I'm 60 and my partner he is 49.
I was diagnosed with MND (ALS) in May 2015, yes, it is progressing but since I diagnosed myself some 3 months prior, I began to look into how I can continue with life as best it can be. I still travel the world with my wheelchair and partner; and future proofed our home, work and car as best we could with the uncertainty that MND presents daily.
We prepared my ADRT, my partner and I bought each other our funerals as a Christmas present, what a laugh we had, and secured all future arrangements. That aside we now have to get on with day to day living and work.
One item I researched was "Access to Work" and the other being local council Direct Payment system, enabling people to choose the manner in which they wish to be cared for - this has proved a great help and continues to be so.
My first and most important bit of advice to anyone, is always ask, if you don't ask you will never find out.
The level of support can vary greatly according to individual needs, and whether you are self employed or working for small or larger companies. Some of my needs were met by, providing a rise and fall electric desk, a project manager support worker to assist me on building sites and also adaption to my drive from wheelchair vehicle.
I hope my experience and this information below will help you forge ahead, and obtain the help needed for you to continue your working life.
1) Access to Work: an overview (It is not means tested)
If you’re disabled or have a physical or mental health condition that makes it hard for you to do your job, you can:
- talk to your employer about changes they must make in your workplace
- apply for Access to Work if you need extra help
Your employer must make certain changes (known as ‘reasonable adjustments’) to make sure you’re not substantially disadvantaged when doing your job. These could include changing your working hours or providing equipment to help you do your job. You should talk to your employer about reasonable adjustments before you apply for Access to Work.
If the help you need at work isn’t covered by your employer making reasonable adjustments, you may be able to get help from Access to Work.
An Access to Work grant can pay for:
- special equipment, adaptations or support worker services to help you do things like answer the phone or go to meetings
- help getting to and from work
You might not get a grant if you already get certain benefits. The money doesn’t have to be paid back and won’t affect your other benefits.
To get help from Access to Work you must:
- have a disability or health condition (physical or mental) that makes it hard for you to do parts of your job or get to and from work
- be 16 or over
- live in England, Scotland or Wales - there’s a different system in Northern Ireland
You also need to have a paid job, or be about to start or return to one. A paid job could include:
- an apprenticeship
- a work trial or work experience
- an internship
3) What you'll get
You’ll be offered support based on your needs. This may include a grant to help cover the costs of practical support in the workplace, or getting to and from work.
The grant can help pay for items or services you need, including:
- adaptations to the equipment you use
- special equipment or software
- British Sign Language interpreters and video relay service support, lip speakers or note takers
- adaptations to your vehicle so you can get to work
- taxi fares to work or a support worker if you can’t use public transport
- a support worker or job coach to help you in your workplace
- a support service if you have a mental health condition - this could include counselling or job coaching
- disability awareness training for your colleagues
- the cost of moving your equipment if you change location or job
Access to Work can also help assess whether your needs can be met through reasonable adjustments by your employer.
What Access to Work won’t cover
You won’t get an Access to Work grant to pay for:
- changes that your employer has to make (reasonable adjustments)
- items that would normally be needed to do the job whether a person is disabled or not
- support that your employer used to provide but has stopped
4) How it works
It will help your application if you’ve spoken to your employer about reasonable adjustments before you apply for Access to Work. Once you’ve applied, an Access to Work adviser will contact you to discuss what help you could get. An adviser may also contact your employer to discuss how Access to Work can support you - they won’t contact your employer until they’ve spoken to you.
Depending on your condition, an assessor may visit your workplace to assess your needs.
You may get an offer of support, which could include a grant. If it does, you’ll be told how much you’ll get and for how long.
You or your employer will buy the items or services you need.
Access to Work will pay the money back, up to the amount of the grant you’ve been offered and with any contributions deducted, such as employer or NHS contributions.
You can apply for Access to Work online. You’ll need to provide:
- your workplace address
- the name, email address and work phone number of a workplace contact - this should be someone who can authorise payment for the items and services in your support offer
You’ll also need to explain:
- how your condition affects you at work
- what help you’re already getting
- what else could help you
Website to apply:
Telephone: 0800 169 0154
Monday to Friday, 8am to 6pm
Closed public holidays