Creating a Home: Genuine Person-Centred Approaches JOHN LORD Presentation to Common Threads National Conference of the Canadian Down Syndrome Society, May 14, 2005

From Residential Services to Homes for People  Three trends have influenced the growing interest in moving away from formal residential services toward “homes” New Paradigm Approaches New Paradigm Approaches De-linking Housing and Support De-linking Housing and Support Person-Centred Approaches Person-Centred Approaches

Characteristics of New Paradigm  Self-determination  Community Self-determination and community, when understood and implemented effectively, create a bridge to citizenship for people with disabilities.

The Importance of De-Linking Housing and Support  When housing and supports are linked * housing tends to be standardized * supports cannot be portable  When housing and supports are de-linked * the focus begins to be more individualized * people can move and take their supports with them (portability)

Qualities of Person-Centred Approaches  The home is based on the person’s dreams for their life  Person as well as family and friends design and personalize the home  Person (and Family) exercise all decision- making over the home  Supports are tailored/individualized to fit with the person’s lifestyle

Insights from Research and Experience  Families and individuals have shown they can effectively govern their homes  Standardized models are expensive and often like “mini-institutions”  Quality of life and health are enhanced when people have control and participation  Person-centred practices have shown to be successful (process and outcomes)

Four Key Things That Enable Families to Create Homes  Intention and understanding  A strong support network / circle  Independent facilitation and planning  Flexible or individualized funding

Options My Daughter has Experienced We first recognized that in her twenties, she should have the opportunity to experience options (as her sisters are) She has experienced:  Living with three room mates  Living with one room mate  Living partially on her own And always revisiting her dreams.

Four Options for Families  Create a home with your son/daughter and your support network / circle  Create a Project with other families (e.g. NABORS, Deohaeko)  Create a circle of families for support, but each family pursues individual approach, with possibility of sharing facilitation/support  Find a residential service provider that is flexible and innovative