How can we make early intervention happen, well early?
What about a central funded system or minimum guarantee of specialist support? Leaving it up to LAs is not working. No LA can afford to develop really good SN provision. No LA is going to fund say ABA (autism specific) home packages. If they did we would all move there. It has to come from national government and with serious money attached. LAs can't afford to fund high quality early intervention when they are picking up the tab for lots of adults who have already been failed. We need some national programme to fund pre school & school age intervention, at least until this starts to bear fruit in lower benefits and care bills when those children grow up.
How can LA's be made to follow the rules in the SEN system ?
Do you think it is time for sanctions against LAs for obvious abuse of the system e.g. using the wait for a tribunal as a way of delaying provision / saving money? In my case the LA SEN officers went against their own professionals and imposed a cheap mainstream provision instead of a specialist placement. There was no evidence to support this. When we eventually won at Tribunal, we won exactly what the LA EP had advised a year earlier, the LA were still quids in as they had still saved themselves a year of special school fees. I meanwhile had to give up a good career to home tutor my son and remortgage my house to pay for a private EP and a legal rep to help me. Why are SEN officers - who are just admin staff - allowed to overrule qualified professionals like EP's, Clinical Psychs and SALTs anyway? Its like the medical secretary deciding on the dosage of medication or choice of operation.
How can we close the accountability gap - Tribunals very rarely award costs for abuse of the system, and usually only if a last minute withdrawal wastes costs in the last week - tribunals cannot go back and award costs and compensation for the months before that. Yet the LGO will often say as SENDIST could have issued costs they can't intervene in the SENDIST decision not to award costs. LAs get off scot-free. Presently my LA is apparently 'fighting everything' to push costs into the next financial year.
Why are LAs allowed to drag parents back to tribunal a year (or on current evidence even sooner) to try and get specialist provision won at one tribunal removed? My LA tried to call a review of my son's statement within 6 weeks of the tribunal hearing. They sent the letter requesting a review before they even issued the new statement! Can we not give Tribunal Judges powers to throw these cases out as an abuse e.g. if there is no change in circumstances and no supporting professional evidence. Surely a review within 6 weeks of a tribunal, or even 12 months, cannot be anything other than an unreasonable abuse of power and causing unnecessary stress to a family.
Why is the culture of SEN officers / LAs so dysfunctional and short sighted? If my son had gone through a windscreen and been brain damaged (rather than suffering a severe autistic regression which had the same effect on his brain) and I had gone to hospital it would have been unthinkable that: (1) I would have been berated for wasting NHS time and money (2) that I would have been told my son was a burden on the budget (3) that i would have been made to feel guilty for any care my son did get and told i was depriving other people of care as it was not 'equitable' for my son to get all this help when other people were not (4) a secretary or admin officer or non clinical manager to have decided on his course of treatment (6) to have interventions with no research or evidence base used on my son (7) to have been discharged with a severely disabled child and left to get on with it as 'i needed several months to take in the diagnosis' and not have a single call or visit from any professional until I demanded one and started the statementing procedure (8) to be bullied or personally attacked or lied to about the law or have evidence fabricated against me because I had questioned why my son was being left for months without support (9) for meetings about my son to take place without me and hidden from me, confidentiality breached between agencies. Why is all of this unacceptable in the NHS but a common experience for most of us with children with SEN?
I am worried that planned changes to the SEN system to make it simpler will mean diluting rights. The answer to less tribunals is not to take away the right to a tribunal, but to penalise the LA for denying provision improperly. I am worried the SEN green paper places the blame for disputes at parents doors for unreasonable expectations rather than recognising the very significant role LAs play in making the system deliberately complicated to outwit as many parents as possible.
I don't want a simple system, I want one that is robust, fair and transparent.
I am also really worried about the absence of independent specialist schools and home programmes from the SEN Green Paper - if we lose this gold standard of provision, won't we end up with everything being really mediocre?
How can we use data more cleverly? It must be possible to show whether the cost of specialist placements put in early e.g. at pre school age pay dividends later on, and whether cheap mainstream placements actually end up costing more in unemployment, lost wages for parents and mental health / criminal justice costs. Cheap does not mean good value. How can we use data to find out what is good value? Surely we can track children in terms of employment, mental health etc and see which placements are value for money.
How can we get the information into the public domain to show what LA placements really cost and get rid of the 'nil cost' argument. Why not publish nominal hourly rates for EPs' SALTs etc taking into account all of the costs from their pension, holidays, admin support, training, office building etc to show that independent placements are actually often very good value. Using a watered down hourly TA rate does not reflect the true cost and puts parents at a massive disadvantage when arguing for anything that is not dirt cheap.
What happened to the 2002 ASD guidelines for 15 hours ASD specialist input per week? Why was this allowed to become 15 hours mainstream nursery placement with occasional, generic, one size fits all autism outreach and SALT? Surely that was not what the guidance intended. It said specialist ASD intervention. 15 hours a week specialist provision for pre schoolers seems further away now than ever. Is anyone checking whether this model of stuffing autistic children into mainstream nurseries at 2 is actually working?
Perhaps politicians should meet some young children with SN before they decide that the best place for severely disabled children is not at home with their parents but in mainstream nurseries under a 'disadvantage' label. Anyone who has met a 2 year old autistic child knows that mainstream nursery with unqualified care staff is the last place they should be.
Now that about 1 in 100 people and 1 in 60 males is on the autistic spectrum (plus add their family and friends), don't you think its time to 'do an Obama' and produce some policies to target the autism vote?
Do you think its fair that carers of severely disabled children will lose £75 a week in tax credits from April 2012 if a couple cannot find 24 hours of work between them, even though they might be caring for over 100 hours a week. Why is care not counted as work? Why is one half of these couples expected to do the same amount of work as two people in a couple who do not have caring responsibilities. Why did Labour not campaign for an exemption for carers from this new harsh rule?
Why is legal aid for SEN cases in the parent's name not the child? Any other case for a child is brought on the child's resources. Why should parents who are just above the legal aid limit or who happen to own their house have to pay legal fees and expert fees when other children do not? I have tried and tried to find out if the new legal aid bill changes this position but no-one seems to know. What is the answer. Surely the system is similar to inquests - we don't penalise families whose loved ones die in awful circumstances by making them pay all the legal fees - there is a system to give discretionary legal aid on the basis its not the family's fault their relative died. Surely its the same with SEN. Its not our fault our children have SEN so why we do we have to remortgage our homes to pay for fees to go to SEN tribunals. Surely all children bringing an SEN case deserve legal aid (unless they have some massive trust fund of their own). Would this also not also help bring disputes down as LAs are less likely to play silly games if they know all children will be legally aided to tribunal.