Independent Living Fund cut-off means more disadvantage for some disabled people in the north
WHAT does being independent mean to you? Living on your own? Being able to make choices for yourself? Being responsible? For me, being independent is being able to work, to meet up with my friends, to pop out to the shops – in short, to live life on my own terms.
This might not sound all that radical but for me and many people like me independence is not a given and it’s not something I take for granted. I have spinal muscular atrophy, a condition that means my mobility is very limited. I can’t get out and about, can’t make a cup of tea or even brush my teeth without support from my personal assistants.
My personal assistants – carers, as they are sometimes referred to – are an extension of my arms and legs. They play an essential role in my life, from helping me to get dressed, to placing my hand on my keyboard so that I can work and helping me get out of the house. These are everyday things that most people wouldn’t think twice about but when they aren’t options for you, having someone who can help makes a huge difference to your day-to-day life.
I sometimes think about what life would be like without my personal assistants, and the truth is, there is no way that I could achieve even half of what I have done without them – I wouldn’t even be able to get out of bed.
With their support, I’ve accomplished so much – I’ve attended university and graduated with a Communications masters, I’ve learned to drive, carried the Olympic torch through my home town and even completed a marathon to raise money for Muscular Dystrophy UK, who I work for as campaigns officer. If I didn’t have this support, it would be devastating to know that I had the potential to achieve great things, but would be held back because of my disability.
Like anyone else, my personal assistants need to be paid for their hard work. Caoimhe is with me from 9am to 9pm and Karen takes over until 7am the next morning. Round-the-clock support can get very expensive and, for most, it’s simply not affordable. I’m one of the lucky ones. My personal assistants are funded by the government, through the Independent Living Fund (ILF). Unfortunately, in 2009, this fund closed to new applicants.
People who qualified for Independent Living Fund support prior to 2010 continue to receive their funding – myself included – but for those who missed this, it’s a different story. Many people who would have received life-changing funding were left without financial support.
That means that people like me – people who could otherwise achieve the things they want to in life – don’t receive the support they need to live independently.
Take, for example, 26-year-old Declan McMullan. In 2012, Declan suffered a serious cardiac arrest and developed locked-in syndrome. He can’t see, move or talk but can hear, and can only communicate by blinking.
Like any other 26-year old, he still wants to live his life as independently as possible. As he put down in a letter, read out by his father at Stormont last year, “Yes, my life is very challenging now, but my dreams haven’t changed. I am still me. I still want to go swimming, go to the cinema and meet friends, but I require a lot of help to achieve this.”
Unfortunately, because Declan’s accident happened after the fund was closed to new applications, he doesn’t receive the additional financial support he needs to enable him to lead an independent life.
The only real difference between Declan’s situation and mine is timing. How can it be fair that some disabled people receive additional support, when others don’t? How can we justify an arbitrary cut-off point having such a significant impact on a person’s quality of life?
I feel strongly that we can do better than this. In Northern Ireland, we should be ensuring that support goes to those who need it most. Independent living should be a reality for everyone.
Currently, the Independent Living Fund is exploring the possibility of reopening the fund in Northern Ireland. Events will take place in Belfast, Enniskillen, Newry and Derry next month where disabled people, their family, friends and personal assistants will have an opportunity to have their say and highlight the support that they think should be available to them. It’s so important that people attend these events to make sure their opinions are heard. I’ll be attending – if you have a disability, or care for someone who does, I hope you will join me.
:: To attend a free Independent Living Fund event, visit ilf.scot/northernireland