who do I turn to now?

[lorryw]

Ive spent the last few minutes staring at a blank piece of paper preparing to write back to my MP.....but I dont know what to say.

I have a pile of letters from her and from the Director of adult services at my county council. We desperately need a day care provision for autistic adults. In a few years time we will have a huge number of youngsters who will need some kind of service. Nothing exists and all my letters are met with sympathy and yes they are aware but we have no money......

I have run out of energy and ideas. It seems that disabled people have no actual rights to have an appropriate service, end of story.

My son is now 21 and has a few hours from a day care service for people with learning difficulties. Hubby and I job share and have taken a drop in income to provide care. The government is pushing for everyone to have an individual budget and buy their own care, using the private sector and charities. A lovely idea for disabled people but for many (like my son) I feel it will simply lead to social isolation.

Oh well back to the blank piece of paper.....

[JsMum]

Hi I think it does take a heck of a lot of energy to fight for our children but your fighting for others too, you are going to hit brick walls as it does with helping one child, but it does sound like you are driven to help others in the future,

 

I know that we need help Now the future may not be too great if we struggle on the way we are now, I have become so desperate for support I am now using my sons DLA money to pay for services in the home, direct payments are frozen and we may not meet the needed criteria.

 

Theres nothing for the children the parents and the adults its really dire, we are in the year 2006 yet it feels like the situation should be in the dark ages, because even in the late 1900s its never as bad as it is now.

 

I recommend that you get a dicta phone and talk to it as you where talking to the MP in person, and then just explain the situation and what needs to be in place Now, not tomorrow or the future.

 

Then write it down when you have said enough.

 

Can you meet your MP and have a meeting with him?

 

JsMum

[lorryw]

Hi JsMum,

Thanks for the dictaphone idea, Ill have a go with that.

You are so right about returning to the dark ages. I dont understand why charities are expected to pick up the pieces, it seems very Victorian. Our local council is only providing help for those regarded as critical, how can that be legal? What will happen to those who dont meet the criteria? Every single letter I have had from the Director of adult services has referred to finances and lack of money and we are the 4th richest country in the world.

Im afraid I find it all too depressing.

[oracle]

What you have said here sound good to me - but I fully understand why you think that although it sounds good it may not be enough to get what you want I totally agree with what you are saying pushing budgets onto individuals to arrange their own care sound wonderful in theory, in reality well that's the real world and politicians know very little about that.

 

The one thing that has struck me about the new NAS 'make school make sense' Campaign, which I know has nothing to do with what you are talking about, is making use of your press local and national. In the pack that I have from them it's telling you how MP's do not really like to see their constituancy splashed all over any paper, unless it's a happy isn't this wonderful story. It's not good PR for them if it's a look at how we bad things are story. If there were a few families who would be happy to do this, and I know it's not something many people are happy about doing, it may just be the kick start you need for your MP to really do something. It's just a thought but I know that when we get stories in our local paper especially if you can get the paper to back you then it can make things happen. Our local rag has backed us because there is now more than me being very vocal. It all comes down to 'One Voice' which is what I have been saying for years.

 

Oracle

 

PS you have local TV too remember

Edited September 12, 2006 by oracle

[oracle]

Duplicate post sorry

 

Oracle

Edited September 12, 2006 by oracle

[lorryw]

Thanks Carole,

I think approaching the local press would be a good option. I would be ok with it but I dont think other parents would be happy. Ive suggested it in the past but they hated the idea. I will bring it up again as a last resort.

Lorainex

[bramblebrae]

Thanks Carole,

I think approaching the local press would be a good option. I would be ok with it but I dont think other parents would be happy. Ive suggested it in the past but they hated the idea. I will bring it up again as a last resort.

Lorainex

 

 

Sorry to barge in but I was just wondering why they didn't like the idea of going to the press?

 

Lorraine

[lorryw]

Hi Lorraine,

Im not sure really, I think its just a reluctance to having their lives put under a spotlight.

Loraine

[hev]

im going to use a dictaphone in future when im stuck with writing letters,never thought of that one,also think local press is good idea,they are always looking for stories arent they,good luck with it all

[oracle]

Im not sure really, I think its just a reluctance to having their lives put under a spotlight.

Loraine

 

It is difficult to make that decision but I know that it can work. It has here with one of our Special Schools - well at least it's given it an extended life. One parent was brave enough to go onto local TV with another just sat next to her for support. The LA did a 360 U turn and have now extended the life of the school for the foreseeable future and we attened the Council Meeting where that was snactioned so they can't just go back on it without going back to the Council. They did this without a fight or even a word for that matter. Of course it had nothing to do with the TV coverage

 

Spotlighting how difficult your lives are would raise their game I have no doubt of that. And without doing that they will continue to do what they are now nothing.

 

Sorry Loraine - ever the militant that's me

 

Oracle

[lorryw]

Hi Carole,

You are quite right LA hates any unfavourable publicity.

I am so cheesed off by the whole stinking lot of them. Cheered slightly by a letter from my MP yesterday. She had been told of our involvement in a council project. Apparently our input is invaluable. We have had one visit from a very young and glamorous Social Worker who presented us with a cheque for �200 to buy some care in the summer holidays. She then presented us with a disposable camera to take pictures of our son enjoying said care. It was so patronising I had to leave the room. I pointed out that the whole problem was lack of autistic specific trained staff. She couldnt answer and couldnt wait to get out of the door. Made lots of promises as she left but didnt bother to get back in touch.

We are off on holiday tomorrow and hopefully will return with my loins firmly girded for battle.

Thanks for listening!

Love Lorainex