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.