Shapes of Things to Come: The Transformative Journey of ... · Key Elements of Our Change Journey...
Transcript of Shapes of Things to Come: The Transformative Journey of ... · Key Elements of Our Change Journey...
Shapes of Things to Come: The Transformative Journey of
Intentionally Changing the Way We Support People with
Disabilities
Hanns Meissner, PhD
March 2 and 3 2017, Catamaran, Wien
An Organizational Narrative
I have written a book called Creating Blue Space.
It is a story about caring people dealing with one
of the most important challenges facing the
community and people with developmental
disabilities:
How to reshape an organization with deep
investments in serving people in groups to
supporting individuals in self-directed
arrangements as citizens of their communities?
Why is The Creating Blue Space Story
Important?
• It underscores the powerful forces at work as a society attempts to work with difference.
• The narrative invites others to participate in the change journey to social inclusion from client hood to citizenship.
• It is realistic about the challenges that will confront individuals, agencies and the system on their change journey.
• It presents positive and successful examples of changed lives in spite of highly constrained environments – it is hopeful yet realistic.
WHY BLUE SPACE? It is the calm, life sustaining,
place in the eye of the hurricane
In a world of moral hurricanes some people can and
do carve out rather large ethical spaces.
Overregulation
PrejudiceAbuse
Marginalization
Assumptions About Disability
Space for Ethical
Action
PovertyWorkforce Crisis
Funding CutsSegregation
• The Opening of Our Mind – Curiosity
• The Opening of Our Heart – Compassion
• The Opening of Will – Courage
• The Promotion of Generative Action –
Implementing Innovative Support
Solutions
Creating Blue Space – A Social Container
and an Interior Condition that Fosters
We need
mechanisms to
coordinate all
the services for
needy
consumers
We need
institutions to
care for special
populations
We need circles
to connect a
person’s unique
qualities to a
community
We need
communities
with capacities
to socially
include all its
members
Emerging Support Models Reflect Our Striving for the
Wholeness of Our Communities
I’m a patient – cure me!
I’m a consumer – satisfy me
I’m a person – listen to me
I’m a citizen – include me
Evolutionary Voices
Through a Window
Part of a
Programmed
Activity
As an Active Citizen Supported by a
Circle
Community
Our Beliefs About People with Disabilities Influences How a
Person We Support Experiences the Community
Seeking Good Form In Relationship & Support
Institutional
Care
Managed
Care Integrative
Supports
Community
Supports
Brian’s Story Tracks the Evolution of the
Developmental Disabilities System
The Four Primary Forms that DD Services Have Assumed
Over the Past 60 Years
People with
Disabilities are
Tragic &
Vulnerable
Create Special
Institutions
People with
Disabilities are
Consumers
with Clinical
Needs
Coordinate
Care
People with
Disabilities
are
Individuals
with
Capacities
Person-
Centered
Supports
People with
Disabilities
are Citizens
Community
Resources
Personal
Care,
Activity,
Housing
Plan of Coordinated
Care, with
Appropriate Levels of
Service, Customer
Satisfaction
Individualized
Supports leading
to job, home &
relationship
Valued
Roles – A
Life of
Distinction
Our Assumptions About People with Disabilities
Our Design Responses
The Outcomes that Emerge From Our Care and Support Designs
Level 1: Downloading Stereotypes: By attending to
disability we listen for clues leading to diagnosis and
treatment.
Level 2: Selecting Programs Protocals: By
attending to service delivery options we listen to
the degree of client satisfaction with services.
Level 3: Fostering Partnership Relationship: By attending
to the person we listen to the experience and desires of the
individual and our relationship with one another.
Level 4 : Regenerating the Social Field: By attending
to our deeper purpose we listen to an emerging
future vision of a more diverse and healthy
community
We Attend This Way to Listen & Act That Way
Institutional
Care
Managed
Care
Integrative
Supports
Community
Supports
Prevalence
Time
Horizon 1
Horizon 2
Horizon 3
Present
Concerns
Innovations at Play
Sustaining - Disruptive
Inspirational Next Practices
Essential Features
to Maintain
Future
Aspirations
SHAPES OF THINGS TO COME: EVOLVING SUPPORTS FOR PEOPLE
WITH IDD
Our Founding Parent’s Culture-Creating Beliefs &
Actions
in Four Movements
• First Movement –Rejection of Prevailing Thought
• Second Movement –Making Visible the Socially Invisible
• Third Movement – Early Acts of Systems Advocacy
• Fourth Movement –Expanding Community Capacity
Lasting Impact on Our Organizational
Culture – Beliefs & Assumptions
• Challenge Authority – Disrupt Past Patterns
• Social Justice of All – Build Inclusive Communities
• Small is Beautiful – People not Systems Matter
• We Can Make Our World – We Can Create our
Future
• Explore creative ways to support people in
living a life vs. simply experiencing programs.
• Develop personal and organizational
capacities to co-create individualized
support arrangements with individuals and
families.
OUR CHANGE IMPERATIVE
People with developmental disabilities
are vulnerable and incapable
We need to care, protect and
develop special places for people with DD
I have suspended my assumptions & listened to some
Advocates, Families and Visionary Leaders that claim
People with DD have gifts and capacities.
I have gone to providers and communities that
are supporting Individuals with DD in typical
settings leading a life they value and have experienced
& learned what they are doing differently.
I see that I have a higher
purpose and role in fostering
inclusive communities. I can
expand my administrator
function to generative
leadership.
Downloading
Opening My Mind
Opening My Heart
Open Will
I have worked with individuals, families, and other allies
to intentionally avoid program solutions to co-design
an individualized support arrangement based on a vision
of a life the person values.
Crystallizing Vision and Intention
We have implemented an individualized support
arrangement complete with social, knowledge,
& financial capital in the blue space.
Prototyping
We have developed Structures and Capacities to Support
Technical and Adaptive Actions to intentionally move
towards a Integrated and Community Supports Model.
Performing
In the Blue Space We Have:
• Closed Group Homes
• Reduced and Closing a Sheltered Workshop
• Collaborated with Individuals and Families on
Co-Designed and Co-Implemented
Individualized Supports
• Moved Towards Self-Directed Support
Arrangements
• Created Safety for Innovation to Emerge
Through Learning Architecture and Supporting
Individuals with Passion About Next Practice
The Arc of Rensselaer County - Evolving Towards Individualized Supports in Housing
Keys to Life Quilt – Mixed Media by Beth Mount
Some Stories of Individualized Supports
Richard
• lives in his own
apartment
• his yard has space
for his garden and
his “stuff ”
• near us to visit
everyday
• enjoys and has
friends in the
neighborhood
• has his own small
business
• volunteers
The Halls
and Brian
Doug and Brian
•stayed at home vs.
institutional placement
•1st of its kind support
arrangement -
modification of parent’s
house
•supported day activities
out of the home –
redirecting group
day program funds to
individualized supports
•volunteers at a day care
•connected to their
neighbors
John and Emily
.supported John
and Emily getting
married.
.have a home of
their own
.very involved
in their church
.worked in a
nursing home
and a restaurant
respectively
Models of Care are Designed
For the Predictable
Support Models are
Designed
For the Emergent
Consider the Differences
Key Elements of Our Change Journey
• Understanding Our Location in the Evolution of Care and Support Models
• Personalizing the Journey and Attaching it to a Calling for a Higher Purpose.
• Understanding Our Context (Eco-System).
• Being Aware of Our Cultural (internal and external) messages.
• Moving to Collaborative Partnerships and Away from Hierarchy.
• Creating Blue Space (and architecture) for Social Innovation
• How do we foster a connection to our deepest purpose and highest future self?
• How do each of us develop the capacities needed to generate strong support models including partnering with individuals and families?
• How do we relentlessly remain aware of our underlying assumptions that lead us to certain care and support models?
• What kind of outcomes are we intentionally seeking?
• What do we retain from the care models as we evolve to support models?
• What kind of relationships (between the household, civic, profit and non-profit sectors) promote desired outcomes?
• How does the system become more aligned and friendly to support models?
Lingering Questions for All of Uss
for All of Us