A Partnership Approach to

Supporting People with Complex Needs and Challenges to

Live a Rich and Inclusive Life

A Partnership Approach to

Supporting People with Complex Needs and Challenges to

Live a Rich and Inclusive Life

Hope Leet Dittmeier and Anne ScottRealizations, Louisville KY

AgendaIntroductions

The Values Underlying Our Work

The Nature of Our Relationships with One Another

The Practices in Which We Engage

The Design of Our Service Structures

IntroductionsIntroductions

Hope, Ann, Anne, Frieda,and Realizations

Hope Leet DittmeierWife

MotherSister-in-Law

Founder/Executive Director of RZ

Trainer/Consultant

RealizationsFounded in August 2006

Partner with 21 people/families

Mission-driven

Customized and individualized - no groups, congregation

Not a residential service

Known for supporting people with complex needs - by design

Still evolving

Ann62 years old

One of 8 children

Denied oxygen at birth

Grim predictions

Denied public school education

Adult life began in sheltered workshop

Long-term mental health services

AnnRetired after working for 30 years

Owns her own home

Rich life with valued roles

Meaningful and sustained relationshps

Anne

Mother

Mother-in-law

Grandmother “Nana”

Community Volunteer

Former Business Person

Friend and Neighbor

Advocate/Legal Guardian

Frieda

58 years old

Youngest of 8 - no contact w/family of origin

No public education

Complex needs and challenges from intellectual disability & physical/emotional violence

Just 3 yrs ago had 18 page behavior support plan

Multiple medical challenges

ValuesValuesThe Ideological Framework

for Decision-Making

What is the primary purpose of service?To improve the quality of life for people we support (of course!)

What would most impact quality of life?

People tell us they are most impacted by loneliness and lack of opportunity

LonelinessA recent study at University of Arkansas says 52% of the people with disabilities they polled said that they were “really depressed or sad.”

52% compared with just 7% of the general population

Primary reason given is “Lonely - don’t have friends.”

Loneliness in the U.S.

Loneliness in the U.S.

Lack of Opportunity

Why?

The reality of devaluation

Occurs when people are seen as

different

in a way that is perceived negatively by society

Bad Things HappenDisability becomes life-defining

People are seen as needing something different than others and, thus, are separated and segregated

Results in people being deprived of typical life experience and exposed to non-normative experiences

Bad Things HappenCast into negative roles:

Eternal Child

Object of Pity

Menace

Patient

Burden

Lonely and isolated

Low expectations fulfilled

Ways to Address Devaluation

Make certain we don’t do anything to confirm or perpetuate the negative roles which have been cast upon people

Minimize or disprove the negative roles which have been cast upon people

Help people obtain new roles that fit who they are and that are highly regarded by other citizens

It’s about ROLES!Roles define who we are, how we are seen by others, where we belong

A role is a noun

Helping people BECOME what they can BE

ROLES instead of . . .

Physical presence

Activities - keeping people busy

Changing (fixing) people

Entertainment - having fun

Companionship

Safety and security

Physical comfort

Most Highly Regarded RolesAdult

Employee

Head of Household

Contributor

Friend

Expert

Neighbor

Member

Student

Caregiver

Activist

Artist

Athlete

Other Roles . . .

Student

Significant Other/Wife

Advocate

Actor

Musician

Presenter

Frieda

Frieda’s HistoryChaotic childhood at home

As a teen committed to an institution

Series of personal care homes

Frieda’s History

At least three “emergency placements”

Staying in the home of others - for profit!

Has lived in 17 places

Previous “Living

Arrangements”

No choice of who to live with

No relationship prior to living together

Not able to be homemaker - other people cooked, cleaned, did laundry

Not Frieda’s belongings, space, schedule

No attention to Frieda’s image or competence

No control over the front door

Frieda’s Home2 BR, 2 BA condo

Mature complex, landscaping,residents

Clubhouse

The Highlands neighborhood - highly valued!

Sense of neighborhood

Busy with places to walk, bike

Housing subsidy - “Section 8”

The Benefits of Having A Home of One’s Own!

Control over the front door

Social status

Permanence

Relationships

Hospitality

Greater independence

Customized

Reflects personality and identity

The Benefits of Having A Home of One’s Own!

Employee

Volunteer

Neighbor

Hostess

Member

Regular

PartnershipPartnershipThe Nature of our Roles and

Relationships with One Another

Takes timeRequires nurturing

Shared ValuesAgreement about what is worth working toward

Consensus about how to treat one another, especially in the face of adversity

Recognition and respect for one another’s “non-negotiables”

Shared Responsibility

Doing “with” one another vs. doing “to” or even doing “for”

Balancing investment and effort between parties

Taking responsibility for our actions - regretting our errors

Mutual RespectHonoring one another’s previous experience

Recognizing one another’s expertise or perspective

Having clarity about each party’s boundaries

Portraying one another in positive ways

Role Clarity

Natural authority of people being supported and their families

Proper purview of service

Clear expectations

Being “friendly” but not being friends

Communication

Being honest

Discussing differences or disagreements

Keeping one another informed

Maintaining confidentiality

Conflict

Not about IF things go wrong, but WHEN things go wrong

Notice the learning

Create a positive and productive outcome

Avoid blame

“Interpersonal Identification”

People who identify with another will generally:

Want good things for the other

Want to be with the other

Communicate good things about the other

Want to please the other

Possibly want to be like them

Relationship w/RZBegan in 2009 with investment of time

Assuring we embrace the same values

Helpful preparation (“advise”) based on RZ experience

Respect for my relationship and role with Frieda

Commitment to getting to know Frieda first

Making our own way - no blueprint - figuring it out as we go

Challenges

People were stretched

Communication

Resources for orientation and ongoing training/support

Over-reliance on technology

Role of RZAdvisor/mentor/teacher

Information/experience

Commitment to values

Problem-solver

Honesty

Respect

Role of Family & GuardiansExpert regarding Frieda’s needs

Advocate for what is best

Authority to make decisions

Historian

Financial manager

Holidays

“Back-up” by design

PracticesPracticesThe Efforts in Which We Engage

Sequence Matters

Typically services are pre-designed based on professional ideologies about what people need

Decisions are made before knowing who will avail of the service

People are “fit into” the model

DiscoveryGetting to know people in a different way

Focusing on:

Capacity

Commonality

Contribution/Citizenship

Culture

Thinking about potential and possibility

Mallory“Profound” intellectual disability

Quadriplegic and Epileptic

Nonverbal

Tires easily and can’t tolerate temperature extremes

Cries frequently

Mallory Laughs and cries at appropriate times

Loves to be read to

Enjoys young children

Cares about access and fairness

Loves her pets and being outdoors

Appreciate nice, pretty things

Person-Centred Planning

Deciding what is most worth pursuing - naming and describing the roles

Interests

Skills

Conditions

Imagining the best possibilities

Asking “What would it take?”

What is Person-Centred?

Variety of methods or tools available

Personal Futures Planning

Essential Lifestyle Planning

PATH

Focus on one person

Positive possibilities

Rich in roles and relationships

Customized supports

What Person-Centered is NOT

Only accomplished using colored markers!

Just documenting the answers to simple questions

Giving people whatever they want

Ignoring people’s most fundamental needs

Sticking only to what we know how to do

Resource DevelopmentMobilizing and creating desired supports:

How do valued citizens go about this?

What places and resources are used by others?

Who is in the best position to assist?

Mallory is a Teacher!

Service Delivery

Relying first on natural supports

Supporting natural supporters

Looking next to generic options

Doing only what is ours to do

Being as invisible as possible

Evolving as We Learn

Continuing to ask the right questions

Are the most fundamental needs being addressed?

Are the most effective methods and means being utilized?

Are the right supporters involved?

Is the setting right?

Frieda’s Discovery and Employment Experience

Previous employment history -sheltered workshop, enclave

Need to be out of the house

Invited to participate in MG&A “Discovery Project” thru RZ

Customized employment was the goal - mutually beneficial work relationship between Frieda and employer

Frieda’s Discovery and Employment Experience

Intensive discovery process to uncover Frieda’s yielded Employment Profile:

Preferences

Contributions

Conditions

Frieda’s Discovery and Employment Experience

Identified potential

Connectors

Neighborhood resources

Employers

Planning meeting at clubhouse (frustrating!)

Job development efforts - approaching employers

Service StructuresService StructuresThe Design of Our

Administrative Systems

Invest resources in people rather than buildings, vehicles,

programs

Listen deeply and constantly

Invite and involve others

Allocate individualized

budgets

Utilize custom recruitment strategies

Collaborate in hiring and employing

Build and rely on teams

Empower supporters

Frieda’s TeamRecruitment and holding out for the right people

Without previous experience

With interests & community connections

Personal success

Willing to stretch comfort zone

Confidence to be bridge-builders

Frieda’s Team

Diversity - valuing the contribution and experience of individual supporters

Initiative and responsibility

Flexibility - change is inevitable

Commitment - truly care about Frieda

Supporting Frieda’s Team

Avoiding the caregiving trap

Not doing things for her that she can do herself

“Un-training” - helping people move beyond long-held stereotypes about people with disabilities

Team meetings

Managing challenges

CommitmentCommitment is what transforms a promise into reality.It is the words that speak boldly of your intentions.And the actions which speak louder than the words.

It is making the time when there is none,Coming through time after time after time, year after year

after year.

Commitment is the stuff character is made of.The power to change the face of things.

It is the daily triumph of integrity over skepticism.unknown author