An Armagh mother of a “severely autistic” woman needing around the clock care has accused the Southern Trust of using carers as a “banking system” and allowing vulnerable adults in Northern Ireland to go without any form of adequate support.
The woman – who wished to remain anonymous – explained that her 20-year-old daughter has needed 24 hour supervision, help with feeding, dressing and self-care her entire life.
Her disabled daughter also has two siblings at home, one of whom suffers with spina bifida and the other who now acts as her sister’s primary carer.
Up until six weeks ago, her daughter had been receiving a week of care on an ongoing basis via Woodlawn House and HillView care services… however, that, she says, has now been cut and – despite being assured of a correspondence within four weeks – she continues to be left in the dark regarding the resumption of that service.
Speaking to Armagh I, the mother explained: “There is an extreme lack of care for vulnerable adults across Northern Ireland. These people have complicated needs but my daughter hasn’t even been seen by anyone in six weeks.
“Myself and my other daughter are caring for her at home since her days at Woodlawn were cut. It went from three to four nights to a full week during the summer and now she has had nothing since August 25.
“We were told that when her care days stopped they would be in contact within four weeks but I haven’t so much as even had a phone call.
“Our experience with the Trust has been appalling and this is just the tip of the iceberg. The Vulnerable Adult Team have treated us like dirt, their attitude is no good. They didn’t even mention Woodlawn or HillView to me when I was looking for care for my daughter. I found out about those services through a friend who had sourced them through research. I have not one good word to say.”
She also argues that the Southern Trust have been using family members and at home carers as a “banking system” through the Direct Payments Scheme, rather than issuing the funds for professional carer recruitment or bolstering services provided by the Trust itself.
Referring to a total which has accumulated in her bank account over a period of years, she continued: “I have £12,000 sitting in my bank account that has built up through Direct Payments. I pay around £184 towards care costs but aside from that I’m refusing to spend it.
“I have even tried to give it back to the Trust and have asked the bank to stop the payments but they said the Trust would have to do that. The Trust also said at one stage that they couldn’t take it back.
“They say they have staffing issues at Woodlawn and HillView but I just don’t see why the Trust can’t put that money to recruitment and getting staff in to the care centres to look after these adults. It’s the mothers that get the brunt. The Trust know that we would never abandon our children but if they had to actually spend one day living our lives they would see for themselves the reality.
“This is discrimination of an appalling type. There are services for higher functioning disabled adults in Northern Ireland that seem to still be running without issue so why are we the ones getting our services cut?”
According to the CarersUK website generally, direct payments for carers are a “one-off payment” given to support the carer to have some time to look after their own wellbeing.
As examples, it explains the payment could be used to “go to the gym, or pay for driving lessons or a break away”.
Direct payments can also be provided for the person receiving care, which are more commonly “ongoing payments used to employ a care worker or personal assistant to help with their day-to-day needs or for a period of respite care”.
It adds: “These payments are usually an alternative to having those services provided directly by the council or Trust.”
The woman – who receives £500 a month in ongoing Direct Payments – said she has produced bank statements to the office of MLA for Upper Bann, Carla Lockhart, who she said “could not have been more helpful” in trying to get answers.
But she feels as though representatives are just as powerless to affect real change.
She says she also requested a meeting with the Trust, local representatives and other parents of vulnerable adults but no meeting was ever granted.
The mother is now calling for answers from the Trust into why and how they can continue making payments to carers for a service, she feels, they should be providing with those same funds.
In September, Sinn Fein MLA for Newry and Armagh, Cathal Boylan wrote to the Minister of Health requesting detail on any action being taken within his Department to ensure there is a “greater consistency of autism services across all Health and Social Care Trusts”.
In response, Minister Mike Nesbitt explained: “There are significant variations in funding, service delivery models, and staffing across Health and Social Care (HSC) Trust autism services, which is resulting in inequities in access and support across different areas.
“My Department is committed to addressing these disparities and is undertaking a number of actions to improve the situation, within the constraints of the current financial environment.”
Within Children’s Services, the Department have recently launched a public consultation on a draft ‘Children and Young People’s Emotional Health and Wellbeing Framework’, available on the Department of Health website.
The Minister added: “It is anticipated that the implementation of this framework will lead to greater consistency in approaches to care.
“In collaboration with the Public Health Agency and Child Health colleagues, the Department is consulting on the development of a regionally agreed, needs-based neurodevelopmental pathway. This will enable individual needs to be assessed within a consistent regional framework and will support earlier intervention without requiring a formal diagnosis.
“The framework is designed to align with NICE guidelines and will underpin the development of a clearly defined, regionally consistent neurodevelopmental pathway for children and young people.”
Within Adult Services, the Minister said that in March 2025, the Department appointed a dedicated Project Lead for Adult Autism to provide regional leadership and focus on enhancing services for autistic adults and their families across Northern Ireland.
Said Mr Nesbitt: “An initial scoping and engagement exercise has been completed with HSC Trusts to map current adult autism diagnostic and support pathways and a regional workshop was held in July 2025 to collectively explore what can be done within existing resources to manage growing waiting lists, reduce unwarranted variation, and better meet population needs.
“To improve consistency of adult autism diagnostic and support services across HSC Trusts, my Department is currently progressing regional work to review, update, and consult on a revised Adult Autism Care Pathway.
“This work, which has recently commenced, will involve comprehensive stakeholder engagement. It is anticipated that the resulting guidance will support the standardisation of adult diagnostic, support, and information pathways across the region.”
A spokesperson for the Southern Trust said: “We encourage any patient or their family member with concerns about any of our services to contact our Service User Feedback team. Each concern/complaint is fully investigated before we send a comprehensive response back to the person making the complaint.
“Since March 2025, Woodlawn House has been operating at reduced capacity due to significant workforce challenges. This reduction in service, whilst regrettable, has been necessary to ensure the safety of service users and staff.
“Every effort is being made to recruit to vacant positions, seek support from other services and explore local alternatives for families, where appropriate. We are meeting with families impacted by this service interruption and will continue to offer any support and guidance that we can during this period of service disruption.”
The Trust did not comment on a request for the amount of funding apportioned to Direct Payments for the Southern Trust area for the year 2024/25, compared to how much money is allocated for recruitment/staffing.
