Official Report (Hansard)
Date: 13 November 2008
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
Mr John Campbell ) Autism Initiatives Northern Ireland
Ms Arlene Cassidy ) Autism Northern Ireland (PAPA)
Ms Edyth Dunlop ) Northern Ireland Union of Supported Employment (NIUSE)
The Chairperson (Mrs I Robinson):
The Committee has two evidence sessions today on the Department’s draft autism action plan, a copy of which, and a briefing paper from the Assembly’s Research and Library Service, is at tab 3 of members’ papers. The action plan is out for consultation at present, with a closing date of 12 December 2008.
The first evidence session is with Autism Northern Ireland (PAPA). A copy of the briefing paper from Autism Northern Ireland is at tab 4. It is my privilege to welcome the chief executive of Autism Northern Ireland, Arlene Cassidy; John Campbell of Autism Initiatives Northern Ireland; and Edith Dunlop from the Northern Ireland Union of Supported Employment (NIUSE).
I invite you to make a presentation lasting up to 10 minutes — although the Committee can be a wee bit flexible. Members will then have an hour in which to make points or ask questions.
Ms Arlene Cassidy (Autism Northern Ireland [PAPA]):
I cannot imagine the number of consultation papers that come the Committee’s way. Therefore I thank the Committee for the opportunity to make what I hope will be a helpful presentation. I will begin by structuring the eight-page response that my organisation has presented to the Committee.
In brief, the first two pages serve as an introduction and set the scene; the following three pages, starting with: “The DHSSPS Action Plan for Autism” is the substantive response from Autism NI; and the final three pages summarise that response. Therefore it is not as weighty a tome as it first appears.
The first two pages state what Autism NI is and whom it represents. In summary, the voluntary-sector partnership for autism is represented at the Committee this afternoon. Autism NI is Northern Ireland’s largest and longest-established autism agency. Autism Initiatives is the largest service-providing organisation in the field of autism in Northern Ireland. Autism NI has achieved its role as a result of 18 years of partnership collaboration, some of which is represented today.
Autism NI is a partnership organisation that was originally called Parents and Professionals and Autism. In practice, that means that key representatives from the statutory sector are active in Autism NI, up to and including board level, and are working alongside individuals with autism and their families.
I will skip briefly through some of the bullet points in our submission to establish Autism NI’s credentials. “Partnership” is a necessity in order to pioneer provision. When there is no money, organisations need partners, help, careful thinking and an original autism spectrum disorders (ASD) strategy. In the absence of an original strategy, Autism NI has worked across Departments and across voluntary sector providers to establish a strategy. Therefore there is a consistency in regard to assessment, diagnosis and educational provision in Northern Ireland that is due, in no small measure, to Autism NI acting as a catalyst in those areas. As it strives for excellence, Autism NI has pioneered a range of autism training in Northern Ireland.
Autism NI lobbies for social change and equality for a disability that no one wants to “own”.
Autism NI supports families. Our mandate for being here today is that we have approximately 1,500 members, 23 support groups and 160 volunteers who work to the organisation. We innovate nationally; a coalition of autism organisations in the UK has agreed that Autism NI should lead Northern Ireland’s campaign for World Autism Awareness Day in 2009. Autism Cymru will lead that campaign for Wales, and The Scottish Society for Autism will lead the campaign in Scotland. That is a great recognition of the devolved structures under which we operate.
In presenting our information to the Committee, we wish to emphasise the spirit of partnership that exists between Autism NI and the organisations that are mentioned in our written briefing, and with whom we have had discussions and created links. They represent a range of service-providing organisations for adults and children. It was satisfying to see that several applied behavioural analysis ( ABA) organisations have agreed to be represented by Autism NI on this matter. We have also had brief consultations with Mencap, early-years providers, and Autism Cymru.
After my focus on the action plan, I wish to leave time for questions or for brief presentations, depending on our time allocation, for our colleagues from Autism Initiatives Northern Ireland, and the Northern Ireland Union of Supported Employment. One of the deficits in the Department’s action plan is the lack of a strategic focus on adult services.
Moving swiftly on, I wish to make a few overarching comments about Autism NI’s response to the Department’s action plan. The action plan is based on the recommendations that were made in several reports, including the Bamford Review — the contents of which are no secret to the members of the Committee. Autism NI is very concerned that the Bamford Review and ‘Equal Lives: Review of Policy and Services for People with a Learning Disability in Northern Ireland’ fail fully to grasp autism issues. The designation of autism as a mental-health disability also caused us some consternation.
The action plan is based on some of the findings of those reports, and it dovetails, as the Department must ensure, with existing documents, including the Bamford Review and the Independent Review of Autism Services. However, the action plan has dropped or altered some of the recommendations that were made by the independent review; for example, the budget has been reduced. Although the action plan is for three years, it has been allocated a budget of £2·2 million.
The Independent Review of Autism Services favoured a 10-year strategy, which would have an annual budget of £2 million. That means that the plan will be given only one third of the budget allocation that was originally recommended by the independent review. That works out at an allocation of about £140,000 for each trust in Northern Ireland. Given the in-depth recommendations made by the Independent Review of Autism Services, that will result in resource tensions.
The action plan reduces the profile of transitions in adult services. It has maintained a flawed recommendation of the Bamford Review; it indicates that managers in the health and social care trusts will be given extra duties. On top of their already demanding roles, they will be asked to take on a co-ordinating role in autism services. That is in stark contrast to the approach that was taken by the National Assembly for Wales, which spent the first-year moneys for autism services on building up a service infrastructure.
Full-time autism co-ordinators are employed in each of their local authorities. Three regional co-ordinators were then appointed to mentor those in the basic layer, and those three co-ordinators will have a policy link to the National Assembly for Wales and the relevant Departments. The recommendation that autism be dealt with on top of an employee’s day job was seeded in the Bamford Review. It is regrettable that that thinking continues to prevail.
However, the action plan has upheld several excellent recommendations made by the Independent Review of Autism Services, a couple of which are mentioned later in my presentation. One recommendation was for the reintroduction of home-visit assessments by health visitors, who will be trained in the identification of autism.
Our presentation says:
“The Action Plan is significant in addressing a targeted improvement in services for individuals with ASD which can be implemented quickly.”
That is a tremendous achievement. The presentation continues:
“However, it fails to provide the strategic ownership, coordination and leadership required to safeguard, underpin and guarantee the provision and development of ASD services… It is therefore a ‘mixed blessing’.”
The next paragraph deals with specific issues. I do not have time to deal with each one, but members can peruse the document later. I already mentioned the welcome introduction of home-visit assessments by health visitors for children aged 24 months, and autism is one of the issues that they will consider. Therefore the Department is thinking about introducing an identification layer, which is excellent. However, I must point out that the effect will be increased referrals to the specialist clinic and that there is no knock-on funding allocation to enable staff to cope with the increased number of referrals. Of course, not all children will be diagnosed with autism, but they will all have to be assessed.
A similar service tension is outlined in the next paragraph. The removal of an IQ of 70 as a gateway to services for people with Asperger’s syndrome is very welcome and long overdue. However, there is not sufficient acknowledgement of the resource implications, and resources are dealt with in the following paragraph.
The action plan is public-health and medically driven, without the awareness that, beyond assessment and diagnosis, the paramount issues are social care, education and employment and learning. Although there is much to be said for the action plan, which is positive in many regards, it is very much targeted at a specific part of a child’s life and does not address longitudinal impact. Much more could be said in the action plan. There are references to support, without any definition of what exactly is meant by it. Family support has been under-acknowledged and underfunded for a long time. Although the Independent Review of Autism Services talks about family support, the more generic word “support” is increasingly creeping into the action plan.
I also regret that although the voluntary sector is mentioned, it has not been given a more dynamic role, particularly given the pioneering role that all the voluntary organisations — not just Autism NI — have played in providing for individuals in Northern Ireland. It would have been lovely to see a more dynamic compact between us.
I want to make a quick pedantic point — and I always have to make one: the prevalence rates quoted in the action plan give a false picture and fail to create a balance. They refer to the 200 children who are born with ASD each year. Although 200 to 300 children born in Northern Ireland each year will be diagnosed with autism, in the here and now approximately 4,000 school-age children require services. Moreover, an additional 17,000 young adults and adults have the condition. The prevalence rate is one per 100, and that has been accepted across these islands. There must be clarity on that matter.
I regret the fact that the autism action plan was produced only by the Department of Health, but, next year, the Department of Education will also produce one. As a strategic organisation, we feel that that is sufficient evidence for the need for a cross-departmental regional autism strategy.
Parents who were consulted said that adult diagnostic services, for example, are virtually non-existent in Northern Ireland; the Department should take that on board.
In the Independent Review of Autism Services, some moneys were allocated for adult services, and that at least recognises that it is an area of growth that had to be provided for. The independent review recommended an allocation of £750,000 to kick-start adult services, but the recommended allocation in the action plan is different.
I hope that I have represented the action plan fairly; it is a welcome development, but it does not go far enough. You probably expected me to say that, but there are so many missed opportunities. Autism NI has been successful in making some linkages, but the action plan could have established many more.
There is a need for leadership, ownership and accountability. For instance, an ASD co-ordinator could be appointed to each health and social care trust. Notwithstanding the action plan, some staff have already been appointed to take on extra autism duties. Indeed, I am delighted that the Northern Health and Social Care Trust recently advertised for one ASD co-ordinator. Therefore the action plan is already out of date, because one of the trusts has already taken the step that we recommend in our briefing paper. Further to the appointment of five co-ordinators — one in each health and social care trust — there should be a regional co-ordinator to take the policy lead. An independent ASD commissioner has always been required to provide oversight on behalf of individuals with autism and their families.
We are calling on the Department of Health to assume the lead departmental role in overseeing the development in co-operation with other Departments, including the Department of Education and the Department for Employment and Learning.
We are boldly looking for OFMDFM or this Committee to initiate legislation to ensure cross-departmental planning and funding for ASD to underpin the case for a regional strategy. The mention of legislation is not meant to scare people. It is merely commonsense, and it needs to happen, because it is about bringing together existing legislation, such as the Disability Discrimination Act 1995, to include autism in it. There are particular adaptations that must be made for people with autism, which are not referenced in current legislation.
We recommend the appointment of an independent regional commissioner to implement unique measures to ensure access for individuals with autism linked to the amended Disability Discrimination Act 1995.
Finally, legislation is required to recognise autism as a social and communication disability, with a range of associated co-morbid conditions that necessitate a unique degree of access across services. The summary sheet contains an umbrella graphic, which provides a vision of the future.
I wish to refer to a document that was produced by the Northern Ireland Assembly’s Research and Library Service, as it supports the case for appropriate legislation in Northern Ireland.
One of the issues is equality. The approaches, strategies and models that are needed to deal with autism spectrum disorder are frequently the same as those that are in place to deal with related conditions such as attention deficit and hyperactivity disorder (ADHD) and semantic-pragmatic disorder. It is not about autism wanting to promote itself above other disabilities — it is about autism asking for a helping hand so that it can be treated equally.
Thank you very much for your time.
Mr John Campbell (Autism Initiatives Northern Ireland):
I will make a brief presentation. Arlene talked about non-existent services for adults, and I am here to make a plea for adults — we are a very hands-on service. Six years ago, parents in Liverpool raised £100,000 to bring Autism Initiatives to Northern Ireland. We now reach 200 people through 21 types of supported housing throughout the Province — there were more than 170 applications. However, we reach only 200 young adults who have autism; I am concerned because there are 17,000 young adults whom we do not reach. Most of the 200 people with whom we deal are between 18 and 25; people with autism who are over the age of 25 are a forgotten population.
Last night, I spoke to two young people who are involved in one of our supported-housing schemes in Newcastle. I mentioned that I was coming here today, and I gave them a list of the people who would be in attendance. They did a great deal of research on everyone who would be attending, and they said that they wanted something that they can be sure of when they reach the age of 35, 45 or 55. From their hearts, they said that they would be lucky to live longer than 55.
The diagnosis figure of school-age children with autism is 4,000. My worry is that there will be no services for them. The present transition means that once young people reach the age of 15, their families panic until their children turn 18. Family members have to leave work or work part-time to support their young adults at home because there is no other provision for them. The Western Board has a very small scheme that involves an average of only 2·5 staff. We deal with 79 young people, and another 37 are pending. We do not know what 2009 will bring.
We are glad that the action plan exists, but our hearts sank when we read it because it contains very little about adults — children do grow up.
I apologise, as I have to leave the meeting; I am sorry that I cannot stay for the discussion. I apologise to the National Autistic Society, but I will pick up on the discussion later. I am sorry that I will miss its presentation.
Do you want to ask a question before you leave, Carmel?
Yes — a brief one.
Thank you very much; your presentation was very good. I appreciated your comments about the action plan, especially concerning specific autism co-ordinators. I appreciate the need for that, and I want to be as supportive as I can — particularly by giving practical support — because we hear a great deal about the need for respite care.
I do not mean to be contentious when I ask this question: how is your relationship with the National Autistic Society? People outside your organisations can find it difficult to establish whether you work together. I am not being contentious; I genuinely do not fully understand. I am sure that other members feel the same, but I happen to be the one who has asked the awkward question.
I do not meant to be contentious either, but that is a question for the National Autistic Society Northern Ireland. Autism NI works in partnership to provide family support and training, although there are still many gap areas. We were delighted when Autism Initiatives approached us and requested that the two organisations work together. We came to an agreement about which organisation should take which actions, and we have been able to develop a partnership.
I appreciate that answer, and I will ask the same question of the National Autistic Society.
Ms Edyth Dunlop ( Northern Ireland Union of Supported Employment):
I represent the Northern Ireland Union of Supported Employment, which is an umbrella organisation the members of which deliver supported employment for people with disabilities. As John and Arlene said, the action plan is focused on young people; it does not fully recognise that people get older and want to look for opportunities in further education and employment and in training rather than moving into day facilities. Evidence from our member organisations suggests that more young people with ASD are now seeking employment and training, and we need to be able to provide a specialist service for them.
We met the Committee for Employment and Learning and the Minister for Employment and Learning to tell them that although the existing Government-funded programmes are very good, they are not necessarily meeting the needs of people with significant disabilities, particularly those with ASD. There is a need to fund specialist programmes so that people can get through in adult life, find a job, be supported in that job, and make a valuable contribution to the workplace. Those people will be able to give back to the Government in that they will no longer receive benefits and will pay tax and national insurance contributions. I am here to support Arlene and John and to represent our membership. Several of our member organisations have reported a large increase in the number of people with ASD who are seeking employment and who want to work — we should be supporting those people to find work.
I thank you all for your contributions, and pay particular tribute to Arlene. As Chairperson of the Committee I have worked with you and have travelled to America with you, along with the Assembly’s autism caucus, and with your colleague Eileen Bell, and I thank you for your work and dedication to Autism NI. We must recognise that dedication and hard work over the years, and I therefore pay that little tribute to you because sometimes leaders do not get a great deal of recognition.
Are there any schemes in operation that specifically target autistic adolescents and older groups for training?
Several organisations in Northern Ireland provide support for people with learning disabilities through the supported employment model; those organisations claim that increasing numbers of young people with ASD are seeking support. I will refer to one particular programme that is funded by Equal — the employment for autism project, which was run by the Orchardville Society and the NOW Project. The Committee may have already received information about it.
Over its lifetime, it identified training to assist people with ASD to gain employment using the supported employment model. It is a person-centred model that takes account of an individual’s skills and abilities and matches them to suitable employment, and then provides ongoing support to the individual in employment. The purpose is not simply to place people in jobs, but also to provide support for them once they are in employment.
Although it was a small project, more than 50% of the young people seeking employment through it found employment and remain employed. There are projects and mechanisms aimed at assisting people with ASD to find employment through the supported employment model.
The Orchardville Society and the NOW Project continue to provide that support. When the project ends it does not mean that there is no support for the young people. They recognise, through the training and the project itself, that there is a need for specialised, more intensive support for people with ASD. They, and many other organisations, need more funding to help them to provide the extra support that people need. Some people need support with communication or more intense support while in the workplace. If members have not received copies of ‘Employment for Autism’ and the DVD, we will send them to the Committee.
Please send them to the Clerk of the Committee.
The evaluation report highlighted some of the difficulties to be overcome in assisting people to move into employment. It showed how people can overcome them through the Equal Project, which helped them to identify key learning skills and what was needed to assist people with ASD in employment.
Off my own bat, I went to see the children at Oakwood Integrated Primary School this morning, where tremendous work is being done with children with autism. Oakwood takes children from three to eight years of age, and its work is commendable and amazing. It was humbling to see the dedication of staff in preparing young children to proceed to mainstream and other suitable directions in education.
Ms S Ramsey:
I thank the witnesses for their presentation.
I have some comments and suggestions. I was struck by the quotation from the Nobel laureate James Heckman:
“The first six years of a child’s life are crucial in terms of their social and cognitive development, ironically however this is the time when the least funding is made available.”
If we are discussing making positive change, we need to take on board suggestions and comments like that.
We have gone beyond reviews, consultations and proposals; it is time to deliver and to take action. We are talking about individuals — not statistics — and the negative impact that a lack of resources has on individuals, their families and community. We need to be honest. It is easy, sometimes, to ignore problems at source and not put in resources; but the community suffers. If we do not get this right, we will face greater problems in future. We must take that into account.
Chairperson, I suggest that we send this presentation to all Ministers, as some of it cuts across departmental responsibilities. The Committee can be proactive. We should ask them upfront what they are doing about autism. This is a health issue; but education, employment and learning, social development, and the justice system all have an important role to play. We can ask the relevant Ministers to respond to the presentation and to give feedback to the witnesses, which will save their organisations from chasing their tails all the time.
The other point related to a joined-up approach is the difficulties experienced by young adults; I am especially interested in that. Fortunately — or unfortunately, depending on how one looks at it — I chair the Committee for Employment and Learning, which the witnesses have attended. Perhaps the Chairperson and the Deputy Chairperson of the Health Committee can sit down with me, as Chairperson of the Committee for Employment and Learning, and my Deputy Chairperson and the respective Committee Clerks to see whether we can do anything to advance those issues. Much positive work is being done through the community and voluntary sector and through proactive work in schools. I see that you wear a jigsaw-piece brooch, Arlene: unless the pieces of our jigsaw fit together correctly, the picture will always be bleak. I suggest that the Committees get together on this. Departments, Ministers and civil servants are making little progress; perhaps we can take initiatives of our own to push this forward.
I commend the work of all organisations, including at community level. I also commend families because no one sees the amount of work that takes place in families. People may see the good, but nobody sees the bad that families endure 24/7.
I am happy to accept that proposal.
If a seconder is required, I support Sue’s suggestion that to get action the Committee must target all the Ministers whose Departments have an input. Rather than listen to a presentation and do nothing, the Committee must be positive and demonstrate its support.
Thank you; that is seconded.
Thank you for your presentation. I would like to ask for clarification on some matters. I agree that there should be managers in trusts with particular responsibility for autism. In the solutions section of your presentation co-ordinators are mentioned. Is it envisaged that the managers will do that work or are they separate posts? I want to be clear about those ideas because I agree with them. At present, responsibility for autism is passed around personnel in the trusts, and that is not the best way of handling the issue.
The Department of Health was described as the lead Department. So long as leadership is provided by a Department, I have no strong views about which Department should provide it. The autism centre that was opened by the Ministers of Education for the North and South comes to mind, so why should the Department of Health take the lead?
The Western Trust was said to have a ratio of 2·5 staff to how many clients?
Mr J Campbell:
What is meant by clients?
Mr J Campbell:
I did not intend to use the word “clients”; it slipped out. They are young people with whom we have contact in the Western Board through our one-stop shop, at which people can be guided on issues such as housing, and where they feel safe and secure. Seventy-nine young people use that facility and another 37 are pending.
I sympathise with Mr Gallagher. I am not too picky about which Department takes responsibility, so long as one of them does. Although the Department of Education has done sterling work, it does not have a history of working with the voluntary and community sector. That would be a severe problem for, and possibly the end of, Autism NI.
Ms S Ramsey:
I must tell the Minister of Education that. [Laughter.]
Sorry; don’t quote me. [Laughter.]
Ms S Ramsey:
I am afraid that you are on record. [Laughter.]
I know; I was careful in my choice of words.
Ms S Ramsey:
I am only joking.
Let us pass quickly on.
Sometimes the terminology changes in one’s head while writing submissions such as this one.
Each of the five health and social care trusts should have an autism spectrum disorder co-ordinator in a senior management role with a proper grade so that that individual can make decisions.
A regional co-ordinator, who would probably be linked directly to the Department, should have overarching ownership. There should also be an independent commissioner for autism; I hate to use overplayed terms, but that person would be an ombudsman or champion. The commissioner could examine amendments in legislation, including the Disability Discrimination Act 1995. I am not sure how that link to legislation would be created, but there must be some sense of independent oversight. It is a health matter, but the Department of Education needs to be involved. I envisage the regional commissioner’s main role as one of making the links that seem difficult to make at other levels. The commissioner’s role could also be part of a regional joined-up strategy.
I commend the work that you have done for children and other folk who have autism. I also commend your response, which highlighted the inadequacies in the action plan. I agree that this is a cross-departmental issue and that there must be cross-departmental legislation. People who have autism have been forgotten for many years. I know, from my own constituency, that there is often no provision for children with autism who should be about to start school because teachers cannot deal with them because they have not had the appropriate training. There is no provision for parents of teenagers with autism either. We are continually faced with those problems and it is a matter of great concern.
The £2·02 million that has been secured to underpin the action plan is only a third of the amount that is required; it has come from the £17 million that was allocated to learning disability. It should be new money rather than money that is taken from another budget. I will play devil’s advocate and ask a question that may be unfair: where could money for autism come from? Furthermore, will the £2·2 million be directed to picking up on autism in the early years — as Sue mentioned — or to making older people with autism more independent and more integrated into society?
The action plan is deliberately targeted at the early years of autism; its emphasis is on identification, assessment and diagnosis on a clear referral pathway. The document is good but limited. I do not mean to be insulting by saying that it is not a strategic document; I merely mean that it is not a lifelong plan that looks to the next 10 years and beyond. I fully support what Sue said about the importance of dealing with autism in the early years.
Part of my rationale for bringing my colleagues with me today was that my comfort zone is early-years provision, and I wanted to present a balanced representation of need because, as John rightly said, children grow up. However, we must start somewhere, and the action plan is a start.
The action plan says that £2·2 million is needed over three years. However, in his Independent Review of Autism Services, Lord Maginnis felt that £2 million a year was needed, so the matter is open for debate. Where will the money come from? I am a great believer in housekeeping and in finding more efficient and effective ways of doing things. I will plug the voluntary sector now; it is added value, if nothing else. People in the voluntary sector —sometimes rather than those in the statutory sector — know how to be quick on their feet and innovative and pioneering. A responsible infrastructure must be put in place, but sometimes the service models that are used are not the most cost-effective. The funding for year one would be better spent on building up a good skeleton foundation and infrastructure. At the moment, we are in danger of throwing money at the issue but of having nothing in place to which it can stick.
Mr J Campbell:
I keep thinking of the people with autism with whom I deal. A young man called Colm said to me, “I have autism; I do not have a learning disability or a mental-health problem”. To be honest, £2·2 million is not anywhere near enough. I hate saying this because I am always shouting about adult provision, but I agree with Sue that we must start with early-years provision. I cannot stress my next point enough: what happens when the child becomes an adult at age 16?
At the minute, young adults are given inappropriate placements. Many attend a day-care facility two or three days a week alongside people with learning disabilities, and they often end up as long-stay patients in hospital. In some cases, people have been moved from Northern Ireland to the UK to be cared for. Where is the money to support young people with autism in Northern Ireland who have challenging needs? There must be a rethink of funding; it must be linked to a specific autism service. The money does not have to be given to my organisation; it could be given to any organisation, as long as the matter is dealt with properly. I think that that answers the member’s question — £2·2 million will not do it.
If no one else wants to ask a question, all that remains is for me to thank the panel for appearing before us and for making such a good presentation. The Committee will visit Wales next week, DV, to find out more about how autism is being dealt with there. Thank you again for attending, and I hope that one day soon we will get it right.