Alternative March 26th protest in Lancashire

Families from across Lancashire protesting at plans to close some of Lancashire's 8 respite centres for disabled children staged a demonstration on Saturday afternoon outside Accrington Town Hall to coincide with the protests against cuts taking place in London.

Families from Save Our Respite Establishments could not attend the protest in London due to their caring responsibilities but felt it was important that the local impact of national spending decisions was marked locally as this is where the consequences are being suffered. One parent attending the protest said "Other people may take their right to protest for granted, our voices are seldom heard".

At the budget meeting of the Full Council held on February 17th County Councillors voted through budget cuts totalling £179.1 million including £3 million to be cut by closing respite centres for disabled children. The approved budget document states that there will be "the closure of between one and two units in year one [2011/12] and additional establishments in subsequent years."

The respite centres provide vital breaks for families with disabled children which enable families to continue providing 24-7 lifelong care and their children to live at home within the family. A regular, routine break of sufficient length for families to recharge their batteries means both child and family can have a break from their caring situation and keeps families together.

A parent whose profoundly disabled daughter uses Maplewood House in Bamber Bridge said

"As yet we only know that Lancashire County Council intend to save £3million by closing unnamed and an unspecified number of units which is causing a great deal of anxiety.

I know that if Maplewood closes my family would be devastated. Stephanie enjoys her visits to Maplewood and myself and my other daughter Charlotte are able to enjoy some quality time together as at all other times we are consumed by caring for Steph. We want to care for Steph but need a regular break with each other to be able to continue to do so.

I felt moved to join the protest on Saturday to save the respite units across Lancashire so that families like ours can care for their children at home within the family rather than be forced into the harrowing decision of having to put our children in full-time care - a decision no family should have to make for lack of a proper break.

On Saturday we were approached by members of the public who expressed their support for us. I hope Lancashire County Councillors will listen to us."

Desperate for respite

The Accrington Observer recently told the story of a parent of a disabled child desperate for respite yet prevented from accessing a respite centre due to Lancashire County Council budget cuts.

Terri Lofthouse has been trying for almost 2 years to access respite at Hargreaves House which provides overnight breaks for disabled children. Yet Lancashire have prevented this while at the same time claim the respite centres are 'under used'.

SORE has heard from other families who could benefit from the services offered by the respite centres but who have either been prevented from doing so or have not been told such facilities exist. Terri herself knows of two other families who have been unable to access Hargreaves House.

And this issue is not new. Previous families have told us that they weren't automatically offered a respite centre as an option for having a break.

Terri's son Jules has a range of disabilities after contracting a meningitis like illness at just two years old.

Despite being assessed as qualifying for respite care by a social worker, Terri has been told she is unable to use Hargreaves House as there are no longer any intake panels to consider the referral. Her consultant has also written a letter asking for her son to be able to use the facility.

Cabinet Member for Children & Schools for Lancashire, Susie Charles' response to the issue is somewhat confused. Councillor Charles mentions the County Moderating Panel ..yet this is not the panel which decides on access to the respite centres. The panels which make the decisions were stopped from meeting in November last year. Terri told the Accrington Observer "They keep saying there are no intake panels for new children - they have been stopped. They've put the shutters down".

Both the government National Service Framework for Disabled Children (2004) and Aiming High for Disabled Children guidance (2008) states that families should be offered 'without undue delay' a 'range of services from which to choose' including residential provision and that they should be able to choose residential services as a 'service of choice'.

So why are families in Lancashire who care lifelong for disabled children being denied this vital support?

'Maplewood House is essential' : A sibling's story.

Maplewood house.

Where to start. My sister Sarah attended Maplewood from a young age until she was 18 when she was required to leave due to her age. Sarah has ataxic cerebal palsy as well as being extremely hyperactive and in general very demanding. She loves to run around and make as much noise as possible which made life in our house very interesting.

When my sister went to Maplewood every Tuesday night for a sleepover that gave me the chance to have some ‘normal’ time with my parents. You can't fully appreciate how much of a difference this time can make to both parents and siblings.

We could do things that every day families take for granted, we could go food shopping without worrying she would run off in the supermarket and even worse have a tantrum, we could go to the cinema which with my sister present was an impossible feat or just sit at home watching TV together, which was never possible when Sarah was home as she would just run around the house and never stop.

One weekend a month we were lucky enough that she would go straight from School on the Friday and we would pick her up on Sundays. You can't comprehend how much a weekend can mean to families in our position. A whole weekend can seem like a week, a whole weekend where you don’t have to worry did I lock the front door, is the kitchen locked, living with my sister every room apart from hers and the living room had to be locked for safety reasons.

Having a weekend or a night where you don’t have to worry is well priceless. It was during these sleepovers that my sister would go on that I had the chance to have friends over without worrying how she would be with them or what they would think of Sarah.

These nights ‘off’ we got were so invaluable to our family I don’t think I could ever put in to words the difference it made to our lives. That one night a week felt like the world had been lifted off your shoulders.

As a sibling of a disabled child it can sometimes feel like you are very alone and that you come second to your sibling. Deep down you know that you are just as important to your parents as your sibling but due to all the time and attention disabled children command it can not be helped. And the extremely valuable time where your sibling is having a sleepover at Maplewood means you are number 1 with your parents for the night. Now that might actually sound very selfish but believe me as a sibling in this situation you learn not to be selfish, you actually want to do everything you can for your sibling and spend as much time with them as you can.

The nights that my sister got to go to Maplewood became even more important when I was studying for my GCSE’s, A-Level’s and for my Degree. I knew on these nights I could study without my sister wanting to play, or my sister having a tantrum or Sarah just being Sarah and running round the house signing! These nights enabled me to study in peace and in the long run helped me to pass the exams and forge a good career for myself.

The work and support that Maplewood house provide can not have any value put on it, they provide love, care and support for the most vulnerable children there are in any county, so that parents and siblings can have a break and have some ‘normal’ family time.

Maplewood house is needed by the families of Lancashire and I for one as a sibling of a child who previously used Maplewood cannot stress enough how much of an essential facility Maplewood House is.

Plea to Prime Minister to honour pledge

This is the text of the letter, sent on behalf of all the families, to Prime Minister David Cameron in a bid to save Lancashire's 8 respite centres from Lancashire County Council's cuts which Lancashire say they have been forced to make due to cuts to central government grants:


Dear Mr Cameron,

Before the general election in 2010 when discussing the budget deficit you said that if you won the election and any cabinet minister came to you and said, "Here are my plans" and they involved frontline reductions, they would be sent straight back to their department to go away and think again.

We appeal to you as parents of disabled children that the time to think again is here and urgent.

Our council, Lancashire, a Conservative council, is making substantial cuts to services for disabled children and adults.

70% of the cuts in Lancashire are reportedly to frontline services including the closure of some disabled children's respite centres. These provide vital breaks for parents so that families who you know do so much already can continue to care for their children.

The arguments for closure the Local Authority are putting forward are flawed.

While nationally ministers have made statements that frontline services should not be affected, care should not be cut and the eligibility criteria in adult social care should not be tightened this is exactly what is happening here in Lancashire.

Our council tells us that the Early Intervention Grant from which it must provide services for disabled children and their families is a cut of 19.2% on predecessor grants received.

Clearly the council does not think it can protect frontline services by making savings elsewhere by the measures Communities Secretary Mr Pickles has been suggesting and nor presumably can it be accused of making politically motivated cuts as it is a Conservative council.

While Mr Pickles and other ministers continue to insist that frontline services can be protected our council continues to insist that it has no choice but to make these cuts. Desperate families are caught in the middle of these claims and counter-claims.

As governor of the Bank of England Mervyn King recently stated the price for the financial crisis and recession is being borne by those who absolutely did not cause it and that he is surprised that there is not more anger. Well families are angry but many are too exhausted, too busy with their caring role and too battle-weary already from years of fighting for the services they need, to express it. This must not mean their plight should go unnoticed.

We cannot believe that you would allow this to happen to disabled children and their families.

Our appeal is that you either intervene to make the necessary funds available or you use the forthcoming budget to redress some of the cuts to local government funding which are clearly impacting on some of the most vital frontline services which you said you would protect.

We would also like to invite you to visit to see what fantastic work the respite centres do and to discuss the issues involved.

'Respite is a necessity not a luxury' by Charlotte

My name is Charlotte Crawshaw and I am a 15 year old sibling of my severely mentally and physically disabled sister, Stephanie.

Once a week my sister goes to Maplewood House; a respite centre in Bamber Bridge, this gives me and my mum a break from caring for her, most people would think that one night wouldn't mean that much, but it does to me.

If we didn’t get that one night of respite a week I would not get to spend much time with my mum and she would always be stressed because she wouldn’t get much sleep.

Not only do these nights mean so much to me but they mean a lot to my sister as well, it’s the one time that she gets to be with friends and have fun.

The one night that Stephanie goes to Maplewood is so special to me because it means that I can relax, spend time with my mum and dad and we can all get a good night’s sleep knowing we don’t have to worry about her fitting in the night.

I don’t know what I would do if Maplewood got shut down... I would be devastated...and I know that it’s not just me that would struggle but every family with a child that attends a respite centre.

I believe that respite is not a luxury it is a necessity and if it were shut down many families would be distraught and would really struggle, so I plea that respite is not shut down and that the council find some other way to cut back money,

Thank you.

The King's Speech (or banker bashes banks)

Mervyn King, Governor of the Bank of England today stated that those who are now suffering from cuts are doing so because of the wrong-doing of the banks and the subsequent bailout which needed an injection of vast amounts of public cash to avert the total meltdown of the banks.

He said "The price of this financial crisis is being borne by people who absolutely did not cause it"

He also said he is surprised that there isn't more public anger about this.

Well there is but no matter how dignified the expression of anger when people try to express it they are faced with police 'intervention' as was evidenced by the expulsion of a parent of a disabled child from the recent Lancashire County Council budget meeting when the cuts necessitated by the bank bailout were visited on the disabled of Lancashire.

Driver does screeching U-turn...

but in wrong direction..

In 2006 County Councillor Driver was right behind our campaign to save Maplewood House from closure due to budget cuts by the then Labour administration in charge. He made a number of supportive statements in the press and attacked the decision strongly.

A number of other Conservative councillors when asked by the Lancashire Evening Post 'Do you think Maplewood House should stay open?' replied a definitive "YES".

They included Mark Perks (2006:"It really is unacceptable to treat vulnerable families using this much needed facility in this way".), Mike Calvert, Christopher Holtom - the chair of the meeting on the 17th February who had a mother of a disabled child removed from the public gallery by police as she attempted to ask a question of the assembled councillors - and ..Susie Charles who is now proposing the closures taking £3 million out of the respite centres budget.

Mr Driver also penned a letter to the Lancashire Evening Post challenging a Labour Councillor with the question "Is Councillor Gore saying it is okay to close a respite centre other than Maplewood?"

More recently -just over 18 months ago- in 2009 when the Conservatives wanted to take control of the County Council from Labour at the County Council elections that year they slammed Labour councillors in their election material for cutting the budget for respite by £150,000.

Conservative leaflet June 2009

Two of the measures criticised here are in the Conservatives budget cuts announced on the 6th January approved by Cabinet on 3rd of February and voted through by Full Council on 17th February.

This time though its £3m from the children with disabilities respite budget and £1.5 million from the adult social care training budget ..and many millions more - £179.1m in total - and 70% of cuts fall on frontline services.

The Conservatives described Labour's proposals in 2009 as 'slashing' services and hitting 'those who rely on them most'. Indeed.

So what's changed?

Of course as the leaflet points out we've had the bank bailout.

The state of the national finances were certainly well known in 2009. Could it be that they were just playing party politics with vital services the most vulnerable rely on to get elected? It wouldn't be the first time.

Time for a change in Lancashire? Families may well feel betrayed.

And why are these families who contribute so much already being made to pay for national deficit problems?

Politicians do not like being accused of making U-turns as it portrays them as weak or hypocritical - but that kind of political rhetoric should be part of the old politics. We are supposed to be in a time of 'new' politics.

What is needed here is a change of heart.

Eligibility and Allocation of Services

As if families with disabled children weren't facing enough upheaval already with cuts both national and local Lancashire County Council is to take a decision on the introduction of new eligibility for assessment criteria and service levels for children with disabilities and their families. The decision is due on the 22 March 2011.

The decision details explain:

"This report seeks to establish consistent eligibility for assessment and for service provision for children and young people with disabilities through a Thresholds Model which will be applied progressively throughout Lancashire.

This approach will clarify the eligibility for assessment and thresholds for indicative levels of service provision to children with disabilities and their families. This will require re-assessments of service provision to children with disabilities and consequently some families may receive reduced or increased levels of provision."

You can find details of the proposed consultation arrangements here

Challenging Behaviour

Rentamob?

On the 17th February the Full Council of Lancashire County Council met and voted through unprecedented cuts -many of these cuts fall on the most vulnerable, children & adults with disabilities.

Families of those affected who attended the meeting were appalled at being ejected from the meeting by police as the behaviour of councillors during the meeting left alot to be desired and has been widely condemned. The conduct of the council leader, Geoff Driver, has come under particular scrutiny.

Families of those affected by cuts attended the meeting to find out what these cuts would mean in practice but were met with threats by the council of police intervention if they raised objections.

The police were not as such 'called' to the meeting but were already in the council building - for the first time in 20 years. Unprecedented indeed.

The police themselves are facing cuts to their own organisation. The police who attended were mostly respectful of families and there to do a job as instructed by their managers & the council.

Much of the cuts which warranted a police presence were to the services which disabled children & adults and their families who care for them need to live a tolerable life. Note tolerable, not decent or normal ...just tolerable.

For far too long disabled children & adults and their families have generally been faced with the assumption that they should lead a life of lesser expectation than those not affected by disability due to 'rationing of resources'.

One parent, a mother of a disabled child, attempted politely "please", "may I", "with respect" etc, to raise a question from the public gallery during the meeting. The mother objected to the services herself & her son used being implicated as 'waste' during the budget debate - in fact the respite centre her son accesses helps to ensure that his mother is able to continue meeting his extra needs which otherwise would cost the state a whole lot more. Unpaid carers -usually families- save the state £87bn a year.

Instead of addressing her question ...she was ordered by the council to be removed by police.

Police try to remove remaining families from the public gallery

The council leader Geoff Driver later said that when this mother got up to speak she ceased to be a mother of a disabled child and became 'an unruly member of the public no better than ...louts'. Witness accounts, including the media present, recognised that the mother spoke with dignity and restraint. She did not cease to be a mother of a disabled child but spoke because of this and with the best interests of her and the other children who use the respite units at heart.

In contrast the boorish behaviour of the council leader and other councillors -smirking, talking when others were speaking and eating sweets during the meeting has been well noted - it was as if it was all a game - yet they were making decisions on the life, death & quality of life of the most vulnerable in Lancashire. .

One can have little faith in any decisions taken by Lancashire County Council when those taking such decisions have so little understanding of the lives of families affected by disability and in need of their support.

The mother who spoke because she was the mother of a disabled child wanting to do the best for her son is owed an apology by the leader of Lancashire County Council.

Mum from East Lancashire describes how vital respite is

Pam McCullagh from Accrington describes the pressures of 24/7 caring and how vital respite at Hargreaves House is in being able to continue to care for her son who has Angelman's Syndrome, autism and epilepsy.

You can read the articles here and here