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In an ideal world, what would good support have looked like?

(19 Posts)
zzzzz Wed 17-May-17 22:01:31

I think good support for disabled children empowers. I think it empowers the individuals who are disabled, their families, their schools and their communities. I'm feeling a little battered by life this week. I'm more and more disillusioned and bemused by the present support on offer for us.

So my question is this, looking back over your time as a disabled person, or as the parent of a disabled child,

What did help?

What didn't?

What would you put in place if you could?

What outcomes are you hoping for?

zzzzz Wed 17-May-17 22:30:12

Whoops! grin. How typical to post without finishing grin

What did help?
Ds's paediatrician helped by talking to me like an equal and supporting our plans for ds, as did the clinical psychologist. Helpful and unpatronising. Private salt helped me learn how to explain what we did to support ds in ways that made it acceptable to other professionals and get them on board (mostlywink). The biggest help has been finding people to talk to on line, here, because between us all we have ideas about everything grin and frankly it's more fun with company.

What didn't?
Assessments, and forms, and meetings suck so much time away from caring for ds. He's been at 3 different schools now, 1 was fabulous, 1 ok for some of it, and the other two really hard.

What would you put in place if you could?
I need to think about this more. I think quicker earlier diagnosis and transparent information on what support is available and how to access it would have really helped. I didn't even know what DLA was till MNSN smile

What outcomes are you hoping for?
Ever ambitious for at least some independence and happiness for us all

OneInEight Thu 18-May-17 06:40:34

Good communication at school(s) has been vital and willing to work as a team on both sides. When school has failed it was when communication broke down.

Honesty: It is of no benefit to the ds's if you minimise their difficulties. Positivity is great but not if it replaces support. ds1 has not had a good year but at his transfer review last week his teacher said he was doing well - not what we needed to make sure the right sort of support is given.

Assessments do not equal support! Wish more professionals would realise this.

Quicker assessment and support. With ds2 in particular we feel that if support had been put in place in a timely fashion then he would never have half the difficulties he currently has. Particularly for mainstream schools to be able to call in autism outreach services when an ASC is suspected rather than having to wait two years for a diagnosis.

Outcomes. I would love the ds's to be able to work and live independently. At the moment I am more optimistic that ds1 will achieve this rather than ds2. The outcome I would most like though is to improve ds2's mental health. If he is happy then so are the rest of us.

youarenotkiddingme Thu 18-May-17 18:01:06

*What did help?
When people listened to everything I had to say rather than part of it and forming their own opinions based on what they saw at that time rather than the bigger picture.
A move to a school that treats me as on par with them and with the same aim for ds. (Rather than just his parent who should have no opinion what so ever!).
Having a fantastic gp at our surgery who also respects me as ds parent and will seek advice from his consultants when she can't answer questions.

*What would help?
See that's what's difficult. Because what would help ds changes frequently. But I'd mostly say that less waiting lists! So when it's discovered he needs access to something he gets it rather than 8 months later having to pick him up from the fallout of not getting it and also deliver the support.

It would also help if so many people didn't have their own opinions on what I should be doing when they haven't ever lived with ds!

FrayedHem Thu 18-May-17 19:08:43

What did help?
DH going and sitting and waiting at the school to see the Head! And the amazing Specialist Teacher who should be cloned. In fact the Pre School Specialist Teacher was also really good too. His secondary school seem to understand him and speaking to them has been a breath of fresh air. Not having to explain every "ism" and seem prepared to work with him, rather than work at/against him.

What didn't?
At preschool level, SALT. Assessment was fine and needed for dx etc but I wasted so much time insisting on having their further input but all it did was wind DS1 up into a tizz. The Family Support Worker from the SureStart is someone who I came to realise was not the friendly support she claimed to be.
School wise, backing the teacher up too much. I let DS1 down so badly there and he really retreated away from me. Getting him back, slowly. Letting the fact DS1 wasn't making any noticeable academic progress go. It was symptomatic of him not actually being supported at all, despite having 22 hours of 1:1.

What would you put in place if you could?
More accountability for the school. DS1 was statemented to start reception, but he is finishing Yr6 with not enough work to pass the written SATs, and not enough work to be able to state where he is academically.

More accountability for the LA. They EP refused to meet DS1 for his EHCP transfer which coincides with his transition from primary to secondary. Also found out post-dating statements and EHCPs is not supposed to be done, but both DS1's statement and his EHCP were post dated. They can just dance around the law all lalalala because families are under so much strain, who can reasonably have the time to take them on?

Circular referrals. Saw GP when DS1 was self-harming etc. Told to refer to mental health service which had rejected him twice before. Eventually got referral accepted. So Psych. Psych has now written saying the GP should make a referral to Occupational Therapy for DS1 to have a sensory assessment. Contact GP. Huge form to fill out which is best that I do, as they will need a lot of history etc. Then the GP will put a cover letter saying they are referring at the request of the Psych and then we just have to hope it is accepted.

What outcomes are you hoping for?
The biggest shift for me is not for DS1 to appear to be coping, but for those around him, (and eventually him), to see the signs when he isn't and put the right support in place for him. As much as I want him to have independence I am tired of the benchmark being "passing for NT".

zzzzz Fri 19-May-17 11:41:46

Yes HOW do we remove "passing for NT" as the nirvana as the default in all thinking. It is SO negative and frankly stupid and damaging. Perhaps I should have T-shirts printed up with Autism Is Fine.

Apologies for not coming back to this sooner. I lost two humungous posts yesterday and then had to do other things (annual review...zzzzzzzzzzzz).

I think transparency is the biggest hurdle for us. If we KNEW what provision was out there, what was attainable, what was unaffordable, what had evidence backing it, what futures look like for adults now so there was time to change things it would make such a difference. It would also help if other people realised how pitifully little is actually won by all the ehcp-ing, and assessing, they could judge if it was worth it and other non-disability effected people wouldn't think "he shouldn't be here there are better places for him".

Imaginosity Fri 19-May-17 13:11:09

I feel really lucky as DS is under a multi- disciplinary team - OT, Physio and SALT. His OT meets the school regularly and works with them to make adaptions for DS. I like the fact that the OT knows what he is talking about and really seems to understand DS as a whole and knows what needs to be done. I found the whole thing so confusing at the start, before we had help, - and when the school were asking me how to help DS I wasn't sure myself.

The school have a really good attitude and seem to want to help DS to achieve as much as he is able to. I know not everyone has this experience.

Almahart Sat 20-May-17 07:36:03

This is such an interesting question and totally relevant as we have just moved from one CAMHS service to another after a terrible experience.

I wish we had been supported with clear strategies to manage behaviour at home. My dd is now very aggressive and we never had any help with her behaviour despite three years of CAMHS input. Also although we tried to keep a diary of triggers we struggled to do that without professional support

Turns out we should have had a clear behavioural management strategy and a diary all along. Obvious but wasn't done - new team seem much better though

Totally agree that passing for NT is seen as the benchmark for success.

FrayedHem Sat 20-May-17 10:48:56

I've just got DS3's dx report back. What has made me laugh is that they are claiming his speech delay is resolved from having SALT input. It's just not true! He was supposed to have some 1:1 but we couldn't make the sessions offered. When the new batch came around, the SALT did a quick assessment in clinic and said he didn't need them any more, which he didn't. So all he's had is assessments, we were given some basic advice like nursery rhymes and playing peekaboo(!). But he got to age expected level because that's he's particular development trajectory IYKWIM.

I'd also love to sit it on the training school's are given for ASD in our area. I know the professionals who have to roll it out have doubts over it's effectiveness but they don't get a choice in the format. Certainly the LSA that went on it from DS1's school did come away very positive about ASD, but it was almost to the extreme that ASD shouldn't mean a child would struggle which buys back into the "he won't rather than can't" do things. And that has been the biggest problem this school Year (6), DS1 choosing to be difficult. And schools have to pay for the ASD training which is obviously a tricky one with the current budget cuts.

youarenotkiddingme Sat 20-May-17 12:38:54

One of the biggest things that would help imo is a national costing type service. All ed pysch it etc services are government run. Whether it's education or NHS it's still government.
If the service cost the schools the same amount and all services were available it would be easier to work out what a child needs and the funding needed.

So much is focussed on costs of Ta when perhaps a resident SALT or Ot etc working over 2-4 schools and delivering interventions themselves would be more cost effective and perhaps the early intervention would be better saving in the costs later on in a child's education.

I'm thinking along the lines of the 6k thing. That pays for 12 hours 1:1. But I often think 2.5 hours targeted support with a qualified professional which could be as part of a group would benefit a child more. TAs are worth their weight in gold. But they support the child in lessons mostly rather than direct and targeted support to meet need. The meeting need is added alongside support to access the curriculum rather than a curriculum delivered to level where new skills can be consolidated.

FrayedHem Sat 20-May-17 13:07:37

When I spoke to the school about DS3 starting and his recent ASD dx the first response was "we don't have the budget for 1:1". His needs are such that he shouldn't really need 1:1, for reception/KS1 anyway. But there's an assumption there that that they already can't support him, even though they haven't met him or asked what his difficulties are. And DS1 has had 1:1 since reception but all it's really been is an extra body in the classroom to nag him, with the exception of his first 1:1 in reception and 1 LSA for 1 term in Yr5. It's actually had a really negative impact on him and he is very distrustful of school staff.

When DS3 was dx I said I couldn't see that an EHCP would be needed, but the OT said the LA are much more inclined to issue them at lower levels of support now, presumably since the change to funding. So I could possibly get one for DS3 which would then tie their school budget up more than is actually needed.

TwoLeftSocks Sat 20-May-17 13:20:55

Right now, being listened to and taken seriously by all invoked would be just lovely.

zzzzz Sat 20-May-17 15:33:44

What about after school?

Has anyone been given any info on the transfer to pip or what adult services look like?

Does anyone get offered help to go to clubs now?

What about dentists and opticians? Do you know about accessing health professionals with experience and time to treat your children?

How about opportunities to take exercise and access to help with nutrition?

zzzzz Sat 20-May-17 15:34:54

Is anyone aware of how much money the present set up costs?

Polter Sat 20-May-17 15:38:58

In an ideal world most support would be intrinsic and not extraordinary. There would be a 'can do' imperative instead of the 'prove it' demand that's made at the moment.

If we are talking about education the biggest problem is that the system is crap and everything is 'extra' rather than embedded.

The whole things needs a re-design, but until disabled people are valued it's not going to happen.

NoHaudinMaWheest Sat 20-May-17 17:11:49

Since you asked zzzzz and since it is the stage we are at I am going to talk about (have a massive rant about) transition it adult services.
'Transition is the buzz word of the moment' dd's physio said yesterday.


Transition to adult services is a total mess and once you get there you find there are even fewer services than for children.

One issue is that different services have different ages for transition.

Benefits: For PIP and ESA it is 16 but not for all benefits. Child benefit/tax credits can go on until 19 if the child is still in school or FE. Automatic free health benefits only go on until 18 though regardless of education.

Education: Education or training of some sort is compulsory until 18. But school education is judged to stop at 16 (even if the child is attending a school 6th form) and with it entitlement to SN transport and free school meals. The EHCP does have the advantage over the old statement in that there is no divide between staying in school and other types of education but colleges are more likely to charge for books and equipment.

Health: Services usually change from children's to adults' services at 18 though some stop at 16. If you are already receiving a service pre 16 the transition is relatively smooth IME. However if you need a new service between 16 and 18 you can fall into the hole of not being old enough to be referred to adult services but also not being referred to children's services because you are likely to be too old by the time you get to the top of the waiting list. Transfer to adult services is usually on your 18th birthday but you may still be in school or FE then which can cause communication and liaison problems as adult services don't usually deal with education.

Education post 18: I really only know about university education where there is actually good support once you have waded through the accessing it bit.
I have however been told (by an LA bod) that there is little point in having an EHCP post 18 as it doesn't apply to university level and nothing else likely to be of benefit. hmm again

The only services I am aware of post 18 (or that I could see looking at our Local Offer transition pages) was the buddy system. Ds had this and for him it was quite useful and could be good for those wanting to access leisure activities without parents' input. It isn't what dd needs. The OT input she does need falls between the adult/ children's services dilemma outlined above.

Those with an EHCP should have transition planning from the age of 14. Ds's was pretty useless. Either the planning was done by individual services or I did myself. DD isn't entitled to it because she doesn't have an EHCP though she does have additional needs as evidenced by her higher needs funding.

Transition to PIP is driven by the DWP. Again it is a matter of wading through paperwork. I did it with help from MN and the Benefits and Work website (sort of the adult equivalent of Cerebra). No one offered help you will be unsurprised to learn.

I think all of this is just an exaggeration of the fact that there is no joined up thinking or planning. And that parents and children and adults are offered what is available not what is needed.

youarenotkiddingme Sat 20-May-17 17:48:49

Bloody hell NH that's all confusing. So basically it's a transition that takes 3 years and you have to keep changing everything over as you get to the right age!

And absolutely polt embedded is exactly what would make sense.

Ds school have quite a number of autistic students. 4 of them run the tech drama and 3 of those have model railways as a special interest. So the school have gained funding /sponsorship to start a mode railway club which will have support embedded into it via EHCP funding but is open to anyone.
Ds is learning much more through teaching of skills through his special interests then by stand alone support.
They have about 4/5 of these specialist groups within school mostly attended by those on the spectrum. It's also meant ds has found a peer group rather than having to try and fit into the nt society at school.

zzzzz Sat 20-May-17 20:24:18

NHMW shock that looks worse than I thought, and frankly mind boggling from where I am (12, so not many years to get up to speed).

blaeberry Sun 21-May-17 18:20:31

In an ideal world I think very little support would actually be needed! The support has to be in place is to cope with the less than ideal nature of the world.

Assuming a less than ideal world, then I think communication is a biggie and when I say communication I mean listening to and taking on board what parents and professionals say and acting on it.

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