CHILD'S PLAY

Thank God it’s September!

I always feel sad at the passing of Summer.  I always feel guiltily relieved that the children are finally back at school.

Summer’s supposed to be fun, the season of play and leisure.” Quality Family Time”. Everyone else seems to have it all mapped out and organised like a military campaign.

Let’s say 6 weeks school holidays (more or less, give or take a Bank Holiday). You’re now legally obliged to take your family vacation/staycation within this time slot, so you book your usual 14 days break.  Now you have 4 weeks left of childhood boredom/ennui to cover. OK, your Mum and Dad have agreed to have the children for 1 week, but won’t travel at the weekends, due to the weight of holiday traffic. The children always moan, and say”I’m bored” At least they can entertain themselves. But whilst Mum and Dad are still able, and apparently willing…

So now you are down to 2 full weeks, and 2 half weeks yet to fill. It's even been cleared with the boss  to swing some flexible working over the summer (now there’s the backing of the law behind it) and agreed that the time will be made up through September.

The average weekly cost of a summer regular play-scheme is over £114.51 according to the Family and Childcare Trust and Netmums, and that’s for an average 5 hour day. If you can be inventive you can avoid having to resort to that. Once you start really looking around it’s amazing the options that are out there!

The free/half-price day out vouchers have been downloaded from the Internet (a God-send), and a few trial sporting activity days courtesy of the local authority Leisure Centre have been booked. 

You’ve also managed, often through gritted teeth, to remain on speaking terms with your daughters’ best friend’s mother, even though you have nothing but your daughters’  continued happiness in common. The girls will expect a couple of sleep-over exchanges.

That will leave you with a couple of days school uniform shopping with the children (could get it on-line?) and standing in the ticketed queue for new school shoes in the small, understaffed shoe shop (remember to take your Rescue Remedy and blood pressure pills!)

Then suddenly, they’ve all gone back to school!

AND BREATHE

Now, let’s start that again.

Let’s factor in real life for some of us. A totally dependent child or young person. No words and limited understanding. A danger to themselves or others.

Six weeks holiday for your profoundly disabled child. At Special school your child has a 1-2-1 support worker every hour of every school day because she is unable to do anything for herself.

Your child is engaged with another person (adult) in some activity, throughout the school year. Not in the long school holidays. Then it’s all down to you…

As parents of a profoundly disabled child we don’t attempt family holidays anymore. “Adapted” holiday cottages are never as wheelchair- friendly as they claim, and ultimately there is no benefit in being away. We are not tourists, just carers again in an unfamiliar location.

Grandparents liked the idea of being able to help, but they stopped offering several years ago, after that incident in the park with those other children.

At least I don’t have to worry about childcare whilst at work- I had to give up work when my regular child-minder couldn’t cope with the increasing lifting and handling. She wasn’t prepared to have her house “wheelchair adapted”. I missed too much time off work because of my child’s increasingly unpredictable health.

So I’m looking to cover 6 weeks, with very limited options indeed. The more disabled the child is, the less choice of suitable activities there is.

What I need is a play/youth scheme where there is 1-2-1 support for my child, where staff are trained for and can anticipate my child’s unique needs. Someone who she can have fun with, and where I know she will be safe.

There are some wonderful Play and Leisure providers out there, specialising in meeting the needs of all sorts of children and young people with disabilities. £20 per day? That’s comparable with regular play-schemes. With 1-2-1 support it should be nearer £100 per day! That real cost is highly subsidised by local authorities and the generosity of the charity’s supporters, and lots of hard work by the fundraising teams to make up the shortfall.

Or I should say, there have been some outstanding providers out there over the past few years, who have increased the quality and availability of Play and Short Breaks for our children, with consistently growing support from Local Authorities.

Now it looks like it’s “good-bye to all that”.

Sadly, Hampshire’s swingeing budget cuts are set to sweep away nearly all the support that families of disabled children and young people have come to rely on, and threaten the long-term survival of wonderful charities such as Disability Challengers, to name one of very few.

Will we be left with no options at all for our disabled children in the long school holidays?

I always feel sad after the passing of summer. I always feel guilty for feeling cheated out of the summers I have missed. Ah, all those summers that might have been. All that time we might have spent doing normal, “family” things, like everyone else.

But we don’t do them, because we have never had that “normal” option.

But now it’s September, and the school uniforms are back on. Looking uniformal September normal!

Child-care?

It’s no longer Child's-play with disabled children!

Please sign the petition…

http://chn.ge/1qNs6MA

"PLAY UP! PLAY UP! AND PLAY THE GAME…"

A Hampshire parent's response to the Press Release from the Hampshire Parent Carers' Network, following the confirmation of the decision to slash funding for Short Breaks for disabled children:

“If only we could!”

“If only we could continue with the much loved but limited options of places to play, games to play, and choose who we play with.

“If only we were like regular kids.”

Our kids are irregular. Individually inconvenient. Hard to categorise, but conveniently lumped together by assumptions of the regular parents and their regular kids with their regular lives.

Social Research done in Universities across the country has validated the real long-term benefits to the families who receive Short Breaks for Disabled Children. Sadly, some people argue that this evidence is inadmissible due to the absence of a control-group. However, to do this would have meant denying any Short Breaks or respite to the control-group of disabled children or young people and their families.

And this, of course, would be morally repugnant.

Imagine the public outcry which would have followed as we watched those families disintegrate, all to prove the point which we all know to be true. Families with disabled children and young people are 70% more at risk of collapse than the average.

Successive national and local governments grew to understand this – providing relatively modest levels of funding for Short Breaks for disabled children had a significant beneficial impact in the long term. This investment reduced the risk of the huge financial costs that the State incurs when families collapse under the relentless burden of caring for disabled children.

So what became of equal opportunities and fairness?

Fair-play!

Back in the times of increasing understanding from Hampshire:-

“Every Child Matters” (Green Paper 2003) became “Every Disabled Child Matters” (Hampshire Authority signed up to the “Inclusion Charter” in 2008)

“Aiming High for Children” became “Aiming High for Disabled Children” (Better Support for Families programme 2007 including Hampshire Parent/Carer Short-Breaks questionnaire)

Between 2003 and 2010 – with funding agreed into 2011 – services were dramatically improved, trying to move towards a “level playing field” for both disabled and able-bodied children and young people. Support was increased for play and short breaks for disabled children, with full consultation with parents resulting in the Local Area Agreement.

How lucky we were!

A level playing field?

That’ll be the day!

More predictable Local Authority funding-levels allowed local Short Break play & leisure providers for disabled children to extend their services over the last few years, to meet overwhelming demand.

Hampshire could see all too well what our families needed, because they had really bought in to making it happen.

Like the young child tentatively creating a house of building blocks, the Local Authorities have handed to the providers of play-schemes block after block, saying “Build it better, build it higher, build it bigger for more children”

They understood what a difference short breaks and respite care made to our lives, because they asked us, they listened to us, and we told them in no uncertain terms.

They still have that knowledge – and our needs haven’t changed.

Knowing all that, they are now threatening the precious edifice with the wrecking-ball, which will demolish the much loved house which we all helped to create.

And then they ask us how we want the replacement building to look, bearing in mind we can only rebuild it using one third of the blocks!

67% Confirmed Budget Cuts in Short-Breaks, and no negotiation?

The game setters set the rules.

And this, of course, is morally repugnant.

Child’s-play?

"It's just not cricket"- (as Sir Henry Newbolt might have said)

Support our team- Please sign the petition…


http://chn.ge/1qNs6MA

Pot-Holes and Craters

You decide to buy a new car.  You calculate your budget and choose accordingly. It finally arrives, all shiny and new.  There is joy. You start driving it, pleased with your choice. You hope it will last you for a good few years…

You hit a pot-hole and something crunches…you know how bad you feel when that happens? Something’s not right. You get it checked out. Simple. Cause and effect. Claim on the insurance (it’s what you pay for) and it’s working properly again. A bit annoying, but ultimately fixable/replaceable.  And while you’re waiting for it to be fixed you can walk, take a bus, go by train, get a lift. What a disappointment. Anyway, you’ll buy another car in a few years’ time, put it in for part exchange, and it will be someone else’s problem by then.

You can buy a new car when yours is damaged, or get it fixed, and someone else might pay the bill.

You decide to start/ extend your family. You plan carefully. You check your finances. You wait. The baby finally arrives, all shiny and new. There is joy. You start the relationship. You watch as the baby grows, seeing which side of the family your new arrival takes after. Something’s not right. You get it checked out. There is no cause and effect. Or if there is, it is not fixable. Or if it is fixable in theory, it will be years (and millions of pounds worth of research and testing and endless lobbying and public funding) before your child, by then a young (or even old) adult might be fixed.

You can’t fix your child when he/she is disabled - you can’t take him/her back and say “I want a new one- this doesn’t work properly” however much we parents of disabled children may sometimes feel we want to (and then feel guilty about thinking it). You can’t trade in the disability, which you hate, because you can’t separate it from the child, whom you love.

The early years of the “love/hate” emotional see-saw, like constant craters in the long road of life, can be evened out a little, to make our journey a little smoother. To keep us functioning as parents and carers, our children can access play schemes, and have short breaks where they can have fun, and be looked after by caring professionals. The help and support of charities such as Disability Challengers, (a Hampshire Local Authority favourite) which provides play and leisure opportunities to children and young adults with disabilities, has had a positive impact on the continuing coping ability of the recipient families for many years.

But no more. Hampshire, like the rest of the country, is facing cuts in all services. 12% cuts for Hampshire roads, but 67% cuts for Hampshire’s disabled Children and Young people.

Cutting the Budgets - Unintended consequences?

Leaving the potholes unfilled means traffic has to slow down, meaning fewer accidents and lives saved, and less families facing financial ruin or potential life changing injuries.

Cars fall apart after miles of journeys which will inevitably include pot-holes. Cars wear out and break down, and can be replaced easily. Families with disabled children also wear out, and breakdown, and fall apart (70% more likely than families with non-disabled children). Taking away support for the most vulnerable in our society means families fall apart, and the bill for the repairs to families when this happens will be significantly greater than the budget saved.

Cars are consumables. They wear out and are repaired or replaced. We all pick up our own car bills. If you are really lucky, you get a company car. Families, particularly those of disabled children, fall apart. They can sometimes be repaired, but cannot easily be replaced. And the subsequent public cost is enormous.

12% Budget cut for Hampshire Roads.

67% Budget cut for Hampshire Disabled Children’s Short-breaks services.

We all share the ubiquitous pot-holes in the road. If we drive carefully we can see them ahead and take avoiding action, smoothing our ride.

Some of us have additional unavoidable hazards on our journeys, on routes not of our choosing, and leaving us more likely than most people to breakdown.  

Society exists, and taxes are collected to help and support the vulnerable in our society - isn’t that how it is supposed to work?

Our families of children and young people with disabilities can rarely find the energy to fight our own corner in the many battles we face, but our voices still need to be heard.

If you still believe that Society exists, and that it exists for the support and benefit of all the vulnerable within it, then share our battle to save our precious Short-Breaks for Hampshire's Disabled Children and Young people.

Please add your voice to our petition, which can be found at-

http://chn.ge/1qNs6MA