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]

Our LA won't easily give support hours without a CSP (Scottish version of EHCP)

Last year they didn't issue a single CSP. We were told they were pointless and didn't affect anything and the criteria is so strict. For example, there have to be 2 external agencies who give medium or high support. The LA's OT and physio depts are directed that their reporting should never note their input as anything other than low. It's all a big con.

Other problem is, this post has fewer than 30 responses, and most are from parents of disabled children. (Except the one that had a go at those parents). We've told councils they are getting it wrong, but our voices are quiet, drowned out by others insisting that non disabled kids deserve XYZ. Few of them will join this cause because they see the title of "disabled children" and think it's not their issue, instead choosing to read the post about some kid getting detention after school.

What about families that can't??

They get so frustrated they lose their temper with the SALT.

@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?

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.

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.

The lack of responses to this thread is depressing.

The largest percentage (46%) of disabled people are of pension age.

So the majority - 54% - are under pension age. Also, 1 in 10 children is a sizeable minority. And of course, however small or otherwise the numbers, disabled children (and adults) are as valuable as anyone else.

It's a shame that not enough people realise or care that they or their child is only one illness or accident away from becoming disabled.

What made things worse wrt public disintest/lack of concern and empathy for disabled people comes from the late 1990s renaming of the Department of Social Security to the disabled erasing Department of Work and Pensions. And yes, I know many disabled people are more than capable of work - although sadly too often overlooked by ableist employers, but the name change definitely encouraged an ableist society.

Anyone have high blood pressure at 6/8 week check. I had high blood pressure during pregnancy but was borderline and didn’t need medication. Iv been for 6/8 week check and it was 138/111 on both arms. He’s told me to go back on the 22nd but I’m having symptoms of the high blood pressure not sure if I should go back sooner .

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.

I know of numerous parents who have utilised legal representation to ensure the care outlined in EHCPs is delivered and not whisked away by the LA.

Part of the problem is that services and funding has been reduced over the last 10 years while demands have increased.

@xr4xhyx

Anyone have high blood pressure at 6/8 week check. I had high blood pressure during pregnancy but was borderline and didn’t need medication. Iv been for 6/8 week check and it was 138/111 on both arms. He’s told me to go back on the 22nd but I’m having symptoms of the high blood pressure not sure if I should go back sooner .

@xr4xhyx hello - I think you'll get more support for this is you post it on the pregnancy board? Definitely get in touch with the doctor if you are concerned about your symptoms?

I'm a parent of a disabled daughter and a disabled elderly mother.
One concern of mine is intimate care and the right to a same sex gp or nurse.
That right is now under threat by supposedly inclusive policies.

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

@BoredZelda your post has really shocked me, I thought my LA was bad. Not a single CSP issued and gaming the system! Have you ever thought about going to the media about this ( guessing the local MP would be useless?)

@LyricalBoudicca the hypocrisy of some schools is breathtaking, I’ve experienced similar .

I think the problem is also so many parents of disabled children are so ground down and subsequently have their own health and sometimes substance problems( this is a hidden problem no one talks about), we have all on keeping body and soul together. I receive the best support from local charities, I thinks if our local charities could do a linked up campaign it may help.

@Overdon

People aren't interested. The Scottish Government did a whole commission looking in to such issues. When discussing some specific (and horrific) incidents that parents had raised during the hearings, John Swinney's response was he couldn't understand how these things happened because he looked at City of Glasgows policies and they were robust. so these things can't happen.

Oh, and we can't be failing disabled kids because their attainment levels across Scotland had improved (from 14% to 16%)

Schools blame LA who blames ScotGov, who blames LA (and Westminster) and nothing gets done.

Same in England @BoredZelda

My LA'S SEND services recently passed their Ofsted inspection. The report talks about their strong SEND policy and planning. However, the areas for improvement all centre on poor and non existent service delivery and high levels of parental dissatisfaction. Still the paperwork looked good eh

Not sure what area you in but we have had a positive experience with speech therapy occupational therapy etc during the Panademic we had face to face appointments and zoom appointments.

We had portage appointments throughout the panademic most took place on zoom but it was a great help to us.
I've had a better experience with all the services my son needs during the panademic than I did before.
Referalls etc went through faster and even the process of being diagnosed has been much faster than before.

Unfortunately waiting lists have also dramatically exploded over the covid period to waiting up to three yrs for an ASC/ADHD diagnosis. And those waiting lists are probably subject to a lot of gate keeping also! Even private waiting lists can be up to a year. There are not enough EPs, they don’t always give decent assessments. Thing is, the underlying system in theory is brilliant. It SHOULD work. But it is chronically underfunded, SENCO quality varies dramatically. Ultimately it is central give doing the funding. They have sat on the SEND review for god knows how long. Then decent education to LAs and staff in schools. The education for LAs is there, they just don’t access it.

Golden bunny that is great, but I assume as you engage with portage, your child may have been at an age where that support would have happened anyway. Out SALT services were redeployed during covid. And again, the people commenting on this thread are obviously educated, have internet access, probably have adequate enough mental health to comment - imagine what life is like for others...

@imip

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.

Hi @imip, Aidan from the DCP here. I'm so sorry to hear about your awful experiences during the lockdowns.

You make a good point on lobbying central government. In short, we want to make the case to both - as both have a role to play. Our long-standing #GiveItBack campaign has pushed for the government to fill the funding gap in services for several years, and will continue to do so. Our #LeftInLockdown campaign has pushed the government on dedicated COVID recovery for families with disabled children. The #CountDisabledChildrenIn campaign is a short term campaign that aims to ask councils to invest in disabled children with new money released in the 2021 Spending Review by central government.

You can read more about our campaigns here: disabledchildrenspartnership.org.uk/our-campaigns/

@SummerWhisper

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.

Thank you so much for your support @SummerWhisper. Aidan from the DCP here. You make a really good point on MPs and central government. Thanks to the thousands of parent carers and other supporters on our network, we have been pushing for MPs to back calls for a better system for disabled children, and will continue to call on them for support. Over 90 have signed a public commitment for disabled children, and several have raised the experiences of families we campaign with in debates. An early day motion is a great idea, there was one last year but another on funding would be good. When the SEND Green Paper is released, we will be pushing MPs again to put pressure on government to improve services for families. Some MPs are engaged, but you are so right we need to get as many on board as we can. Please do join our campaign network if you'd like to take part in our campaigning.

Join our campaign: support.disabledchildrenspartnership.org.uk/

MPs who have signed our commitment: disabledchildrenspartnership.org.uk/is-your-mp-a-disabled-childrens-champion/

The early day motion from last year: edm.parliament.uk/early-day-motion/58360

A recent debate where MPs raised some of the problems in disabled children's services: twitter.com/DCPcampaign/status/1491425349024075784

@imip

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.

Hi @imip, Vanessa here.

I’m sorry to hear how about the dangerous impact this had on your child – it must have been very scary. There should be more services prepared to get involved well before a family reaches crisis point. I hope things are looking better now.

@WhiteJellycat

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?

Hi @WhiteJellycat,

Absolutely, don’t wait, I agree. I’m personally not one to sit back and wait for help to come. I went through several routes to try and get a SALT assessment, including PALS. IPSEA was on my radar too, before we then got a date for the assessment. As soon as we received the SALT report from the assessment, I called an early review of the EHCP straight away, under advice, and got the SALT provision added to the EHCP.

As well as navigating through these twists and turns for ourselves, I feel it is important to seek change as well. As Central Government propose changes to the judicial review process, going to tribunal to fight issues is only going to get harder – and for many families and in many situations, this is already the only option left. Reform is certainly needed across the whole system.

@Geneticsbunny

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.

Hello @Geneticsbunny, it's Vanessa.

I’m sorry to hear this. It must be so hard to see your child lose abilities he has worked so hard to gain. It takes a great toll on families. MIND.org.uk is a good website which may help with managing anxieties and looking after yourself– other parents on here may also have some ideas. It’s all too common that our own health becomes our lowest priority when there is so much to deal with. I hope you get some support soon.

@Hellenbach

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.

Hi @Hellenbach, this is Vanessa.

Yes, really good points. I’ve been to workshops held by our local SENDIASS and they were very good. And our local parent carer forum put on a feedback and discussion session with our council’s commissioning services so we could discuss issues with SALT specifically.

To answer your question, I couldn’t get SALT provision written into our initial EHCP because the NHS SALT service weren’t giving us an assessment (after the redeployed therapist went back in to SALT after initial lockdown’s we were told we weren’t their priority and they were catching up with existing provision). I went through several channels to push them for an assessment until we got success. We had SALT feeding for a short time after birth, but then got discharged as had no feeding issues. So had to be referred again later for speech. This was one of the issues I took to the commissioning services at a feedback session and they took this into account when recommissioning the SALT service last year.