July 26, 2022, Irish Examiner: Cork parents fighting for access to respite care for children https://www.irishexaminer.com/news/spotlight/arid-40923749.html
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….
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 Irish Examiner states….
“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.” …
Minister for Disabilities Anne Rabbitte has promised the parents to try to remedy this.
The HSE told the Irish Examiner that it is aware of the issues related to the lack of access to services for children in Carrigaline Community Special School.
New system to allocate respite
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….
Cork Parents Unite has called for a full audit of disability services because although some €2.3bn [$2.4B] 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.” …
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.”
“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….
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.