Step over the edge and trust?

May 19, 2016 1 comment
Tomorrow is a day I’ve been dreading and fighting against for the last five or so years. Finally, I have my assessment which will see my Local Authority begin to take more (all?) control over my Independent Living package.
 
The dread and fight actually is nothing against my LA, but the way nationaly my rights, choice and control have been slowly eroded against something that has worked, kept me safe, happy and…living it full!…No news headlines in yer papers, I won’t be on the news or have the media at my door, just a slow taking away and invasion on how I should live and justify my needs in order to live a life, participating, working etc. I need to place trust in my LA and will of course work with them, highlighting my objection firstand then my concerns fears and hesitence to let go if it goes wrong, I’m being asked to risk the way I live. I’ll have to trust that they honestly will deliver that “everything will be ok….and in fairness…It might be…..not knowing is another sick action of what this and previous governments are/have let happen.
 
I have to trust I’ll be ok even in the face of evidence of year on year cuts to Adult social care; them never having had experience of supporting people with high needs to live independent lives (why the ilf existed, LAs couldn’t…can they now?); and of course with no ringfencing of money to support those with the highest needs live an independent life!
 
And of course trust in not knowig how I am dealing with a major loss of two people key to my life in giving me belief in myself and the confidence to trust in my own experience, values & beliefs, my compass check that I’m going the right way.
 
I can trust to an extent because I’m lucky..lucky of having the amazing family, friends and colleagues I have around me who will fight on alongside me and the fact we Disabled People are resliant and strong in the face of it! #WeFightOn #BecauseWeAreWorthIt #SaveIL #DropTheFButHopeYouDontDropOurRightToLiveTheLivesWeChoose
Categories: Rockinpaddy, Uncategorized

Its been a while

September 26, 2015 Leave a comment

Lots going on as the battle for ILF is far from finished and with new opposition, things are set to get a bit spicier, we too have a few surprises up our sleeve to come so watch out nearer to Christmas.

Make sure you sign the stop changes to Access to Work petition, another bonkers backwards step by our government.

I’m over in Ireland with my beautiful mum and will be here for a long while.  She set us a challenge so if you can help or share, it’d be great.  thanks for now.  https://www.justgiving.com/teams/rockinpaddy

Categories: Uncategorized

#WeFightOn – The ILF closed till further notice

The ILF is closed till further notice.  Yes, only till further notice….we will now begin to claw back all the freedoms won over 30 years.  Yep, drop the F, I don’t care what we call it, today marks the beginning of our fight to save all the principles I’ve tried to articulate over the last 30 days. #WeFightOn Both the Tories and Labour Party (as we were told yesterday, they all know that it will have a negative impact on some of us, but they let it happen and spun an old load of flannel to justify their nonsense) and even the Justice system have failed Disabled People and our allies.

So we now move forward until we achieve comprehensive legislation change to protect Independent Living as agreed in the United Nation Declaration of Rights for Disabled People: Article 19.

closed

Categories: Uncategorized

#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

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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: 3 days till closure

#30JuneILFcloses: Off too BBC in Salford to chat about #SaveILF You might see me on your tellybox in the morning! There was  me thinking my blogs would get more deep and meaningful as we got closer to 30th June. However with every day drawing closer every day things change and tbh I don’t know whether I’m coming or going!  The battle goes on! #SaveILF

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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

Categories: Rockinpaddy, Uncategorized

#30JuneILFcloses: 4 days till closure

#30JuneILFcloses: Off to my beloved youth club. Today we are playing Boccia an inclusive sport to try out and enjoy. As i write the competitive atmosphere is palpable. The ILF has given me opportunities to try out new experiences not knowing where they might lead. 

  
Fighting to save Independent Living is not just about us here and now but the future. The government is obsessed with a social care system to deal with an ageing population. We don’t want that, we know one glove doesn’t fit all and actually we want to live!  

Young disabled people once again get given a raw deal and are expected to accept the life perhaps more suited to retirement. The needs of young and older people are very different and deserve equality and respect. Each will aspire, have dreams and expectations. That’s what Independent Living is, it’s  not (or shouldn’t be) worrying about who will put my socks on, or feed me or whatever. Those basics should be within my control as it is equally with anybody else. 

Yes it needs resource but critically those resources aren’t waisted in beraucracy or a whim of a banker to make profit. They help us live very ordinary lives so we can participate and play a part in our society. Rise up young people Independent Living is your Human Right. As a world we have agreed that so now we must fight for it! Idealistic? Yes, surely that’s what we need to aim for, even if at the moment we are a million miles away. 

I might have a game of Boccia whilst I’m at it sausages.  

#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

Categories: Uncategorized
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