to get you washed and dressed, you having adaptations done to your home, you are applying for financial assistance, having a carers assessment for the main carer of the house and you have not even had a chance to arrange a council tax reduction.
Local authorities will reduce your council tax band if you use a wheelchair indoors or have an extra room for medical purposes. See your local council tax department for further information as this will vary for different local authorities.
It is the simple case that the system is very 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 will have never heard of certain organisations or been in the system before and need an extra helping hand. Having a Disability Officer at the local authority that can guide and assist a newly disabled person through this complicated maze could make a world of difference to the person whose life has been turned upside down.