Inclusion Ireland research into Progressing Disability Services highlights lack of services for children.
10th March 2022:
Inclusion Ireland today publishes a research report on the parent experience of Progressing Disability Services for Children and young people. Lack of services was the main issue that emerged from the research which saw responses from over 1000 families across Ireland.
The HSE began reconfiguring disability services for children and young people 11 years ago. The aim was to ensure that children had fair and equitable access to services no matter where they lived. Prior to this model change, there were areas in the country where disability services were very well developed for children and other locations where services were poor or non-existent.
Inclusion Ireland engaged with families through a survey and also developed individual case studies to highlight the experience of children and families.
Some key findings of the survey include:
- Over 50% of the families of children surveyed are not in receipt of any service. Less than 1/3 of families (28%) were engaging with Progressing disability Services through Children’s Disability Network Teams (CDNT).
- Many parents reported that their child spent a significant time on a waiting list for services. 85% reported that they have waited or continue to wait for more than a year. Of these children; 27% were waiting 2-4 years,16% were waiting 4-6 years and 5% for 6 years or more.
- 48% of families cited difficulties with communication from the services as one of their top 3 issues with the service. Families describe a lack of clarity in relation to plans and time frames for Progressing Disability Services for Children.
- 19% of families provided us with detail relating to concerns about quality of service. Examples included the lack of frequency of interventions, difficulties with staffing levels and lack of joined up working with schools or other services.
In addition to the issues identified Inclusion Ireland puts forward 9 recommendations that will offer solutions to the issues faced by children with disabilities and their families. These recommendations include: gathering of comprehensive data on a regional basis to plan more effectively, provision of timely assessments for children, the provision of early intervention services close to diagnosis, school based supports, timely replacement of staff and better communication with families. Our number one recommendation was around the urgent development of a comprehensive workforce planning strategy to address the lack of therapists and clinicians in the services.
Derval McDonagh CEO of Inclusion Ireland says: “The high level of response to our survey is indicative of the deep concern that many families feel and needed to express. While this survey cannot represent the totality of the unmet needs in Ireland, it can offer a clear overview of the challenges families face in accessing, navigating and maintaining essential, life changing services for their children. The development of the new Community Disability Network Teams throughout the country presents an opportunity to get things right for children with disabilities and their families”.
She added “Inclusion Ireland recognises and supports the values underpinning the model around fair access to services and family centred care. There is an opportunity with the collection of better data to plan for children by region over time and to work in trusting partnership with families. This can be done if the systemic issues within the services are addressed as a priority by Government and health services. While it remains to be the case that a child only has a right to an assessment but not the right to services, it will be a challenge for children to receive the support that they require. The Disability Act needs to be reviewed, hand in hand with the EPSEN act, to ensure that children’s rights are front and central at all times. It is imperative that children get the support they need early and often in the years where it makes the biggest difference”.
You can download the full report by clicking the below ‘Download PDF’ button.