Mumsnet campaigns update/SEN Green Paper

[RowanMumsnet]

Hello all,

Thought some of you might be interested to know that KatieMumsnet and I met up with the people from Every Disabled Child Matters this week to talk about next steps for the respite campaign, as well as the government's [[www.education.gov.uk/publications/standard/publicationDetail/Page1/CM%208027
Green Paper on special educational needs]], which was released this week (already being discussed here and here).

EDCM told us that they've already had responses from about 50 councils on the respite campaign, and others are still coming in. We're aiming to release the results of the survey in early April. If you haven't already done so, do please email your local authority to ask what they'll be doing to fund respite care. We'd love to get a response from every local authority, but we can only do that if they all get emails!

It would also be really useful if you could use this thread to post up your own recent experiences in accessing (or trying to access) respite care. Local authority budgets are very complex, so one of the most useful things we can do is provide on-the-ground testimony from families using these services. Are you seeing improvements in your area, or are things getting worse (or just staying the same)? How is your situation compared with how it was this time last year? These questions will be particularly relevant from April onwards, as local authorities implement their new budget plans.

On the Green Paper, EDCM's response is here. Do please post here or on the other active threads letting us know what you think.

Thanks,

MNHQ x

Re: respite - we've actually invited Social Services into school to discuss this (SLD/PMLD school so every family has respite needs) and they did their best to clarify a very messy situation, bless them. So I've got an overview for some ninety-odd families.

At a high level, the problem seems to be twofold: significant and worsening inequalities in provision, and uncertainty about funding.

Inequalities of provision have been creeping up over the last few years, mostly because LAs are allowed to allocate resources according to need but not to take away resources if already allocated. So kids of 17 or 18 who entered the system when high need cases were rare get good provision. Kids with similar or higher need who are recently diagnosed get far less and have far more bureaucratic barriers to getting it; processes are complex and confusing and not always consistent. The vaunted CAF, for instance, is actually a barrier to getting respite because it slows down the process without gathering enough information for Social Care to act on - 6 months delay. The policy of indirect funding of respite via charities etc has increased provision on paper but made it less reliable and even more unequal: some families get no respite because each of the myriad providers think it is someone else's problem, or because they set different thresholds for access, or because booking priority is given to kids in care.

The loss of Aiming High funding, no ring-fencing for its successor and the ongoing programme of cuts both nationally and in LA budgets means many respite schemes still aren't sure whether they have funding from 1 April and if so, how long for. So providers can't offer forward bookings and families can't plan and book breaks away: it's quite possible that come the Easter holidays there will be respite available and unused and respite funding wasted as a result. Aiming High funding has been used to provide respite via extended hours at school - hard to think of a more cost-effective way of supporting this group of vulnerable high-need children in a safe environment - and if we lose that, the impact on families will be huge; there is no equivalent provider. As far as I'm aware we still don't know if that provision will be funded next month.

That's very interesting r3dh3d, thank you.

I'm going to our local Aiming High For Disabled Children.....'Update' Day for parents and professionals....this Tuesday.
I wont post it all on here but I've downloaded and studied as much as I can about the ' £800 million ' and I've done the same with the good practise guide from the NHS for partnership working re direct payments..etc..and the Office Of Public Sector regs. re LA's duties etc etc......

I'm armed with all this and more and typed out my questions as they have only alloted 15 minutes for Parent's Q/A's. I'll give the 'Panel' and some Parents copies in case I dont get chance to ask anything....

As Liverpool had drastic cuts to their budget...my BIG question is of course re the non ring fencing of the 'short breaks money' and how will our LA ensure that our children and families receive the short break money.. I also want to know how, as it will be their duty, they intend to inform us of all available options for short breaks etc....

This is only a brief outline of what I'm asking, I've covered it on 2 sides of A4, for them to read....

I need to ask this for myself but also for many families who for one reason or another may not be able to, but still need answers..

No doubt they will fudge around my questions..But I want them to know that we Parents, 'know' what the LA's duties are and that they are accountable to us.

Do you have any more quick suggestions for me ? I need to know, if yo have before Tuesday please.

Thanks, and keep up the good work xx