Calebs Cause NI

21/08/2026

Caleb’s trip to the Job Centre

This morning Caleb was asked to attend our local job centre to speak to an advisor about work opportunities etc

We tried to get an appointment online so Caleb didn’t have to go but that option wasn’t available.

We asked for a quiet room. The staff member was kind and tried to accommodate and in no way is any of this a fault of the staff. The staff member did what they could and quickly realised Caleb wasn’t going to speak as he was rocking in the chair 🥺 I’m making it clear I am not blaming the staff they were only doing their job.

However…it is the fault of a broken disjointed system. I have to ask is this really necessary? A young person predominantly non verbal who cannot answer questions, who has no mental capacity, who has recently received a Learning Disability diagnosis. Along with having to request a FIT note from our GP before this appointment was made….is this the best use of time and money?

The government say there’s no money.
I say you’re not spending it wisely.

What a waste of a GPs time and the staff at the job centre. Not to mention the humiliation of my son being marched into a facility to tick a box. It just doesn’t make sense to me at all.

I know others who have had to do this it’s not just us. If we had a centralised system where a young person is recorded and a care plan that was underpinned by laws that offer a process. Surely this would remove half of the unnecessary and stressful meetings our young people are expected to attend!

We understand as carers we need to provide evidence but is this really the best way?

What about Caleb’s choice?
What about the anxiety and stress this causes?

It’s constant for families the relentless paperwork, assessments and meetings.

The sad part is Caleb and many others don’t have a choice.

Departments are not joint up which means our young people’s lives are not either.

I am sad and a bit angry. Caleb went along said absolutely nothing and left wondering what was happening. Anxious about walking into somewhere unknown where once again his wee life is in the hands of strangers.

Tell me Gordon Lyons MLA is this the best system for the most complex young people with disabilities? Communities NI

Next step we need to now do a working capacity assessment to prove Caleb’s disability is lifelong and long term 🙈 it’s never ending!

I’m at a loss. Our government wonders why we fight so hard, well this is why because we believe our young people, adults and elderly matter. Question to our leaders…do you?

20/08/2026

Letter below sent today to our new health minister 🩵

We long for HOPE but without new laws to underpin a way forward we most definitely have FEAR.

However we will never loose hope because our young people, adults and elderly chose to keep going every single day. So we must too.

Thank you all for supporting. If you could ask our new health minister for one thing what would it be?

20/08/2026

Thank you Michelle Guy MLA for your continued support and dedication to Calebs Cause NI see message from Michelle to our new health minister ⬇️

Congratulations to my Lagan Valley colleague Robbie Butler as he takes on the role of Health Minister. A huge job with the power to make an impact on a number of important causes.

Everyone wants to see a health service that delivers, and none of us are naive about the scale of the challenges or what can realistically be achieved in a matter of months.

I am hopeful, however, that the new Minister will take a different approach to his predecessor on some important causes, including:

➡️ Calebs Cause NI who were let down and hurt at the lack of progress on care plans for those with complex needs and lifelong disabilities
➡️Cervical screening. Southern Trust. Ladies With Letters campaign who were denied a public inquiry to deliver accountability and transparency in relation to cervical screening failures that resulted in women dying
➡️Women's health - there must be a greater focus on getting waiting lists down for women living with chronic pain with no hope of diagnosis for years.

I wish the Minister well and hope we can work together constructively to make a meaningful difference for our constituents when it comes to our health service.

The Lagan Valley MLA said he takes on the role with "no illusions about the scale of the challenge". https://bbc.in/3UIgIJ8

20/08/2026

It’s confirmed we have a new Minister of Health. Congratulations Robbie Butler MLA

This afternoon I sent a letter requesting a meeting. No time to waste.

Will keep you all posted! You know me I will keeeeeeep pushing!

20/08/2026

Don’t forget about us 🩵

20/08/2026

We almost have a new Health Minister 🩵 pending official confirmation 🤣

Robbie Butler MLA this is no easy task to take on, I am very grateful for the support you have given since this campaign began. I realise this role will bring immense pressure.

I also think Robbie is a very decent human being and can make up his own mind when it comes to our campaign. I believe Caleb’s Law could be a legacy for whoever takes it forward.

There’s not a whole lot of time left in this mandate. It could be argued ‘it’s too late’. I firmly disagree. It’s never too late.

Today I will be submitting a letter to our new minister of health and asking for a meeting. I think he will be aware that our campaign will push hard every single day and that we will not give up HOPE.

Hope of a commitment to draft legislation for Post 19 SEND. Not in one year not in two or three but now.

We want a plan. Months ago I was told NO, officials advised the Minister (at that time) not to do it. No time they said. Unfortunately the Minister agreed but….

I think this is a massive missed opportunity.
There is time.
Don’t let this mandate be wasted.

Our young people are worth your time.
The crisis is deepening, action needs to come.

I will use every minute of this mandate because we have nothing to loose at this point. It’s time to stand up, show up and fight hard.

There is time. Our young people need a plan, hope for a future to be included and to belong.

Where there is political will there will always be a way…….

18/08/2026

Statement from Caleb’s Cause NI

The resignation of Mike Nesbitt as Health Minister comes at a time when Northern Ireland’s health and social care system continues to face enormous pressures.

Whatever the political circumstances surrounding his resignation, our focus must remain firmly on the people and families who rely on these services every single day.

Caleb’s Cause NI will always endeavour to keep the focus on our and young people, adults and elderly who have complex disabilities. We also need to remember the families and carers who stand beside them.

Political change cannot mean that our young people and their families are forgotten or that progress is put on hold.

We need leadership that listens and understands the realities we all face and is prepared to act. We need services that are accessible, properly funded, joined up and built around the individual not around the limitations of the system.

Our young people deserve more than promises. They deserve timely access to the right support, meaningful opportunities, dignity, inclusion and a system that recognises their potential rather than focusing only on their challenges.

Caleb’s Cause NI, we will continue to advocate for Post 19 laws and provision, especially for young people and their families. We will keep this firmly on the political agenda.

The focus must ALWAYS be on our young people. The focus must ALWAYS be on their families. And the focus must ALWAYS be on building a health and social care system that works for them throughout every stage of a person’s life because as we know disability is lifelong. We need stability and a plan to offer an equitable future for ALL.

🩵 Caleb’s Cause NI

18/08/2026

Please see link below ⬇️ interesting

The Ombudsman has begun an 'Own Initiative' investigation into how Northern Ireland's health trusts provide care to people with a learning disability.