Dr. Alison Harnett:

I thank the committee for this opportunity to meet with it to discuss the assisted decision-making (capacity) (amendment) Bill. The National Federation of Voluntary Service Providers is a national umbrella body of not-for-profit organisations providing direct supports and services to people with intellectual disability, ID. Across 57 organisations, our members support approximately 26,000 children and adults with intellectual disabilities and their families. As two thirds of disability services are provided on behalf of the State by the voluntary sector, we welcome the invitation of the joint committee to discuss this legislation which, as we have heard, will be of enormous importance in the lives of people with intellectual disability.

We welcome the focus of the joint committee on hearing today from individuals with lived experience, family members and service providers supporting people with disabilities. The UN Convention on the Rights of Persons with Disabilities recognises that "persons with disabilities should have the opportunity to be actively involved in decision-making processes about policies and programmes, including those directly concerning them". Article 3 of the convention places a responsibility on the State to meaningfully consult with people with intellectual disabilities in an accessible format. The implementation of the Assisted Decision-Making (Capacity) Act will be a significant positive milestone in the State’s progress towards ensuring that individuals with disabilities enjoy equal legal capacity in all aspects of life, as envisaged in Article 12 of the UNCRPD. As Mr. Kearns outlined, its focus on supporting the will and preference of the individual offers a transformational opportunity in terms of how people with intellectual disability are legally supported in their rights to make choices fundamental to their lives. It also has the potential to be a catalyst for society to develop a growing understanding of the capacity of individuals to make such choices and be respected in their decisions.

As time is short for this opening statement, there are a number of interlinked themes we wish to highlight. Many individuals with intellectual disability have lifelong support needs around decision-making, so there are considerable implications from this legislation for the people we support, the staff and the families with whom we have long-standing relationships. It is important, therefore, that the legislation, its implementation and the codes of practice are equally suitable and accessible for those with lifelong decision support needs as much as those who encounter them at particular stages in their lives.

A key concern is that more restrictive approaches will be brought in unintentionally on foot of the legislation. It is, therefore, essential that the spirit of the Act is safeguarded. For instance, our members have expressed concerns for several hundred people with intellectual disabilities, often those who have lived in institutional settings for a long period, who might have very few supports in terms of family and friends and may struggle to identify decision supporters. As set out in the Act, paid staff cannot take on these roles. This may have the unintended consequence of pushing people further up the scale of decision supporters, such as to the decision-making representative, which would be more restrictive than the spirit of the Act. We would welcome the committee's focus on this issue to ensure people for whom this is relevant are not disadvantaged by the measures set out in the legislation.

Education, guidance and ongoing support for relevant people under the Act, their families, service providers and wider society, such as the banking sector, medical professionals etc., is critically important in the implementation of the Act and in adherence to its principles and intention. However, the cultural change required will only work if this education, awareness and support is co-ordinated nationally. It is essential that independent advocacy is adequately resourced to support people where required as implementation progresses.

Early communication on the implications of this legislation and the meaning of the Act for people with intellectual disabilities, including those who are wards of court, will be essential and will require a targeted and fully accessible campaign of training and information, as Mr. McGrath has outlined. The legislation will have a very significant impact on people’s lives. Without early communication, it is likely to lead to anxiety and concerns in respect of next steps. There are adults with intellectual disabilities who are currently wards of court and there are also some young adults living in the care of the State who typically become wards of court when transitioning into adult services if there are safeguarding concerns that apply. We would welcome clarification on the alternative process for these young people who will come through the transition period after the commencement of the Act, as well as for those currently in the ward-of-court process.

There is a significant requirement for support to families in the context of this legislation. For many people with an intellectual disability, their primary supporters are family members, many of whom are continuing in primary carer roles into later life. Our research indicates that more than 1,250 people are supported in the family home by a primary carer who is over the age of 70, at least 400 of whom are over the age of 80. It is essential that the structures for decision supporters are accessible to these family members. For many, a digital-only platform will not be accessible. For some, the onerous reporting requirements will be difficult. There is a need to examine how these families can be appropriately supported, and for detailed planning in respect of how the Act will affect people primarily supported by family members, some of whom are ageing or may have their own health or decision-making challenges and concerns or both emerging.

It is already becoming clear that substantial work will be required within disability services in terms of training, policy and practice. We recommend that an impact assessment is carried out on the implications of the Act for resourcing in disability services, as there will be significant requirements that need to be put in place to ensure people with intellectual disability have full access to their rights under the legislation. It is vital that the importance of existing informal decision supports is emphasised in all communication strategies. This should include key staff members who know the person well and are currently often involved in supporting the person’s choice, will and preference, as well as communications etc. Their knowledge, interaction with the person and expertise should be included as a key source of information and support, although only, of course, where that is the person’s wish.

The timing of the consultation process on the legislation and draft codes of practice during the current wave of infection of Covid-19 has not allowed for as sufficient a level of detailed analysis across our organisations as would be required for full consideration of legislation of this gravity and with such particular relevance to the people we support who have an intellectual disability. While we are cognisant of the urgency of the legislation being brought through the House, we recommend that the codes of practice be fully reviewed after the first year of implementation to allow for consideration of their operation in practice and for the identification of key issues to be addressed.

Without access to options, choice cannot be meaningful. For instance, the choice of where and with whom we live is a fundamental life decision. It is an area in which access to will and preference is essential, as set out in Article 19 of the UNCRPD. Today, more than 2,000 people with intellectual disability remain living in institutional or congregated settings and more than 1,000 people under the age of 65 are inappropriately living in nursing homes for elderly people. There are many more people with intellectual disabilities who have not chosen where or with whom they live, and many express significant distress on a daily basis due to the incompatibility of those living together. The funding and resourcing of the required supports to meaningfully address the rights-based approach to providing choice to people with disabilities across living, education, employment and other areas must be considered in the planning for the implementation of this Act, as this will be a key driver of access to will and preference for people with intellectual disabilities.

We thank the committee for the opportunity to meet with it on this important topic and to put forward our experience of supporting people with disabilities in the context of the forthcoming legislation.