CORK campaigners, who have joined forces under a new group that has been established to support parents of children with disabilities, say they are facing long waiting lists for required services.
Families Unite for Services and Support (FUSS) was recently established by Meath-based Rachel Martin, mother to two autistic children.
Speaking to The Echo, Ms Martin said that the group was set up in mid-February to connect parents experiencing similar hardships in relation to accessing adequate services for their children.
It came following her own difficulties in getting access to services for her children, aged four and eight.
Ms Martin said that after being told her son was not a priority and that her concerns in relation to his mental health were a concern for A&E, she thought she could not be the only one in her situation and decided to start the group with a goal to fight for fair and equal access for children.
“There’s so much inconsistency across the country. It’s a postcode lottery. Depending on where you are it will depend [on] how staffed the areas are, how many children rely on that service,” she said.
“Basically, there are little pockets of parents everywhere fighting in their own areas, so the idea of FUSS was to bring all those voices together and unite them because the Government are putting out little fires everywhere, so when someone makes noise, they might get a bit of service.
“But the problem is we’re all separated and we’re easy to conquer when we’re separated, and I think when we’re together it would be much harder to ignore the issue.
“Disability is grossly underfunded, and always has been. It’s not about the therapists who are doing the best they can, it’s a systemic issue and that’s what we need to focus on, it’s the system that’s wrong, it’s underfunded and it’s understaffed.”
She said that she believes those children who are accessing services are still not accessing adequate services and that getting one or two sessions per year “is still not enough for their needs”.
“There seems to be no consistency and we are fighting for equal access for every child,” Ms Martin said.
Cork Kerry Community Healthcare (CKCH) reconfigured children’s disability services to Children’s Disability Network Teams (CDNTs) under the national Progressing Disability Services for Children and Young People Programme (PDS) in April, 2021.
PDS is a significant national change programme for the provision of services and support for children from birth to 18 years of age, in line with Sláintecare and the Programme for Government.
Under this programme, Cork Kerry Community Healthcare currently operates 14 Children’s Disability Network teams (CDNTs), 11 of which are in Cork.
Each CDNT is managed by a lead agency namely Cope Foundation, Brothers of Charity (BOC), Enable Ireland, Coaction, and St Joseph’s Foundation (SJF).
A spokesperson for Cork Kerry Community Healthcare (CKCH) told The Echo that one of the primary objectives in the development of CDNTs is to “have equity of access to services for all children and their families, based on need and not diagnosis”.
Parents of children with disabilities, however, have said that issues related to filling particular roles within these CDNTs is having an effect on the services that children are able to access.
Orla Christian’s son, Michael Barry, from Blarney, known as ‘Superman — Michael’s Little Steps’ on social media, was born with a rare genetic condition called L1cam syndrome and Aqueduct Stenosis which resulted in him suffering from hydrocephalus.
Speaking to The Echo, Ms Christian said that of the services offered by the CDNT that her son uses, there was half a physiotherapist part-time, a part-time OT, and a part-time speech and language therapist when the team was implemented.
She said that she believes the Progressing Disability Services for Children and Young People Programme is “not working” and that it should be disbanded.
“It was brought out during Covid and it was the wrong time to bring it out and it’s not working and it should be disbanded and brought back to what it was in 2019, and it should be ensured that the children are getting the services that they are requesting.”
She also said that assessments from a physiotherapist should not be seen as sessions of treatment, as children will need adjustments to their equipment, such as wheelchairs, as they grow.
Ms Christian spoke of the hardships related to being a full-time carer for her son and said she even wishes she trained in physiotherapy so she could do more to help him.
“As carers, we are not even earning minimum wage. We earn less than €5 an hour and we work for the money that we earn.
“When our children are in respite, when they’re in school, we are constantly on call,” she said.
“I cannot work. I’d love to be able to do it but no employer would employ me because my child is medically complex. If I get a call from the school or respite services, which we’re currently not getting, I will have to go.
“I feel like banging my head off a wall on a constant basis that the services aren’t there,” Ms Christian said.
She added that the Government needs to look at what is happening on the ground, following a meeting held recently between parents and the Minister of State at the Department of Children, Equality, Disability, Integration, and Youth Anne Rabbitte, during which the minister promised a meeting with the principals of Cork special needs schools to discuss the provision of services.
Cork father of almost six-year-old Olivia, who has cerebral palsy and autism, Ruairi McGrath, said his daughter struggles with a long list of physical, emotional, and intellectual parts of everyday life.
He and his wife, like many families, find it “an ongoing battle to receive the necessary help” for their daughter.
Mr McGrath said recent discussions across the nation regarding the lack of support for families with kids with special needs have prompted him to fight to get something done for these struggling families.
“We receive very little in the way of therapies for Olivia. Her emotional behaviour can be very challenging, yet when talking to any members of her team, they make us feel as if they have never come across a child like Olivia.
“They can provide us with no help besides advising us to contact other team members, constantly kicking the can from one to another. A consultant psychiatrist told me once to send more emails or contact newspapers.
“Furthermore, we were denied a Primary Medical Cert which would have allowed us to apply for modifications to a car needed eventually for Olivia. Basically, we were told that, yes, Olivia is disabled but not disabled enough. This application process is totally out of date with today’s disabled people’s needs.
“Families are waiting on vital equipment, and we are no different. Families in Dublin, similar to our situation, have received a specific bed in which their child can sleep safely on their own. We have so far been denied this vital piece of equipment, without any advice on an alternative.
“Our beautiful girl Olivia is regressing in front of our eyes,” he said.
“I also feel very sorry for all the clinicians and therapists we do eventually get lucky enough to see. Because they believed they would be helping people. However, they must be so disillusioned in listening to parents pleading for help and being unable to provide what they need,” Mr McGrath added.
He said that he believes the health system “is neglecting its most vulnerable” and that as parents of children with additional needs, they are the parents of the forgotten children of the country.
Karen O’Mahony founded the Rainbow Club Cork Centre for Autism in 2015 with her husband Jon, as a response to their search for services for their two sons, Stephen and Sean.
The centre is currently offering 959 hours of interventions each week and supporting about 950 families.
The centre takes a holistic approach to supporting the whole family, offering social skills groups for children with autism, messy play, arts and crafts, drama, sports, lego workshops, a gamer café, sibling groups, parent training, parent advocate groups and support groups, as well as counselling services and its community café.
Speaking to The Echo, Ms O’Mahony said: “I’m a mum of two boys on the spectrum as well and my two boys haven’t had any services either.
“Sean is 16 and will probably age out without anything at this stage. Stephen is 12 and I’m not holding out for him to have any services either.
“Myself and Jon have come to terms quite a long time ago with the fact that our boys were not going to be able to get those supports, so we took it upon ourselves to provide them with support and upskilling and training ourselves and making tough decisions where the boys were concerned,” she said.
She said those accessing the Rainbow Club’s services are located across Cork and she is working on replicating the club’s services across the country, offering support not just to the child, but the whole family unit.
“We are looking at that and talking to groups because I feel every county in the country should have a Rainbow Club.
“It’s about the whole model that Rainbow Club offers, it’s the whole holistic child-led centre that is very much about the voice of the child and how we can help that child to learn at their own time and own pace and not try to squeeze children into a box that they don’t fit.
“It’s constantly providing hope, support, and a pathway for the family, and that’s what we have,” she said.
Local father of two children with additional needs, Donal Hunt, said that he knows acutely how bad the situation is in relation to accessing services.
“We have no faith that our children will ever be provided services. Speaking with other parents, this appears to be the norm rather than the exception.
“The recent creation of the CDNTs appears to be nothing more than a re-arranging of the deck chairs to hide a system that has failed children and families for years.
“My sense is that the system is dramatically underfunded with no clear understanding of what the true demand for services is. In my opinion, even if staffing levels were tripled, demand would outstrip supply given the numbers of children requiring support.
“At times, it feels like nothing has been learned from the scandals of yesteryear where children with additional needs were put in institutions.
“The only difference is that parents now suffer in silence at home, trying to balance making a living, if they can, and the needs of their children. Many are at breaking point — providing care 24/7, 365 days a year with little to no support,” he said.
Mr Hunt gave special mention to Shine, the Rainbow Club, and Autism Assistance Dogs Ireland who he said have provided a lot of support over the years.
“Without them we would have struggled even more.”
Speaking to The Echo, a spokesperson for Cork Kerry Community Healthcare said: “The National Policy on Access to Services for Children with Disability or Developmental Delay 2016 provides the framework for services to consider a child’s needs and the most appropriate service to meet those needs.
“Eligibility criteria and procedures for accessing services will be transparent and user friendly. Any form of discrimination in relation to access to services must be guarded against by adhering strictly to national policy and to agreed local procedures.”
The spokesperson said that Cork Kerry Community Healthcare Children’s Disability Network Teams (CDNT’s) are “committed” to the delivery of “an equitable and consistent service” for children with complex needs and disability in line with the principles and values of the National Programme for Progressing Disability Services for Children and Young People (PDSCYP).
“Our vision for all children and young people with complex needs is for them to be happy, independent, confident, connected, and an active participant in family and community life.
“It is the objective of the CDNTs to ensure that all children will have timely access to the appropriate services; however, the CDNTs have experienced significant challenges as well as finite and limited publicly funded resources assigned to each network and also the ongoing impact of Covid-19 pandemic,” the spokesperson said.
The spokesperson acknowledged there are “a number of vacancies” within CDNTs “due to difficulty with recruitment and statutory leave”.
“Backfilling of posts is challenging in the current environment due to lack of availability of appropriately qualified staff and demand for the same across the health service. However, the Lead Agencies responsible for the management of the teams are prioritising the recruitment of such posts.
“The teams operate according to a suite of national and regional standard operating policies, procedures and guidelines. There are prioritisation systems and caseload management systems including assessment and intervention pathways in place.
“The demand for assessment and intervention outweighs the resource capacity of the teams, this means that, in practice, children with the highest priority of need can access services and other children with a lower priority of need are placed on the appropriate wait-lists.
“As part of the HSE National Service Plan 2021, a total of 100 development posts were allocated for PDS and its implementation. Under Phase 1 and Phase 2, Cork Kerry Community Healthcare received 7.5 whole time equivalent posts with an additional 5.8 posts under Minister Rabbitte’s Special School allocation.
“This totals an uplift of 13.3 posts over 2021. In 2022, CKCH received a further 14.5 additional posts.
“CKCH are working with the lead agencies with respect to allocating these posts to the CDNTs,” the spokesperson said.
Members of FUSS are set to hold two protests on May 6, one on Grand Parade in Cork city at 10am, and the other at Leinster House in Dublin at 10am, to highlight their fight for access to children’s disability services.