A NATIONAL PROGRAMME OF CHANGE IN CHILDREN’S DISABILITY SERVICES

Caroline Canton makes the argument for a national programme of change in children’s disability services.

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If your child has a disability, being able to get services and supports shouldn’t depend on where you live or the nature of your child’s needs. Disability services for children have a long history in Ireland and many organisations provide excellent support for children and their families. They have a high level of expertise and family-centred interdisciplinary teams, with nearly everything provided in one location. This is unlike the fractured way services are delivered in some other countries, which can involve families travelling to many different centres to get the services their child needs.

However, because services in Ireland have developed independently and may look after only one specific group of children who have a particular disability, there is wide variation in the services available in different parts of the country and for different categories of disability. For instance, there may be a service for children with an intellectual disability in your locality, but none for children with a physical disability or with autism. As a consequence, some children and their families have little or no access to services. We need a more equitable and consistent way to provide services for children with disabilities and must work possible within our resources.

A national programme is changing the way services are provided across the country. It is based on the recommendations of the Report of the National Reference Group on Multidisciplinary Services for Children aged 5.18 Years (available on the HSE website).

The organisation of services in the future

Many children with delays in development will be able to have their needs met by their local Primary Care services (public health nurse, community speech and language therapy, family doctor, community physiotherapy etc). Early intervention and school-age disability teams in each Network area will provide a more specialised service for those children who require it (a Health and Social Care Network is an area with a population of approximately 50,000).

As the Primary Care and Network teams will be looking after children with a wide range of difficulties, they need to be supported by specialist services in fields requiring a high level of expertise.

Examples of these areas are high-tech assistive technology and programmes for managing challenging behaviour. The specialist services will be involved in consultation on individual children and training, as well as providing direct intervention with children when needed.

How will this be different? Instead of having separate services in an area for children with learning disability or physical disability or autism, all children who need a team disability service will have access to their local early intervention or school age team. This means that health professionals and parents, instead of trying to find their way through a maze of services, will know where a child should be referred. Importantly our aim is that no family will be left without a service.

How is the programme being organised? A National Co.ordinating Group, with representatives of disability organisations, parents, the HSE, and the Departments of Health and Education, is leading, monitoring and guiding the programme. There are regional leads and local leads for the programme across the country (see panel for names of Regional Leads if you want to find out about your local area and how to get involved).

Local Implementation Groups

In local areas (based usually on Local Health Office boundaries though not in all cases) the local leads have brought together representatives from services and parents, to see how current services can be reorganised to achieve this improved structure. This includes finding out what is currently available for children with disabilities, planning how best to use these resources and making sure throughout that there is good consultation and communication. Because there will be guidance and direction from the national level of the project, local areas will have support and assistance and there will be a consistent approach throughout the country.

Other Initiatives

As this is a national programme of change in the way children’s disability services are delivered, it is offering us opportunities to look more widely at general issues in the way we support children with disabilities and their families. The National Coordinating Group has formed national working groups to look at specific areas. Members of the working groups include parents, representatives of the professional bodies and others bringing specific expertise. They also are consulting widely to draw on as much real experience as possible.

Health and Education

Health services, schools and parents need to develop closer working relationships so that, together, they can ensure that children with disabilities make the most of their education. Parents deserve issues concerning the development of their children to be addressed in a holistic manner and not as two separate ‘health’ and ‘education’ components. The sectors are separately organised and their task is to make sure that parents can’t see the join! Representatives of education are involved in this programme at all levels and this is seen as an invaluable opportunity to advance a co-ordinated approach.

Learning from experience

Health services in some areas, such as in the mid-west, north.east and west of the country, had already come together a few years ago and changed to provide unified services. While in each case they say that the change took effort, commitment and persistence and that more still needs to be done, they have found it has resulted in a much improved way of providing accessible comprehensive services which address the needs of all children with disabilities. Here are some of the comments from parents with children attending the Limerick Early Intervention Service where there are now teams who each provide services for all children within a Network area:
My child has benefited enormously from the services he has received from the Early Intervention Centre, which included Physiotherapy, Early Intervention and Speech and Language therapy.’ ‘It’s great that a team is available and knows your situation before any session so that you don’t spend more time explaining everything again.’ ‘Everything happened very quickly and that was a relief.

Comment from staff of Meath Children’s Disability Services which is for all children of school age who require a team service regardless of their disability:
‘Moving from having a specialist caseload (e.g. only working with children with autism) to a more mixed one was not as difficult as we thought it would be, and staff retention has actually improved markedly because working with children who have varied needs is less stressful and more rewarding.’

These experiences of staff and parents will be of great assistance to others as they plan what needs to be done and how to go about it in their own local area.

What stage has the programme reached?

Because of the way services have developed, each part of the country is coming from varying situations and therefore at differing stages. The local implementation groups have been given the objective under the HSE National Service Plan 2012 of agreeing this year their plan for change. This will include an agreement on the principles services should work to, and governance structures, policies and procedures for services. Each group is currently working to this end.

It is expected that the whole programme will take a couple of years to complete. It is very important that it is carefully planned and implemented with full consultation and information for all concerned. Limited resources are of course an issue and it may take a long time to achieve a comprehensive service structure throughout the country. However if we have the vision of where we want to be and get the structures right, we can build on firm foundations.

The vision for when the programme is completed:

  • One clear pathway to services for all children with disabilities according to need.
  • Effective teams working in partnership with parents.
  • Resources used to the greatest benefit for all children and families.
  • Health and education working together to support children to achieve their potential.

www.hseland.ie (This is the HSE’s Learning and Development website which is open for all to enrol, not just HSE staff. There is a wealth of information and written material of interest on this site, including the Progressing Disability Services for Children & Young People programme. When you have enrolled go to Practice and Development Hubs, then click on the Change Hub. On the top line you will see Reconfiguration Resources, click on that and open Progressing Children’s Disability Services. You will find the key documents such as the Report of the Reference Group on Multidisciplinary Services for Children and guidelines as they are issued, plus an extensive library of existing service documents and relevant articles.

Caroline Cantan is a social worker by profession and is Clinical Co-ordinator of Enable Ireland Children’s Services in Tallaght in Dublin. She is National Programme Co-ordinator for the Progressing Disability Services for Children & Young People programme.

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