Autism Spectrum Disorder Bill 2017: Committee and Remaining Stages

Sections 1 and 2 agreed to.
SECTION 3

Amendments Nos. 1 to 4, inclusive, are related and may be discussed together.

I move amendment No. 1:

In page 4, line 33, to delete “team of medical professionals comprising” and substitute “cross-functional team of medical professionals comprising for example”.

I have tabled amendment No. 1 to make it very clear the list of professionals to be involved is not exclusive. I hope Members will agree to making it as inclusive as possible, depending on the circumstances of the individual involved.

Amendment No. 2 proposes to delete lines 3 and 4 on page 5 and substitute the following:

(v) a behavioural therapist,

(vi) where indicated, a social worker, and

(vii) other professionals as may be deemed appropriate...

Again it is to ensure we would have a provision that would be as inclusive as possible, given the circumstances of any individual involved and the different professionals involved. There may also be others who may be involved.

Amendment No. 3 proposed to delete on line 7 on page 5 the word “annual” and substitute “at least annually”. In some ways, it is self-explanatory because it is very clear that in certain circumstances people will need to be reviewed more frequently than annually. The inclusion of the phrase "at least annually" would make sure there would be an annual review. In many circumstances they might be a need for more frequent reviews, but I did not want the amendment to be misconstrued in any way.

Amendment No. 4 proposes to delete on line 21 on page 5 the words “of care”. This is important because, on reflection and in discussions with the Department, we were concerned that it would only be seen as a care issue and that other issues such as employment, housing, transport and so on would not be included. We want a clear pathway for the person who looks at all issues in terms of his or her ability to lead as independent a life as possible.

I hope Members, as well as the Minister, can agree to include the amendments in the Bill.

As a medic, I am delighted to wholeheartedly support the Bill. It is good, pragmatic, solution-driven and concise. The Fianna Fail Party is happy to see it proceed through the respective Stages as it provides for a cross-departmental, multi-agency strategy. We are happy to support the principles behind an autism spectrum disorder strategy which seeks to address the specific needs of people with autism using a cross-departmental approach.

During the debate on Second Stage Senator James Reilly said - I wholeheartedly agree with him - that while we had excellent medical experts, as well as allied experts in speech and language and behaviour therapy and other areas, the experts on a child were his or her parents. In my own practice on many occasions I have seen parents who are so frustrated because they know what their child requires, but often he or she never receives a service. They are the ones who spend every waking moment with their child and know what he or she excels at and with what he or she may need help. They are crying out for assistance, whether it be in the area of education, health or welfare, to give their son or daughter a greater quality of life which is what it is all about at the end of the day. We are here to improve the quality of life of children who suffer from autism.

A national review of autism services was undertaken by the HSE in 2012. It concluded:

Geographically, current services can vary from robust, comprehensive and integrated to isolated, patchy and ineffective. This model is no longer appropriate or sustainable in providing equity of access and intervention.

"Isolated", "patchy" and "ineffective" are the terms with which I would be most familiar when speaking to parents. Across Ireland there are different models and approaches to the provision of health services in local health office, LHO, and HSE areas, but this is no longer appropriate or sustainable in providing for equity of access and intervention. There is no joined-up thinking, but I hope there will be after the passage of the Bill which offers an integrated approach to meeting the needs of people with an autism spectrum disorder, as well as generic health needs, which can be met at primary care level and which should be addressed by primary care teams. I am delighted with Senator James Reilly's amendment No. 2 which would be very inclusive of all of the agencies and experts involved. Where specialist knowledge, skills and expertise are required, a child should be referred to specialist services, including in education. A strategy that cuts across all Departments and acknowledges that every Department has a role to play will ensure a more streamlined approach is adopted.

In summary, we are very happy with the Bill and I commend Senator James Reilly for bringing it before the House. I am delighted that it is receiving cross-party support.

I take the opportunity to welcome to the Visitors Gallery a delegation, all good friends of mine, from Doohoma, County Mayo.

I also welcome the Senator's friends from Doohoma. I know that part of the country.

I welcome Senator Reilly's Bill. Hopefully it will go through smoothly today. Senators may be aware that the Seanad has been holding public consultations on Thursdays with all stakeholders in the area of child mental health. We hear harrowing stories from parents and also stories that are not so harrowing - but maybe they are glossed over by the HSE. We know the state of the child and adolescent mental health services, CAMHS, in the country and we will be compiling a report. Today's session was dedicated to those parents who did not feel that they could go public. One of the very powerful testimonies was from a parent with a child who was also diagnosed on the autism spectrum. To marry the two is extremely difficult; they are worlds apart. Nobody will touch the case in mental health and no-one will touch it in the autism area because both areas are not integrated and they fall through the cracks. The report will be out in the autumn and hopefully we will be able to discuss it in a lot more detail then. It will be quite revealing and it is informed by the parents on the ground. With their experience it is they we take as the experts and we take their lead.

I wanted to ask Senator Reilly about amendments Nos. 1 and 5.

Amendment No. 5 comes later. We are discussing amendments Nos. 1 to 4, inclusive.

On amendment No. 1, there is a minimum requirement of medical professionals that must be present for individual assessments. Is there a minimum requirement in the context of the amendment? Amendment No. 2 allows for the widening of the scope of professionals as may be deemed appropriate. This is a welcome provision. I would ask for clarity on amendment No. 1 because I have a slight concern that inclusion of the words "for example" leads to the discretion being open to going the other way, which could result in assessments being conducted without a representation of a full team of professionals. Perhaps Senator Reilly could clarify if this is an aspect of the legislation for which amendment No. 1 refers, in the context of it being a requirement or a suggestion? I am concerned that the amendment of inclusion of "for example" would indicate that it is, indeed, a suggestion only. That might weaken the legislation. Perhaps the Senator could put my mind at ease.

I apologise that I was late arriving to this meeting. I commend Senator Reilly's Bill. The Green Party very much supports the Bill. I have nothing to add other than full support. As Senator Reilly knows, my own daughter who is 26 is on the autism spectrum. She was born in the Netherlands where we got great support and great services. This Bill is going quite some way in achieving that and in giving supports and rights to people with autism. I very much commend the Bill.

I welcome these amendments. I thank Senator Reilly and all the parties in the Seanad for their support for this important legislation. With regard to Senator Devine's point, while the Bill outlines where we wish to see the strategy go, it is important that it does not try to become the strategy. In fairness, just like the Seanad has been doing through its public consultation around mental health, as Senator Devine has said, the idea of this Bill is to enable and ensure the development of a strategy. As we put the strategy together, it is very important that we will not have been overly prescriptive in the primary legislation in order to enable the voices of the parent and the child or adult with autism to be heard on what they need to happen. I am conscious, in putting together this important legislation, that we have not yet reached the part where their voices are heard. The amendments are balanced and fair in that regard, in making sure there are no unintended consequences by leaving somebody out or by having the Bill misread. At the same time they need to leave enough flexibility for the strategy to actually evolve as we engage with the community.

I thank the Senators for their comments and their support. I will answer the question on amendment No. 1 and the term “team of medical professionals comprising” being changed to “cross-functional team of medical professionals comprising for example”. There are extra words in there. The term "cross-functional" would be much more inclusive of many other people who might have a role to play. "For example" makes sure that it is not exclusive. That was purposely done under legal advice to make sure those concerned would have available to them the full number of professionals and paraprofessionals required to input into the his or her care and pathway of care for the future. There is no intention at all to dilute that down.

It is important to re-emphasise what the Minister has just said. This is about putting into law a Bill that would demand an implementation plan for a national strategy. It is not going to design the strategy itself. That would be pre-emptive. We want people and all stakeholders to come together and have a say in this, especially families and those with autism who are able to speak for themselves, although we know that some are not able to. I thank Senator Devine for her support and I reassure her that this amendment is to improve the Bill and to improve the latitude available within the national implementation strategy rather than to curtail it in any way or to dilute it.

Does Senator Devine wish to come back in?

No, but I thank Senator Reilly for the clarity.

Amendment agreed to.

I move amendment No. 2:

In page 5, to delete lines 3 and 4 and substitute the following:

“(v) a behavioural therapist,

(vi) where indicated, a social worker, and

(vii) other professionals as may be deemed appropriate,”.

Amendment agreed to.

I move amendment No. 3:

In page 5, line 7, to delete “annual” and substitute “at least annually”.

Amendment agreed to.

I move amendment No. 4:

In page 5, line 21, to delete “of care”.

Amendment agreed to.

Amendments Nos. 5 and 6 are related and may be discussed together. Is that agreed? Agreed.

I move amendment No. 5:

In page 6, between lines 1 and 2, to insert the following:

“(3) The Autism Spectrum Disorder Strategy shall include a costed implementation plan which may be incremental.”.

The inclusion of "costed implementation plan" makes it much more real and more palpable to people that this will be done and that it will be properly costed. It does not necessarily imply that there will be increased costs. There may be increased costs - who is to say? - because within a budget of €13 billion or €14 billion into the future there is plenty of latitude for movement and for reorganisation. The reason we say that it may be incremental is to allow it to be implemented as quickly as possible and allow for more money to be put into it if that need becomes apparent as the strategy is implemented.

Amendment No. 6 states:

In page 6, line 4, after “Strategy” to insert “, in consultation with other relevant Government Departments”.

This is for clarity and to emphasise that this is not a Department of Health issue alone. This goes right across Government. If we are to have any chance of success the Departments covering education, transport, housing, the environment must be involved and consulted. Virtually anything one cares to mention is going to be impacted because people with autism, no more than the ordinary citizen, are in all walks of life, in all parts of the country in all sorts of geographical settings. Their needs in this area must be addressed. No Department will be without responsibility here, but if everybody is responsible then nobody is responsible. This is why the Minister for Health will be responsible. The purpose of amendment No. 6 is to emphasise the fact that all the Departments will have an obligation to consult and support the Minister.

With regard to the cost of the implementation plan, I see from the notes that the strategy would be published at least every three years. Would it be the Senator's wish and intention to have this as an annual publication to keep both Houses up to date with progress?

There is nothing to stop the Minister from giving an annual report. There is nothing to stop anyone from the floor of either House seeking an annual report or an update. I did think long and hard about not putting that provision in, but having had the experience of being a Minister I wanted to avoid three of the 12 months being taken up by the Department in the preparation of a report for the end of the year.

I want it to be implementing this and delivering service to people. There are parents in the Visitors Gallery. Senators who are parents, including me, and the Minister, who has personal experience in this area, realise we need to put the services in place and focus on that. We require coherent, organised services that deliver for those with autism and that enable their families to support them in reaching their maximum potential and becoming as independent as possible. I thank the Senator and understand the sentiment completely.

Amendment No. 5 is the most important and the success of the legislation depends on it. The cost of implementing it must be fully met by an increase in the overall budget for disability services. One cannot stretch the budget; it is already in crisis. I urge the Minister, Deputy Harris, to use the detailed legislation and plan for autism care to argue for the increase in funding for disability services overall.

The proposed section 5(4) states the Minister shall, not more than three years after the publication of the first strategy, prepare and cause to be published on the Internet a report that details progress made by each Department in contributing to the implementation of the strategy. That is very welcome. It is holding Departments to account and probably giving them a little push towards beginning to think about implementation in the areas in which they are involved, such as transport, education and housing, and on which action needs to be taken.

Amendment agreed to.
Section 3, as amended, agreed to.
SECTION 4

I move amendment No. 6:

In page 6, line 4, after "Strategy" to insert ", in consultation with other relevant Government Departments".

Bill reported with amendments and received for final consideration.

Amendment agreed to.
Section 4, as amended, agreed to.
Sections 5 to 10, inclusive, agreed to.
Title agreed to.
Question proposed: "That the Bill do now pass."

I am very pleased to be back here in the Seanad today. I thank the Acting Chairman for the opportunity to speak on this Bill, which deals with how we, as legislators, set about meeting the needs of those with autism. I join colleagues in the Oireachtas in thanking Senator James Reilly for his work and for his interest over a long period in this very important matter. I have been campaigning for a national autism strategy since the age of 15 or so. The Oireachtas and I, as Minister, now have an opportunity to make this a reality. We all share a common desire to have the best possible policies and services for all children, adolescents and adults with disabilities across this country. Both personally and as Minister for Health, I want everybody with a disability, including those with autism spectrum disorder to have access to the necessary supports to enable them to achieve their full potential and maximise their independence and live a rich and fulfilling life. It is easy to say those words but there is a lot of work we need to do as a country to make sure they are meaningful in the lives of so many individuals and their families across this country.

When we debated the Second Stage of this Bill in May, I highlighted the aspects that would need to be addressed in a considered fashion and with input across a number of other Departments. I am pleased to hear all Senators saying that. It is not just a health issue or an issue for the Department of Health. Since there was a short timeframe for the Bill proceeding to Committee Stage – I understand why – it has not yet been possible for proper consideration to be given to a number of areas across several Departments involved, and the appropriate legal input from the Office of the Attorney General. We have an opportunity, as this legislation moves to the other House, to have an input from other Departments.

In recent years, national policy has moved to focus on the services to be delivered to support the needs of the individual rather than the provision of services based on a specific disability diagnosis. The national strategies on disability, such as the forthcoming national disability inclusion strategy and the comprehensive employment strategy, have been led by the Department of Justice and Equality. This reflects the shift away from viewing people with a disability as a patient or solely the responsibility of the health services towards mainstreaming supports and services into communities and wider society.

The national disability inclusion strategy, which will be published this Friday, will take a whole-of-Government approach to improving the lives of people with disabilities. The strategy is envisaged as a "living document". Its implementation will be supported by independent analysis and advice from the National Disability Authority, and also by periodic review and oversight by the Cabinet committee on social policy. This model of measured, well-thought-out strategy formulation ensures that the policy will fulfil all its objectives in an efficient and costed way.

I am very supportive of the overarching objective of this Bill, the preparation of a cross-Government autism spectrum strategy. I am a keen believer in the maxim that what gets measured gets done. I would add a corollary to that: what gets written down gets measured. In this regard, it should be noted that the forthcoming national disability inclusion strategy will include a specific action for the implementation of an action plan on autism, in addition to this legislation. I believe that this is the most equitable approach to ensuring that people, regardless of diagnosis, are provided with the supports required to reach their potential.

As Minister for Health I recognise the need for a strategic approach to enhancing the responsiveness and effectiveness of services to meet the evolving needs of people with autism spectrum disorder. At my request, the HSE has set up a working group to consider the effectiveness of existing services and identify models of good practice among such services to meet the needs of people with autism spectrum disorder. I have done this not only because I want to identify models of good practice but also because I want to identify, through this process, practice models that are not having a positive impact. It is important that we identify where in the country services are operating well and where they are not. We should map them out so we can identify the scale of the challenge in an organised way.

There is clearly a need for service providers to set up data collection systems to record the number of their clients with autism spectrum disorder in order to gauge the bigger picture of the resources required. With this in mind, I have asked my officials to initiate an epidemiological research study into the prevalence and future projections for autism spectrum disorder later this year. There is no point in planning just for the here and now; we need to consider the prevalence of autism now but also the projected level in the future so we can plan and future-proof our strategies for people with autism.

Subject to the advancement of both of these tasks, I intend to proceed next year with the strategy for enhancing the health service response to people with autism spectrum disorder. Importantly, I want to see that models of good practice are replicated. Equally, where the evidence does not support existing practice, I want it discontinued and replaced with models of good practice. This is where my own thinking overlaps with this important Bill. There are, however, some points of difference, most notably on the prescriptive nature of the Bill and the very broad scope, which goes beyond the health area, and which requires my consultation with Government colleagues. Let me be absolutely clear: I wish to see the development of an autism strategy and I will work to achieve this, including with Senator Reilly and all Senators, but there is an onus on me, as Minister, to set out some of the possible legal difficulties with the Bill before us, which I have discussed with Senator Reilly and on which we are committed to working together as this legislation proceeds to the other House. These include the fact that the proposed Bill, however well intended as currently drafted, confers additional rights to some individuals that persons with other disabilities would not have. This obviously raises serious equality concerns, which we need to address. Assigning an operational role to a Minister in respect of one disability would potentially undermine the statutory legal structure under which the health service is provided in the State. Under the governance structures laid down in the Health Act 2004, the Minister for Health has responsibility for developing policy and monitoring its implementation whereas the HSE has responsibility for all operational matters, including the implementation of those policies.

The implications of the Bill for the Disability Act 2005, the Education for Persons with Special Educational Needs Act 2004, as well as any other relevant Act which may need amendment on foot of it, are yet to be determined. The Bill imposes a statutory mandatory duty on the Minister for Health for the actual implementation of the autism spectrum disorder strategy, including those parts relevant to other Ministers or bodies outside his or her area of statutory responsibility. This raises the potential for conflict with existing laws which set out these statutory responsibilities. It is important that this be teased out because I agree with Senator James Reilly that one Minister needs to take responsibility, but it must be ensured the statutory responsibilities of other Ministers will be aligned in legislation.

We also need to recognise that there will be additional resource implications attaching to implementation of the Bill. There will be costs in providing access to all of the services in the manner proposed. There is a need for a subject-to-resources provision in the Bill, notwithstanding that the explanatory memorandum purports to convey that the positive duties are intended to be carried out within existing resources. We need to be honest and ambitious in acknowledging additional resources will be required and that we need to work together to secure such resources to make the a strategy a reality. This obviously raises questions about the need for a money message as the Bill progresses through the Oireachtas.

There is no commencement provision in the Bill. This means that it will come into operation on its enactment, a proposition which will pose a difficulty if all aspects of practical delivery of what is intended under the Bill are not in place. In other words, if we pass the Bill, we need to get on with making the strategy a reality and consulting the community in its drafting. What is needed is detailed engagement and consideration by the Departments of Justice and Equality; Education and Skills; Social Protection; Jobs, Enterprise and Innovation; Children and Youth Affairs; and Housing, Planning, Community and Local Government. We will then build on the useful engagement my officials had with Senator James Reilly recently to see if we can further address the issues raised in the Bill with an input from across government.

I am not pouring cold water on an important Bill and a strategy which should be underpinned by legislation. Today, however, we are taking a big step forward with the passage of the Bill in the Seanad. It will then obviously be brought to the Dáil when I hope there will be an opportunity to engage in consultation with the various autism groups which would like to contribute their views. Perhaps that might happen at the relevant Oireachtas committee. We have a large body of work ahead of us, one for which we are all up in this House. We are taking a seismic step forward in making it clear that it is my wish and that of this House, on a cross-party basis, that we see the Bill being advanced under Senator James Reilly's leadership and stewardship and that we work together to put a national autism strategy in place. I thank Senators for their close attention to this complex legislation. I look forward to working with everyone in this as well as the other House to develop the legislation further.

I thank the Minister for his comments. I was particularly happy to hear him use the words “evolving need”. There is no doubt that this situation is dynamic and that, as time passes, real change will be needed. The implementation strategy should be capable of addressing it.

I argue that costs do not apply to the Bill but will apply to the national strategy when it is implemented. At that point, there will a need for costings and it will then become a money issue. My view is that the Bill, as drafted, is not a money Bill. We purposely did not include a commencement clause because, as the Minister rightly pointed out, the Bill could be delayed sine die.

This is a good day. I thank Members and the Minister for their support, as well as the Department for its help. Yesterday Mr. Brian MacCraith, president of Dublin City University, told me how DCU intended in the forthcoming weeks to introduce an ASD-friendly campus, which I welcome as it is a further testament to the forward-looking attitude of the university. The Bill, when implemented and the strategy put in place, will give over 60,000 families greater certainty about the provision of autism supports. One in 68 children is on the autistic spectrum, meaning that over 60,000 families struggle every day to receive greater support for a loved one who has the condition. As a parent, I know the horrors of this and the uncertainty and worry that, with each passing day, one is losing ground and that one’s child will not be given the opportunity he - it mainly affects males - or she may need. Adults who are affected more profoundly, as well as those who on the surface are less affected, suffer from all types of symptom and problem for which they require support. They cannot give of themselves and contribute in a way they would like without such support, yet when they do, their contribution can be remarkable. If nothing else, for those with the hard economic nose who might be listening, providing these supports can save money in the long term. The child who may have ended up in an institution could survive in sheltered housing. The child who may have needed sheltered housing might survive independently at home. The adult who would not have been able to work, might be able to attend a sheltered workshop or even enter the full workforce, as many do. Many parts of this process involve various Departments.

By nature, Irish people are generous and kind. I know this from my area, the peninsula of Portrane, Donabate and Lusk, where those with mental health issues are always welcomed with open arms. All they need is understanding and awareness. When they are on that wavelength, they are kind and make accommodations. That allows somebody with a difficulty more opportunities to explain what it is that is upsetting, bothering and causing him or her to behave in the way he or she is.

I am glad that we have made this decision today. I have mentioned before the strategies that are in place in many other countries. We need a concise plan to address what is becoming an increasingly common condition. Some even talk about it being an epidemic.

I thank the more than 21,000 people who signed the online petition. I appeal to them to keep trying to get more people to sign it. As the Minister pointed out, the Bill will have to go before the Dáil where a battle will have to be fought. We will all be watching and keeping the pressure on because this issue is not going to go away. We want children and adults with autism to have the best we can offer them, as well as giving them the best chance to give of themselves to society.

I must mention the Parliamentary Counsel, Mr. Brian Hunt, who did significant work on the Bill pro bono. In 2012 former Deputy Michael McCarthy introduced a Bill which was not quite the same as this to put in a place a national autism strategy. I wish him well in his new line of work.

I thank my colleagues in the Seanad for their unanimous support and the Minister for his help. Most of all, I thank the citizens on the autistic spectrum and their families for their perseverance and support.

We have been behind the curve. The Bill gives us opportunity to get ahead of it, not just for those with autism before for everybody with a disability. As we progress the Bill and develop the strategy, it should be merged with other strategies. It is not exclusive but must be inclusive. The needs of people with autism are particular and diverse. There are many others with a disability whose needs must be met too. I can only see good coming from this. There is no question of making the lot of people with autism better than the lot of others in a way that is discriminatory. I want the lot of all people with a disability to be improved.

I have chosen this particular issue to champion for obvious reasons. It is what got me involved in politics on the health board 27 years ago and it is something that is still very close to my heart. I have a passion for it.

I thank everybody. I wish the Minister well in progressing the Bill through Dáil Éireann. He will have our constant support at his back and by his side.

Question put and agreed to.
Sitting suspended at 4.40 p.m. and resumed at 5 p.m.