Breaking Through the Glass Ceiling to Real Community Inclusion:
How advocates, MCOs and providers can build and implement a shared vision for
the future of community services for people with disabilities
Barb Trader, Executive Director, TASH
Gail Fanjoy, Executive Director, KFI
Lisa Mills, Systems Change Consultant
Merrill Friedman, Vice President of Advocacy, Amerigroup
What is TASH?
Leader in Disability Advocacy since 1975
Values drive, Evidence-based
Bringing Advocates, Researcher and Practitioners
together in powerful partnerships
Volunteer Supported
Cross Disability, Cross Sector
What is TASH’s Vision?
TASH has a vision of a world in which people with
disabilities are fully participating members of
their communities.
We envision communities in which no one is
segregated and everyone belongs.
We envision a world where service providers
focus first on facilitating community
participation, employment and belonging
Today’s Session
• Why is authenticity in person-centered planning and
supports critical for individuals with complex
disabilities and support needs?
• Stories of waiver beneficiaries with extensive needs,
including the planning process, the supports they
receive, and their daily lives;
• Suggest action steps for providers and agencies to
follow to expand the provision of authentic personcentered planning and supports to all people, including
those with the most extensive support needs; and
• Describe how person-centered planning and supports
intersect with Managed Care strategies.
Authenticity
When Planning is Authentic
When Supports are Authentic
• Listening to and prioritizing the
support recipient’s desires and
dreams (spoken or unspoken) is
fundamental
• “Readiness” is not a pre-requisite –
people are READY!
• Planning for expanding:
relationships, community
involvement, choice and control,
and valued/ contributing roles is
essential
• Plans flex as people change
• What’s desired is the driver
• Obstacles are tackled
• Supports are personalized and
individualized
• Opportunities to expand choice,
control and contribution are
actively sought
• Compromise is an interim or last
choice – not a first choice
• Unpaid relationships begin to
exceed paid relationships
• Provider is not the community
Stories of People
Supported by KFI
Presented by: Gail Fanjoy,
Executive Director, KFI
1024 Central St., Suite A
Millinocket, ME 04462
gfanjoy@kfimaine.org
Providing personalized supports which
enable people to:
Live in homes of their own…
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Flexible
Own home or apartment
With or without a roommate
Home ownership if desired
Focus on neighborhood and
community connections
• Nurture natural supports
Work in regular community
businesses…
• Individualized, competitive
integrated employment
• Customized through
Discovery
• Entrepreneurial
• Pathway to employment
activities
• Job coaching and long term
supports (Waiver funded or
private pay)
Be members and contributors to their
communities
• Individualized or interestfocused pairings
• Activity-focused small groups
• Focus on community
connections
• Meaningful days
• Blended with the rest of the
person’s life
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?”
Five Questions that Guide the Development of a Dream
• How can we expand and deepen the person’s
relationships?
• How can we increase the person’s presence in local
community life?
• How can we help the person to have more choice and
control in their life?
• How can we enhance the person’s reputation and
increase the number of valued ways the person
contributes to community life?
• How can we assist the person to develop more
competencies?
Based upon John O’Brien’s “Framework for Accomplishment”
WHOLE LIFE SUPPORTS
Dan, the Pioneer
• Behavioral challenges
resulted in being kicked
out of his 7th foster
home in approx. 11
years.
• 27 years old
• Never had spent any
time without family or
paid supports.
Today Dan has a full life which revolves around owning his own home
39 hours of paid
supports/week; hot
line to state crisis
line; warm line to
KFI staff working
24/7
Strategy:
Helped Dan move into his own home; initially it was a
rented room in a large home owned by the local taxi
service. KFI changed the location of his supports from a
day program to his own home/community; celebrated
when we couldn’t keep track of who he knew, where
he went, and what he did!
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?
Marie’s Challenge to KFI
1991
• Had been institutionalized since the age of 11.
• Lived in an ICF/ID 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.
• 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 given a 30 day notice to leave the ICF/ID 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.
Marie, circa1992
“Somebody has got to do
something, and it’s
incredibly pathetic that it
has got to be us.”
Jerry Garcia
Boating on one of Maine’s many lakes
There was only one paid person at Marie’s last person-centered
planning event
Marie
• Lesson:
– Supporting people – no matter the
complexities of their disabilities – to live in
their own home and giving them control, can
produce miracles.
• 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.
Courtney
• Cyr Vending established in
December 2013
• 4 donated high end vending
machines placed in area businesses
and establishments
• Amazing team which included KFI
Customized Employment
Coordinator, KFI Support
Coordinator, 3 KFI DSP’s, VR
Transition Councilor, Community
Case Manager, Benefit Specialist,
Maine Small Business Council
representative, and most
importantly, Courtney and her
family
Courtney’s Labels
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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
Community is
relationships,
NOT places
It is where no one
goes “unmissed”
Inclusion is Possible When...
• “Same as rest of us” expectations prevail
• Supported decision-making replaces
traditional approaches which take control
away from the individual
• Provider committed to customized
relationships and supports with each person
they serve
Inclusion is Possible When...
•
Provider does not substitute for community:
– Provider is not landlord, employer, social circle,
transportation provider
– Needs met through community with provider
supporting this to happen
“The bottom line of the
social sector organization is
‘changed lives’.”
Peter Drucker
Agencies that Have Changed
8 Agencies in 7 States
California, Louisiana, Massachusetts, New Hampshire,
New York, Washington, Wisconsin
Changed from Group to Individualized models of
support
Kendrick, Michael. (2009) Some lessons concerning agency
transformation towards personalised services. The
International Journal of Leadership in Public Services, 5(1),
47-54.
Lessons From Agencies that Have Changed
For all 8 agencies:
All support for all people became individualized; no group
programs of any kind were maintained
Individualization happened without external pressure
Impetus for change was leadership embracing values-based
decision-making
Change happened one person at a time; agencies learned as
they went
Net costs to support people was within range of normative
per capita costs
Lessons From Agencies that Have Changed
All 8 agencies
Had no guarantees that the change would be supported by
funders – it was just the right thing to do and they believed
demonstrating outcomes to funders would result in funders
supporting the change
Maintained a balanced budget throughout change process
Remained fully compliant with system funder and
requirements
Were comparatively small; less than $14 MM
Lessons From Agencies that Have Changed
All 8 agencies
Respected and engaged families and natural supporters
Served their share of very-difficult-to-serve people
Had functional individual budgets in place
Coexisted and thrived through political and economic
changes
Identified principal task as developmental/ ongoing in a
person’s life
Changes Reported for People and Staff
•73% reduction in incident reports
•81% reduction in psychotropic medication
•Reduction in inpatient stays
•Fewer interventions by police and emergency services
•Overall improvement in health and well-being
•Improved staff morale/ lower turnover
•Reduction in worker’s compensation claims
Suggested Action Steps for Providers – From
Research
Consider the services your agency provides
Should any services be standardized?
Should any services be individualized?
What would be gained by individualizing
services•For the people you support?
•For their family members?
•For your agency?
•For the community?
Suggested Action Steps for Providers –
From TASH Members
Consider your values
Are mission statement and values aligned?
Are current practices and values aligned?
Is change necessary?
Find a mentor
Train yourself and your staff
Connect with like-minded agencies
“Just as important as the decision on what new and different things to do, is the planned
systematic abandonment of the old that:
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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
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.
Some Fundamentals
•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.
Some Fundamentals
•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 PROGRAMS IN FAVOR OF SUPPORTS
“Nothing is less productive than to make more efficient
what should not be done at all.” Peter Drucker
Some Fundamentals
•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!
Join TASH!
Barb Trader, Executive Director
btrader@tash.org
Become a Member
http://tash.org/get-involved/become-a-member/
Donations and Inquiries
1001 Connecticut Ave NW Suite 235
Washington, DC 20036
Main Info Line: 202-540-9020
info@tash.org
How can Managed Long-Term Services and Supports Facilitate these Practices?
• Fresh Start
• Flexibility
– What can be paid for
– Who can be paid
– How payments can be made
• Feedback loop to TennCare
How Managed Care Changes Things
• Focus on outcomes expected from services
• Not fixing or maintaining people, but life
outcomes that have meaningful, positive impact
on a person’s quality of life
• Health promotion, wellness, prevention and
support for innovative ways to improve and
sustain health and mental health
How Managed Care Changes Things
• Cost effectiveness doesn’t always mean the
cheapest option.
• Best return on investment is focus for
managing limited funding
• Achieving cost efficiencies without
congregation and segregation
Why Managed Care and Employment First Are Good Bedfellows
• Meaningful life change and outcomes
– Employment as a Means to Many
Ends...
Why Managed Care and Employment First Are Good Bedfellows
• Health benefits
– Health and mental health benefits are
clear
Why Managed Care and Employment First Are Good Bedfellows
• Other partners focused on same
outcomes are numerous
– Vocational Rehabilitation
– School Transition Programs
– Workforce System (One Stops/AJCs)
– Community/Technical Colleges
– Businesses
Why Managed Care and Employment First Are Good Bedfellows
• Natural supports:
– Enhance people’s lives
– Allow conservation of limited funding for
paid supports; and
– Are only available in integrated settings
where people without disabilities (who
are not staff) are present.
See the Opportunity in Change
Managed Care is Unlikely
To Cause the Sky to Fall
With Visionary, Values-Led Providers as
Partners, Managed Care can Break the
Glass Ceiling to Full Inclusion