Received from Nadia Clarke
I worry about the future as I have been told that my funding may not be enough for me to have the right amount of support to enable me to live my life. This will leave a huge impact on my life as I live independently with full time support from my PAs.
It is important to me that I have full time support for in the future, as both of my parents work full time and I am hoping to attend university this year or leave home to live independently. I don’t want my parents to PA for me as no other 20 year old has their parents looking after them why should this be different for me??? I want my parents to be parents to me and not my PA’S, I do not want to feel belittled and to be made to feel like a child.
I have my own life and my parents have their’s, they need to work as we have a large family and both their incomes are needed for the household.
Now I have worked so hard and feel lucky to have employed a fantastic team of qualified and skilled PAs. This as you can understand has taken a lot of time and consideration to build bonds and trusts with strangers but now fantastic people who support me on a daily basis.
I live at home with my family but as time passes I long to become more independent, attend university and hopefully move into my own accommodation with my team of PA’S. My parents campaign and do their absolute best to try and stop my budget cuts but this can be tiring for them and takes up so much of their time.
A couple of months ago I was so angry with my social worker because when I try to communicate with them but they do not understand about my life, what I am trying to explain to them and my team of PAs who support me all the time, the hard work that we have put in to build bonds and relationships made.
If my support is cut I will feel depressed and frustrated because I can’t do everything I intend to achieve and complete on a day to day basis I will be isolated and bored.
This makes me cross as I see others completing University degrees getting jobs and leading life to the best of their ability. I on the other hand need support with achieving these simple things and without it I will not be able to attend university or be able to go out to work.
Why should I have to go to a care home or have my parents be my PA,S? I am an intelligent, bright young lady who knows what I want in life. I don’t want to go to a care home with other disabled people put into a room and be forgotten about left to watch TV all day because the carers don’t have time to take me out or complete my work no thank you as we all know that that happens in care homes.
I want my own life and choices I would rather die than be put into that situation because this I feel this is discrimination. It is my human right to a life and not be left on my own at risk.
I want to make a difference to people’s lives and support those disabled people who do not have a voice. I can only do this with the right support. I really want to achieve and contribute to society and have a job.
If I no longer have my team of PA’S I will feel lonely, isolated, bored and depressed my PA’S are my life and my world without them life will be dull they mean everything to me and are such a huge impact in my life.
My team of PA’S are trained in all areas with British Sign Language, my Cochlear implant, my Dynavox communication aid, my wheelchair, with moving and handling me in the correct way so that I am comfortable and with my drinking, eating and personal care.
If you can direct me to fantastic skilled PA’S who are all trained in these areas for less than £8.00 per hour then please do so, but I think that you will struggle as my PA’S are all so skilled and fantastic in their own ways.
Thinking about the cost of care and budgets and that you have in your minds that I should attend a care home for disabled people. I am sure that from the government care homes take more money that I am asking for in my budget for my PA’S so why am I made to feel like I am to go to one???
This is confusing and I am now feeling let down and upset of the Governments choices and decisions about my life, it just does not make sense and is confusing.
I wish those of you at Pat’s Petition can take my words to Liam Byrne.
Thank you
Nadia
Tags: benefits, carerwatch, disability living allowance, hardest hit, independent living, social care, welfare reform
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Ah but the Social Work team do understand your situation, they just give the impression they don’t because they cannot face up to the fact that it’s all about the money. We had services cut to zero (not that we needed as much as you) and now it places an added burden on me to look after my disabled wife even though I am disabled myself. The house is not clean most days and we rely on the kindness of friends to help out occasionally unpaid. I have to rest a lot more and that means less care for my wife which equals more risk etc etc. That is were this government (and probably successive governments) have left us. Basically abandoned. The new care bill seeks to demolish this even more. Some will be lucky to even be put forward for a care home the way it’s going.
As an adult I have already been having this problem since I had to start using a wheelchair full time at age 35.
My council would not cover full wages for me when I first needed help and had to use all my DLA so I could not afford to buy any extra’s, difficult to save up for things like new scooter batteries even pay bills.
When I got moved into adapted housing luckily I could manage with the help of my dog. I had to pay gardener or people complain about state of garden but I only pay cleaning agency when have spare money.. usually just before xmas when people will be visiting… otherwise I manage on my own.
I am also deaf and speech impaired so socialising is difficult without help. I can get round village on mobility scooter to walk my dog, but can’t afford help to get out and socialise reguarly or even just for shopping. My family also has own lives and needs to work to pay their mortgages etc It’s cheaper to buy online and get everything delivered to me but I am mostly housebound other than trip to nearest field with dog.
I am too far from town to get there and back on scooter and taxi’s won’t take big scooter. My NHS powerchair was returned due to electrical failure and got so frustrated with communication with them that I didn’t bother applying for new one off them! I can’t afford one with tilt/recline etc and comfy enough for me to be sat out in all day.
I feel for the younger people like yourself Nadia, as I did go to university & worked etc when I was younger before I become physically disabled, so I did at least get a chance to experience what I wanted.
The Govt are stupid, they want disabled people to go back to work but take away all their support to achieve that goal… how does that make sense???