To: NI Assembly, Department of Health

 

A Crisis in Respite Care and Family Support

Across the South Eastern Trust, families caring for children and young people with complex needs are struggling to access the support that should already be in place. Respite services are extremely limited, staffing shortages are widespread, and essential support is often inconsistent or unavailable. Instead of improving, the situation has continued to decline.

Without proper support, parents & carers are burned. In some cases, the lack of appropriate respite/support has resulted in children entering care — not because parents want this, but because the help that should have been there simply wasn’t. Families are even being told to consider residential places outside of NI.

In August 2024, a widely reported case in The Sun described a mother of an autistic teenager in Northern Ireland who said she had “pleaded for help” for two years, with no suitable support offered. Because there were no appropriate residential places available, families were even being asked to consider placements outside Northern Ireland. The article noted that her son is now under the care of the South Eastern Health and Social Care Trust. 

 

 

 

Our Story 💚

 

 

 

I’ve been asking my local Trust’s Children’s Disability Service under SEHSCT for meaningful support for my young person, who has complex needs. The support simply isn’t there — and instead of improving over the years, it has continued to decline. My young person has been on the waiting list for outreach for over a year due to not enough staff. Holiday help has declined, and crisis support is non-existent.

 

My young person previously received two nights of respite that fluctuated, but this has now been reduced to one night per month. While I am grateful for any support, it does not meet my young person’s required needs — or mine as his full-time carer.

 

Respite runs from 3 pm to 10 am the next morning. Respite is supposed to be a period of time that is beneficial to us both, but this is not even 24 hours.

 

Families like mine need regular respite, consistent staffing, and the support that should already be in place.

 

I will continue to share updates about these issues — and if any changes happen.

 

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📣 Call for Stories

If any parents or carers would like to share how the current lack of respite/support is affecting your child, young person, you are welcome to reach out.

You can remain anonymous — nothing will ever be shared without your permission.

📧 Careandsupportpetition@proton.me

 

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✅ What Needs to Change

1. Respite that meets families’ required needs — regular, reliable, and enough to meet the growing need.

 

2. Adequate staffing - For Day support,  holiday support & Crisis support.

 

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Why This Petition Matters

These are systemic issues across Children’s Disability Service under SEHSCT.

Children & young people with complex needs, and the families who support them deserve better.

✅ Please sign and share — the more voices raised, the harder these issues are to ignore.

JH