Family Fund ask us meet MP - to put any questions to him-Ideas?

[DJAngel]

Had a call from the Family Fund tonight and they have arranged a slot next friday with Under Secretary for Children and Families Minister to talk about the experience of being a family with an SN child/ren.

They aim to have families there to bring up any issues re government changes etc.. affecting families like ours.

He's mostly interested in Education issues I think but not completely. Have thought I'd write some stuff as well as say it so any thoughts would be really useful as so many of you on here are so well versed in these issues.

Our dd is just about to start school so the statementing stuff is quite fresh in our mind but also stuff re our worries about the future of DLA, Child Tax Credit, come to mind..

Riven - if you're around there may be stuff that you said to DC when he came to your place during the election campaign that you feel need ramming home again?

Any thoughts on what would be useful to drive home to him would be very welcome..

Definitely the DLA issue, how children with complex needs are going to fare with the one off examination when in reality dx took a couple of years.

What the implications will be on cutting TAs in mainstream on SN kids....

yep-the same as Glitterknickaz has said and
because theres going to be cuts-how is this going to stand with things like holiday clubs ect[there isnt enough provision as it is]

definitely the dla examination and what qualification the examiners will have as they haven't, from what I've read, specified that the person will be a doctor. I don't get how any one person can asses dd3 when she needs to see (currently) 6 different doctors and numerous other therapists to assess her needs And the chances of getting her to do anything in a strange room with a complete stranger for 1 assessment, it's not going to happen. Do they honestly think all these children are suddenly going to perform, imo, crazy.

If I'm going to end up sitting there talking through what she can and can't do, surely that's what I put on the form? Only now someone else is getting paid, rooms are having to paid for and this is all going to cost more money. What are they hoping? That some of us will think this is going to be way to stressful to put ourselves and our dcs through and not bother going? Just the people that need it most

how hard it is to get a dc anything that is "out of borough"

how getting anything is always a fight on some level or other.

the length of waiting lists for so called early intervention.

not being given decent information and having to rely on places like this for correct info.

I could go on but as you can probably tell, am getting quite another side effect

Gosh so many things!
On education (sorry this is asd perspective) severe lack of specialist provision.
Never been any evaluation on the move to mainstream / outreach services.
Anecdotal evidence shows that children are failing in m/s and then ending up in expensive specialist placements at secondary - whereas it used to be a lot started in special and then moved successfully to mainstream.
No evidence base at all for anything.
Spending £40k on cancer drugs to keep people alive for a few weeks but not spending £40k on intensive early intervention which could mean an asd child can live a fulfilling life for 70 years, work, have a family, not be burden on state etc.
Parents having to move to areas with the few good schools
Parents having to remorgage their homes to pay for intervention which if NHS care rather than 'education' would be free.
Parents unable to work due to inadequate childcare and after school clubs
Parents having to give up work to home ed as they can't get a specialist placement
Long delays
Not doing anything until you have a dx when everyone knows a 3 year old with no speech and no friends needs intervention dx or not
Letting LAs make decisions eg on funding ABA etc which should be made by central govt / experts so choosing to fund cheap interventions with no evidence instead of expensive interventions with good evidence.
Should be list eg like cancer drugs which says parents right to any of these approved methods
Research money all spent on finding out causes and no money spent on finding out what works to help
Not putting SEN provision through the same scrutiny they would put a new drug treatment
The constant battle for everything
No counselling or support
Most of this is due to failure of every govt ever rather than new policy but its only going to get worse.
Failing to appreciate early intervention is cheaper than picking up the pieces later on
Total exhaustion
No money
Carers allowance being less than would cost to care for a dog
Impact on siblings
Depression
Stupid LA boundaries - child should be able to go anywhere eg if DS could go to school in LA where I work rather than where I live I would be able to work longer / earn more. Instead can only work from 10-2!
No Flexibility eg if paid for siblings to go to after school club would not need expensive special school transport
One size fits all model for everything

Arghhh
Sorry
Been stuck reading tribunal docs for weeks and its starting to get to me!

Definitely agree with the carers allowance. Used to have earning potential as a couple worth far more than £104 a week.

Thanks so much for all your suggestions, for taking time to respond. I will collate all these issues and hand it to him to take away as well as asking questions on the day. It may not do much good but just raising awareness of key issues with people in these kind of roles must be useful in some way..

Thanks again, will keep all posted next week after meeting if anything significant emerges from it..