Northern Ireland Assembly _________________________ COMMITTEE FOR HEALTH, SOCIAL SERVICES AND PUBLIC SAFETY ________________________ OFFICIAL REPORT (Hansard) ________________________ Draft Autism Bill: Evidence Session with the All-Party Assembly Group on Autism Secretariat 14 October 2010 NORTHERN IRELAND ASSEMBLY ___________ COMMITTEE FOR HEALTH, SOCIAL SERVICES AND PUBLIC SAFETY ___________ Draft Autism Bill: Evidence Session with the All-Party Assembly Group on Autism Secretariat ___________ 14 October 2010 Members present for all or part of the proceedings: Mr Jim Wells (Chairperson) Mrs Michelle O’Neill (Deputy Chairperson) Mr Mickey Brady Dr Kieran Deeny Mr Alex Easton Mr Tommy Gallagher Mr Sam Gardiner Mr John McCallister Ms Sue Ramsey Witnesses: Mr Dominic Bradley MLA ) All-Party Assembly Group on Autism Secretariat Mrs Arlene Cassidy ) The Chairperson (Mr Wells): With us today are Dominic and Arlene, both of whom have been before the Committee on several occasions. Although Dominic Bradley needs little introduction to anyone in the room, he is an MLA for Newry and Armagh and chairperson of the all-party Assembly group on autism (APAGA). Arlene Cassidy is a member of the group’s secretariat. As is usual, Dominic, you 1 have 10 minutes in which to make an opening presentation, after which I will invite members to ask questions on the draft private Member’s Bill. Mr Dominic Bradley (All-Party Assembly Group on Autism Secretariat): Thank you for the opportunity to present evidence to the Committee on the draft autism Bill for Northern Ireland. We have been before the Committee on one previous occasion, and I am pleased to say that we have advanced the proposed Bill since then. The Committee has a copy of the draft Bill, and we intend to make few further changes to it. A single word or phrase here and there might change, but any further changes will be minimal. I am the proposer of the draft Bill on behalf of the all-party group on autism. Arlene Cassidy is the chief executive of Autism NI and provides secretarial services to the group. Some members of the Committee, including Michelle O’Neill, are also members of the group. We sent a copy of our presentation to the Committee earlier, and it illustrates the tension between the unprecedented and rapid rise in the prevalence of autistic spectrum disorder (ASD) and the limited resources that are available to meet the resulting needs. The case that I wish to put to the Committee today is that the historical failure to prioritise autism appropriately is compounded by the failure of existing legislation to recognise the disability. The draft Bill addresses that anomaly. To ensure that ASD is included, it amends the definition of disability in the existing Disability Discrimination Act (DDA) 1995 by inserting: “social (including communication)”. The draft Bill, therefore, provides more clarity for the Departments and public bodies that use the DDA definition of disability as guidance when making decisions, for example, on disability living allowance. The measure will profoundly affect families because it will accord recognition to a challenging condition that has been low in the hierarchy of disability in our society. When implemented across public bodies, it has the potential to improve the public understanding of issues that face individuals with ASD, such as access to services and buildings. Significantly, it will signal the beginning of the end of discrimination against individuals with ASD who have an IQ of above 70. The draft Bill directs the establishment of a cross-departmental approach to ASD by requiring the development of a cross-departmental or government strategy for autism led by the Health 2 Department. As I said, the historical failure to recognise ASD has resulted in a legacy of underfunding across Departments, and, as the amendment to the DDA takes effect, all Departments will, inevitably, have to address the impact of legislative change to their policies, practice and provision. Clause 2 creates the requirement to undertake that exercise together in an effort to minimise duplication and maximise effectiveness. I presume that there is consensus on the view that the development of a single departmental ASD strategy by the Health Department and, more recently, by the Education Department stands in sharp contrast to the joined-up realities of life as one transition leads to another across home, education, employment and community. Given the climate of economic constraint, it is incumbent on all of us to plan smartly for future challenges. A cross-departmental commitment to joint planning for ASD is not only good practice, it also provides an opportunity to look afresh at existing resources and how they could be used or redeployed. It also challenges Departments to work innovatively with the voluntary sector to maximise the accountability, flexibility and creativity of all sectors. The draft Bill addresses the issue of scrutiny. Just as there is an equality and financial balance to be struck between the entitlement to services and their cost, so there is a balance between the processes of accountability and bureaucracy. That clause recognises that challenge by placing a duty on the Minister of the designated lead Department to report to the Assembly every two years on the progress of the autism strategy. The proposal to establish an autism advocate has been withdrawn, but it can be introduced in the future should the need arise. The withdrawal of the autism advocate from the Bill is a decision that we made in light of the present pressures on resources. The current accountability mechanisms, including this and other statutory Committees, along with the requirement of the Minister to report to the Assembly biennially will ensure accountability for the strategy. In light of the huge pressures on resources, the decision to withdraw the autism advocate is a responsible one. After the all-party group’s previous evidence session to the Committee on 17 September 2009, representatives from the Department of Health, Social Services and Public Safety raised concerns about the proposed legislation when they gave evidence on 1 October 2009. Their concerns focused on the perceived cost of the implementation of an autism Bill and on the impact that such 3 legislation would have on other disability groups. It is our duty to listen to all views, as has been the policy of the all-party group since its inception in 2008, which was in response to the campaign led by families committed to change. More recently, the consultation on the proposed legislation was conducted across a wide range of statutory and voluntary agencies and resulted in a positive rating of between 70% and 80%. Follow-up meetings were held with the Equality Commission, the Children’s Commissioner and Disability Action. Those meetings resulted in agreed positions on the potential benefits attached to the introduction of the legislation in providing and enhancing clarity. In addition, the Northern Ireland Local Government Association (NILGA) and most of the 26 local councils passed unanimous motions in support of the draft Bill. It is our position that the all-party group has, therefore, addressed the concerns expressed by the Department of Health, Social Services and Public safety and that the proposed autism Bill is deserving of support. We welcome the opportunity to present to you, and we would also welcome feedback from Committee members. I will finish there, and, once again, thank you for the opportunity to present our case. The Chairperson: Thank you, Dominic, for your extremely helpful presentation. I would like clarification on a few points. Initially, there was a discussion about ring-fencing funding for those who have autism and those who care for them. That does not seem to feature in this draft. Was that an idea that was floated but did not come to anything? What is the position on funding? Mr D Bradley: I will ask Arlene to respond to that. Mrs Arlene Cassidy (All-Party Assembly Group on Autism Secretariat): Thank you. I remember the issue of ring-fenced funding as one of the three key messages of the political lobby that was led by Autism NI. In 2006, the three key aspirations of the political lobby were ring-fenced funding for autism, a cross-departmental strategy and an impact on legislation. Those were the aspirational goals of a political lobby; they were not signed up to per se by the all- party group. 4 The Chairperson: Does this draft Bill still leave it in the Minister’s power to allocate funding for autism services as he deems appropriate? Mr D Bradley: It will be the Minister’s duty to co-ordinate the strategy across several Departments. Naturally, the Minister would not have power over any Department other than his own, but there would be a duty on him to provide the best possible services through the strategy and to meet the needs of those services with appropriate resources. The Chairperson: Does any provision enable the Minister to do something that he cannot do currently should he so wish? Mr D Bradley: Yes. At present, the Minister would probably find it difficult to formulate a cross-departmental strategy, as it would depend on the willingness of other Ministers to participate in and agree to it. From that perspective, the draft Bill gives the Minister added strength. It means that he does not have to depend on the goodwill of other Ministers, but that other Ministers are obliged to co- operate with him in formulating the strategy. From the point of view of the Health Minister, the draft Bill adds something to his armoury in relation to co-operation and linkages with other Departments. Mr McCallister: Welcome, Dominic and Arlene. The Chairperson made a point about co-operation between Departments, and it will be no great surprise to the two of you, or to anyone around the table, to hear of my concerns about Middletown.