FAQs, Progressing Disability Services Programme
Disability health services for children are organised and delivered very differently across the country because of the way they have been developed over many years. Some organisations provide services for children who have a particular disability. This means that while there are excellent services for some children in an area there may be little or none at all for others. This programme aims to remedy this inequity in service provision by changing the way we deliver services.
The programme, which is entitled ‘Progressing Disability Services for Children and Young People’ (often referred to as PDS), aims to achieve a national unified approach to delivering disability health services. By reorganising how services are delivered there will be a clear pathway to services for all children regardless of where they live, what school they go to or the nature of their disability or delay.
The aim is for children to receive the health services they need as close to their home and school as possible. Some children may have their needs met by their local Primary Care services. A Children’s Disability Network Team of health professionals will look after all children with more complex needs in a defined geographical area, regardless of the nature of their disability. The programme also involves our partners in the education sector to ensure we are working together to achieve the best possible outcomes for children.
In some parts of the country children’s disability services are already organised according to this model so major changes will not be needed everywhere.
The PDS programme’s aims and objectives are based on the recommendations of the Report of the Reference Group on Multidisciplinary Services for Children aged 5 to 18 Years completed in 2009 and approved by the HSE in 2010.(link to Report of Reference Group 2009)
It is common across Europe and elsewhere for children to be seen by their local early intervention and school age services whatever the nature of their disability or delay. For instance in the UK there are NHS Child Development Centres for all children with complex needs aged from birth to 19 years in a geographic area. They provide access to assessment, paediatric, nursing and therapy services and co-ordination with other services such as education and information. In Bavaria (population 12 million) 125 Early Childhood Intervention centres, through a regional system, provide interdisciplinary services and supports for children with all kinds of disability and developmental delay.
In line with current thinking on how people with disabilities should be supported to live independent lives, we are changing our approach to how we provide services.
We recognise that the family is the centre of a child’s life with health professionals supporting them to progress their child’s development. The family is the most important influence on a child’s life and they know their child best. The health professionals can bring their own particular expertise to add to the family’s and together they can maximise the child’s development and potential.
We are also moving from a diagnosis-led model to a needs-led model. Two children with the same diagnosis can have very different needs, so we should not determine the services and supports they may require based on their diagnosis. The Department of Education and Skills is currently making similar changes regarding the allocation of additional teaching resources based on children’s needs rather than their diagnosis.
To tie in with these changes we need to find a way to measure services on their contribution to the outcomes achieved for children and families. So, for instance, we want to know how a child’s ability to communicate and play with friends has improved as a result of intervention rather than just count the number of sessions a speech and language therapist has given.
This programme is led by the HSE in partnership with the non-statutory disability organisations, Department of Health (DoH), Department of Education and Skills and associated agencies. This partnership approach is crucial to ensuring the success of the programme.
The programme is being organised at national, regional and local level. There is a national working group with representatives from the DoH, the HSE, the voluntary service providers and parents through their umbrella organisations.
There are twenty four Local Implementation Groups which include parents and all the services in their area. While the National Working Group is monitoring the programme and ensuring a consistent approach across the country by giving guidance and support, it is at local level that plans are being formed and decisions made on how services will change in line with the national programme.
The course of the programme will be different in each area of the country because some areas are already delivering services according to this structure, whilst others have a lot of changes to make. The aim is ‘to hasten slowly’, keeping momentum going but making sure there is careful planning and consultation with all involved. Local Implementation Groups will need to decide how they will phase in the changes according to local conditions.
Parents and families are key to the success of this programme. The Local Implementation Groups include parent representation. Parents and families are contacted through local and national parent groups, local services and schools to bring them together and identify parents who can represent the broad spectrum of needs. In some areas parents have devised their own method of keeping in contact with each other (e.g. online) to support their parent reps and provide a means of two-way communication.
A number of documents have been developed to guide the change process and the establishment of children’s disability teams including:
• Guidelines for Local Implementation Groups on developing a Governance Structure and Policies for Children’s Disability Services
• Guidelines on Training and Development for Children’s Network Disability Teams
• Guidelines for Parent Representation on LIGs
• Framework for collaborative working between Health and Education
• ‘Outcomes for Children and Their Families’ - Report on an Outcomes-Focused Performance Management and Accountability Framework for Early Intervention and School Age Disability Services
• Guidelines on Reconfiguration of Services
• Guidelines on Individual Family Service Plans
• Guidance on Specialist Supports
All of the these documents and reports are available on the National Guidance Documents page
Each Local Implementation Group is planning very carefully to ensure there is no disruption in service provision and parents and families will be consulted well in advance of any planned changes in service.
The new structures to provide geographically based teams will come about through partnerships between the existing organisations. Staff will continue in nearly all circumstances to be employed by the same organisation that employs them now. They may be working in a different location or work in a team alongside others employed by a different organisation.
The aim of this programme is to ensure that access to services for all children is fair according to their individual needs. The Local Implementation Groups will make decisions on the best use of resources,based on local information.
Children will get access to services within existing resources according to their needs regardless of where they go to school.
The National Policy on Access to Services for Children with Disability or Developmental Delay was approved by the HSE in March 2016 and is currently being implemented. This policy provides the pathway for children to services which best meet their needs, Primary Care for children with non-complex needs and Children’s Disability Teams for children with complex needs. The policy has definitions of what is meant by complex and non-complex and includes guidance for services, referrers and families. Having one national policy means we can achieve equity and consistency in access to services across the country.
Until now we have had no national method of measuring the effectiveness of children’s disability services. A new way of measuring services is going to be introduced so that we will be able to measure the contribution of services to desired outcomes for children and families.
Where services have already been reconfigured into Children’s Disability Network Teams there is now equity of access to services for all children with complex needs in the geographic area they serve and a clear pathway to services.
We review and evaluate services regularly to find out about areas for improvement. In Kildare West Wicklow a review was completed in 2017. Surveys and focus groups with families, staff, and management were held to find out how well the service was working. We heard that the service had changed a lot in a short period of time and all children now had access to a disability service based on need. We also heard that schools and families thought the clinicians who visited were professional, caring, and child centred. The recommendations in the review point toward further developing the management and governance structures, our communication with families, and the way we plan and develop our workforce. The report and recommendations are in the process of being made into an action plan by the Steering Group.