Battle for therapy funding

[Boolas]

Hello all, I would like to hear from anyone else struggling to secure funding for the vital therapeutic support that their child needs. We are currently entering the second year of battle. Our local authority took 6 months to agree to fund last year's package (with ASF match funding) and are now saying that they will not fund anything beyond the fair access limit of £5k, which lets face it hardly scratches the surface. Our two children have very high needs and need very complex intensive therapy. If they don't get it I seriously think it is against their human right to a family life (and ours as their parents). What are other people's experiences of this and do you have any advice? We are seriously considering looking into legal action, if only we could afford to pay for it. Many thanks.

Sorry to hear this. We have been turned down for the ASF altogether as DD didn’t meet the criteria! She’s adopted and experiencing difficulties relating to trauma…the whole system is rubbish in my view.

Completely rubbish and it’s failing some of the most vulnerable children in our society. Can I ask if they gave reasons for why yours was turned down?

I’m amazed by this, I genuinely have not heard of any adopted child being refused access to the ASF. Personally, I wish agencies weren’t the gatekeepers and that we could apply directly as parents, in the same way that we can for DLA/EHCPs etc.

The issue with ASF is that it only funds a specific set of therapies.
@Boolas
How far up the food chain on your LA have you gone?
If you haven't already done so I would be writing to the Head of Service and the Chief Executive, also the Cabinet member in the LA responsible for children's services, I would mention in your letter that you are seeking legal advice, even if you haven't yet. LAs may shift to avoid legal action. It never hurts to let them see that you are aware of your legal rights and that you are prepared to exercise them.
I'd also go and see your local councillor.
Quite often officials will shift quite a lot if there is an elected member on the warpath

Does anybody know if it’s possible to apply to the ASF as a parent and obtain match funding whereby the ASF pay half and we as parents pay half as opposed to the local authority? Not that we want to do that or are even able to in our current circumstances but we want to know if it’s possible. Thanks.

Last time we went high up the food chain and it didn’t really make any difference. We also had our local MP Theresa May sending letters to the LA! As well as the Children’s Commissioner. The LA just ignored them!

@Boolas

No you can't apply directly.
I work at the DFE and run our adopters network, this is one of the things we have lobbied the policy team about, but we haven't seen any signs that this might change.
I think the Children's Commissoner is useless - no real power
Have you contacted the Adoption UK helpline ?

I tried yesterday but they haven’t got back to me. My experience of them in the past was that they were pretty unhelpful. We’re trying all sorts to try to put the spotlight on the issue but to be honest nobody seems interested.

@Boolas , it would be helpful if you could give us the type of issues you are dealing with and the types of therapies you are accessing, so we can all get our thinking caps on. My eldest DD has a number of disabilities as well as attachment issues and I have learned to access funding/support from charities and organisations directly related to each disability. For example, my DD1 is registered blind and there are a few specific charitable organisations that will help fund specialist equipment and opportunities for her to access social groups etc.

I’m genuinely shocked by this but I do think that the ASF has been a gravy train for less-than-scrupulous providers in the adoption field; it’s funny how every single package is therapy now costs £5K!

We have twin daughters, both with physical health issues too but these don't really affect their everyday life. They both have developmental trauma and a disorganised attachment style, along with sensory issues. If they were assessed tomorrow they would be diagnosed with ASD and ADHD, but they won't do this while they're still addressing the trauma as the traits overlap. They are not currently in education due to a serious safeguarding concern at their previous primary school. They have EHCPs and have been recommended for specialist provision, but there is no suitable provision for them. We can't home school as it is totally incompatible with therapeutic parenting. They are on the 97th and 99th percentiles for low self esteem, among adopted and looked after children. And they have depression, anxiety and have been self-harming. We deal with daily violence towards us and each other. Every day is a challenge and we have been told that their needs are likely to get higher until meaningful therapeutic work can be carried out.
Last year they initially had sensory integration therapy, then since September/October this has become something called NPP - Neuro Physiological Psychotherapy, which encompasses DDP and other therapeutic approaches. Our children are only just starting to feel comfortable with their therapists and a change of provider would be hugely damaging for them, but this is what we are being asked to consider. We don't want to compromise, we want our daughters to receive the best service on offer. That's what every child deserves.
Thanks for reading, sorry it was long!

Why are you being asked to consider a change of therapists?

Given what you have just said @Boolas I think I would take legal advice

ridleyandhall.co.uk/our-team/nigel-priestley/

This is who you need!

If DDs have EHCPs the therapies should be in section F and therefore the LA must fund. You will need early reviews (IPSEA have a model letter you can use) to get their EHCPs amended. You may need to appeal in order to get the therapies included.

DDs shouldn’t be out of education. If there isn’t a suitable school there is EOTAS, you don’t need to EHE. To do this you need to request early reviews of their EHCPs as they aren’t currently meeting their needs. In the meantime the LA must provide anything specified and quantified in section F of their EHCPs and if DDs are compulsory school age the LA must also provide alternative education under s.19 of the Education Act 1996.

We're being told that we might have to changer provider because the provider we used this year is more expensive than others (because they provide a top notch all encompassing service). But changing would be hugely detrimental for our daughters who have started developing therapeutic relationships and feel comfortable in that setting, which is no small thing for our children as I'm sure you can understand! We want the best service not the cheapest. Which is what everyone should get.
On another note, the girls are on an EOTAS package, which is 3 days a week at a therapeutic farm. But they don't actually get any education. They're looking at bringing in a tutor for a couple of hours a week but haven't set it up yet. We did consider appealing the EHCP to get the therapy funding in Section F, but we were told there's around an 18 month wait to get to tribunal, and in the meantime everything would be on hold. Also, I'm not sure they would agree to put our current package in the EHCP, no doubt they would also ask for a cheaper one.
Thanks everyone for comments and advice.

The EOTAS packages aren’t good enough. If the tutoring is specified and quantified in section F it must be provided. If it isn’t you can enforce it. Start by emailing the LA’s Director of Children’s Services and threatening judicial review. Often the threat works but if it doesn’t contact SOSSEN for help with a pre-action letter. The LA must also provide a suitable, full time education, which 3 days at a care farm isn’t, you can enforce this too via the same process even if the tutoring isn’t in F.

The wait for Tribunal is around a year, but everything doesn’t go on hold until then. The finalised EHCP is legally binding and can be enforced. It is worth appealing if you still have the right of appeal or asking for an early review if you don’t in order to get the right of appeal.

A specific provider won’t be named in section F (there’s case law on that) but you could get a description of the provision that the cheaper services couldn’t provide. It isn’t overly expensive in the scheme of EOTAS provision.

If they were assessed tomorrow they would be diagnosed with ASD and ADHD, but they won't do this while they're still addressing the trauma as the traits overlap.

Theres no reason why they can’t be assessed for neurodiversity while also addressing trauma - while there are overlaps, it’s wholly possible for ASD/ADHD to be comorbid with trauma, and delaying the assessment delays the kind of support/medication they may need to help particularly with ADHD. Arguably it’s easier to get the ADHD dealt with, which would then let you see more clearly what’s trauma related because the hyper activity part of the ADHD would calm enough to see what’s under that.

Its ridiculous we have to fight so hard for appropriate supper for our kids, and that therapies are priced out of all reason. I’m in Scotland so no ASF, which in one way makes it harder, but easier in others. I’ve had to argue my point (felt like I was defending my Masters all over again), but my DD now has long term therapy through CAMHS with an excellent practitioner.

I agree wholeheartedly with @Jellycatspyjamas in her post above; there is no reason why your children’s therapies and assessments for neurodiversity cannot be simultaneous. As a parent, you can seek referral for assessment from your GP. It is too reductive when the ‘experts’ automatically label everything as attachment difficulties because a child is adopted.

There are very high heritability factors for both ADHD and autism - both in the region of 80 per cent, I believe. It is likely that a big proportion of birth parents who have their children removed have ADHD and/or autism, even if they are undiagnosed, hence the dopamine-seeking behaviours of drinking, drug taking and the ensuing chaotic lifestyles and domestic violence.

The following is from NICE:

The exact cause of attention deficit hyperactivity disorder (ADHD) is unknown but involves the interplay of multiple genetic and environmental factors that are thought to lead to altered brain neurochemistry and structure.
There is substantial evidence for a genetic contribution to ADHD, with a mean heritability of 76% demonstrated in twin studies. It has been hypothesised that several genes may interact to cause ADHD, or that ADHD may be the common phenotype for numerous variant alleles.

Environmental factors most strongly associated with ADHD are low birth weight and maternal smoking during pregnancy. Other risk factors include preterm delivery, epilepsy, acquired brain injury, lead exposure, iron deficiency, alcohol exposure during pregnancy, psychosocial adversity, and adverse maternal mental health.

My DD1 (15) was only diagnosed with ADHD and autism this year; I really wish I had sought assessment sooner but too many therapists (some of them snake-oil merchants) were adamant everything was because ‘attachment’. My DD1 is blind and has autism and ADHD as well as neonatal abstinence syndrome; each of the professionals working with her sees the issue through their own lens of expertise and learned preference whereas, as the parent, I often feel like I’m the only person managing the cumulative mass of ‘stuff’ in the overlapping centre of the Venn diagram.

@JustKeepBuilding , I’m super impressed by your EHCP knowledge; is this your professional area of expertise or have you had to learn the hard way battling for a Plan for your own child?

Given my DD1’s disabilities, it still took me three years to achieve an EHCP for her, primarily because her (arrogant) school didn’t support my Needs Assessment requests as they considered that they were meeting her needs (they weren’t). I rejected the draft plan, sent eight A4 pages of amendments to the LA SEN team and it was a beautiful day when the final document was sent through and the LA had decided to award high-needs funding. 😅

@EmmatheStageRat it started by having to learn as we went along for DS1. That was quickly followed by going through the process again for DS3. If we had listened to the LA rather than understanding the law ourselves and how to enforce our rights DS1 wouldn’t have anywhere near the extensive EOTAS package he has now and I doubt DS3 would even have an EHCP.

Since then I have helped many other parents on MN and IRL, and last year I started working very part time for a local charity supporting parents of disabled DC where a large part of the job is SEN provision.

too many therapists (some of them snake-oil merchants) were adamant everything was because ‘attachment’.

This is so true. It’s also worth remembering that while they’re doing long term therapy trying to get to the route of the trauma, they’re being well
paid through whatever route their funding comes through - while the parents deal with that Venn diagram with often limited results, because there’s other stuff in the mix. I remember my DDs therapist very tentatively suggesting ASD, because she knows my background in trauma she worried that I’d be offended or think she was dodging the issue but I’d had some suspicion that there was other issues in the mix. She’s now being assessed for ASD and FASD - entirely appropriately in my views, while the therapist works with the trauma stuff.

I wish adoption prep prepared parents better for the practicalities of getting support for our kids, instead you end up learning “on the job”. Even as someone who knows their way around it’s been a long, time consuming battle to have my DDs needs recognised much less getting the right services in place. You’d almost think it’s in the LAs interests to leave parents floundering.

Following this with interest. The fight for the right support is such hard work and soul destroying especially alongside looking after 2 children with significant trauma. We know they need help but the amount of hurdles we have to jump and the time wasted is shocking. Sending strength. I’d really like to see every child who is adopted with an EHCP.

You're so right. Every adopted child should be automatically considered for a needs assessment and I believe every adopted child should have a therapeutic package of some sort, as they would all benefit from it, regardless of their specific needs.
We have been told that the only children getting the highest packages of care are those on the "edge of care" or those on child protection plans, but that is so unethical. I'm sorry if I've already said this but how we are coping with their difficulties should not affect whether they get the support they need. If they had a physical health issue they would get the care that they needed, regardless of how well we were coping with it!
I hadn't heard of SOS SEN until someone mentioned it earlier but having looked at their website I've taken some useful stuff from it. We will certainly be appealing the EHCPs at the annual reviews, to get the therapy funding in Section F, and we will consider a judicial review if the LA panel refuse to fund the package. I now know that if we take legal action on behalf of our children we (they) will be entitled to legal aid, which could be a game changer.
This forum has been extremely helpful so thank you all.

@Boolas I would check out the Legal Aid situation; it is my understanding that Legal Aid is only available when Care proceedings are initiated by the LA? I’m more than happy to be proven wrong.

Well I'm only going off the SOS SEN website but it definitely says that for EHCP appeals and judicial reviews you can claim legal aid if you're doing it on behalf of the child. Not for the pre-action letter in the case of JRs, but thereafter. I'll be phoning them on Monday so I'll check but hopefully that's right!