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#30JuneILFcloses: 1 day till closure
#30JuneILFcloses: No big deep emotional blog today, its a simple one. This is wrong, we fight on. Off to Downing Street. #SaveILF
Thank you for all the support, love and messages sausages. xx
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly
about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#30JuneILFcloses: 2 days till closure
#30JuneILFcloses: As I can’t sleep I’m posting early. I should be on your telly box at breakfast time and then maybe your radio boxes. My head is spinning with all the arguments we have battled with over the last five years since this all started with ILF being closed to new applicants. Put simply we know this is wrong and doesn’t make sense. We know the ILF works and should be broadened not closed.
The reason it works is because it was developed with disabled people and wasn’t about care but living. It’s about putting the choice and control with the individual. Living not just existing.
Let’s be clear, This is a closure and not a transfer as the government would like you to believe. I think they thought as we were a small number this one would quietly slip away, oh how wrong, just as wrong as the decision itself.
The closure doesn’t make economic sense. ILF administration was 2 or 3% compared to local authorities being much higher (12-16%) that difference will be lost before it’s even distributed. The transfer budget only goes to April 2016 and we don’t know what will happen then except that local authorities in context are making further cuts and savings to services all over the country.
We also have been proven right that this had already created a postcode lottery with local authorities dealing with the transfer budget in different ways and the full transfer hadn’t eve happened yet! Some have ring fenced till April or an assessment is carried out (costing more money even though in transfer that’s already been done) some have already cut packages offering some inhumane and un-dignifying alternatives to living (wearing a pad is not an alternative to going to the toilet is it?).
We also know that the transfer fund is already a little less than the ILF budget was as in the allocation an attrition rate has been taken off before it even gets to local authorities.
The rhetoric that we will be protected is very different from our real lived experience. As a disabled person equality and rights is not a theory it comes from a lived experience of battling and addressing the barriers we have to deal with on a daily basis that others may never or only from time to time have to face or deal with. Most for example don’t have to justify how or when they get up or who it is that does that. They just do it and get on with living, let alone have to fill in a form explaining that and it being given a monetary value (do you know how long it takes you to go to the loo or eat & how much that therefor costs). Most just get on with those basics to get on with the living bit. That’s all I want too. Because I need support to do it I need support and all I need to do it is the choice and control and autonomy to manage all that for myself. I just want to get on with my life I really don’t want to be a campaigner, I want to go further than I think, learn more, do more and do it all a lot better.
Hopefully over the last thirty days I’ve tried to articulate the difference between Independent Living and care. It’s about living and not just existing.
It’s not just about me. It’s about an equality of relationship with lots of others, my family and loved ones, my friends, colleagues, those i work with and those I come into contact with. It’s about the future for disabled people and young disabled people. It’s about jobs, for me protecting an amazing hard working team of pa’s who know and understand and have high quality skills and competence to support me achieve all the above.
What is clear is the ILF closes in less than two days. Tomorrow will fly by and then the battle will go on. The impact of closure will be slow, like a drip drip type effect and we don’t know how it will play out, that in itself is another reason not to close but the evidence does not make it look good.
We can’t forget the freedoms we have had and can’t let them slip away till everyone forgets what’s possible and so the battle must and will intensify. The law has not protected what is enshrined in the United Nations convention, article 19, our right to Independent Living and so we must fight for some sort of comprehensive legislation that addresses and protects that right.
Hopefully then I can get on with making some music sausages, mind you nothing will ever stop me doing that!
Right 4.30am, a little snooze before I go & say morning to Bill & Loiuse and maybe/hopefully Carol (oh how I wish we could chat about music or adventures with drinking straws or funny things that happened getting Schimmel into a car/across London/into my house etc). I am as you can tell, a bit excited about meeting them but nervous that I do our fight the justice it so deserves from me…..we’ll see I guess?
photo of my brilliant PAs past and present taken by Benjamin Mole
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#30JuneILFcloses: 6 days till closure
#30JuneILFcloses: Today I’m working in the studio, trying to concentrate on my job, making and facilitating others to make music. Excited about some schools work coming up! #SaveILF
I need to get a few myths busted before I do though. ILF is not a benefit and so not part of the benefit cuts debate, its being pushed that way so the government can blurt out its rhetoric about its abhorent behaviour. I do not pocket the money for myself, every penny is to support me to employ a brilliant team of PA’s to provide all the support I need to live and manage independently.
Independent Living is not about care (of course there is a relationship/cross-over) see the footnote below.
It is emerging that there is a view that I/we are somehow scaremongering about what is happening. That disabled people not on ilf are being ‘cared for’ (again footnote, this isnt about care) within the system fine. Believe it or not, I think about every action very carefully for that very reason. Are my feelings justified/objective/considered. A major part of my job involves building confidence of young disabled people to get out there and live the dream, so the last thing I would want to be doing is scaring people. The honest reality of what is happening is I don’t know what will happen and thats surely enough to say I want to hold on to somethng that works until I do know what will be in its place? I do know this closure has already created a postcode lottery with local authorities all doing different things. I do know my mail has increased from dsabled people up and down the country saying their local authority is cutting their package, cutting sleep overs, suggesting wearing a pad is an acceptable way of dealing with toileting overnight.
I’m proud to have been a collective of disabled people localy to have set up an oganisation supporting Independent Living. The case load of this one organisation, suggests different from the governments rhetoric that the system is fine and that it will cope with us (assessed as having high/severe needs), the evidence doesnt stack up. So maybe the feeling of being a bit scared at the moment is justified by the “real lived experience of what is happening” and not by our making?
Ok time to focus on music, I’m feeling low today, worried about the impact of all this fighting on my work/life bank balance.
Thank you to everyone (over 500 messages yesterday) who supported me yesterday. In fairness our shouting was perhaps a bit more real and genuine, perhaps a little less nonsense than the ego-trip, career stepping (some MP’s/ministters/nt all) shouting going on in the chamber. Those Para games certainly has helped us develop our sprint speed and team work ay Sausages! Right….music….save me…and the ILF if ya can!
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#30JuneILFcloses: 7 days till closure
#30JuneILFcloses: I’m off to the Houses of Parliament for the final time today before the ILF closes. It won’t be the last visit because from 1st July my visits will be to fight for legislative change to protect our rights to Independent Living.
In my mind I think back to 1994/5 and my first experience of DAN, brilliant & empowering. I remember us saying then…nobody is listening, you dont hear us, we write letters, sit on advisory groups & committees and still our voices aren’t heard. Its time for action!
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#30JuneILFcloses: 8 days till closure
#30JuneILFcloses: Off to see Leo & Anto, ILF gets me on top of the trailer!! #SaveILF
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#30JuneILFcloses: 9 days till closure
#30JuneILFcloses: Today is a day of rest after a manic week, ILF gives me the ability to create space alone to take stock #SaveILF
Earl Gray & a bap down Monkeys Cafe.
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#30JuneILFcloses: 10 days till closure
#30JuneILFcloses: Today, I’m spending the day with all my PA’s. Thank you to all of them. #SaveILF is not just about me or the 18,000 ILF recipients (45,000 over the life of the ILF) it’s about lives, families, people’s jobs… all of us, family, friends and our very brilliant, skilled, talented, supportive, important PA’s.
My PA’s suppprt me to truely live in my lovely house.
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#30JuneILFcloses: 11 days till closure
#30JuneILFcloses: Today (well yesterday…ooops been a bit busy) I was able to exercise my democratic right to protest, thanks to #SaveILF. Independent living is about the right to participate in stuff! I sang a little tune and thousands sang it back to me, making the hairs on the back of my neck stand up. #SaveILF
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
#30JuneILFcloses: 12 days till closure
#30JuneILFcloses: The lyrics of this song recorded over a period of time reflect on the last couple of depressing months and hopefully it says “we are not going away or giving up, we have come too far”!! Lyrics by Stuart Bracking (with thanks) & me, guitar (brill as always) Dave, BVs Helen & Caroline. Tune by John Lennon. This song marks the next phase of our fight for Independent Living. The 30th of June is not the end but the beginning for legislative change to protect our Right to Live Independent Lives.
Thats Independent Living – The right to make decisions over what is important to you; Choice; Control; Equality; A Human Right; Autonomy; Having true Quality of Life;
Please do share link or #Retweet or fb share #30JuneILFcloses blogs if ya fancy, ta sausages xx
Please do sign the petition if you feel strongly about this, your signature does make the difference: https://you.38degrees.org.uk/petitions/defend-disabled-people-s-right-to-independent-living
Rockinpaddy 