“home”… a necessary ingredient for a “good life” presented by: gail fanjoy, executive...
TRANSCRIPT
““Home”…Home”…A Necessary Ingredient for a A Necessary Ingredient for a
“Good Life”“Good Life”
Presented by: Gail Fanjoy, Executive Director, KFI
1024 Central St., Suite A, Millinocket, ME 04462
Providing Providing personalized personalized
supports which supports which enable people to:enable people to:
KFI
Live in their own homesLive in their own homes
Work in regular community Work in regular community businesses businesses
Be members and Be members and contributors of their contributors of their communitiescommunities
It has not always It has not always been this way …been this way …
Segregated Segregated Special Special Purpose SchoolPurpose School
Sheltered Sheltered WorkshopWorkshop
Segregated Segregated Day ProgramDay Program
Foster Homes Foster Homes or Living With or Living With FamilyFamily
Everyone Everyone Transported To Transported To One LocationOne Location
Agency Owned Agency Owned and Operated and Operated VansVans
Services Provided Services Provided In KFI Owned In KFI Owned BuildingsBuildings
Groups, GROUPS, Groups, GROUPS, GROUPSGROUPS
What KFI Looked Like 30 Years What KFI Looked Like 30 Years Ago:Ago:
Questions fromQuestions fromthe early 80’s:the early 80’s:
Is there anyone anywhere Is there anyone anywhere doing doing anything betteranything better
Why can’t we do Why can’t we do thatthat
Public School Public School EducationEducation
Real Jobs In Real Jobs In Businesses for Businesses for Real WagesReal Wages
Contribute to Contribute to Community Life Community Life through through Volunteerism and Volunteerism and MembershipMembership
Support Support Individuals to Individuals to Live In Their Own Live In Their Own Apartments or Apartments or Homes (including Homes (including home ownership)home ownership)
Services In the Services In the Individual’s Individual’s CommunityCommunity
Public Public Transportation Transportation Or Staff’s/Own Or Staff’s/Own VehicleVehicle
No Services No Services Provided Provided Within Space Within Space Owned by KFIOwned by KFI
Individuals, Individuals, INDIVIDUALS, INDIVIDUALS, INDIVIDUALSINDIVIDUALS
KFI Today…KFI Today…
SUPPORTED LIVINGSUPPORTED 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:Questions we asked ourselves: Why do people with disabilities go to day Why do people with disabilities go to day
programs?programs? Why do people have to leave their homes Why do people have to leave their homes
during the day? Is that really during the day? Is that really homehome?? What should we look for in staff? People who What should we look for in staff? People who
are already connected to the community?are already connected to the community? Who else in the community can/should do Who else in the community can/should do
what we 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 Where are there opportunities to implement
the vision?the vision? If it was my life, what would If it was my life, what would II want? want?
They’ve got They’ve got the dollarsthe dollars
We’ve got the sense.We’ve got the sense.
Why apartments are Why apartments are better than galvanized better than galvanized
washtubs.washtubs.
If a person had the right If a person had the right kind and amount of kind and amount of supports, would he/she supports, would he/she need to go to a day need to go to a day program, work in a program, work in a sheltered workshop, or live sheltered workshop, or live in a group home?in a group home?
How do we build those How do we build those supports?supports?
CHARLESCHARLES Lesson:Lesson:
Help the community to see beyond the Help the community to see beyond the person’s disability by supporting people to be person’s disability by supporting people to be regular participants in typical ways. That is regular participants in typical ways. That is where friendships can begin.where friendships can begin.
Strategies:Strategies: Introduce people individually into community Introduce people individually into community
settings by accessing regular resources settings by accessing regular resources (stores, clubs, etc.)(stores, clubs, etc.)
Work in a state of positive discontent and Work in a state of positive discontent and with a sense of urgency.with a sense of urgency.
Life happens; change is Life happens; change is inevitable; embrace it!inevitable; embrace it!
Robert’s Story - Special Robert’s Story - Special Education PerspectiveEducation Perspective Acts outActs out
DisruptiveDisruptive HostileHostile Significantly limited “adjustive resources”Significantly limited “adjustive resources” Difficulty making appropriate choicesDifficulty making appropriate choices ImpulsiveImpulsive Does not appear to be in a position to make Does not appear to be in a position to make
meaningful decisionsmeaningful decisions Great difficulty expressing himselfGreat difficulty expressing himself Unable to problem solveUnable to problem solve Misinterprets conversationsMisinterprets conversations Behavioral problemsBehavioral problems Clearly indicates a need for guardianshipClearly indicates a need for guardianship
Robert’s Story - His Robert’s Story - His PerspectivePerspective
Wants his own home (NOT an Wants his own home (NOT an apartment) – a one story home with apartment) – a one story home with at least two bedrooms near the at least two bedrooms near the woodswoodsWants a job – something working Wants a job – something working around carsaround carsWants a red truckWants a red truckWants a woman – someone who can Wants a woman – someone who can clean and hang curtainsclean and hang curtains
Courtney’s StoryCourtney’s Story Graduated from high school last Graduated from high school last
June.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 Has her own credit card and
checking account and is building checking account and is building excellent credit.excellent credit.
Courtney’s LabelsCourtney’s Labels Profound cognitive impairmentProfound cognitive impairment Autistic disorder Autistic disorder Cerebral palsyCerebral palsy Seizure disorderSeizure disorder Static encephalopathyStatic encephalopathy Ataxia with low toneAtaxia with low tone NonverbalNonverbal Does not have self-protective reflexesDoes not have self-protective reflexes No reliable communication systemNo reliable communication system
Marie’s Challenge to KFIMarie’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 Lived in an ICF/MR nursing home for the last 10 or so
years.years. Had been kicked out of her day program for people Had been kicked out of her day program for people
with challenging behaviors due to challenging with challenging behaviors due to challenging behaviors.behaviors.
Was supported by one-to-one aides who worked in 4 Was supported by one-to-one aides who worked in 4 hour shifts because her behaviors were so hour shifts because her behaviors were so challenging.challenging.
Was considered extremely self-abusive, failure to Was considered extremely self-abusive, failure to thrive, profoundly cognitively disabled. thrive, profoundly cognitively disabled.
Was given a 30 day notice to leave the ICF/MR Was given a 30 day notice to leave the ICF/MR nursing home and was on her way to the state’s nursing home and was on her way to the state’s large institution for people with intellectual large institution for people with intellectual disabilities in the closing days of that institution.disabilities in the closing days of that institution.
““Somebody has got Somebody has got to do something, and to do something, and
it’s incredibly it’s incredibly pathetic that it has pathetic that it has
got to be us.”got to be us.”
Jerry GarciaJerry Garcia
MARIEMARIE Lesson:Lesson:
Supporting people – no matter the Supporting people – no matter the complexities of their disabilities – to complexities of their disabilities – to live in their own home and giving live in their own home and giving them control, can produce miracles.them control, can produce miracles.
Strategy: Strategy: ““Treatment” took the form of real Treatment” took the form of real
home, family connections, paying home, family connections, paying attention to what she showed us she attention to what she showed us she wanted and needed, and less about wanted and needed, and less about her behavior and deficits.her behavior and deficits.
HOME…HOME…
A place where one belongs A place where one belongs simply because it is “home”.simply because it is “home”.
“On“On Becoming a Member of the Becoming a Member of the
Community”Community”by George Durnerby George DurnerThe Whole Community CatalogueThe Whole Community Catalogue
KFI, 1024 Central St., Millinocket, KFI, 1024 Central St., Millinocket, ME 04462ME 04462
Community Community is is
relationshipsrelationshipsNOT placesplaces
-- the real hurdle-- the real hurdle