Parents United for Children’s Health

13/09/2026

It Only takes a few minutes!! Please fill this survey in. Feedback is vital for change!

‼️ HELP ‼️ Please tag ur MLA to share this 🩵

We have had a huge response since sharing this survey yesterday. Thank you all so much. This will be open for a couple of weeks. The responses have been fantastic please keep them coming. This really is vital.

Can you help by asking your MLA to share this? Give them a tag in comments. If we want change we need the support to push this forward. Our voices need to be heard on matters that are crucial to the future of our young people, adults and elderly with complex disabilities ⬇️

Parents and carers in Northern Ireland, we want to hear from you.

If you have a child or young person with special educational needs or a disability, and you have dealt with a Health and Social Care Trust about them, please take three minutes to tell us how that went.

The survey is anonymous. We do not ask for your name, your email address, or anything that could identify you or your child. It asks what you were told, whether different professionals said different things, whether referrals actually happened, and whether you felt able to raise a concern without it affecting your child's care.

It is open to every family, whether your child is at school now or left school years ago. What happened in the past counts just as much as what is happening today.

Everything families tell us will be brought together so that these experiences are on the record, rather than treated as one-off cases.

Take the survey here: https://forms.gle/7TNYXVf55kWpYVoZ9

Or scan the QR code in the image.

Please share this post. The more families who take part, the harder this is to ignore.

08/09/2026

PLEASE SUPPORT!!! LETS FORCE CHANGE FOR OUR CHILDREN SO THEY CAN BE HEARD IN THEIR OWN WAY!!

https://www.change.org/p/love-needs-no-words-%EF%B8%8F-a-lifelong-communication-access-framework-for-northern-ireland?recruiter=941794256&recruited_by_id=449947f0-43f7-11e9-ae94-dbac5584b4c0&utm_source=share_petition&utm_campaign=psf_combo_share_initial&utm_term=8ae5a385151048fba7c1483b196d865a&utm_medium=facebook&share_id=WBSLb4z5YC&fbclid=IwVERDUAUM8vFwZG9mAWV4dG4DYWVtAjEwAHNydGMGYXBwX2lkDDM1MDY4NTUzMTcyOAABHtxKVn1eo7IvfD0l1gxEbCbCrrNfn8MuvVuKpVZphCLzWePahDg9WBaRgHsr_aem_jFdL0vbEz04LG84QodArfA

LOVE NEEDS NO WORDS ❤️ — A Lifelong Communication Access Framework for Northern Ireland

18/05/2026

Stonger together!
We refuse to be ignored!
Our loved ones DESERVE BETTER.
Time for the NI government to do better
JOIN US and tell them

Tomorrow 12noon Stormont
See previous posts for more details

17/05/2026

Walking into next week like….

Stormont be ready 😉

Monday 18th May at 5pm Post 19 SEND Debate, aim to be there for 4.45 to be seated. Times can vary but fingers crossed it won’t be delayed. See previous post for more details.

Tuesday 19th May 12pm onwards Stormont
Stronger Together Rally

We join our friends Parents United for Children’s Health, Erin McAllister and many more as a call to action from our government here in Northern Ireland. Please come along and support. All welcome. We need to stand shoulder to shoulder for all our children and young people with disabilities. Although our campaign is for Post 19 complex needs we believe no one should be left behind and so we continue to push for a Future For ALL.

I even have ponchos in case it rains!

See you there.

12/05/2026

WHO WILL JOIN US?
1 WEEK TO GO!!

25/04/2026

PLEASE LISTEN
PLEASE JOIN US
PLEASE SHARE

ACT NOW!!!

See previous posts for more info!!

FOR SECURITY REASONS IF YOU ARE ATTENDING YOU MUST FILL IN THIS GOOGLE FORM (please respond by Friday latest but more can join if they miss this date as long as form is filled in)

https://docs.google.com/forms/d/e/1FAIpQLSeYAgVWyNATH0imQVfpAiL6EiDPoDw0TPwmugi3EtLrSfBdpA/viewform?usp=publish-editor

24/04/2026

Are you a SEND parent or carer? Are you angry? Hurt? Feeling forgotten and isolated by the sheer lack of commitment by the government to services?
PLEASE SUPPORT THE RALLY. TODAY IS THE LAST DAY TO GET THE PAPERWORK DONE. WE NEED AS MANY OF US AS POSSIBLE. LETS STAND TOGETHER!!

This is your one opportunity. Join us on Tuesday 19th May, 12pm at Stormont. We need numbers to make an impact.

Please remember to fill in the form if attending!

https://docs.google.com/forms/d/e/1FAIpQLSeYAgVWyNATH0imQVfpAiL6EiDPoDw0TPwmugi3EtLrSfBdpA/viewform?usp=publish-editor

There are over 1.3k of us in our group alone not including the others joining, imagine if even a fraction of us turned up!!!!

An oversight committee examining how Stormont ministers are spending money on transforming public services has expressed 'concern' at how the scheme is managed.

UTV has found evidence just 4% of the £230million fund has been used.

Story here - https://www.itv.com/news/utv/2026-04-21/revealed-stormonts-unsent-millions

22/04/2026

PLEASE SUPPORT THE RALLY ON MAY 19TH. PLEASE TRY TO BE THERE. THIS GOVERNMENT NEEDS TO SEE HOW ANGRY WE ALL ARE, TOGETHER!

‼️ Please share ‼️

Young people and their families are in crisis. Our government needs to start planning and enabling services for those that need it

Post 19 SEND is in the PfG we need this to be made a priority. As much as I am all for early intervention if there is nothing out the other side for adults we need to address that massive cliff edge.

Education pathways for those with complex needs will not be the same as mainstream peers. This has to be addressed. Complex doesn’t mean forgotten or left behind.

At 19 for those leaving special school with complex needs they require a care plan. One that can identify needs, allowing for every department to work together instead of in silos and this making our young people the priority. Needs for medical/health care checks, housing, respite, residential, controllership, transport…the list is endless and yet being ignored. Lifelong need.

We have no system at present which means no young person/adult centred approach. Our children grow up to become adults, they grow old, complex needs do not change. There’s a population of young people and adults with no mental capacity, they need support. They need a plan. They need CARE. Lifelong care.

We need a plan to know when we die our loved ones have a system and be tracked. We need a future, one with choice. We need a SOLUTION.

This issue is never going away in fact as the numbers increase the reality is driving us deeper into crisis 💔

This is what we are fighting for. This is why we desperately need your support. Keep tagging your MLAs, keep sharing our posts. Keep using your voice.

We are decades behind. How many adults are currently off the grid with families struggling to care for them? There’s no data. There’s no system. There’s NO PLAN. We as Caleb’s Cause want to change that. Will you help us? 🩵

22/04/2026

LETS COME TOGETHER!!!
STANDING UNITED FOR SEND - ACT NOW!
All as one, we take our stand; justice for SEND across this land!

When? TUESDAY 19TH MAY 2026 AT 12PM

Where? STORMONT ESTATE, ENTER VIA PRINCE OF WALES GATE - MEET AT RAILINGS INFRONT OF STORMONT

Why? FOR THE FIRST TIME, ALL LEADING SEND GROUPS/PARENTS/CAMPAIGNS ARE COMBINING TO FORM ONE BIG RALLY TO MAKE A STATEMENT THAT WE ARE NOT ACCEPTING THE LACK OF CARE FOR OUR CHILDREN ANY MORE. NO RESPITE, LONG WAIT LISTS, NO INTERVENTION, NO POST 19 LEGISLATION OR CARE PLANS, LIFE THREATENING SURGERY WAIT LISTS, LACK OF SEN SCHOOL PLACEMENTS, NO ARFID SERVICES, LACK OF ADHD SERVICES, LACK OF APPROPRIATE RESOURCES, UNDER FUNDING, CONSTANT THREAT OF REMOVAL OF CLASSROOM ASSISTANCE, SUMMER SCHEMES, CHARITIES, EARLY INTERVENTION. ACT NOW!

EACH GROUP IS ASKED TO REPRESENT THEIR OWN AREA, BRING BANNERS WITH BOLD WORDING FINISHING IN "ACT NOW" EG RESPITE CARE ACT NOW! POST 19 LEGISLATION ACT NOW! AUTISM WAITLISTS ACT NOW! SEN SCHOOL PLACEMENTS ACT NOW! FEEL FREE TO ADD YOUR GROUP LOGO!

21/04/2026

"My child can't get an appropriate SEND school placement"
"What will happen when my child leaves school, there are no post 19 care plans?"

"I can't believe the wait list length for an ASD assessment but can't afford to go private and once diagnosed there only seems to be workshops"

"My child can barely breathe but ENT surgery waitlists are years long for urgent!"

"I have no respite, I am a full-time mummy with 3 other children and no relief"

"I was declined a disability social worker as we were told we were coping fine, but I'm not!"

"ARFID isn't recognised in NI, my child is starving to death and noone is listening"

"No one will do shared care and I cannot afford the ADHD medication"

Does any of this sound familiar?

This is your one opportunity. Join us on Tuesday 19th May, 12pm at Stormont. We need numbers to make an impact.

Please remember to fill in the form if attending!

https://docs.google.com/forms/d/e/1FAIpQLSeYAgVWyNATH0imQVfpAiL6EiDPoDw0TPwmugi3EtLrSfBdpA/viewform?usp=publish-editor

There are over 1.3k of us in our group alone not including the others joining, imagine if even a fraction of us turned up!!!!