Autism (Amendment) Bill: Second Stage

Private Members' Business – in the Northern Ireland Assembly at 2:45 pm on 21st September 2021.

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Debate resumed on motion:

That the Second Stage of the Autism (Amendment) Bill [NIA 31/17-22] be agreed. — [Mrs Cameron.]

Photo of Gerry Carroll Gerry Carroll People Before Profit Alliance

I will speak briefly to support the Bill and to raise some connected issues that are very relevant to autism support, even if they are not necessarily detailed in the Bill. I raised some of it in Committee last week, but it is relevant to today's discussion.

The Bill mentions amending and strengthening autism strategies. That is important and is welcome, especially training for staff and so forth, but there is a gap. While staff should, obviously, be provided with all the necessary training and support, 14% of people with autism are not receiving the appropriate SEN assistance despite needing it. In my view, any strategy has to take that into account, and any strategy should also increase the number of staff assessing people who are in need of SEN support and increase the number of people providing that support. To be blunt, you can have the best training in the world, but there will not be enough people to implement best practice unless we have staff doing those jobs.

We have a situation with the diagnosis of autism. We have one of the highest rates in the world, but so many people are still forced to wait an excessive amount of time to receive their assessment and their confirmation of autism. Some never receive a diagnosis at all, and that needs to be factored into the debate as well. Whilst the Bill has no significant financial implications, if we are truly to support people with autism and let them be themselves, as somebody said earlier, we need increased investment, especially in support services for people with autism.

There is the stark statistic that the rate of autism in school-age children in the 10% most deprived areas is 30% higher than in average areas. That is concerning, not because there is anything obviously wrong with people who have autism but because people in deprived communities already face massive barriers and there are greater barriers generally for people with autism in society. Those barriers are higher in those areas as well.

Finally, I echo the point that was made by Nicola Brogan and Pat Sheehan about restraint and seclusion measures being used in schools and other educational settings, especially on young people with autism or any other learning disability or condition. That should not be happening. I imagine that it is very traumatic for children. That is not directly connected to the Bill, but it is something that should be factored into the conversation going forward. I am happy to support the Bill, but those other points have to be raised. If there is any way to submit amendments to that effect, we will do our best to do that.

Photo of Robin Swann Robin Swann UUP

I welcome the opportunity to respond to the Second Stage of the Autism (Amendment) Bill today, and I thank Pam Cameron for getting the Bill to this point, along with many families in our communities who have worked tirelessly to strengthen and improve the awareness and delivery of autism services across Northern Ireland. There is much to be welcomed in the Bill, and I hope that I and my officials can work closely on it with the Member in the weeks and months ahead.

I acknowledge the comments from Mr Sheehan and Mr Boylan about the cross-departmental nature of the work that needs to be done to make sure that the Bill's objectives are delivered. There has been acknowledgement of the work of former Members and previous iterations of the Assembly to get autism services to this stage. I want to add to that by acknowledging my predecessor in North Antrim, Reverend Robert Coulter, who was a champion for autism during his tenure here and as chairman of the board of governors of Castle Tower School in Ballymena. It is through Bob's work that, even before being elected here, I was aware of the prevalence of autism in our society.

As I have said many times before, I am also conscious of the challenges that the growing waiting lists for assessment and support pose to individuals and families, and I have stated in the House that that situation is unacceptable. However, we must also acknowledge how far we have come in our awareness of autism — Peter Weir mentioned that in his contribution — and in recognising the changes that we must make in our society if we are to enable autistic people and their families to feel supported, included and accepted.

I have heard the criticisms of the previous autism strategy, but I am also aware of the many welcome steps that were in it. I thank those who acknowledged that changes are being made to embrace how we address autistic people's needs in the delivery of services, how we interact with our communities and how opportunities have been provided. That will continue to evolve through Mrs Cameron's Bill.

Nevertheless, there is always room for further progress, and I can assure you that I and my Department are fully aware of the work that needs to be undertaken to address that. My Department has been, I feel, open and honest in declaring that more could and should have been achieved. That has also been my assessment, since coming into the Department of Health last year.

From extensive engagement with people who have lived experience of autism and from the relationships that have been built in recent years with the community and voluntary sector organisations, we are informed about the areas in which progress needs to be made. More importantly, however, we are acutely aware of the need for autistic people to be included in the development of policies, strategies and the services that affect them, in order to ensure that those are people-centred from the outset.

I last spoke on an Assembly motion in May about the work that is being undertaken by my Department, which is in collaboration with people with lived experience. I would like to take this opportunity to update the House on the work that we have been doing. As you will know, my Department published an interim autism strategy in March of this year for a two-year period in order to allow for the development of a longer-term strategy. That, unfortunately, has been severely constrained as a result of the pandemic.

Since then, however, my officials have been working across Departments and the health and social care sector to finalise a series of outcome-based, measurable actions that will be aligned to the Programme for Government and will support the key priorities set out in the strategy. It has been acknowledged that this is not solely in the remit of the Department of Health, and I want to thank the different voices that we heard today from members of the Education and Communities Committees.

This work has been undertaken during a period when services are rebuilding due to the impact of the pandemic. Many of the actions that were previously prepared for implementation have been reshaped or amended due to learning throughout this period, which relates particularly to the impact of the pandemic on autistic people. Unfortunately, some actions have been delayed. Once completed, the actions will be monitored and evaluated to ensure that they make a difference to the people that matter: autistic people, their families and their carers.

That leads me to the establishment of an autism forum by my Department in recent months. The forum is comprised of people with lived experience and community and voluntary sector representatives who represent them. The forum is co-chaired by my Department and two autistic advocates. The forum has held two workshops: the first was to establish the terms of reference for the forum and the second was to determine the priorities for a longer-term autism strategy. The next meeting will take place in a couple of weeks.

The autism forum was established with the intent that it would be an independent group that could influence and scrutinise the work undertaken by Departments in relation to autism. It is in the best position to advise whether our actions are making a difference or whether we need to redirect priorities. It will advise whether there is a need for research or where the inclusion of recently published research must be focused. Collectively, that group and the Departments will co-produce and co-design actions along with the outcome-based measures in relation to autism. They will also influence how we can develop our services further. Progress can only be effectively assessed if there are measures in place that can be evaluated. It has been welcomed by members of the forum, and all of us here today should welcome and embrace the progress.

In addition to that, in recent months, my Department commenced collaborative work on the development of an understanding autism e-learning package that will be accessible to all staff across Departments and will signpost to more specific and comprehensive training for those who work in areas that need it, such as those on the front line or in public-facing services. I have also been advised that some areas of our Departments are already working towards accredited training. The learning package will be co-produced by the autism forum and civil servants with lived experience of autism. As Departments, we recognise that we must increase our understanding of autism. We must enhance how we support autistic people in the workplace and in our communities, as well as how we develop and deliver services.

To underpin the preparations for a longer-term strategy and to ensure that a wide audience has the opportunity to express their views on the priorities that need to be addressed within the strategy, my Department launched a consultative questionnaire to provide an opportunity for views to be contributed to shape that longer-term strategy. The questionnaire will remain open until 8 October 2021. Following an analysis of the responses, my officials will submit recommendations to me, outlining priorities for the next strategy. Those recommendations will be based on what people say that we need to do. That will happen prior to work commencing on the longer-term strategy.

While I reinforce that we must work together to improve services for autistic people, their families and their carers, I am conscious that considerable progress has still to be made to improve the situation of ever-increasing waiting lists for assessment. Individuals, families and carers need support. To do that, we need to focus more on early intervention. That is also a focus of the autism strategy for our health and social care sector. In recent months, the Health and Social Care Board has liaised with trusts with extensive waiting lists and those where disparity has been evident in access of service across the region. Their findings will be provided to me once that work is completed. I must acknowledge, however, that a diagnosis is not a golden ticket for support and access to services. It is simply the start of the journey, because individuals and families face confusion and concern as they embark on that road. Whilst they are at an early stage, discussions have commenced about how we can provide services across the region that will navigate individuals and families through the system and to sources of support at their greatest time of need and, perhaps more importantly, in a way that best suits their needs at that time.

Whilst I recognise that we all wish to see progress being made in supporting autistic people and their families, I can assure the House that my Department, all Departments and the wider health and social care sector are committed to driving change. Reflecting on Mr Weir's point — it was about the strange place that we are going and an analogy with weddings and different things; I was not sure where it would end up — the changes have not been driven by legislation or the need for further legislation. They have been made because the need for change was recognised. We have services that have been stretched to their limits over the past year, and that continues. Our COVID-19 figures show that we still have some way to go until we recover. Whilst we know that our health and social care workforce is committed, that was demonstrated to lengths that we would never have thought were imaginable.

As I speak, I hope that some of the issues highlighted in the Bill have been shown to be recognised and are being addressed. However, as I said earlier, I look forward to working with the Bill's sponsor in the time ahead as she progresses the Bill through its legislative stages. I encourage Members to support the Bill at its next stage when it gets there.

Photo of Pam Cameron Pam Cameron DUP 3:00 pm, 21st September 2021

I again thank all past and present Members, and, of course, the all-party group on autism, for their efforts in passing the original Autism Act, which was, and remains, a landmark piece of legislation.

I am here to ask you to support the principles of the Autism (Amendment) Bill. The Bill aims to strengthen the original Autism Act to ensure that we do better for our autism community. I state my thanks and appreciation to all those Members who have stated their support for the Bill and to the all-party group on autism. They have all contributed to the progression of the Bill to this stage.

I extend enormous thanks to the Bill Office for its devotion and support throughout the process and, of course, to the drafter of the Bill. I also thank the secretariat of the all-party group on autism, which is provided by Autism NI, for their tireless efforts and the efforts that they put into developing the Autism Act and the Autism (Amendment) Bill. I also thank and acknowledge our other autism charities and organisations for their work throughout Northern Ireland and all those who too often provide lifelines to families that are desperately in need of help and support. Finally, I thank the Health Minister for attending the entirety of the debate and for his good wishes for the Bill. I look forward to working with him and his Department as we progress the Bill further.

As we are all too aware, this Bill is about addressing the ways in which we have failed our autism community. To briefly summarise again, the Bill aims to make practical changes to improve autistic lives by appointing an independent autism reviewer to ensure scrutiny and accountability of the autism strategy; ensuring that the needs of autistic adults are met in terms of lifelong learning, employment support, recreation, well-being and supported living; creating a regional early intervention service; introducing an information service and helpline for autistic individuals and their families, carers and professionals; providing training to all NI Departments and public bodies; ensuring that the Department of Health's approach to autism considers best international practice and is multidisciplinary and consistent across all health and social care trusts; providing autism prevalence data for adults as well as children; setting measurable targets to judge the success of the autism strategy; and providing an annual report to the Assembly that details how autism funding is allocated.

All of those measures are needed to tackle the urgent difficulties, such as waiting lists, access to services and health inequalities, resulting from the current inconsistency of services that Members such as Cara Hunter touched on, whereby those in the rural and most deprived areas are least likely to have access to the support and services that they need.

I also thank Members for raising real, practical issues and asking how those will be addressed in the Bill. The Bill was developed out of a practical need for change and improvement for our autism community. It was developed after a large public consultation that received over 1,800 responses. It is vital that the spirit of consultation with those who have knowledge and experience continues, and that is why I have reached out to grassroots organisations that are involved with autism. I have asked them to respond to the Health Committee's call for evidence should the Bill pass its Second Stage. I encourage other Members and parties with an interest in autism to respond to the call for evidence.

I recognise that some Members have raised concerns, and I thank them for their valuable contributions to the debate. I will address some of those concerns immediately. I thank the Chair of the Health Committee, Colm Gildernew, for his contribution and words of support. I will now address his query on research to outline the potential costs from the Bill, which the vice chair of the all-party group on autism, Cathal Boylan, echoed. When presenting at the Health Committee last week, I explained that we were waiting for research from the Assembly's Research and Information Service (RaISe). I can confirm that we requested research from RaISe that explored the potential costs of a reviewer model. Originally, the research was considering the costs of a commissioner model, which is not comparable to the reviewer model that we propose, as it would be much more expensive. We asked RaISe to amend the research to compare with a reviewer model. RaISe has explained that the only two models that it is aware of that have lower comparative costs are the mental health champion and the UK terrorism legislation reviewer.

Colm also mentioned the costs of implementing an early intervention service. Although we do not have the costings for that service, research has consistently shown that early intervention is essential to bringing about the best outcomes. Thanks to the work of RaISe, we have further research that demonstrates that the economic costs of not acting are greater than those of intervening, as costs are deferred until further down the line, when individuals need access to more complex services to meet their needs.

I thank Daniel McCrossan, Alan Chambers, Peter Weir, Nicola Brogan, Justin McNulty, Robbie Butler, Pat Sheehan, Chris Lyttle and Cara Hunter. We also had a contribution from Gerry Carroll, along with one from the Minister of Health at the end. I thank them for outlining the needs that they have been made aware of in their constituencies and in their personal lives for further raising awareness of the wider issues that we are here to address and for their words of support for the Bill's principles.

I welcome comments from Members such as Pat Sheehan, who called for increased interdepartmental cooperation. The needs of autistic people are not limited to the Department of Health. Pat also noted that, despite vast amounts of investment, the Education Authority (EA) and the Department of Education struggle to demonstrate value for money. That again demonstrates the need for the independent scrutiny that the proposed autism reviewer would carry out.

Nicola Brogan asked how the Bill addressed the educational needs of children and young people. She spoke about shortened school days and reduced timetables for autistic pupils.

The requirement for the staff of all NI Departments and public bodies to receive autism training, the introduction of an early intervention service, the requirement for regional consistency across trusts, the requirement for an autism reviewer able to scrutinise best international practice relating to autism and the commissioning of independent research will all go a long way to improving the emotional, social and educational difficulties felt by many autistic children and young people.

I also thank Nicola, Gerry Carroll and other Members for raising the current issues of restraint and seclusion in schools. The areas that I have discussed, particularly a focus on adequate training, the introduction of an early intervention service and recent robust research on best practice, will help provide solutions to that issue. The Committee and I will, however, be open to further discussions on the topic should the Bill progress to the next stage.

I thank Chris Lyttle for his support and contributions to the debate and, of course, his contributions as a member of the all-party group on autism. I recognise his suggestion that sports coaching be integrated into clause 2, which discusses training opportunities, and I would welcome further discussion on that topic at Committee Stage, should the Bill progress.

I thank Cara Hunter for raising the issue of the detrimental impact of waiting lists on achievement right into adulthood and for her comments welcoming an autism reviewer to hold the Department to account.

I also acknowledge the contributions from Paula Bradshaw and Gerry Carroll. Paula raised questions around workforce planning, and, as she noted, that is, perhaps, a discussion more appropriate for Committee Stage. However, I acknowledge her contribution and recognise that that is an important discussion to be had.

When initially discussing the autism reviewer, we discussed the possibility of an autism advocate, something similar to a commissioner model. We concluded that we did not need someone to speak for the autism community: we needed someone to scrutinise the autism strategy's implementation and success. We need someone to commission independent research and to scrutinise practice, provision and the effectiveness of services.

I reiterate that the public consultation found that 92% of respondents supported the need for an independent scrutiny mechanism, as they believe that scrutiny, transparency and research in relation to autism services are currently inadequate. Importantly, it is proposed that the reviewer produce for the Department an annual report that must be presented to the Assembly. In understanding the core needs and functions of a scrutiny mechanism, I tried to be practical in understanding the current situation. As a result of the drive for effectiveness and practicality, I proposed an autism reviewer that adopts a reviewer model. I have previously used the mental health champion and the UK's Independent Reviewer of Terrorism Legislation as examples. The goal is to have a scrutiny mechanism independent from the Department of Health that is effective in promoting and ensuring change and effective practice. The role should be filled by an appropriate individual and be cost-effective.

I want to put on record and briefly address the Bill's use of language when discussing autism. I understand that there has been much debate about how people should talk about autism. The general rule is to ask a person how they prefer to be referred to. When the original Autism Act of 2011 was developed, there appeared to be a general preference for "Person first" terminology, that is describing someone as "a person with autism". More recent research has indicated that autistic people would prefer to be referred to as "autistic" rather than as "a person with autism". As "Person first" language was used to write the original Autism Act, the Autism (Amendment) Bill had to use the same language; otherwise, it would have had to be repealed and re-enacted.

I kindly ask Members to put their support behind the principles of the Bill and commit to making changes for our autism community.

Question put and agreed to. Resolved:

That the Second Stage of the Autism (Amendment) Bill [NIA 31/17-22] be agreed.

Photo of Roy Beggs Roy Beggs UUP

That concludes the Second Stage of the Autism (Amendment) Bill. The Bill stands referred to the Committee for Health. I ask Members to take their ease for a few moments.

(Mr Speaker in the Chair)