““If You Build It They Will If You Build It They Will Come; If You Close It They Come; If You Close It They

Can Belong: A Tale of Can Belong: A Tale of Transformation”Transformation”

Presented by: Gail Fanjoy, Executive Director, KFI1024 Central St., Suite A, Millinocket, ME 04462

gfanjoy@kfimaine.org

Maine’s mile high mountain – Mt. Maine’s mile high mountain – Mt. KatahdinKatahdin

KFI…KFI…Customized supports to assist Customized supports to assist

people topeople to Live in their own Live in their own

homeshomes Work in regular Work in regular

community community businessesbusinesses

Be members and Be members and contributors of contributors of their their communitiescommunities

It has not always been It has not always been this way …this way …

KFI is a 52 year old community service KFI is a 52 year old community service agency. We spent the first 20+ years agency. We spent the first 20+ years

developing programs and erecting developing programs and erecting buildings that served to segregate buildings that served to segregate

people with intellectual disabilities from people with intellectual disabilities from society, but kept them busy and safe.society, but kept them busy and safe.

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:

KFI’s Work Activity Center circa KFI’s Work Activity Center circa 19801980

Leo attended the Leo attended the day program 5 days day program 5 days a week.a week.

Slow workerSlow worker Great social skillsGreat social skills Lived with his father Lived with his father

in a neighboring in a neighboring towntown

Leo got his big break in 1986 – a job in his home town!

Supported Employment’s Supported Employment’s failure to solve all failure to solve all

problemsproblems

and why we did not have and why we did not have to launch a second careerto launch a second career

Owns his own home Owns his own home Works at a credit union Works at a credit union

20 hours/week with 20 hours/week with natural supports (natural supports (for for over 20 years)over 20 years)

Member of the Knights of Member of the Knights of ColumbusColumbus

Volunteers at his church’s Volunteers at his church’s thrift store every weekthrift store every week

Receives 7 hours a week Receives 7 hours a week of paid supports to help of paid supports to help him in his home.him in his home.

LEO

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

The state The state has the has the

dollars…dollars…We’ve got the We’ve got the sensesense..

Why apartments are Why apartments are better than galvanized better than galvanized

washtubs.washtubs.

JACKIE

Notes from a KFI Management Notes from a KFI Management Team Meeting on July 8, 1987:Team Meeting on July 8, 1987:

““The ideal program would use an The ideal program would use an

individual formula to address individual formula to address

vocational, personal, social, and vocational, personal, social, and

recreational needs of each individual. recreational needs of each individual.

Where do we begin?” Where do we begin?”

Maine’s Funding Structure Maine’s Funding Structure ThenThen

Block grants to programs – although state dollars Block grants to programs – although state dollars represented a fraction of what we get today, they represented a fraction of what we get today, they provided maximum flexibility.provided maximum flexibility.

$24,500 grant from our DD system to do supported $24,500 grant from our DD system to do supported employment.employment.

Bridge money from Vocational Rehabilitation to Bridge money from Vocational Rehabilitation to establish an assessment and training site in a local establish an assessment and training site in a local hospital.hospital.

Took “day program dollars” and helped support Took “day program dollars” and helped support people in jobs and to move into their own homes.people in jobs and to move into their own homes.

Redefined a unit of service from a “day” to an Redefined a unit of service from a “day” to an “hour” to begin customizing people’s supports.“hour” to begin customizing people’s supports.

Redefined what people’s “day” looked like.Redefined what people’s “day” looked like. Designed staff schedules and duties around their Designed staff schedules and duties around their

preferences, skills, and interests.preferences, skills, and interests.

““Just as important as the decision Just as important as the decision on what new and different things on what new and different things to do, is the planned systematic to do, is the planned systematic

abandonment of the old that:abandonment of the old that: no longer fits the purpose and no longer fits the purpose and

mission of the business,mission of the business, no longer conveys satisfaction to the no longer conveys satisfaction to the

customer,customer, no longer makes a superior no longer makes a superior

contribution…”contribution…”

Peter DruckerPeter Drucker

KFI’s KFI’s “CONVERSION MILESTONES”“CONVERSION MILESTONES” 19851985: KFI’s private segregated school for children : KFI’s private segregated school for children

between the ages of 5 and 20 was phased out. between the ages of 5 and 20 was phased out.

19871987: Due to the success of job placement and : Due to the success of job placement and supported employment, KFI closed its sheltered supported employment, KFI closed its sheltered workshop. workshop.

19891989: All sheltered work was abolished in favor of : All sheltered work was abolished in favor of community employment and KFI’s day program community employment and KFI’s day program was transformed into a program which provided was transformed into a program which provided broad opportunities for community participation.broad opportunities for community participation.

19961996: KFI ended all center-based services and : KFI ended all center-based services and provided personalized supports in people’s homes, provided personalized supports in people’s homes, workplaces, and communities. workplaces, and communities.

Some FundamentalsSome Fundamentals GET TRAININGGET TRAINING

Get as much information about innovative Get as much information about innovative and emerging best practice: read journals, and emerging best practice: read journals, connect to websites, go to conferences.connect to websites, go to conferences.

UNDERSTAND THE ART OF THE UNDERSTAND THE ART OF THE POSSIBLEPOSSIBLE Know that there is someone doing daily Know that there is someone doing daily

what others say cannot be done at all.what others say cannot be done at all.

START WITH THE IDEAL AND START WITH THE IDEAL AND COMPROMISE FROM THERE. DON’T COMPROMISE FROM THERE. DON’T START WITH COMPROMISESTART WITH COMPROMISE Define “ideal.” Our supports to people Define “ideal.” Our supports to people

will never be perfect, but we can try to will never be perfect, but we can try to figure out what makes the most sense figure out what makes the most sense and set our sights on that. Be committed and set our sights on that. Be committed to working through obstacles.to working through obstacles.

BE A GENTLE SALESPERSONBE A GENTLE SALESPERSON Always keep the person’s desires on the Always keep the person’s desires on the

agenda to allow you to advocate within agenda to allow you to advocate within the organization, to funders, to family the organization, to funders, to family and other providers.and other providers.

STOP TRYING TO FIX PEOPLESTOP TRYING TO FIX PEOPLE People do not need to pass a test to People do not need to pass a test to

receive meaningful supports. People receive meaningful supports. People are ready NOW for their own home are ready NOW for their own home and a real job - they do not need to and a real job - they do not need to earn it! Eliminate the continuum!earn it! Eliminate the continuum!

ABANDON SERVICESABANDON SERVICES ““Nothing is less productive than to Nothing is less productive than to

make more efficient what should not make more efficient what should not be done at all.” Peter Druckerbe done at all.” Peter Drucker

PROVIDE SUPPORTS IN THE PERSON’S PROVIDE SUPPORTS IN THE PERSON’S COMMUNITYCOMMUNITY Don’t move the person to your community Don’t move the person to your community

or the day program’s community.or the day program’s community. EMPOWER STAFFEMPOWER STAFF

Create opportunities for staff to try new Create opportunities for staff to try new things. Give staff responsibility and things. Give staff responsibility and authority. Reward and celebrate successes. authority. Reward and celebrate successes.

DON’T BACKFILLDON’T BACKFILL When one person is out of the group, don’t When one person is out of the group, don’t

accept another person into the program. accept another person into the program. You’ll never convert the program that way!You’ll never convert the program that way!

TAKE ONE PERSON AT A TIMETAKE ONE PERSON AT A TIME Programs aren’t converted overnight; Programs aren’t converted overnight;

supports to people must change. Be supports to people must change. Be flexible and creative! Reward initiative flexible and creative! Reward initiative and even failures, especially if they and even failures, especially if they represent acts of commission.represent acts of commission.

KFI’S How-to’s…Down and DirtyKFI’S How-to’s…Down and DirtyInvest in Values-based TrainingInvest in Values-based Training

Join APSE and TASHJoin APSE and TASH and other and other organizations that promote personalized organizations that promote personalized supports.supports.

Listen to the gurusListen to the gurus Read the newsletters and journal articlesRead the newsletters and journal articles Connect to web sitesConnect to web sites Seek out conferences featuring cutting-edge Seek out conferences featuring cutting-edge

ideasideas Answer the question: “Is anyone, anywhere, Answer the question: “Is anyone, anywhere,

doing anything better for people with doing anything better for people with disabilities?”disabilities?”

KFI’S How-to’s…Down and DirtyKFI’S How-to’s…Down and DirtyHire the Right StaffHire the Right Staff

Hire people for their values, rather than their Hire people for their values, rather than their experience, certification, degrees…experience, certification, degrees…

Hire people from the same community as the people Hire people from the same community as the people they supportthey support

Hire people who can describe how Hire people who can describe how theythey are connected are connected to their communitiesto their communities

Give people permission to use their personal Give people permission to use their personal connections on behalf of the people they supportconnections on behalf of the people they support

Involve people with disabilities and their families in the Involve people with disabilities and their families in the hiring processhiring process

Ask, “Is this prospective employee a person we can Ask, “Is this prospective employee a person we can stand up and cheer about?”stand up and cheer about?”

Direct Support Staff:Direct Support Staff:Requires a high degree of trust – Requires a high degree of trust –

you don’t see them every dayyou don’t see them every day Vital to your mission Vital to your mission

and valuesand values Ambassadors for the Ambassadors for the

people they support people they support and your agency and your agency

Highly visible to Highly visible to community memberscommunity members

Need to make Need to make independent decisions independent decisions and judgments and judgments throughout the daythroughout the day

Need to feel connected to Need to feel connected to the mission of the agency the mission of the agency while working while working independentlyindependently

Amenable to teachable Amenable to teachable momentsmoments

Negotiators and askersNegotiators and askers Require different skills Require different skills

and abilities and flexibilityand abilities and flexibility Not all staff are Not all staff are

comfortable supporting comfortable supporting people in the communitypeople in the community

KFI’S How-to’s…Down and DirtyKFI’S How-to’s…Down and DirtyControl Physical Space and LocationControl Physical Space and Location

Sell/rent/abandon “group work, activity, and living Sell/rent/abandon “group work, activity, and living spaces” and locate offices in the heart of your spaces” and locate offices in the heart of your communitycommunity

Avoid buildings with large open spacesAvoid buildings with large open spaces Don’t invest in any new real estateDon’t invest in any new real estate Avoid being the landlord or employer of service Avoid being the landlord or employer of service

recipientsrecipients Provide supports in the person’s home communityProvide supports in the person’s home community Teach skills in real environments (instead of Teach skills in real environments (instead of

inventing an artificial environment which is “lifelike”)inventing an artificial environment which is “lifelike”) Use what the community offers – it is full of real lifeUse what the community offers – it is full of real life

The great sodaThe great soda machine debate machine debate

What it was and What it was and what it said about uswhat it said about us

KFI’S How-to’s…Down and DirtyKFI’S How-to’s…Down and DirtyEvaluate Your OrganizationEvaluate Your Organization

Ask hard questions about your present services and Ask hard questions about your present services and give brutally honest answersgive brutally honest answers

Abandon the notion of “readiness”, the “continuum of Abandon the notion of “readiness”, the “continuum of services”, and the idea that people need “fixing”services”, and the idea that people need “fixing”

Don’t license anything that you don’t absolutely have toDon’t license anything that you don’t absolutely have to Find like-minded allies within and outside of your Find like-minded allies within and outside of your

organization organization Empower staff and flatten your organizational structureEmpower staff and flatten your organizational structure When one individual leaves a group service, don’t When one individual leaves a group service, don’t

backfillbackfill Plan the systematic abandonment of services that are Plan the systematic abandonment of services that are

not individualized, personalized, and/or based on not individualized, personalized, and/or based on people’s dreams, abilities, and desirespeople’s dreams, abilities, and desires

Work in a state of positive discontent – know that there Work in a state of positive discontent – know that there is always a better wayis always a better way

KFI’S How-to’s…Down and DirtyKFI’S How-to’s…Down and DirtyLook at Whole Lives, Not ProgramsLook at Whole Lives, Not Programs

Implement true person-centered planningImplement true person-centered planning Talk about Talk about youryour dreams for individuals, set your dreams for individuals, set your

sights highsights high Assure there are no double standards – people’s Assure there are no double standards – people’s

lives should reflect what you would want and needlives should reflect what you would want and need Ask, “If a person had the right supports, would Ask, “If a person had the right supports, would

(s)he need to go to a day program, sheltered (s)he need to go to a day program, sheltered workshop, or live in a group home?”workshop, or live in a group home?”

Build the right supportsBuild the right supports Focus on Focus on one personone person at a time at a time

Taking a Holistic ApproachTaking a Holistic Approach Doing something in the community that Doing something in the community that

has nothing to do with work may have has nothing to do with work may have everything to do with work . “I know everything to do with work . “I know Robert.”Robert.”

Building social capitalBuilding social capital The power of civic involvement & The power of civic involvement &

networkingnetworking

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 his house and hang curtainsclean his house and hang curtains

Home Owner

Works 14 hrs/wk

Volunteers 20 hrs/wk; receives 21 home support and 4 community support hrs/wk

Robert’s Whole Life Supports

Other Valued Roles…

Member Knights of Columbus

Member of Lifestyle Fitness Center

Advocate and Public Speaker

Good Neighbor

KFI, 1024 Central St., Millinocket, KFI, 1024 Central St., Millinocket, ME 04462ME 04462

Community is Community is relationshipsrelationships

NOT placesplaces

- the real hurdle- the real hurdle

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

Courtney’s StoryCourtney’s Story Graduated from high Graduated from high

school June 2012.school June 2012. Owns her own home.Owns her own home. Enjoys hanging out with Enjoys hanging out with

her friends.her friends. Volunteers in her Volunteers in her

community.community. Has her own credit card Has her own credit card

and checking account and checking account and is building excellent and is building excellent credit.credit.

Established a vending Established a vending machine business.machine business.

Challenges to KFIChallenges to KFI Low expectations and attitudes about Low expectations and attitudes about

employment on the part of people with employment on the part of people with disabilities, family members, case workers, etc.disabilities, family members, case workers, etc.

Reluctance for people and their families to risk Reluctance for people and their families to risk losing benefits.losing benefits.

The volunteerism trap – it doesn’t The volunteerism trap – it doesn’t naturallynaturally lead to paid employment. lead to paid employment.

Dismal results in terms of numbers of people Dismal results in terms of numbers of people working and amount of hours per week working and amount of hours per week working.working.

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Suggestions for moving Suggestions for moving forwardforward

Pay better for the things you want than the Pay better for the things you want than the things you do not want.things you do not want.

Make all paperwork easier for the desired Make all paperwork easier for the desired outcome (even the IRS has a 1040 EZ).outcome (even the IRS has a 1040 EZ).

Make sure attitudes, policies, forms, etc. make Make sure attitudes, policies, forms, etc. make it easier to achieve the desired outcomes and it easier to achieve the desired outcomes and notnot re-enforce the old ways. re-enforce the old ways.

Provide Provide values trainingvalues training along with along with opportunities for individuals, their families, and opportunities for individuals, their families, and staff to experience success with: integrated staff to experience success with: integrated employment, community living with employment, community living with reasonable risk, and community connections reasonable risk, and community connections without the presence of paid staff/family. without the presence of paid staff/family.

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Suggestions for moving Suggestions for moving forwardforward

Understand that change takes longer than Understand that change takes longer than you anticipate.you anticipate.

Continually revisit policies and weigh them Continually revisit policies and weigh them against results. Close loopholes, reinvent against results. Close loopholes, reinvent systems, send a consistent message. systems, send a consistent message.

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Key Components That Sustain Key Components That Sustain ConversionConversion

Schedules designed around real life needs.Schedules designed around real life needs. Staff duties assigned around their Staff duties assigned around their

interests, connections and talents.interests, connections and talents. Flexible, wraparound supportsFlexible, wraparound supports Service provided based on identified needs Service provided based on identified needs

and desires, not time of day and desires, not time of day Shared supports based on real interests Shared supports based on real interests

and activities, not ratios. and activities, not ratios. Emphasis on Employment First!Emphasis on Employment First!

““The bottom line of the The bottom line of the social sector organization social sector organization

is ‘changed lives’.” is ‘changed lives’.”

Peter DruckerPeter Drucker