“If You Build It They Will Come; If You Close It They Can Belong: A Tale of Transformation”

1. “If You Build It They Will Come; If You Close It They Can Belong: A Tale of Transformation” Presented by: Gail Fanjoy, Executive Director, KFI 1024 Central St., Suite A, Millinocket, ME 04462 gfanjoy@kfimaine.org

2. Maine’s mile high mountain – Mt. Katahdin

3. KFI…Customized supports to assist people to • Live in their own homes • Work in regular community businesses • Be members and contributors of their communities

4. It has not always been this way …KFI is a 52 year old community service agency. We spent the first 20+ years developing programs and erecting buildings that served to segregate people with intellectual disabilities from society, but kept them busy and safe.

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

6. KFI’s Work Activity Center circa 1980 • Leo attended the day program 5 days a week. • Slow worker • Great social skills • Lived with his father in a neighboring town Leo got his big break in 1986 – a job in his home town!

7. Supported Employment’s failure to solve all problemsand why we did not have to launch a second career

8. LEO • Owns his own home • Works at a credit union 20 hours/week with natural supports (for over 20 years) • Member of the Knights of Columbus • Volunteers at his church’s thrift store every week • Receives 7 hours a week of paid supports to help him in his home.

9. Questions fromthe early 80’s: • Is there anyone anywhere doing anything better • Why can’t we do that

10. JACKIE The state has the dollars… We’ve got the sense. Why apartments are better than galvanized washtubs.

11. Notes from a KFI Management Team Meeting on July 8, 1987: “The ideal program would use an individual formula to address vocational, personal, social, and recreational needs of each individual. Where do we begin?”

12. Maine’s Funding Structure Then • Block grants to programs – although state dollars represented a fraction of what we get today, they provided maximum flexibility. • $24,500 grant from our DD system to do supported employment. • Bridge money from Vocational Rehabilitation to establish an assessment and training site in a local hospital. • Took “day program dollars” and helped support people in jobs and to move into their own homes. • Redefined a unit of service from a “day” to an “hour” to begin customizing people’s supports. • Redefined what people’s “day” looked like. • Designed staff schedules and duties around their preferences, skills, and interests.

13. “Just as important as the decision on what new and different things to do, is the planned systematic abandonment of the old that: • no longer fits the purpose and mission of the business, • no longer conveys satisfaction to the customer, • no longer makes a superior contribution…” Peter Drucker

14. KFI’s “CONVERSION MILESTONES” • 1985: KFI’s private segregated school for children between the ages of 5 and 20 was phased out. • 1987: Due to the success of job placement and supported employment, KFI closed its sheltered workshop. • 1989: All sheltered work was abolished in favor of community employment and KFI’s day program was transformed into a program which provided broad opportunities for community participation. • 1996: KFI ended all center-based services and provided personalized supports in people’s homes, workplaces, and communities.

15. Some Fundamentals • GET TRAINING • Get as much information about innovative and emerging best practice: read journals, connect to websites, go to conferences. • UNDERSTAND THE ART OF THE POSSIBLE • Know that there is someone doing daily what others say cannot be done at all.

16. START WITH THE IDEAL AND COMPROMISE FROM THERE. DON’T START WITH COMPROMISE • Define “ideal.” Our supports to people will never be perfect, but we can try to figure out what makes the most sense and set our sights on that. Be committed to working through obstacles. • BE A GENTLE SALESPERSON • Always keep the person’s desires on the agenda to allow you to advocate within the organization, to funders, to family and other providers.

17. STOP TRYING TO FIX PEOPLE • People do not need to pass a test to receive meaningful supports. People are ready NOW for their own home and a real job - they do not need to earn it! Eliminate the continuum! • ABANDON SERVICES • “Nothing is less productive than to make more efficient what should not be done at all.” Peter Drucker

18. PROVIDE SUPPORTS IN THE PERSON’S COMMUNITY • Don’t move the person to your community or the day program’s community. • EMPOWER STAFF • Create opportunities for staff to try new things. Give staff responsibility and authority. Reward and celebrate successes. • DON’T BACKFILL • When one person is out of the group, don’t accept another person into the program. You’ll never convert the program that way!

19. TAKE ONE PERSON AT A TIME • Programs aren’t converted overnight; supports to people must change. Be flexible and creative! Reward initiative and even failures, especially if they represent acts of commission.

20. KFI’S How-to’s…Down and DirtyInvest in Values-based Training • Join APSE and TASH and other organizations that promote personalized supports. • Listen to the gurus • Read the newsletters and journal articles • Connect to web sites • Seek out conferences featuring cutting-edge ideas • Answer the question: “Is anyone, anywhere, doing anything better for people with disabilities?”

21. KFI’S How-to’s…Down and DirtyHire the Right Staff • Hire people for their values, rather than their experience, certification, degrees… • Hire people from the same community as the people they support • Hire people who can describe how they are connected to their communities • Give people permission to use their personal connections on behalf of the people they support • Involve people with disabilities and their families in the hiring process • Ask, “Is this prospective employee a person we can stand up and cheer about?”

22. Vital to your mission and values Ambassadors for the people they support and your agency Highly visible to community members Need to make independent decisions and judgments throughout the day Need to feel connected to the mission of the agency while working independently Amenable to teachable moments Negotiators and askers Require different skills and abilities and flexibility Not all staff are comfortable supporting people in the community Direct Support Staff:Requires a high degree of trust – you don’t see them every day

23. KFI’S How-to’s…Down and DirtyControl Physical Space and Location • Sell/rent/abandon “group work, activity, and living spaces” and locate offices in the heart of your community • Avoid buildings with large open spaces • Don’t invest in any new real estate • Avoid being the landlord or employer of service recipients • Provide supports in the person’s home community • Teach skills in real environments (instead of inventing an artificial environment which is “lifelike”) • Use what the community offers – it is full of real life

24. The great soda machine debate What it was and what it said about us

25. KFI’S How-to’s…Down and DirtyEvaluate Your Organization • Ask hard questions about your present services and give brutally honest answers • Abandon the notion of “readiness”, the “continuum of services”, and the idea that people need “fixing” • Don’t license anything that you don’t absolutely have to • Find like-minded allies within and outside of your organization • Empower staff and flatten your organizational structure • When one individual leaves a group service, don’t backfill • Plan the systematic abandonment of services that are not individualized, personalized, and/or based on people’s dreams, abilities, and desires • Work in a state of positive discontent – know that there is always a better way

26. KFI’S How-to’s…Down and DirtyLook at Whole Lives, Not Programs • Implement true person-centered planning • Talk about your dreams for individuals, set your sights high • Assure there are no double standards – people’s lives should reflect what you would want and need • Ask, “If a person had the right supports, would (s)he need to go to a day program, sheltered workshop, or live in a group home?” • Build the right supports • Focus on one person at a time

27. Taking a Holistic Approach Doing something in the community that has nothing to do with work may have everything to do with work . “I know Robert.” Building social capital The power of civic involvement & networking

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

29. 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 his house and hang curtains

30. Robert’s Whole Life Supports Home Owner Works 14 hrs/wk Volunteers 20 hrs/wk; receives 21 home support and 4 community support hrs/wk

31. Other Valued Roles… Member of Lifestyle Fitness Center Member Knights of Columbus Good Neighbor Advocate and Public Speaker

32. Community is relationships NOTplaces - the real hurdle KFI, 1024 Central St., Millinocket, ME 04462

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

34. Courtney’s Story Graduated from high school June 2012. Owns her own home. Enjoys hanging out with her friends. Volunteers in her community. Has her own credit card and checking account and is building excellent credit. Established a vending machine business.

35. Challenges to KFI • Low expectations and attitudes about employment on the part of people with disabilities, family members, case workers, etc. • Reluctance for people and their families to risk losing benefits. • The volunteerism trap – it doesn’t naturally lead to paid employment. • Dismal results in terms of numbers of people working and amount of hours per week working.

36. Suggestions for moving forward • Pay better for the things you want than the things you do not want. • Make all paperwork easier for the desired outcome (even the IRS has a 1040 EZ). • Make sure attitudes, policies, forms, etc. make it easier to achieve the desired outcomes and not re-enforce the old ways. • Provide values training along withopportunities for individuals, their families, and staff to experience success with: integrated employment, community living with reasonable risk, and community connections without the presence of paid staff/family.

37. Suggestions for moving forward • Understand that change takes longer than you anticipate. • Continually revisit policies and weigh them against results. Close loopholes, reinvent systems, send a consistent message.

38. Key Components That Sustain Conversion Schedules designed around real life needs. Staff duties assigned around their interests, connections and talents. Flexible, wraparound supports Service provided based on identified needs and desires, not time of day Shared supports based on real interests and activities, not ratios. Emphasis on Employment First!

39. “The bottom line of the social sector organization is ‘changed lives’.” Peter Drucker