“Home”… A Necessary Ingredient for a “Good Life” Presented by: Gail Fanjoy, Executive Director, KFI 1024 Central St., Suite A, Millinocket, ME

Providing personalized supports which enable people to: KFI

 Live in their own homes  Work in regular community businesses  Be members and contributors of their communities

It has not always been this way …

Segregated Special Purpose School Segregated Special Purpose School Sheltered Workshop Sheltered Workshop Segregated Day Program Segregated Day Program Foster Homes or Living With Family Foster Homes or Living With Family Everyone Transported To One Location Everyone Transported To One Location Agency Owned and Operated Vans Agency Owned and Operated Vans Services Provided In KFI Owned Buildings Services Provided In KFI Owned Buildings Groups, GROUPS, GROUPS Groups, GROUPS, GROUPS What KFI Looked Like 30 Years Ago:

Questions from the early 80’s: Is there anyone anywhere doing anything better Is there anyone anywhere doing anything better Why can’t we do that Why can’t we do that

Public School Education Public School Education Real Jobs In Businesses for Real Wages Real Jobs In Businesses for Real Wages Contribute to Community Life through Volunteerism and Membership Contribute to Community Life through Volunteerism and Membership Support Individuals to Live In Their Own Apartments or Homes (including home ownership) Support Individuals to Live In Their Own Apartments or Homes (including home ownership) Services In the Individual’s Community Services In the Individual’s Community Public Transportation Or Staff’s/Own Vehicle Public Transportation Or Staff’s/Own Vehicle No Services Provided Within Space Owned by KFI No Services Provided Within Space Owned by KFI Individuals, INDIVIDUALS, INDIVIDUALS Individuals, INDIVIDUALS, INDIVIDUALS KFI Today…

SUPPORTED LIVING

“Finding and securing a home that is not agency-owned or agency operated and then providing the flexible supports that people need to live successfully in the community.” Taylor, Racino & Lutfiyya (1987) “people with disabilities living where and with whom they want, for as long as they want, with whatever support necessary to make that choice possible.” Bellamy and Horner (1987)

Questions we asked ourselves: Why do people with disabilities go to day programs? Why do people with disabilities go to day programs? Why do people have to leave their homes during the day? Is that really home? Why do people have to leave their homes during the day? Is that really home? What should we look for in staff? People who are already connected to the community? What should we look for in staff? People who are already connected to the community? Who else in the community can/should do what we do? Who else in the community can/should do what we do? Who (what people) can we begin with? Who (what people) can we begin with? How can families help? How can families help? Where are there opportunities to implement the vision? Where are there opportunities to implement the vision? If it was my life, what would I want? If it was my life, what would I want?

They’ve got the dollars We’ve got the sense. Why apartments are better than galvanized washtubs. Why apartments are better than galvanized washtubs.

If a person had the right kind and amount of supports, would he/she need to go to a day program, work in a sheltered workshop, or live in a group home? How do we build those supports?

CHARLES Lesson: Lesson: Help the community to see beyond the person’s disability by supporting people to be regular participants in typical ways. That is where friendships can begin. Help the community to see beyond the person’s disability by supporting people to be regular participants in typical ways. That is where friendships can begin. Strategies: Strategies: Introduce people individually into community settings by accessing regular resources (stores, clubs, etc.) Introduce people individually into community settings by accessing regular resources (stores, clubs, etc.) Work in a state of positive discontent and with a sense of urgency. Work in a state of positive discontent and with a sense of urgency. Life happens; change is inevitable; embrace it! Life happens; change is inevitable; embrace it!

Robert’s Story - Special Education Perspective Acts out Acts out Disruptive Disruptive Hostile Hostile Significantly limited “adjustive resources” Significantly limited “adjustive resources” Difficulty making appropriate choices Difficulty making appropriate choices Impulsive Impulsive Does not appear to be in a position to make meaningful decisions Does not appear to be in a position to make meaningful decisions Great difficulty expressing himself Great difficulty expressing himself Unable to problem solve Unable to problem solve Misinterprets conversations Misinterprets conversations Behavioral problems Behavioral problems Clearly indicates a need for guardianship Clearly indicates a need for guardianship

Robert’s Story - His Perspective  Wants his own home (NOT an apartment) – a one story home with at least two bedrooms near the woods  Wants a job – something working around cars  Wants a red truck  Wants a woman – someone who can clean and hang curtains

Courtney’s Story Graduated from high school last June. Graduated from high school last June. Is an Avon distributor. Is an Avon distributor. Owns her own home. Owns her own home. Enjoys hanging out with her friends. Enjoys hanging out with her friends. Volunteers in her community. Volunteers in her community. Has her own credit card and checking account and is building excellent credit. Has her own credit card and checking account and is building excellent credit.

Courtney’s Labels Profound cognitive impairment Profound cognitive impairment Autistic disorder Autistic disorder Cerebral palsy Cerebral palsy Seizure disorder Seizure disorder Static encephalopathy Static encephalopathy Ataxia with low tone Ataxia with low tone Nonverbal Nonverbal Does not have self-protective reflexes Does not have self-protective reflexes No reliable communication system No reliable communication system

Marie’s Challenge to KFI Had been institutionalized since the age of 11. Had been institutionalized since the age of 11. Lived in an ICF/MR nursing home for the last 10 or so years. Lived in an ICF/MR nursing home for the last 10 or so years. Had been kicked out of her day program for people with challenging behaviors due to challenging behaviors. Had been kicked out of her day program for people with challenging behaviors due to challenging behaviors. Was supported by one-to-one aides who worked in 4 hour shifts because her behaviors were so challenging. Was supported by one-to-one aides who worked in 4 hour shifts because her behaviors were so challenging. Was considered extremely self-abusive, failure to thrive, profoundly cognitively disabled. Was considered extremely self-abusive, failure to thrive, profoundly cognitively disabled. Was given a 30 day notice to leave the ICF/MR nursing home and was on her way to the state’s large institution for people with intellectual disabilities in the closing days of that institution. Was given a 30 day notice to leave the ICF/MR nursing home and was on her way to the state’s large institution for people with intellectual disabilities in the closing days of that institution.

“Somebody has got to do something, and it’s incredibly pathetic that it has got to be us.” Jerry Garcia

MARIE Lesson: Lesson: Supporting people – no matter the complexities of their disabilities – to live in their own home and giving them control, can produce miracles. Supporting people – no matter the complexities of their disabilities – to live in their own home and giving them control, can produce miracles. Strategy: Strategy: “Treatment” took the form of real home, family connections, paying attention to what she showed us she wanted and needed, and less about her behavior and deficits. “Treatment” took the form of real home, family connections, paying attention to what she showed us she wanted and needed, and less about her behavior and deficits.

HOME… A place where one belongs simply because it is “home”. “On Becoming a Member of the Community” by George Durner The Whole Community Catalogue HOME… A place where one belongs simply because it is “home”. “On Becoming a Member of the Community” by George Durner The Whole Community Catalogue

KFI, 1024 Central St., Millinocket, ME Community is relationships places NOT places -- the real hurdle