I’m writing this post from a place called Rouen, in France, on a crazy adventure down to Asturias, in Spain, where I’m living for 10 weeks upon arrival.
This article comes following the recent political discussions on social care funding. It also shows how much disabled people can do with the right support, and how much will be lost with these proposed funding cuts.
I’ve had my disability since I was born. Spinal Muscular Atrophy (SMA) means I cannot walk, turn at night, wash independently or lift anything heavier than a book. Despite this I sailed through school, gained a Masters degree at Coventry University, live in London, travel frequently, drive a car and run my own business.
A huge foundation underpinning this, is my social care. Until I was 19 my mum and dad saw to these needs. I managed fine until then, but relying on them became hard. Beginning my studies in Coventry involved strangers filling this role. Rather scary. However, it was by far the best hurdle I overcame and it enabled all that has followed.
Now I have a budget of circa £40,000 to recruit and employ my own Personal Care Assistants. To have the choice of who supports such personal tasks, decide when I wake up, how I manage my team to enable my travels; this has become fundamental to who I am and what I want to achieve in the future.
The current economic crisis and political stances threaten to cut my social care funding. Around half of my budget is from the Independent Living Fund (ILF). This is closing in 2015 and I’m told my Local Authority (LA) will receive the money instead.
My concern is that the LA will not be obliged to ring fence the money. With past and future cuts, a difficult assessment criteria anyway, and a need to save, I can see my care budget dwindling.
If it does, I’ll either have to reduce my 24/7 care and compromise my safety and lifestyle or, alternatively, pay less and struggle to find good people for the job. Either way my life will be negatively effected and become stressful regardless.
I just want to point out that despite my ‘cost’ to the state, this investment is well spent. The long term health costs (physical and mental) would rise as a result of this harder way of living. My business would fail, resulting in my spending less in our economy and paying no tax. Finally my PA’s would also spend less and pay less tax too.
You do the maths. It’s simple. With investment in disabled people, everyone wins: socially, economically and individually.
You are right there Martyn….it’s a win win and with the numbers of people with disability on the dramatic increase globally (thnks to us baby boomers), we need to get behind any initiatives that invest in PWDs. Australia does some things right but we have a very long way to go.