The Role of Families in Supporting Article 19 of the UNCRPD NZDSN Conference 2019 Workstream Four: Person directed living and community options Dr Carey-Ann Morrison, Imagine Better and Jane Bawden, Parent 2 Parent, for the Family & Whānau Leadership Alliance

Family & Whānau Leadership Alliance (FLA) Strong and equitable communities where disabled people, their families and whānau are valued and belong Families and whānau are informed about how best to support their disabled family members to find their own identity, make decisions, plan for the future and live a good life Families are strong in their belief that their disabled family member has the right to a good life in the ordinary spaces of the community

Lachie, Carey-Ann and Steve A bit about us Lachie, Carey-Ann and Steve Hugh

Disability policy Article 19 of the UN Convention Living independently and being included in the community https://www.un.org/development/desa/disabilities/convention-on-the-rights-of-persons-wi th- disabilities/article-19-living-independently-and-being-included-in-the-community.html Enabling Good Lives Vision and Principles Self-determination, choice and control http://www.enablinggoodlives.co.nz/about-egl/egl-approach/ NZ Disability Strategy 2016-2026 Non-disabling society https://www.odi.govt.nz/nz-disability-strategy/

Question for consideration What innovations could be bought to bear on housing and living arrangements that can offer people the autonomy they are seeking and the support that is needed?

A place called home “While homes may be located, it is not the location that is home. Home is the fusion of feeling ‘at home’, sense of comfort, belonging, with a particular place” (Blunt & Dowling 2006, 23).

The role of families and whānau “Often it is family members who know the person best. They care about the person in a way that is different from everyone else and they will probably be involved in supporting the individual for the rest of their lives. They often bring huge commitment, energy and knowledge to the table” (Sanderson 2000 40)

Family whānau relationships and social inclusion Bigby et al (2011) found that for older people with learning disabilities siblings were an important link to other family members, relationships and social activities beyond the group home. Milner & Mirfin-Veitch (2012) explain that for people with high and complex support needs, there is a strong pull towards the family home. Conders et al (2018) found that for adults with learning disabilities who live independently, family had ongoing and consistent involvement in the lives.

Missing family voice Disabled people and families are experts on their own lives, and must be engaged as part of setting the landscape for service provision and policy development When families are included it is often through a narrow conceptualisation of families as ‘carers’. This fails to acknowledge the uniqueness of the relationship, the love, commitment, history, and longevity of the family relationship. There needs to be a concerted emphasis on families participating in policy development in relevant, frequent and timely ways.

Family Multi-generational Siblings

Lianne and Terry “I define my role quite clearly. Staff members come and go, as do providers. I am a constant.”

Tina and Nikki “Home for Nikki is an ordinary home in an ordinary street. It’s not about cluster housing. Who she is going to live with, that is our family decision.”

Elisha and Nathan “ I would have pulled Nathan out, but I did not have another option…my experience is that article 19 is not a reality in this country. Yet.”

Paula and Jack What makes ‘house’ a ‘home’? “You are as strong as your weakest link. If there is a rogue it brings the whole house down. A lot is your mother instincts. How does your child behave when you take them home? You go higher and say you know something is not right. House leader will back you up if good house leader. Have not had this problem for years.”

Home Home is …’a key crucible in life that helps sustain and uphold much that is deeply personal, private and intimate about ourselves and reflects our deep identity , values and preferences for a good life” Michael Kendrick

References Blunt A. & Dowling, R. (2006) Home, Routledge: London & New York Bigby,C., Webber, R. and Bowers, B. Relationships in later life between group home residents with intellectual disability, their siblings and staff, in Bigby, C. and Fyffe, C. (eds). Services and families working together to support adults with intellectual disability, Living with Disability Group, La Trobe University: Bundoora Conder, J. & Mirfin-Veitch, B. (2018). ‘From presence to belonging’: Experiences and outcomes of living independently for adults with intellectual disability. Dunedin: The Donald Beasley Institute. Kendrick, Michael J., “How Genuinely Supportive Persons, Agencies And Systems Can Enable People To Have Real Homes Of Their Own”, Crucial Times, Issue 40, 13-15, Brisbane, Australia, 2008 Milner and Mirfin-Veitch (2012) “I am here”: The Article 19 Project, Dunedin: The Donald Beasely Institute. Sanderson, H. 2000: Person-centred planning: key features and approaches. UK. Joseph Rowntree Foundation.

A challenge… How can home be used to foster relationships with family and local community?