Parents United for Children’s Health

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!

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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!!!!

20/04/2026

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!

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

Thankyou -

Erin representing NI Community for Parents/Carers of Children with Complex Needs

Laura representing Parents United for Children’s Health and Parents 4 Pegs NI

Alma representing Calebs Cause NI

18/04/2026

Tuesday 19th May. 12pm. Stormont.

You wanted a rally, we listened.

Standing United.

Mark your diaries and keep your eyes peeled over the coming days.

SEND groups, parents, carers, family members, friends, businesses, charities, campaigns. Uniting as one voice.

Are you ready? Let's go 💪

To be continued..

03/04/2026

Please see the post done by Erin McAllister on...
NI Community for Parents/Carers of Children with Complex Needs

So much discuasion is taking place about this idea! Please show your support!!

27/03/2026

We are really pleased that the SEN school summer schemes will now go ahead. This is great for the families and the children and it is testament to what a unified outcry can change!

We have often wondered what would happen if all different SEN/Childrens disability campaigns, both health and education came together with families to rally/protest about the system as a whole!

No early intervention services, abysmal respite provision, a real lack of understanding about what families need from direct payment support, ridiculous lengths for waiting lists plus all the issues around SEN schools and even the provision of placements and then the sheer lack of service Post 19. Sure there isnt even appropriate toileting facilities in many of our hospitals.
This is just a short snippet of how the system in place is failing at every turnaround!

We are so done!!!
We are so fed up and angry of being forgotten and abandoned by this system....simply because it cant keep up and move forward with the times.
We are so sick of having to fight for everything! We are so frustrated that its always our essential services that are targeted!

If you feel this way too and if you think a united rally/protest may help to spark change or at least indicate the sheer level of annoyance and frustration we all have...then please get in touch.

Please Tag Anyone you feel may be relevant in helping to pursue this!

Lets Fight Together For Real Change!!

Thank you

Calebs Cause NI Tracey Henry Buddy Bear Trust Conductive Education School Independent Autism Reviewer NI Parents 4 Pegs NI

10/01/2026

PLEASE WATCH!!

Watch the latest from ITV News - Coleraine schoolgirl Kayla Henry has written to the Health Minister about the lack of disabled changing places in Northern Ireland's hospitals.

10/01/2026

SUPPORT Kayla Henry AND HER CAMPAIGN!!
PLEASE SIGN THE PETITION, SHARE IT AND RAISE AWARENESS!! TAG ANYONE WHO CAN HELP!!

Imagine having a hospital appointment.
You know it is going to be super busy on the roads and its a nightmare to get parked. So you follow the advice given and have allowed at least 1 hour to get parked but your journey is also 1 hour. The clinic your attending is then running late. When you are called for your appointment, its a lengthy process and takes time. Finally its time for home and you know its going to be at least an hour to get home so you want to use the toilet before leaving as you need to go! You search for a toilet but everytime you go into a room labelled 'toilet' , nothing is in there that you can sit on or use. Your search gets to be desperate because you really need a toilet but you cannot find anywhere to get relief. You end up being wet (or worse!). So now you have to face the journey home. How would you feel?

You then make a complaint to be told.....you should have rang ahead to make toileting arrangements!!!

PLEASE GET BEHIND KAYLAS CAMPAIGN FOR A CHANGING PLACES FACILITY IN ALL HOSPITALS AND HEALTHCARE SETTINGS IN NORTHERN IRELAND.

We should not have to beg and campaign for this in 2026. Using a bathroom safely, and with dignity is such a basic thing to provide in a public service that is suppoed to care for everyone!!
It speaks volumes about how the disabled community is seen and cared for and regarded if this level of direspect continues.

Our government and healthcare system need to do better!!

https://www.change.org/p/increase-changing-places-facilities-in-all-hospitals-across-northern-ireland?recruiter=1342576361&recruited_by_id=a885b0d0-38b3-11ef-a2f9-4b4dfc3aaeee&utm_source=share_petition&utm_campaign=share_petition&utm_term=petition_dashboard_share_modal&utm_medium=instagram&fbclid=IwVERDUAPObV5leHRuA2FlbQIxMABzcnRjBmFwcF9pZAwzNTA2ODU1MzE3MjgAAR4OvoQH-rDqYB_W27ovqwEuBPtMgGghn9UfN6Wki8FIHuRmZS7VXAz-kITvxw_aem_WVDTbhlp2KuYkRYdhcIK-A

Increase Changing Places Facilities in ALL Hospitals Across Northern Ireland

09/01/2026

PLEASE SUPPORT KAYLAS CAMPAIGN!!

https://www.change.org/p/increase-changing-places-facilities-in-all-hospitals-across-northern-ireland?recruiter=1342576361&recruited_by_id=a885b0d0-38b3-11ef-a2f9-4b4dfc3aaeee&utm_source=share_petition&utm_campaign=share_petition&utm_term=petition_dashboard_share_modal&utm_medium=instagram&fbclid=IwVERDUAPObV5leHRuA2FlbQIxMABzcnRjBmFwcF9pZAwzNTA2ODU1MzE3MjgAAR4OvoQH-rDqYB_W27ovqwEuBPtMgGghn9UfN6Wki8FIHuRmZS7VXAz-kITvxw_aem_WVDTbhlp2KuYkRYdhcIK-A

Increase Changing Places Facilities in ALL Hospitals Across Northern Ireland

09/01/2026

IN 2026, ITS A FIGHT FOR MEMBERS OF THE DISABLED COMMUNITY TO GET PROPER TOILETING FACILITIES WITHIN OUR HOSPITALS AND HEALTH CARE FACILITIES!

IT IS AN ABSOLUTE DISGRACE!

PLEASE SUPPORT KAYLA!!

Watch the latest from ITV News - Coleraine schoolgirl Kayla Henry has written to the Health Minister about the lack of disabled changing places in Northern Ireland's hospitals.

18/12/2025

Its crazy that in 2025, people with disabilities and their carers have to petition for appropriate bathroom/changing facilities within our healthcare system.

Please sign the petition and share! Please Tag and Please complain. Its the only way to create change!

Increase Changing Places Facilities in ALL Hospitals Across Northern Ireland