I am joining this meeting via Microsoft Teams from home and am not on campus.
I thank the committee for inviting the Dublin 12 Campaign for Autism Inclusion to present to it. I am a parent of a child with additional needs and the vice chair of the campaign. I wish to acknowledge the input of our chairperson, Ms Margaret Jane Lowndes, who contributed to today's submission but is unable to attend. The Dublin 12 campaign was set up in 2018 due to the frustration of parents about the lack of school places and services in our area. We advocate for equal opportunities in education and services and for raising acceptance for children with additional needs.
According to the HSE, the PDS model for children and young people is a HSE programme that aims to achieve a single national approach to delivering disability services. It is a fairer way of providing services for children with disabilities and the pooling together of all resources. As a result of that, the children's disability network team, CDNT, is a family-centred model supported through an individual family service plan, IFSP, outlining what the goals of the child are and how best the teams can support the child and his or her family in achieving these goals.
While the above reads well on paper, the real experience of parents to date is different.
In Dublin 12, our Children's Disability Network Teams, CDNTs, are split into two locations, one in Dublin 8 and one in Dublin 12. Unfortunately our area was one of the last to be reconfigured and was also delayed further when the Covid-19 pandemic hit in 2020. The delay with the reconfiguration left families with nowhere to turn for support or help. The most vulnerable in our society were forgotten about leading to extra stress in an already worrying and unprecedented time.
Based on our own personal experiences and those of many of the families in Dublin 12, I will go into some key issues experienced as well as our collective recommendation on how the services could be improved for our vulnerable children suffering without services.
On some of the key issues, number one is communication. Initial communication between the HSE and families detailing the dates for the reconfiguration was infrequent and generic. No specific dates were provided. Families struggled with uncertainty. The communication was, and continues to be, extremely inconsistent. Some families received correspondence while others did not. Parents have also reported last-minute cancellations from CDNTs. To give a recent example, one family waited in a reception area to attend their appointment and were called by the same reception to say that their appointment was cancelled. We hope it does not come as a surprise to many that many of the children needing these services struggle with routine disruptions. An experience of this nature is very distressing for a child. The disregard for the impact on parents taking time off work to attend is also of note.
Family forums, as recommended by PDS, to be used to discuss issues within the CDNTs, are still not established and will take another few months to be set up. Parents need their voices to be heard now.
On inconsistencies, different approaches are used depending on the CDNTs that families attend. Some parents have been allocated key workers and have attended an initial meeting with them. Others are inexplicably without this service. Some were asked to bring their children to these initial meetings, others were advised to leave their children at home. Some of the CDNTs are offering play therapy and interventions for children and some are more focused on giving parent courses. One CDNTs has a messaging system in place for appointments and reminders and the other does not. A consistent approach, process and service is needed across the board.
On staff resources, all teams in the area are suffering from lack of staff and this has been communicated as an excuse for the delay and lack of services. Staff recruitment and high turnover is a major issue. There appears to be no coherent plan to improve this trend. There is also a worrying trend of newly recruited staff leaving very quickly. There are a number of vacancies across the two teams covering Dublin 12, including three psychologists, two physiotherapists, two speech and language therapists, one occupational therapist and one dietician.
High turnover is a huge concern as is lack of continuity in the process. Services have to start over to accommodate knowledge transfer to new hires. There is disruption to the relationship formed with children who thrive on familiarity and routine. Recruitment to the roles appears takes a long time. Staff illness and extended leave are not covered by anyone. Insufficient capacity is built into the teams to prevent the impact of staff absences.
On waiting lists, we surveyed 25 parents in April 2022. Of the 25, 20% have had an initial meeting with their key worker, 8% are attending a parent course, 16% attend a mix between play therapy and interventions, and 56% families are waiting without services. At present the waiting time for a "new" case to access the services is two and half years. There is no respite or home help available during these extremely difficult waiting periods. In our survey, we also asked parents if they had to privately bear the cost of therapies their child required. The average cost per household was €4,000 for a single child and over €9,000 for multiple children. As early intervention is so critically important, parents have had to struggle to find ways to fund these services privately. Private services have waiting lists and many are over-subscribed, so waiting lists are often closed to new clients. Given the rising cost of living and inflation, many of the private services have recently increased in cost. Families are struggling and having to make difficult priority decisions between mortgage, rent, household bills and their child's needs. It is a very hard place to be as a parent.
On recommendations, we recommend that a relief panel of therapists be put in place to cover illness and long term and extended leave. There should be automated text messaging for confirming, amending and cancelling appointments. Occupational therapists and speech and language assistants should be trained up and sent into the CDNTs to support therapists. We need to look beyond Ireland to recruit expert staff and provide appropriate incentives to attract the required talent. A system facilitating funded access to private services where public services cannot be provided within a reasonable timeframe should be implemented. This is not dissimilar to the concept of medical card access to a private GP but applied to the required disability services.
In summary, the roll out of the PDS appears positive and was welcomed as a new modernised disability service. However, for many families, it is a frustrating system to navigate. As the committee knows, the idea is to bring fairer access for each child and their family but the reality is there are no therapies for children and the emphasis is put back onto parents to be the therapists for their child. Parents are brought in for a meeting to set goals as part of the individual family service plan, IFSP, and must decide their child's top three issues. These form the foundation of the plan. Deciding as a parent is very difficult. You are left to appraise your own child. How can you choose when your child is complex and needs an array of help? Parents are steered away from requesting any direct intervention therapies for our children. As parents, we want to be empowered to support our children but we cannot do this alone. We need the expert therapists to do what they trained for and provide the services, frameworks and education necessary to families. Children are left to regress and families are left distressed. There is no one to step in to help and, as a parent, you feel deflated and that you have failed your child. Who supports parents' mental health as they continue to fight for what their children need?
Unless you live with a child with additional needs, you can never truly know the impact the absence of services have on the child and family. I ask the members today to consider if it was their child. What would they do while they challenge the system and watch their child regress? Would they be happy for their three-and-a-half-year-old nonspeaking child to wait until they are six years of age to be seen and supported? I thank members for their time and the opportunity to speak today.
