panorama programme on AS - What would you like to say...

[allsetuk]

I am currently talking to the producer of Panorama programme about how the credit crunch affects families. Is anyone here able or willing to say how it has affected them credit crunch plus having a disabled child that i could pass on to the programme.

 

They seem really interested in putting across this angle to show what if anything the government is doing to help. They are also looking for someone to be interviewed.

[Canopus]

I am currently talking to the producer of Panorama programme about how the credit crunch affects families. Is anyone here able or willing to say how it has affected them credit crunch plus having a disabled child that i could pass on to the programme.

 

They seem really interested in putting across this angle to show what if anything the government is doing to help. They are also looking for someone to be interviewed.

 

There is cause for concern that the credit crunch will decimate sales of organic food. Has anyone here cut back on organic or fairtrade food in recent months?

[Enid]

yes! feel guilty but needs must! Enid

[tsmom]

Dont really think its down to the credit crunch but one thing that really gets me re cares allowance is this.If you work in a school which gives you all the non school time with your child and earn �96 per week during term time but only �48 during holidays they only pay carers allance during the holidays as the cut off figure is �95 per week.I think it should be taken as a yearly figure.

After all if i earn the same per year as someone else and spend all holidays,ect with my child how is it fare that they get it and i cant,when their child is with childminders.

[lorryw]

Hi Tsmom,

Which County to you work for?

Im also a TA and my wages are spread equally through the year. How typical in our crazy education system that different areas have different systems.

[allsetuk]

i used to get organic food from abel and cole delivered a box every week, ive had to stop that and most other things

i feel totally backed into a corner

[allsetuk]

if i could edit the post title i would , because the very nice people at panorama have come back to me and said they are more interested in the LACK of support we are getting as parents to ASD children ....i explained to what we all go through and told them about the social services lottery and lack of help in terms of care /respite/ help /slow response times, children being discharged, lack of DLA mobility support becuase our children can walk so often get no help even though they are frightened of public transport etc. all the things that we always talk about here... it would be great if they could do a programme to help us

[allsetuk]

meant to say thats what they are intending on doing , a specific programme

[allsetuk]

The email said

we (PANORAMA)should look into the lack of support that you, and others in your position, are getting. Looking after any youngster is tough enough, but, as you say, your children need to be occupied and looked after at all times. if there are related issues which you also feel strongly about, then please do let me know

 

im thinking education issue/ carers issues/ social services and all the struggles we face and see what other issues people want to raise. specific stories would be good about the terrible struggles

[pookie170]

Its absolutely impossible to find childcare for a kid on the spectrum. I contacted my local jobseekers office a few years ago to enquire about childcare as I was fed up being on benefits, and they had NOONE on their register that would take a school age child on the spectrum. It eans that child takes up two of the total number of kids they're allowed to have in their care at any one time, but they get paid for one. Perhaps things have changed, but they couldn't help me at all. Not good enough, really.

 

Also, it's difficult to get the DX process started- there are so many reasons for this, but personally, my son's mainstream and his GP went back and forth for a while-it's their responsibility, no it's their responsibility until I wigged out completely and GP got things going with a referral to CAMHS.

 

We've been terribly lucky, I think, as far too many people on this site have had a gargantuan struggle to get the professionals involved, and to be listened to....

 

Also there ain't nothing LIKE enough educational resources out there for our kids- a supreme lack of specialist schools and/or educational professionals (teachers, aides, SLA's etc) who have adequate training in working with kids on the spectrum. Our kids are suffering for it, they often go through each day feeling misunderstood, miserable and unable to do anything about it- this is a terrible situation.

 

It would be great to see the government do something to raise awareness, as long as its well-informed and an accurate portrayal, but I don't suppose that'll happen anytime soon, so I hope that Panorama do a good job with this. Tell em to get on this forum and have a read- that'd open their eyes!

[alanm]

I posted this thread on the Beyond Adolescence page which linked to the comments on the Panorama on "Britain on the Sick", made in the run-up to the reforms of "incapacity" benefits to the new "Employment Support" allowance.

 

The 9th comment down from the man in Worcestershire, with reference to his son with Asperger and not doing well in interviews, suggested how it would also be good to see a programme about the problems faced by Adults with AS, particularly in relation to employment. As a jobseeker myself I have had such similar experience to his son.

[bid]

I would like the financial impact having any child with additional needs has on families properly investigated.

 

Quite often one parent can't work, and Carer's Allowance doesn't anywhere near cover loss of earnings.

 

I think it leaves very many families in a very disadvantaged situation compared to families with children without additional needs...this then further impacts on the financial contribution families are able to make for all their children, e.g. possible support needs for the child with additional needs, uni fees, help with housing, etc, etc.

 

I also believe many parents end up without any real financial security for their own old age.

 

Bid

Edited August 12, 2008 by bid

[CEJesson]

There is cause for concern that the credit crunch will decimate sales of organic food. Has anyone here cut back on organic or fairtrade food in recent months?

 

I too can see this happening but my personal view is that I cant afford such goods anyway. Apart from fairtrade bananas.

[Cat]

Spending your time having to prove to 'ALL' service providers that your autistic children and adults are disabled enough and actually do require provision. Pulling your hair out by the roots when you again find that you just don't tick enough boxes or worse still that you do not get to even tick their boxes as the diagnosis if AS or HFA. Being accused of adding to your children's/adults problems and impacting on their emotional well-being. And of course as has been mentioned the financial cost because we often can not work and no one wants to look after our kids while we do work.

 

I could continue but I think I have probably said enough already.

 

Cat

[Mumble]

Do they just want to know about parents of ASD children or would they like to hear from ASD adults themselves? I could give them a whole programme full ...

[aro]

We have direct payments pushed at us yet the break down of the amounts involved mean that we have to find someone who will look after a disabled child (possibly with challenging behaviour and in nappies) for around �7 per hour heaven forbid they have to travel a fair way as they don't get paid travel/petrol costs!

 

A x

[allsetuk]

I cant even get social services to return my call /email for an assessment.

 

I agree spending all your time having to fill forms in and prove that you are in need of services.

 

being discharged from the hospital when your son is 5 and told to come back when he realises he is "wierd"

 

I feel like im hitting my head against a brick wall everywhere i turn there is some sort of huge obstacle and financially im on my knees .

[CEJesson]

I get continually annoyed at the way Incapacity benefit is provided - its given to some that dont need it and some who do need it end up getting less or none at all.

 

When things happen wrongly in the benefit system it makes me feel that the money could be diverted to carers who get paid a pittance. Or could go towards childcare.

Edited August 12, 2008 by CEJesson