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