Cork parents fighting for access to respite care for children
Children registered with a school in Cork under patronage of the Education and Training Board rather than a traditional disabilities service provider are no longer eligible for services like respite and home support.
Parents in Cork are threatening legal action against the State unless they see an end to what they have described as discrimination against their children based on the school they attend.
Cork Parents Unite, an advocacy group forged from anger and desperation at a lack of services for their vulnerable children, say that they have made Government, the HSE, the Department of Health, schools, and disability service providers aware that their children are not receiving services like respite because of the school they attend, but nothing has changed.
Armed with paperwork, a support dog resting patiently by the table, parents impacted by the crisis gathered in a quiet corner of the Vienna Woods hotel in Cork, for their second meeting this year on the lack of services for children with disabilities in Cork.
They say they have identified that children registered with a school in Cork under patronage of the Education and Training Board (ETB) rather than a traditional disabilities service provider like Cope or the Brothers of Charity, are no longer eligible for services like respite and home support.
Families attending this, and potentially other ETB-run schools across the country, now effectively have nowhere to turn for these services, even when their children display very challenging and, in some cases, violent behaviour.
Services like respite are only provided to children enrolled in schools operated by organisations like Cope and Brothers of Charity, which provide both education and respite.
This, Cork Parents Unite, say, is discriminatory against children with special needs enrolled in a school under different patronage.
Their children are being denied vital services because of the school they attend, they say.
While the school has done its utmost to protect and support their children, the problems have arisen because of major teething problems in the new HSE programme which sought to reorganise children's disability services, called Progressing Disability Services (PDS), they believe.
Chronic and acute under-staffing across disability services has also been a major problem.
Approximately 700 positions remain unfilled across Ireland’s 91 Children Disability Network Teams (CDNTs) which were set up under PDS to allocate and provide services to children with disabilities.
However even if these CDNTs were fully staffed, they would still remain under-resourced to effectively support the volume of children with the intensive interventions they require, correspondence from a CDNT seen by the states.
In September, the ETB-run Carrigaline Community Special School will enter its second year of operation and welcome 16 more students with additional needs, bringing the school to the full capacity of 48 students.
And now, parents are asking whether the children who will attend the soon-to-open special school in Rochestown, also under ETB patronage, will face the same issues.
“We’ve uncovered discrimination,” one parent who asked not to be named said.
“Children and families were removed from home support and respite lists once they moved to a school that was not run by the service provider.”
The new school also had no multi-disciplinary team of professionals like physiotherapists, occupational therapists, and speech and language therapists, which the students need to allow them to learn, as therapists were largely removed from schools under the HSE’s recent reorganisation of children’s disability services.
Minister for Disabilities Anne Rabbitte has promised the parents to try to remedy this.
The HSE told the that it is aware of the issues related to the lack of access to services for children in Carrigaline Community Special School.
But it said that a new system to allocate respite would be operational from September which could equitably allocate respite to all families based on need.
A spokesperson for HSE Cork Kerry Community Healthcare said: “This is a new school established by the NCSE and Department of Education.
“We in Cork Kerry Community Healthcare have had recent engagements with public representatives in relation to access to respite and therapy services for children attending the school. We are currently engaging the CDNTs with respect to scoping the needs of the children enrolled in the school.
“Unfortunately, there is limited access to children’s respite services in Cork at present due to capacity and resources. This is something which we sincerely regret.
“In the past, children who attended special schools under the patronage of a Section 38/39 [a service provider such as Cope or the Brothers of Charity] organisation had access to respite in those agencies.
“We are now working on implementing a more equitable regional respite service to children in Cork with the establishment of a Regional Respite Committee which will accept referrals from September.”
The spokesperson said that all children attending the CDNTs will be able to make an application under the new process.
“This is currently a work in progress and information on how families will be able to access the service will issue to stakeholders in the coming weeks.
“It is important to note that respite services are limited with respect to capacity and access will be based on the prioritised needs of the children and family.”
Julie Ann Cunneen, who struggles as a deaf lone parent with mobility issues, to care for her son with complex needs said that the purpose of the HSE’s reorganisation of children's services under the PDS programme was to equalise access to services for everyone. But for Cork Parents Unite, it has only served to block access to what limited services they once had.
Cork Parents Unite has called for a full audit of disability services because although some €2.3bn was allocated to disability services in Budget 2022, including an additional €105m for disability services, they say that that money is not translating into services on the ground.
“Where is the money going?” one parent asked. “Anne Rabbitte is funding failure. It is reinforcing bad behaviour.
“Someone needs to be audited to find out where it’s going.”
Cork Parents Unite said that with unity comes strength and its members are refusing to stand down until their children are granted access to the services they need and are technically entitled to.
One parent, who asked not to be named, said that she already had to take a case to the High Court to secure a suitable school place for her son who has additional needs.
“I had to issue legal proceedings to find a school placement for him. It’s like you’re conditioned that you’ll have to go to the legal system to get basic services. Everything is a battle.”
Another mother, Alison Murphy, said: “We wanted to set up an advocacy group because we feel strongly about the way children are being treated.
“It’s not just our school, it’s just not right what’s happening. I just want my son to be the best he can be, to reach his potential.”
Ms Cunneen said: “We’re lucky at least that technology has come on. From a deaf point of view, we now have a way of communicating.
“If this was 10 years ago, you’d be isolated with your child, thinking ‘they’re not getting respite, it must be something that I’m doing wrong’. Or ‘I’m not strong enough to fight the HSE alone’.
“But now we have parents coming together in a room, saying ‘your case is similar to mine, why is this happening?’ It makes you stronger. You know you’re not alone.”
“My GP prescribed antidepressants recently, they said I had ‘carer burnout’. I was very, very low. Then I was involved in the messaging with this group and it actually stopped me from taking the medication.
“It stopped me from going down that road, I felt other parents were in the same boat and we could do it together.”
A spokesperson for Minister Rabbitte said that traditionally, children who attended special schools under the patronage of a Section 38/39 organisation, like Cope or the Brothers of Charity, had access to respite in those agencies.
But now, Cork Kerry Community Healthcare will implement a more equitable regional respite service to children in Cork from September with the establishment of a Regional Respite Committee.
“This means that all children attending the relevant CDNTs will be able to make an application under the new process,” they said.
“Minister Rabbitte knows the importance of respite to children and families, and has invested heavily in Budget 2021 and 2022 to increase respite through the development of new respite services, as well as additional alternative respite models. This is an area the Minister will continute to prioritise.”
The Brothers of Charity said that children already in receipt of a respite service are not affected.
“Children who attend four of the six special schools under the patronage of the Congregation of the Brothers of Charity are eligible to apply for respite services managed by the Brothers of Charity Services Ireland,” they said.
“The available services are overprescribed. Families who apply from these schools are screened and logged and once a vacancy becomes available they are screened using a prioritisation scoring tool.
“If children on the list for screening for future vacancies move schools then under the current system they would not be eligible under current criteria.
“We identify unmet needs to the HSE for future planning purposes. Families known to us who are seeking family support respite services outside of these schools are also notified to the HSE for planning purposes.
“The HSE has advised that it is now working to implement a more equitable regional respite service to children in Cork with the establishment of a Regional Respite Committee which will accept referrals from September.”
The Cope Foundation said that it provides respite services to children from ages five to 18 at Le Chéile in Cork city. The short break house opened in 2011 and caters for children from four schools in Cork.
