COMMITTEE FOR HEALTH, SOCIAL SERVICES AND PUBLIC SAFETY

Autism Spectrum Disorder
Strategic Action Plan

13 November 2008

Members present for all or part of the proceedings:
Mrs Iris Robinson (Chairperson)
Mr Thomas Buchanan
Mr Alex Easton
Mr Tommy Gallagher
Mr Sam Gardiner
Mrs Carmel Hanna
Mr John McCallister
Mrs Claire McGill
Ms Sue Ramsey

Witnesses:
Ms Regina Cox ) National Autistic Society Northern Ireland
Ms Shirelle Stewart )

The Chairperson (Mrs I Robinson):

I welcome Ms Regina Cox, the national co-ordinator of the National Autistic Society Northern Ireland, and Ms Shirelle Stewart, the communications officer. You will have about 10 minutes in which to make a presentation to the Committee, after which members will ask questions.

Ms Regina Cox (National Autistic Society Northern Ireland):

I thank the Committee for giving us this opportunity to present our views. It was great to be able to sit in on the previous evidence session and hear the views of Autism NI (PAPA) and Autism Initiatives Northern Ireland. That was really useful. The Committee will find that we agree with many of the major points made by those organisations.

Most members will already know about the work of the National Autistic Society (NAS) and the services that it provides, but I will begin by giving a quick overview of NAS. NAS Northern Ireland is a charity that works throughout Northern Ireland for people of all ages who are affected by autism spectrum disorder. We provide information, advice and support, and we campaign and lobby for lasting, positive change for those affected by autism.

We have a growing number of parent branches throughout Northern Ireland. The services that we deliver include: a health-training programme for parents; a befriending scheme, which provides respite care; a parent-to-parent confidential telephone support service; an education advice line for parents and schools; an outreach service for young adults; and social groups for young adults with Asperger’s syndrome. We also have a team of family support workers who work one-to-one with families, providing them with various types of support.

We welcome the opportunity that the Committee has given us to provide feedback on the autism spectrum disorder strategic action plan, and we have divided our response into two areas. I will talk about the aspects of the plan that we fully support, and Shirelle will deal with some of our concerns.

We support and fully welcome the development of an autism spectrum disorder action plan that will help to plan, identify and meet the needs of people with autism. A specific strategy is of the utmost importance, given the poor outcomes for people with autism in Northern Ireland.

This is not our final response to the strategy. All our policy is informed by the views of people with autism, their families and carers. We found the strategy document difficult to navigate because of its reliance on technical language and the use of jargon. We felt that that may put some parents off responding to it. Therefore, we are currently facilitating user-friendly consultations with families and with people with autism in order to encourage them to respond. However, we appreciate departmental officials’ efforts to meet the needs of people with autism and their families in order to hear their views, and we appreciate the production of an easy-read version of the document.

The evidence provided today will form the framework for ongoing consultation with those individuals and their families. Shirelle will give the Committee a copy of a more detailed breakdown of our response. We will be happy to share our final response to the strategy with the Committee, and, at that stage, we will respond to each point in more detail. NAS recognises the work of officials involved in the development of the strategy and will continue to engage with the Department of Health, Social Services and Public Safety to ensure that the strategy is fit for purpose and meets the needs of people with autism and their families.

We welcome several of the draft strategy’s key recommendations, which are ambitious. However, without several significant changes, the strategy will not meet the needs of people with autism and their families. That is especially pertinent in relation to the needs of adults and older people with autism. The National Autistic Society Northern Ireland supports a specific strategic plan with ring-fenced funding to plan, identify and meet the needs of people with autism.

We support the identified need, which is outlined in the plan, to focus attention on putting the correct infrastructure in place. We also welcome the action plan being organised around five key themes: service redesign to improve autism care; performance improvement of autism services; training and raising awareness; improving communication and information for individuals and their families; and effective engagement and partnership working. Those themes are a sensible way in which to organise the plan. However, the actions around the themes are not always clear, and some of them appear to have a specific focus on children and children’s services.

We very much support the creation of a local autism spectrum disorder network and regional co-ordination group in order to promote a co-ordinated approach to assessment, diagnosis and treatment. However, those groups must work across adult and children’s services. It is essential that people with autism and their families are also involved in the development of those services. A person-centred approach is very important. The diversity and individuality of autism means that no two people are affected in the same way. Therefore, services should be built around individual needs rather than on the assumption that what suits one person will also suit another. A person-centred approach is required that involves listening to individuals and ensuring that they are always at the centre of planning and the delivery of services. We are delighted that IQ will be removed as a method of determining access to services, because that has been detrimental to many people with autism.

Autism is neither a learning disability nor a mental-health problem; it is a developmental disorder. People with autism who seek help from their local health and social care trust tend to be directed to either one or the other: learning disability or mental health. Those who have no learning disability or mental-health problem do not fall into either category. That has resulted in many people falling between the gap in service provision and ending up with nothing.

We also welcome the introduction of home assessment by a health visitor trained in autism spectrum disorder at around 24 months. However, the National Autistic Society Northern Ireland has several concerns about the strategy in its present form. Shirelle will discuss those concerns further.

Ms Shirelle Stewart (National Autistic Society Northern Ireland):

When the Minister of Health, Social Services and Public Safety, Michael McGimpsey, introduced the autism spectrum disorder strategic action plan, he said:

“There is an urgent need to develop and improve services for people of all ages who are affected by ASD. This strategic action plan will set out the direction for service development and improvement in health and social care services over the next three years.”

The National Autistic Society believes that the strategic action plan has not necessarily been developed for “people of all ages”. The action plan focuses attention on diagnosis, assessment and intervention for very young children. We acknowledge that that is an extremely important area. As a parent who has just gone through that process with my child, I am the first to admit that there is an urgent need for earlier diagnosis and intervention. However, the action plan will fail the majority of people in Northern Ireland who have autism spectrum disorder if that is its sole focus. The focus of the strategy must change. Although some of the actions mention adults, they actually refer to children’s services. The strategy must include clear actions that specifically address the needs of adults with autism.

The recent ‘I Exist’ report, with which I am sure all members are familiar, specifically examines the issue of adults with autism. Some 60% of adults whom we surveyed said that they had found it hard to get a diagnosis. That is hardly surprising, because no one is specifically employed to diagnose adults with autism in any of the five trusts in Northern Ireland.

The diagnostic service is very ad hoc. For example, in the South Eastern Health and Social Care Trust, one clinician, who works in Lisburn, spends one third of her time diagnosing adults. However, in the other trusts, a much more haphazard approach is taken to diagnosis. It is important that adults can get timely diagnosis in their local area and that it is carried out by appropriately trained individuals.

It is also important that adults with autism are provided with support post-diagnosis. We have found that some adults, who perhaps had to obtain a private diagnosis, have received no support. Under the present system, adults who are diagnosed later in life as having high-functioning autism or Asperger’s syndrome fall between the gap in service provision.

Under the present system, the number of people with autism is not always recorded correctly. If a person avails of learning-disability services, he or she may be recorded as having autism spectrum disorder; similarly, if a person avails of mental-health services, he or she may be recorded as having autism spectrum disorder. However, if a person has required neither of those services, his or her condition may go unrecorded. Such people struggle to get an assessment, and often do not receive any help at all. The National Autistic Society recommends that, in each trust area, there is a named professional who is responsible for diagnosing adults. We want that to be included in the strategy.

On the issue of funding and resources, we agree with our colleagues from Autism NI (PAPA); the money, when it is spread out among the five trusts, is not enough to meet the needs of people with autism.

If the focus of the strategy is maintained, the majority of funding will be used to provide services for children and young people, and will neglect to provide services for adults with autism. It must be ensured that the trusts provide money for children’s and adult services. That need was clearly identified in Lord Maginnis’s independent review, in which he referred to:

“an almost complete absence of services for adults with autism in Northern Ireland.”

The need for services for adults is well documented.

The National Autistic Society has a number of suggestions regarding funding. Adequate funding must be made available to ensure the implementation of the autism spectrum disorder strategic action plan. That funding should be based on meeting the needs of the 17,000 people with autism in Northern Ireland. If the immediate families of those 17,000 people are added in, autism affects the lives of over 68,000 people. That is not a small percentage of the population, so adequate funding must be made available now.

Some of the support that can be provided for people with autism would be low cost. If support is provided early on for young people and adults, they are less likely to access more expensive support, such as mental-health services, further down the line. There should be an audit trail monitoring how the trusts spend their ring-fenced money to ensure that it is being spent on autism services.

We are very disappointed that the autism spectrum disorder director post is not a new post. Rather, autism spectrum disorder services will become one of the duties of an existing assistant director. That raises the issue of who will provide the service. Will it come from children’s services, or will it come from adult services? How can we ensure that services are developed in both areas? To tag that post onto an existing one is, perhaps, not the best way to provide leadership and take the strategic action plan forward. The autism spectrum disorder director post should be a dedicated post working across children’s and adult services.

We question the data that is used to estimate the number of people with autism. The recognised figure used across the UK, and in different parts of Europe — and it is an estimate — is a figure of one in 100. That is the figure that should be used; if the figures quoted in the action plan are used, need will be underestimated. We suggest that the Department use the figure of one in 100 and also start to collect accurate data in each trust area on the number of children and adults with autism. That figure will then include people with high-functioning autism and Asperger’s syndrome; once the IQ criteria are removed, those other people will start to appear in the system.

There is a backlog in people waiting to receive a diagnosis, and we understand that there are problems in counting the number of people with autism. However, accurate systems must be put into place now. How can services be provided for people with autism if we do not know how many people are out there?

We are concerned about the lack of clarity as to how the autism spectrum disorder strategic action plan will interlink with the Bamford vision. We are clear where autism sits: it is a developmental disorder. At present, however, people with autism tend to access services from either learning-disability or mental-health services. There are strategies dealing with both those areas, and it is important that those strategies dovetail to ensure that what happens in one area is reflected in the other. There is an overlap in those populations; for example, some people with autism may have an accompanying learning disability or may require mental-health services.

The Bamford Review provides for certain services and training, and it is important that people are trained in mental-health, autism spectrum disorder and learning-disability services. Some children who have autism will, perhaps, also have a learning disability, but it may be autism that prevents them from progressing; the learning disability cannot be treated in isolation. A mechanism should be in place to ensure that the Bamford vision and the strategic action plan dovetail.

Research shows that there is a higher incidence of mental-health issues among people with autism. Some 96% of the adults surveyed for the ‘I Exist’ report said that, with more support, they would feel less isolated; 34% of adults said that they had experienced mental-health difficulties; and 57% said that they had suffered from depression. That highlights the need to ensure that the different strategies dovetail.

The need for cross-departmental working was also raised. A strategy to address the needs of people with autism must cut across Departments. In the cases of young children, it is essential that health and social care services work in conjunction with the Department of Education. As children progress to adulthood, there is a need to work with the Department for Employment and Learning. Subsequently, the Department for Social Development should be involved when the individual wants to access housing and explore independent living, for instance. The strategic action plan makes little reference to the role of other Departments or to the Middletown Centre for Autism. They must be considered together if we are serious about having a strategy that will meet the needs of people with autism.

We are also concerned about how the health and social care trusts will be held to account for the delivery of the strategy. We have questions about we will ensure that the strategy is being delivered consistently in and across the trusts. Clear mechanisms are required to ensure that that happens. We want the Committee for Health, Social Services and Public Safety to review the strategy and its implementation annually in order to measure progress; that would be one accountability mechanism. However, I understand that different mechanisms will have to be established to ensure cross-departmental working.

We would like to find out whether we are adhering to disability discrimination legislation and to article 8 of the European Convention on Human Rights — the right to respect for private and family life — in respect of adults. That article incorporates a positive duty to ensure that adults have scope for their personal development and integrity. If adult services are not available, questions will be asked on how those obligations are being met.

The Chairperson:

Thank you for your presentation. I invite members to ask questions.

Mrs McGill:

I was interested to hear you — someone who represents autism, in its broadest sense — say that the Department’s strategic action plan is not user-friendly. What is wrong with it? Does it contain too much Civil Service-speak, for instance?

Ms Stewart:

Departmental officials are making efforts to meet people with autism, their families and carers, but they will not be able to meet everyone. The Department has produced an easy-read version, which some people can access, but it is not suitable for parents. A problem is that there is too much health and social care jargon; there should be more plain English. The structures are also quite difficult to understand. The targets and the specific actions are not necessarily self-explanatory; sometimes one has to read between the lines.

Mrs McGill:

The parent of a child with autism contacted me and said that they had had a big problem when the child was involved in post-primary transfer. That parent felt that the absence of a coherent plan or support made the process very difficult. Therefore, Sue’s point about the need for a joined-up approach, particularly in education, is valid.

None of the trusts has a designated person to diagnose adults. Is there someone in each trust to diagnose young people?

Ms Stewart:

Yes, there is.

Mrs McGill:

Is there one person in each trust?

Ms Cox:

That depends on the trust; there are more diagnosticians in some trust areas than others, depending on how far-ranging their roles are. However, there is always someone to diagnose children in each trust. Recently, a man sent me a seven-page email describing his symptoms; he clearly had Asperger’s syndrome, but he lives in Aghadowey and asked if I could recommend someone for him to see. I know of some clinicians in other trusts who will diagnose adults as part of their role or privately, but I do know any such person in the Northern Trust. It was very distressing to have to tell that man that his options were to find out whether another trust would diagnose him or to pay for a private diagnosis.

The Chairperson:

Cross-departmental working was referred to earlier. What Department should take lead responsibility for the issue?

Ms Stewart:

The focus in the action plan is on health and social care trusts, so we are happy for the Department of Health, Social Services and Public Safety to roll it out. If we had been examining other issues, there could have been an overarching role. For example, the Office of the First Minister and deputy First Minister can hold other Departments to account. However, we understand the situation.

Ms S Ramsey:

An overarching response has been mentioned, so it is important that we talk to the junior Ministers about what they are doing on the issue, because they chair the ministerial subgroup on children and young people. I am not speaking for all members, but when the ministerial subgroup on children and young people was established, members were delighted because it meant that other Departments would be made accountable.

I am unsure about the role of the Children’s Commissioner. In the first presentation to the Committee this afternoon, an independent or a champion was mentioned. That is fair enough, but I do not know whether people are missing out the role of the Children’s Commissioner or whether they do not know her role and responsibilities. There is legislation that gives the Children’s Commissioner several statutory powers over the legal duties of Departments. Therefore, the Children’s Commissioner has an important role, which should not be forgotten by people in the community and voluntary sector, or any other sector.

In the earlier presentation, it was mentioned that the Northern Trust was being proactive. Do you have information about the other trusts?

Ms Cox:

That is another of our concerns. As a consequence of the Bamford Review, the Western Trust’s autism strategy is under way, and the Northern Trust is preparing to implement its strategy. The question is: how will Lord Maginnis’s proposals feed into strategies that are already under way?

Ms S Ramsey:

I hope that the Chairperson will allow me a little leeway, because I wish to repeat a point that Thomas Buchanan made. We must take care — and I know that Thomas was careful about what he said — to ensure that money is spent directly on services. Several years ago, additional money was allocated for children and young people, and, in my opinion, it was stolen from projects in order to pay off service providers’ bad debts. From a legal point of view, it was spent on children and young people; however, it was not used for the purposes for which it was intended. That is a key point, and we should keep an eye on such matters.

The Chairperson:

Such money must be ring-fenced.

Ms S Ramsey:

At the time, it was ring-fenced. From a legal point of view, nothing was done wrong; however, that additional money was not intended to be used to pay off the debts accumulated by providers of children and young people’s services.

Ms Cox:

That is an interesting point. Earlier this week, we gave a presentation to Fermanagh District Council, and the subject of new money for autism services was raised. A parent made the valid point that some of the money that is already available is not used appropriately and that parents must be consulted more to ensure that the services that are provided are what they want. For instance, we received lottery money and put in place a family support worker for the west. Her salary does not cost us much — she works from home — and, in the year that she has been in post, she has given one-to-one support to more than 100 families. That has made a huge difference, so it is not simply a matter of how much money is allocated; it is about how that money is used to produce the best impact on the ground.

The Chairperson:

I thank both witnesses for attending and for giving us such a brilliant insight into the problems associated with their work and into the resolutions to those difficulties. We look forward to receiving their final response to the draft autism spectrum disorder strategic action plan.