Can you help the charity Scope lobby for better provision of services for disabled families in the Children and Families Bill?

[FrancesMumsnet]

According to research undertaken by the charity Scope www.scope.org.uk, families with disabled children are suffering massive strain because the vital support they need isn't available locally.

Scope's research indicates that there are more than half a million families in the UK with a disabled child, and for parents it can be a daily challenge to give them the support they need. Scope says that more than six in ten parents can't get the services they need in their local area and are fighting tough long battles to find them elsewhere. The need to travel long distances to access things like appropriate schools can take a massive toll; the vast majority of parents who spoke to Scope told them that they are suffering from anxiety and stress. Half are missing out on important family time together. Some parents are finding it difficult to hold down jobs and struggle financially because of the battles to get the right services for their children.

The Government is currently putting a new Children and Families Bill through Parliament. Scope would like you to email your MP asking for them to demand that a 'Provide Local Principle' is included in the Bill to ensure that local authorities provide quality services for families with disabled children close to where they live www.scope.org.uk/emailmyMP.

If you have any experiences or observations you'd like to share, do please post them on the thread

I note that link is for people living in England, with a further link for the Welsh. Is there a similar campaign in Scotland?

No OldLady a link will not be forth coming as this is another one of those national charities that does not cover Scotland. They do have an equivalent organisation called Capability but they do not run the same campaigns at the same time, well not to often any way.

Did you know that SCOPE are heavily involved in the governments welfare programme?

They were taking workfare people to do stuff in their shops, gives a whole new twist to volunteering eh?

Done - I think the coalition's cuts to childrens services are shameful. Anything that helps improve awareness and services is a good thing in my book

I do so wish that people would realise it is not just Children that are going to be affected.
as soon as your child turns 18 you lose all the support you have built up and maybe even respite

I agree Zombie mix - I think this is a fantastic campaign, that will give families with disabled children a break. I can't imagine trying to fit in an extra couple of hundred miles travel a day in - I don't feel like I get to spend enough quality time with DD as it is. I?ve signed the petition and will be encouraging all my friends to do the same - whatever happened with workfare, it shouldn't make a difference to people's supporting this campaign.

*Zombieminx, sorry. Sleep is losing out to work and playtime at the moment

Hi

I've blogged about my own experiences as a mum to a disabled child, and why Scope's campaign chimes with me. themostynthomasjournal.com/2012/10/16/help-scope-keep-us-close/

PS. An edited version of this post will also appear in The Huffington Post hopefully tomorrow.

Done.

I am mum to autistic child. It is devastating to come to terms with. I will never forget the diagnosis date. Everytime we have a new challenge feels like that date.

The government doesn't broadcast what you are entitled to.

every day a challenge

suitable school not available. There is the Equality and Disabilty Act in place but you still have to fight for the right schools for your child and and any needs they may have.

relationships strained reactions from other people such as furious he is disabled or shunned because of it.

there is nothing local about the services we do receive.

access the services you need for them best to cope but the services were not offered I had to ask for everything and usually stumbled across still don't know if he has everything he needs.

inability to access mainstream childcare, clubs ect.

There are no SEN qualified childcare providers in my town,

No social worker from the disability team

Need decent summer playschemes offering enough time not just a couple of days here and there.

specialist childcare costs a fortune

Information from so called professionals is often lacking eg Family Support Worker - useless and didn't turn up to our TAC meeting when she said she would.

Money tight because I have to be a Carer. I lost my career when I had my disabled child, cannot have a normal 9-5 job. I love him dearly. We do not live the life of luxury.

No respite, No transport for us

very tough, very lonely people don't understand unless they are put in the exact same situation. Some people who have little or no perception of how it might feel to have a child who has some kind of disability.

the help is very patchy and hard to come by

they may have different challenges such as bullying

I could go on. If you can help us with any of the above issues please contact me.

Yours struggling,

Definitely support the Scope Campaign. I am a Mum of two children with complex special needs. Finding out that your life will never be what you expected is hard enough to come to terms with let alone having to constantly fight to get the services that your children deserve whilst at the same time feeling incredibly isolated. One of my children has to go to school 28 miles away whilst the other is 'only' 8 miles from home which means that it is very hard for them to get to know anyone locally. Also by the time they get home they are so tired and it is so late that they are unable to take part in any clubs after school. We did try my daughter at Brownies once but we soon stopped as all the other girls knew each other and her social skills aren't the best so it was too difficult. As a parent, I also feel really isolated as I dont know many of the parents from school as of course we dont see each other every day like most parents do.

The normal stuff that everyone else takes for granted is just not possible for us. So much time is taken up with appts which means that I am not able to work. The other day my son had to have an ultrasound scan done which took just ten minutes but the round trip to get there and back was 2 1/2 hours! Why it couldnt have been done at the hospital 10 mins down the road, I don't know and of course it meant a whole day off school for him as well.

Everything is a fight and when we do eventually get what our children need, we are made to feel so 'grateful' and 'lucky'. It makes me so cross that those who shout the loudest get heard but what about those who have no voice or have no fight left to get what is needed? I am an advocate, therapist, campaigner, researcher, stroppy letter writer (take your pick!) for my children, when all I want to be is a Mum. Day to day coping is a struggle and if our childrens lives can be made easier by better local support and provision then this can only be a good thing, cant it?