Speech by Chief Executive, Gerry Campbell, on World Autism Awareness Day

2 April 2009

Good morning ladies, gentlemen, children and young people, I am delighted to attend today’s conference to‘stand up for autism’ on behalf of Patricia Lewsley, the Commissioner for Children and Young People.

The Northern Ireland Commissioner for Children and Young People, or as we call ourselves NICCY, was established back in 2003. Under our founding legislation, the ‘Commissioner for Children and Young People (NI) Order 2003’, our job is to safeguard and promote the rights and best interests of children and young people, In NICCY, we are committed, to making sure that children and young people across Northern Ireland have a voice and a say in decisions that affect their lives.

This includes all children and young people, from birth right up to the age of 18 years. We can also work on behalf of young people up to 21 years in two special cases – disabled young people and young people in care.

At NICCY, our work is focused around the United Nations Convention on the Rights of the Child (UNCRC). Under the convention, disabled children and young people have the right to special protection to enjoy the same life as other children and young people. This includes the right to have a say in decisions that affect their life and the right to special care and support in both health and education. It is the job of the Commissioner for Children and Young People to make sure that all children have these rights fulfilled, including children with autism.

Our office has three main functions:

  • To act as an Ombudsman for children and young people, through our legal and complaints work; the Commissioner can take legal action on behalf of one child or a group of children and young people. NICCY’s Legal and Complaints Department supports the Commissioner in this role.
  • To carry out research and reviews into services, to ensure that the rights of children are met, in both policy and practice. NICCY has a Research, Policy and Service Review Department which examines policy, practice and services across the spectrum.
  • To communicate widely with children and young people and with the general public about the work of NICCY and about the rights that children in Northern Ireland are entitled to. NICCY has a Communications and Participation Department which works to ensure that the voice of children and young people is heard and that we listen to what children and young people are telling us.

Ever since NICCY was set up over five years ago, the needs and difficulties faced by children with autism have been brought to our attention. One of the most important ways we have been informed has been through the numerous complaints we have received directly from children and young people and their parents. These have often focused around the problems they have faced when trying to access services. In these cases we have intervened, through our function as an ombudsman, with service providers to ensure that the children and their parents could access the specific services and support they need.

Some examples of the types of cases that our Legal and Complaints Department have been involved with include:

· delays in the statementing process

· difficulties accessing therapies, such as speech and language therapy and

· inadequate or a lack of support in schools

Our legal and complaints service is open to all children and their parents and I would encourage anyone who is having difficulties accessing services or information to contact us.

Every child with autism has individual needs and these needs should be met. As I described already, we at NICCY are in a unique position in that we have the powers to intervene to help those children whose needs are not being met.

We are also in a position where we can engage and raise areas of concern with government officials, politicians and ministers. We have been proactive, outlining where we find gaps in policy and practice and making recommendations to address these gaps. For example, we completed a service review in March 2007, for children aged 10-17, who have Asperger’s syndrome (AS). This report, which involved talking directly to young people who have Asperger’s, clearly illustrated the difficulties they face in all aspects of their life. Key findings of the report included:

  • Difficulties with the diagnostic process, in particular the length of waiting times;
  • The absence of comprehensive and adaptable services to support the diverse needs of young people with AS;
  • Inadequate support for parents and families;
  • The lack of data that is collected and monitored on the numbers of children with AS; and
  • A need for greater cooperation and collaboration between the Departments of Health and Education in the planning and delivery of services.

Our report made a series of recommendations to government departments to improve service provision. We have been working with the relevant ministers and departments to have these recommendations accepted and implemented.

We have also completed a service review on the provision of speech and language therapy in March 2005 and a followup review the following year. This work in particular highlighted the significant delays in assessment and therapy experienced by children in the west. It also clearly showed a post code lottery approach to service provision. The recommendations from this service review resulted in the establishment of a taskforce, which looked at ways to improve the planning and delivery of speech and language therapy. We are continuing to meet with the Department of Health to ensure that the recommendations of the taskforce are implemented.

In the past few years we have seen a number of positive developments for children with autism:

The Department of Health, Social Services and Public Safety have developed an action plan in response to the independent review of autism chaired by Lord Maginnis. I hope that the implementation of this action plan will result in positive developments in health and social service provision for children with autism. As this plan gives recognition to the specific health and social care needs of people with autism, it seeks to put in place structures, supports and services to help meet the needs of these children and young people.

We have also seen the creation of Middletown centre of autism which has the potential to make a real positive impact on the levels of training and research on autism both north and south of the border. While I know there has been debate around the value of developing a centre at Middletown, I believe we will see benefits through training and research that will be a feature of the services available at Middletown. This research and training will provide extra support for parents and professionals, giving them tools and information, to help them meet the needs of their children. It will also create a large base of evidence which can inform future decision making and service development.

While we welcome these initiatives we remain concerned that the Departments for Education and Health are working in isolation to address issues affecting children with autism. This will result in the continued fragmentation of services and in some cases children unable to access services. We would like to see greater integration policy development and co-ordinated strategic planning to meet the needs of children with autism. Both departments need to be working together to develop joined up services and dedicated resource allocation that will benefit children with autism and their families.

Despite our concerns over the lack of a linked up approach at departmental level we do acknowledge and welcome the fact that Autism is now featuring higher on the political agenda.

For example, we know that a group of politicians have established an all party working group on autism in the Northern Ireland Assembly and that they are working towards the introduction of an Autism Act which has the potential to make a real difference to the lives of children and young people with autism. On Tuesday a rally was held at Stormont and a debate took place in the Assembly to further highlight these issues to our politicians.

I believe there now exists an excellent opportunity to build on these positive initiatives and developments, and put children with autism in the centre of service planning and delivery. We will continue to work with government to influence policy and practice to ensure the best possible outcomes for our children.

Again, I thank you for inviting me here today to ‘stand up for autism’. You can be assured of the full support of the Commissioner for Children and Young People, both in supporting children who need to access services and in proactively influencing government to improve the services provided for children with autism.