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

[JuliaMumsnet]

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]

@WaningMoon

Thanks for sharing your story Vanessa.

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

Hi @WaningMoon,

Thank you for your support! Vanessa

@FlipflopHatstand

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.

Hi @FlipflopHatstand

Thank you! Very helpful insights. Vanessa

@Tealightsandd

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.

Hi @Tealightsandd,

Thank you! Vanessa

@salsmum

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.

Hello @salsmum,

It's Vanessa here. Thank you for sharing your experiences. Sounds like you’ve seen this happening for far too long already. Those feelings of being forgotten and under-appreciated are very hard to deal with, especially when Social Care are relying on relatives continuing to provide care by themselves. Change is long overdue!

@londonrach

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< 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

Hi @londonrach,

Vanessa here. Thank you for sharing this. I agree that no one should be taking out their frustrations on the therapists, who are overstretched. The therapists should be valued as they are very much in demand! It’s the process and management of the services that needs to improve.

@TheCountessOfGrantham

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!!

Hello @TheCountessOfGrantham,

I’m so sorry to hear about your horrendous experience! Thank goodness you were on hand to intervene! I hope your daughter has recovered from her surgery and the whole ordeal. Vanessa

@Cornishqween

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 ds 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.

Hi @Cornishqween,

I’m sorry to hear this. Having support services not even see your child is struggling must feel so isolating. Not giving help until it’s a crisis seems a very dangerous approach. This is what needs to change. I hope you get more support soon. Vanessa

[quote FlipflopHatstand]@BoredZelda you make an excellent point 'Other problem is, this post has fewer than 30 responses,'
1 in 5 people have a disability. It's hard to believe that on a forum like Mumsnet so few people have experienced disability so why aren't parents speaking up?
I understand the frustration with LAs so maybe people don't want to lobby, they don't believe it'll make a difference.
We know it isn't just LAs failing, At every level people/parents/children are let down.

So what do we need to do, to give parents a voice so they genuinely feel listened to and believe by speaking up their concerns will be taken seriously?[/quote]
Hi @FlipflopHatstand,

Very good question! I can see why so many parents feel jaded. I’m hoping that getting some weight behind parents, by way of partnerships like Disabled Children’s Partnership, will unite the voices from disabled and non-disabled families to raise them higher.

If you are interested, you can sign-up to be a campaigner with me and the DCP here - support.disabledchildrenspartnership.org.uk/

Vanessa

@lambchop81

Hi, my DD is Neuro Diverse, we have been waiting 10 months for an appointment for an assessment and official diagnosis. The only support I have had is from a Teacher who is amazing. I have been to GP and LA. I have had to teach myself a lot and it affected my Mental Health as I felt I wasn't a good enough Mother for her. Together we have overcome many obstacles and learnt so much.

Hi there @lambchop81,

You are doing a brilliant job!

Vanessa

@BoredZelda

1 in 5 people have a disability. It's hard to believe that on a forum like Mumsnet so few people have experienced disability so why aren't parents speaking up?

But it's fewer than 1 in 10 children. The largest percentage (46%) of disabled people are of pension age. People don't see grandma struggling with a disability and think "what if that were my child"

So what do we need to do, to give parents a voice so they genuinely feel listened to and believe by speaking up their concerns will be taken seriously?

Sadly, the only way any disabled voices will be taken seriously is if non disabled people join the shouting. There needs to be a culture change where people value disabled people and are prepared to fight for them.

I tried so many times to get others involved. Our local authority every year did a consultation on their annual proposed budget cuts and every year they were slicing away at SFL hours. I would post in facebook groups trying to get some interest from parents to lobby the council, by pointing out that the SFLAs did way more than just look after my daughter. They do playground duty and staff the medical room, and set up for assemblies and so many other things around the school. And if they aren't there, the teacher has to take my child to the toilet, or deal with their classmate having a meltdown and that affects all children. Inevitably any who did engage would be distracted by "oh they are thinking of making me pay for music lessons" (which they can afford) or "they can't take away breakfast club" (because they need somewhere they can send their child for half an hour in the morning for £1) Never mind that I can't use breakfast club because there aren't enough SFLA hours allocated to my daughter.

We had letters a few years back about emergency budget cuts the LA were apparently enforcing on schools, and the parents in the area went absolutely mad. How dare they risk my child's education, how dare they suggest reducing the school day (by 15 minutes) to save money. How dare they talk about raising school meal costs by 10p. There were emergency meetings, parents protested the council, and the proposals were dropped two weeks later. Then, the following month they did their annual budgets, cut SFLA hours by a further 20% and nobody batted an eyelid.

I don't know how the culture is going to change but we are failing our disabled children, who will become disabled adults who need far more support than they would if they were properly and appropriately educated.

Hi @BoredZelda,

You did so well in outlining the issues that would result from cuts and how they would affect all pupils, and still parents only thought of their own individual priorities. The much higher level of impact on some individuals was clearly not considered by anyone else.

Your comments here describe perfectly the force of the tide we are having to push against just to stand up! There definitely needs to be more ways to join up the voices of disabled families with non-disabled people on a bigger scale, as individually, it’s clear we are already working exhaustively to be heard.

Vanessa

@LyricalBoudicca

Sadly, disability isn’t deemed a cool topic to be interested in. So much for an inclusive, diverse society. My neurodiverse gentle boy has only ever been invited to 2 class parties when he was in reception. No play dates ever. So much for an outstanding Catholic school which parades it’s loving community, inclusivity, multicultural profile. I’m left a bit bitter about it all. Thankfully he’s blissfully unaware. I suggest writing to your MP about SEND issues.

hi @LyricalBoudicca,

It's Vanessa here. I’m sorry to hear about this. This kind of exclusion at school is very hurtful. It’s one of the reasons (even before having a disabled child) that I’ve been a firm believer in trying to do activities outside of school to help widen their social network and make friends in different contexts.

Good point about the MPs. My own MP, however, appears to be completely uninterested in anything I’ve had to say and has so far ignored my correspondence without acknowledgement.

@creaturcomforts

Hi Vanessa, I fully support and empathise with your struggles and wish I could do more.

I worked with adults with learning disabilities before the coronavirus pandemic, before this I was aware of the lack of support and funds for the people I looked after, because I was an agency carer I worked in respite care, and day care.

All of the services that closed due to coronaviris, I found work with the elderly but it was upsetting that carers of people with learning disabilities could no longer access respite care, the day care services were cut and it seemed like people with learning disabilities were completely uncared for and unconsidered during the outbreak. They were left behind and although this reflects adults I feel angry that parents of children with learning difficulties were also disregarded..

I would support you all the way

Hi @creaturcomforts,

Thank you for your support! Vanessa

Dear All,

Thank you all for taking time to share your experiences here.

Mine is just one experience, relatively early on in my SEN journey – everyone’s situation is different and personal, but there is a common theme. And there must be many more out there who aren’t even on the internet (as @imip pointed out) who must be struggling and alone.

We may appear to be in the minority overall, but that doesn’t mean we shouldn’t be heard or that we don’t matter. So thank you again for sharing your stories, advice and support, and for demonstrating the level of impact on your families, which continues to show why change is urgently needed!

If you would like to receive updates on the campaign and get involved, you can sign-up to the campaign network that the DCP runs here - support.disabledchildrenspartnership.org.uk/

Very best wishes,
Vanessa

Thanks for replying. We are doing slightly better but still waiting for some more support. As I think others have sqidm this is not a local council issue it is a government issue. Councils don't have enough funding. This may be better framed as a campaign to provide more support for disabled and vulnerable kids who have been disproportionately affected by the pandemic and that by supporting thsea needs, the increased awareness and support will also benefit all other children who also have increased mental health and learning needs post pandemic. I have written to our local school governors basically stating this and asking for additional senco hours.

If you would like to receive updates on the campaign and get involved, you can sign-up to the campaign network that the DCP runs here - https://support.disabledchildrenspartnership.org.ukk*/

Thanks for this. I've signed up.