Supporting the decision making process for people with intellectual disability

The needs of young people with very high and complex care needs have been identified as a priority group for the National Disability Insurance Scheme (NDIS), with recent legislation being passed to ensure people have a greater level of care and support.

To maximise the potential benefit of forthcoming funds, it’s essential to fully understand the needs and complexity of providing support for this group by drawing on key learnings from projects across the nation.

We asked some of those who will be speaking at the 2nd Annual Younger People with Very High and Complex Care Needs Conference on the 17-18 June to provide an insight into the work that is being done to ensure this group has greater choice and control in terms of their support options.

In this piece, we thank Joanne Watson, Research Fellow and Speech Pathologist of Scope, for taking the time to share her thoughts on the issue with us.

How important is it to support the decision making process for a young person with a severe/profound intellectual disability, deciding where they would like to live in the future?
Today in Australia and in most of the western world, concepts related to self-determination such as freedom, choice, individualism and autonomy are embraced and celebrated. The making of decisions is ubiquitous to everyday life. Most Australians lead lives that bring with them an ever-expanding smorgasbord of options. What clothes to wear? Who to spend time with? Whether to pray and to whom? One of the most important decisions we make as human beings is regarding where we ‘lay our hat’, ‘where we call home’.

However, there is a growing concern that in a time when most Australians have more opportunities to control their lives than ever before, people with severe/profound intellectual disabilities, are not being invited to the party (Watson, n.d.). This is the case despite a global movement towards disability policy strongly committed to self-determination. The United Nations adoption and Australia’s ratification of the Convention on the Rights of Persons with Disabilities and Victoria’s introduction of the Victorian Charter of Human Rights and Responsibilities clearly articulates the rights of all people to lead self determined lives. An important element of this self-determination is having genuine choice as to where to live, how and with whom. Article 19a of the UN Convention on the Rights of Persons with Disabilities (United Nations 2006) states: ‘Persons with disabilities have the opportunity to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement’.

Everyone faces constraints on freedom of choice regarding living arrangements, affected by elements such as affordability and proximity to work. However, for people with intellectual disabilities, using residential services, the elements affecting choice are greater and more complex than their neighbors who live lives that are more autonomous. This situation is significantly compounded for people with very complex support needs and whose intellectual disability is such that they are unable to advocate for themselves without significant support. Stancliffe and his colleagues (2011) found that ‘In 2008, despite community-living policies that emphasize choice, many adult service users with ID in the USA experienced little or no choice about where and with whom to live, especially those individuals with more severe ID’ (Stancliffe et al., 2011 p.746).

As a signatory to the UNCRPD, Australia has a clear obligation to ensure that all Australians are given the necessary support ‘to choose their place of residence and where and with whom they live on an equal basis with others and are not obliged to live in a particular living arrangement’. Our research is showing that for people with severe and profound intellectual disability, although this support requires significant resourcing, it is possible. Everyone has a right to have a say as to ‘where they lay their hat’, and as a signatory to the UNCRPD, Australia has an unequivocal obligation to ensure this happens for everyone, including those ‘rarely heard’, those with severe/profound intellectual disability.

How do you feel about the prospect of your research providing a benchmark for attendees hoping to support decision making for people with cognitive impairment?

Our research at Scope, LaTrobe and Deakin Universities, in Victoria are collectively helping to develop a clearer picture of how best to support people who maybe considered vulnerable decision makers to be heard. My research is specifically exploring the impact of a supportive/collaborative approach to decision making specifically for people with severe/profound intellectual disabilities. The research is enabling the development of some new understandings of what participatory decision-making may look like for people with severe or profound intellectual disabilities, and has clear implications for those supporting people with severe/profound intellectual disability to participate in decisions as to where they reside.

You’re speaking at IIR’s 2nd Annual Younger People with very high and complex care needs Conference, taking place on the 17-18 June 2013 in Melbourne. What aspects of the conference are you most looking forward to?
Australia being on the cusp of one of the most important social reforms in our history is an ideal backdrop for this conference. Young people in or at risk of entry to aged residential care will be significant users of Disability Care Australia. I am looking forward to interactive dialogue around how this reform and the use of individualised services generally will impact on the lives of these people and their supporters. We are at an exciting time in Australia, and this conference will provide a wonderful opportunity to explore and learn together. I am particularly interested in hearing perspectives from people with disabilities and their supporters both locally and from internationally.