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Disabled children and their families need support - join me in calling on councils to #CountDisabledChildrenIn

65 replies

JuliaMumsnet · 03/02/2022 12:34

My name’s Vanessa, and I’m backing the Disabled Children’s Partnership’s #CountDisabledChildrenIn campaign – calling on councils to invest in the support that disabled children and families deserve.

When parenting a disabled child, you find that certain needs require the sort of support that goes beyond the abilities of a parent. It can often be a struggle to access services and keep momentum going, and the impact of the pandemic has meant that services which were already strained are now trying to catch up as well.

Parents feel their children are slipping behind and not achieving their potential, and even slipping off the radar altogether since the pandemic took over. This has a significant effect on the mental health of these families due to the increased anxiety and feelings of powerlessness against an overwhelming tide.

What do these struggles look like?

My five-year old daughter, Edith, has Down’s Syndrome.

Our biggest struggle during the pandemic and beforehand was getting access to speech and language therapy.

Edith’s speech was not developing, so we were referred to our local Speech and Language Therapy (SALT) service in June 2019 when she was two years old.

The frustrations:

  • We were not a priority for an assessment for nearly a year before the pandemic hit.
  • Speech therapy was not a priority at all during the initial stages of the Covid-19 pandemic and speech therapists were redeployed. This is understandable, however this was not communicated to parents, and the service was very delayed in getting their therapists back and resuming SALT provision, long after other services had been running again.
  • After the service resumed around November 2020, we were told we were not a priority for an assessment now as Edith didn’t have an Education and Health Care Plan (EHCP) at that time – they were now prioritising children with a SALT provision on an EHCP.


I’d become frustrated and anxious from the obstacles in getting speech therapy for Edith, who was also getting frustrated by the limitations in her communication ability. So during this time, I started paying for private online group sessions with other members of our local Down’s Syndrome group.

Encouraged by seeing some progress at last, we increased this to include 1:1s as well. Private speech therapy is expensive and it isn’t easy for us to meet these costs - but we were able to find the finances for this and it brought me peace of mind that we had an alternative. Many others won’t have this option.

When we did go through the EHCP process, the EHCP team didn’t have the authority to use our private SALT report to outline provision in Edith’s EHCP, so no provision could be stated on the plan, despite the need being evidenced as a significant need.

We were at the mercy of the LA-commissioned SALT service until they deemed us a priority for an assessment. This felt like a catch-22 situation, as the SALT service were only prioritising children with an EHCP, but I couldn’t get SALT provision onto our EHCP without an assessment from the SALT service itself first.

The role of councils – do they provide hope or instil helplessness?

I believe that if we can harness the right support from councils, they can (and should) be a beacon of hope and empowerment.

This support can be mixed and is clearly inconsistent across different councils and services. Some people experience immense struggles with EHCP processes – many plans are too vague and not written with specific enough provision. There is often a backlog with reviews, and I have heard stories from other parents that services, like SALT, had been put on pause until the delayed EHCP review was completed. I was fortunate to have a good EHCP coordinator who wrote a strong EHCP and fought on my behalf to get a SALT assessment for us so the right provision could go onto the plan. This should be the model example, not the exception.

Our council involved parents in feedback sessions on the commissioned SALT service and invited us to a Q&A session with potential providers when the service was due to be recommissioned last year. This was helpful and supportive, as it provided an open and safe forum to ask questions and raise concerns, and it was very reassuring to have concerns addressed and improvements taken forward.

Other council services, like Portage and Sensory Support, can be a lifeline to parents. These services work with families to support child development and communication. Portage was something that I readily looked forward to and appreciated, as I felt it was supporting Edith’s needs and also my own in terms of having someone to talk to about concerns. Councils need reminding of just how valuable these services are to families of disabled children so that they continue to fund them.

When disabled children are under-supported it increases the gap between them and other children (as they can fall behind more quickly), and it jeopardises their future achievements and independence. From a council’s budget perspective, a lack of investment during childhood may result in more costly social care demands in adulthood.

What can we do?

In just one step, you can contact your council through the #CountDisabledChildrenIn campaign.

Tell council leaders what services you value and why they are important – with greater evidence, councils will more readily commit to continue to fund them and not scale them back or take away the support we do have.

Tell them what services need to improve, what the problems are, and the impact this has on families and disabled children so that councils will consider these areas more critically, especially around the time when commissioned services are due to have their contracts renewed.

It’s time to join together to make sure that disabled children are not side-lined at a critical time when there are so many competing priorities for councils during the recovery from the pandemic. I am supporting the #CountDisabledChildrenIn campaign as I believe we can have a strong voice together and work with councils to improve services, and give children with disabilities the best future.

Vanessa and Edith

If you have any questions about the #CountDisabledChildrenIn campaign, please email [email protected]
Disabled children and their families need support - join me in calling on councils to #CountDisabledChildrenIn
OP posts:
imip · 03/02/2022 21:18

I am a SEND parent also, and work for a disabled children’s charity. My family suffered dramatically during lock down, to the point where one of my dc almost lost their life due to crap CAMHS services. SALT provision was restricted - these are all familiar issues.

I wonder though DCP, why you are also not focussing on lobbying central give with this campaign. Yes there is wastage at local govt level, and if they spent less money fighting unwinable cases at tribunal rather than directing into provision we would help more send children, but central govt should be targeted in this campaign also. They need to more adequately fund LAs so that they, in turn, can support children. More capital expenditure grants would fund school places - this is key. It isn’t just a local council issue, it is just as much a central govt issue.

WhiteJellycat · 03/02/2022 22:07

Well to the wonderful world of SEND. The one piece of advice I would give my former self is get yourself onto the ipsea website and learn how to appeal.

You could waste years of your childs lifecwaiting for a LA to "wake up" to how they fail children. They know. Bottom.line is that are trying to provide from a empty purse. For parent who pushes back there are nine that cant. So denying service will always save them 90% funding. It's a winning tried and tested method.

Dont wait for your LA to save you. Clue yourself up on SEND law and be your own saviour.

Sorry to be so down but dont waste time trying to change policy to save your child. How long will that take? How long does your child have to wait?

Geneticsbunny · 03/02/2022 22:27

I have a child who is disabled. Our whole family have had the most awful two years that I could possibly have imagined. My son has struggled so much with the changes that have happened over the pandemic that he had a totally breakdown about a year ago and became doubly incontinent and lost the ability to talk and feed himself. I have also had depression and anxiety because there was nothing I could do to help my child. The NHS have taken months to believe that our situation was so severe and social services have been even worse. We have been waiting since July for extra respite support and still have none. This is dangerous and if I didn't have so many people checking in with me then I may have done something drastic.

Hellenbach · 03/02/2022 23:06

The past two years have been a disaster for children with SEN. School closures coupled with no therapies as well as no leisure activities have led to huge regression in children's development.
This hasn't been addressed at all.

Sadly it's true that when you're a parent of a child with SEN you have to fight. Join your local parent carer forum. They sit on steering groups with the local authority and have an influential role.

Your local SENDIASS will attend meetings with you and act as a mediator with the local authority.

I don't understand why you couldn't get salt written into your EHCP. Did your child have a salt feeding specialist from birth? That's who wrote my report.

Knowledge is power. The support is out there.

TheLovelinessOfDemons · 04/02/2022 09:43

My DS has ADHD, he was diagnosed when he was 7, he's now 10 and I haven't been made aware of any council provision. I'm assuming most of the provision is during school hours and so can't be accessed by my DS?

WaningMoon · 04/02/2022 10:59

Thanks for sharing your story Vanessa.

Another send mum here and I will definitely be supporting this campaign.

Just10moreminutesplease · 04/02/2022 11:06

Just place marking so I can come back to this when I don’t have a toddler climbing all over me Grin.

MissManagable · 04/02/2022 14:52

.

Sockpile · 04/02/2022 18:52

SEND provision has been seriously lacking for years.
My DS was discharged from S&LT aged 8 and OT aged 6. Aged 13 I lodged an appeal to get him the support he so desperately needed into his EHCP. After a private S&LT and OT assessment the NHS services were able to fit in him for an assessment and both have given him hours (not as many at the private recommended).

If your child’s needs aren’t assessed properly during the EHCP process appeal! SOS!SEN and IPSEA are really helpful.

FlipflopHatstand · 04/02/2022 21:37

In my work I focus more on digital Inclusion for people with disabilities and I'll be the first to say that the knowledge of tools and services is shocking.
Disability is often described as the biggest minority group, because disabilities are vast. From physical to cognitive, permanent to temporary. What works for one person doesn't necessarily work for another and most people working within disability services only know what they know.
Cross group working doesn't last well as it often turns into whoever shouts the loudest, you only need to look at the high court ruling making the Government's disability strategy unlawful.
It's a shambles

I understand people saying don't want for the LA, that won't help your child. You're likely to be right, but you know how hard you've had to work and fight for your child. If you can do a small thing like the OP has asked, to lobby you LA and say what's helped you and what you need you might just make it marginally easier for the next parent and child.

There is so much talk about levelling up
We need to level up for people with disabilities.
We need to unite and support, because if our children get the support they need, they in turn can go on to show others what's possible when barriers are removed and appropriate support is in place.

MylilFoley · 04/02/2022 21:53

Are we counting because they disabled children cant

SpookyMargot · 04/02/2022 22:11

@MylilFoley

Are we counting because they disabled children cant

Care to explain what you mean?
Tealightsandd · 04/02/2022 22:52

We need to level up for people with disabilities.

This.

I'm so sorry to read about the battle for deserved help your family went/is going through OP (and other posters on here).

Disabled people very much need to be levelled up - adults too (remember that disabled children don't stop being disabled at 18 and will still need and deserve help).

OP you're so right. People with disabilities should get, as early as possible, the right support that will enable them to reach their full potential and live happy fulfilling lives. Good support makes all the difference.

Thank you for the post and link. I'll definitely write to my council.

SummerWhisper · 05/02/2022 00:44

I totally support your campaign but local authorities (Labour-led) are being cut to the bone and are desperately short-staffed, so the lobbying needs to start with the government to provide funds to employ staff. It would be more effective to lobby as many MPs as you can to take this to the chamber where an early day motion could get a hearing. I wish you every success. It's horrendous that any child is left behind and doubly hard with disabilities.

Fetchthevet · 05/02/2022 08:01

It shouldn't have to be so hard to get support for your child. Good luck with our campaign Flowers

imip · 05/02/2022 09:12

It isn’t just labour lead councils though. Central govt are now doing deals with some councils to pay their SEND deficits if they adhere to stricter spending controls. I believe DfE send in advisors on how to cut costs. None of this can be done lawfully while adhering to SEND Code is Practice! I am definitely not an apologist for councils, they can do much better than they are. But central govt is saying they can only pay deficits from their future SEND funding. You can’t focus a campaign on councils without looking at central govt as well.

Imitatingdory · 05/02/2022 09:25

Levelling up care is most definitely needed. At the moment DC whose parents know the system and can advocate for them get better support.

I agree with getting provision in the EHCP, so you can enforce the provision.

Lack of funding is only part of the problem, because councils still manage to spend extortionate amounts on barristers to defend indefensible SENDIST cases against unrepresentated parents.

WhiteJellycat · 05/02/2022 11:10

Dont wait for the LA means just that. If you want to wait a whole year for annual review to put slt into your ehcp that's fine. But I didnt. I appealed and got it as soon as I needed it. What happens if the they do the same at the next AR? Do you wait till the next year?

Yes lobby but also act at the same time. Dont just wait about hoping for something that child needs now is what I mean.

Sockpile · 05/02/2022 11:27

I live in a conservative led council and the situation is dire, my particular area is extremely short on SEN officers- they quit quicker than they can be recruited!

salsmum · 05/02/2022 14:39

My DD has cerebral palsy and is wheelchair bound... she is 33 soon and the lack of services is dire I'm afraid ... no physio for 10 years, no carers and at age 59 I'm supporting my DD in her independent living apartment alone. Any help for holidays, financial help towards white goods etc for her home and basic help from charities etc all seem to have stopped through lack of funding or have cut off ages ( 16 or 19 years). My DD is my life and thankfully I'm a strong person and we have a great relationship but I quite understand that others may not be able to cope. We are the forgotten, under appreciated and overlooked by everyone it seems. I should be planning my retirement but instead I'm trying to make plans for my DD when I'm no longer around.

Tealightsandd · 05/02/2022 19:22

I'm so sorry @salsman Flowers

Your dd deserves so much better.

There is definitely an urgent need to level up disabled people - and their families.

londonrach · 05/02/2022 21:11

Can't help as such but thought I'd let let you know from the other side.. my sister was a s&Lt and now left the job a month ago in her 40s...she used to love the job and teaching and helping children but her and half her colleagues who also left in her trust due the awful stress from parents...my sister had one too many parent spit and shout at her as she couldn'tsee them as much as she like due to the amount of patients she decided to leave...her patients and her colleagues patients are not being seen as no one is left sadly. There is not enough s&lt therapist and lots of jobs. Please be kind to those who are still struggling on. Im hope my sister will return one day. Going to hid this as its very painful but wish you all the best and your actions help the children who need this X

salsmum · 05/02/2022 23:41

Parents spitting and shouting ShockShockShockdeffo not acceptable behaviour and must say when I worked as a community Carer with client with very complex needs the majority of parents were lovely.

TheCountessOfGrantham · 06/02/2022 20:37

Also a SEND parent. We were totally abandoned during lockdown and my daughter was given no work or support by her school at all. Nobody even checked she was ok. Her medical needs intensified and we weren't able to get any appointments. She had to have an emergency appendectomy during the first lockdown and they even kept her on painkillers then for hours umming and ahhing because of the guidelines and because of not understanding enough about her condition. They eventually did take her appendix out, but I had to put in a complaint to pals because the surgeons were genuinely making a case that her neuro condition comes with a lot of pain, so she could be mistaken or exaggerating about the pain coming from her lower right abdomen. Even though her temperature was sky high. They kept telling me and her she needed to calm down and realise it was just her brain playing tricks on her and trying to scare her about recovery pain and Covid risks of being in hospital. Appendix was badly infected and she needed open abdominal surgery to remove it.

Then, within six hours of surgery, a nurse came and tried to force her out of bed to walk. She can't walk without support😡😡.

I was in the parents room, she had been asleep. I heard her crying and came running back to find a nurse holding onto her wrists trying to haul her to her feet saying she was being silly! I went absolutely off my head. She stuttered and stumbled and tried saying she hadn't been told my daughter was disabled to the point she couldn't walk, but as I pointed out, she damn well knew she'd had open abdominal surgery and she was pulling her about like a piece of meat! She has a neurological condition, she has a condition which causes painful bone lesions in her joints, and this woman was yanking her to her feet when her tummy was full of stitches! I found out from the sister that the nurse had been told my daughter had a mental health condition and that I wasn't there. That's how she chose to treat a child on their own that she thought had a mental health condition!!

Cornishqween · 06/02/2022 23:57

Sadly we're in the same position.
9 yr old ds is autistic and we've had every door effectively slammed in our face.
We're applying for an ehcp due to his severe anxiety, but have of course had the La refuse to assess, so onto appeal it is.
School have gaslit us for 3 years, repeatedly telling me they saw no issues with my son, made me out to be over the top for seeking a diagnosis, when he was diagnosed school provided zero support. Later when I started educating myself on Sen rights within school I asked them to show me what support they'd put in place, they have lied stating visits from the senco weekly, never happened. They refuse to allow him to use free flowing pens or an iPad despite his motor skills being one of his biggest barriers, meaning he just wants to give up on tasks almost immediately but he struggles on. We asked to have a book where our son could write down his worries at school to help him communicate with the adults there, got the book back at the end of that school year and it had never been read Sadds had written things that just never got looked at by staff.

Fast forward 7 months and he's lost so much trust and is so anxious he can no longer set foot in his classroom. School say he has no problems still and they won't support the ehcp - I applied for it myself and on the paperwork they've written that my son is fine and their support is working. They won't refer to an Ed psychologist as they say he's not 'severe' enough to need it. I forced a referral to communication and autism team but still no word after 5 months.
Gp referred to step 2 but my son was so nervous he was mute and hid for the whole appointment. They said he was too anxious for them to help but cahms won't accept a referral unless he's trying to self harm. They now want to discharge him. How can they not see how bad his anxiety is when he's so scared he won't speak?
We have thrown as much money at this as we can afford (private diagnosis to avoid the almost 2 year waiting list and awaiting private Ed psych assessment) which were are lucky to have had as an option.
What about families that can't?? Our kids fall into the cracks,especially those that mask like my ds. Because they don't outwardly show their emotions at school they appear to be "ok". My son really isn't ok, he's growing more frightened and alienated by the day.

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