shifting the paradigm: increasing opportunities for choice ... the paradigm...redefining the term...

Shifting the Paradigm: Increasing Opportunities for Choice and Control through Participant Direction

National Resource Center for Participant-Directed Services

March 9, 2010

Greetings and Introductions

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Acknowledgements

Cheryl Ring

Julie Fralich

Romaine Turyn

Connie Jones

Kathy Poulin

Katlyn

Blackstone

Leslie Bray

Sharon Berz

Louise Olsen

Mark Richards

A collaborative workgroup are to thank for the development of this Maine curriculum. A special thanks to:

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Acknowledgements

A significant amount of the “Consultant Training Program” curriculum developed by K. McInnis-Dittrich, Ph.D., K.

Simone, MM, and K. Mahoney, Ph.D. (April, 2006) was adopted for this project.

The National Resource Center for Participant-Directed Services also thanks Linda Velgouse of AoA, and Iris Chan and Amy Herr from the Lewin

Group for their

assistance in making this training possible.

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Acknowledgements

Also, slides from the “Implementing the Principles of Self- Determination into Everyday Lives and The Person Centered

Approach to Planning”

presentation developed by Jeff Keilson

(2007), Advocates, Inc. were adapted to fit our

curriculum.

A Note About the Curriculum

Redefining the term “participant direction”

Scope of our discussions (program vs. philosophy)

“Care Advisor”

vs. “Case Manager”

Intended for an inclusive audience

Recognition of diverse lenses and experiences- please speak up throughout the training

regarding your own experiences

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Overall Goals of Training

Increase understanding and appreciation for:

Benefits of participant-directed practice

Role of participants in choosing a participant-directed model

Supporting people to choose community-based services that best meet their needs

Incorporate principles of participant-directed models into current practice

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Why Participant Direction? Research findings…

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Research Findings

Health and welfare

Same or better health outcomes

Very few incidents of reported abuse, neglect or exploitation

Service use

Modest increase in obtaining equipment

Individuals more likely to obtain services they need

Need not cost more

Caregiver reaction

More satisfied with care arrangement

Expressed less emotional strain

Most felt well-trained to perform duties

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Research Findings

Positive influence on the quality of life

Increased satisfaction

Enhanced feeling of safety

Improves access to services

Participants receive necessary services

Reduces unmet needs

Promotes life in the community

Was shown to reduce nursing facility placements even more than traditional services

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Let’s look at it as not just one program, but rather a paradigm shift requiring us to change how we

think about the ways we deliver services not just one program…

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The Paradigm Shift from “Expert”

to Coach and Trainer

What is a Paradigm Shift?

"one conceptual world view is replaced by another“

(Thomas Kuhn,

1962)

A change from one way of thinking to another

Consumer Direction History

Driven by the Independent Living (IL) movement

Movements that influence IL (initiated in 1960s)

Civil rights movement

Self-help movement

De-institutionalization and “normalization”

movement

De-medicalization

movement

Consumerism

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McDonald and Oxford, www.acils.com/acil/ilhistory.html

Consumer Direction History (continued)

Other movements with similar goals to address civil inequities

Women’s movement

Labor movement

Elder activism

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McDonald and Oxford, www.acils.com/acil/ilhistory.html

Independent Living Philosophical Tenets

All human life has value and every human being should have meaningful options and make choices pertaining to issues that

affect their lives

Consumer control

Cross-disability

Right to fail (take risks)

Choice

Exercise of power; no longer charitable

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International Summit Conference on Independent Living, Washington, D.C., September 21-25, 1999 & C. Carr (2004). ADRC Cross-Training

The foundation of participant direction:Self-determination is a constitutional

right

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Defining Participation-Direction

Those who provide care or services are accountable to the consumer and/or representative

The freedom for one to plan his/her own life

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What

When Who

How

Participant controls

McInnis-Dittrich, Simone, and Mahoney (April, 2006)

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Participant-Directed Models

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Commonly Used Terms

Participant: the person who uses services.

20McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Commonly Used Terms

Care Advisor: Individual who works with the participant in designing their plan. The person the participant goes to with questions.

21McInnis-Dittrich, Simone, and Mahoney (April, 2006)

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Commonly Used Terms

Representative

Person appointed by the participant to assist in directing services. Also known as surrogate or designee. Often unpaid

Financial Management Services (FMS)

Appointed to assist an individual to manage fiscal employment and/or budget responsibilities.

Worker

Someone chosen by the individual to provide direct personal assistance. May include friends and family.

Individual Budget

An allocated amount of funds that a participant can use to hire workers and/or purchase other goods and services to meet their support needs. The term “flexible budget”

often indicates the ability

of the budget to be used as a participant moves from one setting

to

the next.

McInnis-Dittrich, Simone, and Mahoney (April, 2006)

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Assumptions of Participant Direction

McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Requirements for Participant Direction

24MACROW Networks, adapted from Keilson, 2007

Does this process go against the grain of what you already know (or have done in the past)?

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26Modified from Keilson, 2007

How can we apply participant direction to existing programs?

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Break

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Video Clip: Examples of participant direction

www.barnsley.nhs.uk/partnerships/ever y-adult-matters/individual-budgets-

personal-stories.htm

(Marion)

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“Perhaps the greatest luxury of all: Choice”

Brochure, Little America Hotels and Resorts

Keilson, 2007

The role of the aging network staff needs to be flexible and mirror the needs

of the individual

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Beneficial Skills of StaffListener Listen…

listen, and listen some more

CommunicatorProvides timely and accessible information; knows communication patterns of the individual

Open-minded Leave judgments behind; patience

Teacher

Ensures knowledge of responsibilities, supports available, benefits and risks (upfront). Assists in building skills required (i.e. hiring workers, completing forms)

Facilitator and Coach Facilitates informed decision-making through uncharted territory

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Systems of Support: Care Advisor Services

Supports participants to identify need and potential solutions

Trains participants on roles, responsibilities, and required skills

Supports participants to define and monitor quality

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Keilson, 2007

Advising the Individual/Representative: Hiring Personal Care Workers

Recruiting and interviewing workers

Use of criminal background checks

Managing and supervising workers

Identifying back-up support

Completing timesheets and working with fiscal intermediary agency to complete required forms

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Advising the Individual/Representative: Directing Individual Budgets

Understanding opportunities to access adaptive technology and services not otherwise easily accessed

Understanding limitations of budget

Negotiating reasonable costs

Choosing and monitoring providers and services

Monitoring expenditures and tracking purchases, payments, etc.

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Systems of Support: Financial Management Services (FMS)

Ensures compliance with laws/ regulations (DOL, IRS, etc.)

Administers payroll for directly hired workers

Pays providers on behalf of consumers

Provides monthly statements of hours or expenditures

Provides financial monitoring and reporting

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Recognizing the Learning Curve… of both the participant and staff

How to make informed choices

How to recruit and train workers

How to identify and address needs

How and when to ask for help

If using an individual budget:

Knowing what you can and cannot use a budget for

What things cost and how to use funds

Keilson, 2007, Adapted from Self-Determination at a Glance, Access to Independence, Inc., 1999.

Providing the Option to All Participants

How do we support people to make a choice in how they receive support?

What are the questions they should consider?

What information do they need to be fully informed?

How are we addressing agency liability?

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Empowerment to Make Choices

Some may choose agency services

Some may decide it is not right for them

Some may choose a combination of vendor services and participant-directed services

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Meet the participant where he or she is on the continuum of participant direction and

support their growth.

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Empowerment

Creation of opportunities for participant direction (even in existing programs)

Creation of opportunities for self-discovery, learning, self-motivation, self-monitoring, and accountability

Increases sense of competence and independence

Leads to individual decision-making which creates a greater sense of satisfaction with services received

41McInnis-Dittrich, Simone, and Mahoney (April, 2006)

People First Language

Instead of disabled…

I am a person who has grown older or has a disability

Instead of mentally retarded…

I am a person with a intellectual or cognitive disability

Instead of mentally ill…

I am a person with a mental health disability or I am in recovery

I am a person first, like everyone else

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LUNCH

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Risk Tolerance Quiz

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Risk Survey: Directions

Section One: Check one answer for each question

Section Two: Check one answer for each question

Section Three: Check up to three spaces for each item

Example:Me

My Friend Elder I Work With

Go against doctor’s orders ____ __2__ __2__

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Risk Survey: Scoring Results

See attached scoring sheet for numbers and interpretation

Section One and Two: Give yourself the number next to each answer you provided and total each section

Section Three: Sum the totals for each column and then all three columns.

Example:Me My Friend Elder I Work With

Go against doctor’s orders _____ __2__

__2__ = 4

(2 points for each item checked)

Defining Risk

The possibility of a bad or undesirable outcome

The willingness (or unwillingness) to tolerate uncertain outcomes

The right to make different decisions

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

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What is Your Risk Tolerance?

Risk Risk AverseAverse

Risk Risk SeekerSeeker

McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Risk Tolerance may be a Function of…

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The will to be independent Birth order

Personality structure Level of education

Biological need for thrill Previous experience

Age and gender Perception of irreversibility

McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Risk with Dignity

Exploration of options and broadening choices

Exploring what risks exist

Careful consideration and discussion pertaining to back up supports

Honoring choice

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Points to Remember…

Making decisions involves risk

Risk is inherent in all that we do

Risk is not just associated with consumer- directed services

Transitioning to a consumer-directed state of mind involves “letting go”

of the need to do the

right thing as the professional sees it

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Questions to Consider

Who can direct their own services? Why do you feel these individuals can over others?

How can they self-direct within their current services?

What stands in their way?

What type of support would they need to be able to direct their own services?

What constitutes “services and supports”

in this new approach?

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Components of Decision-Making

Intellectual Factors to Decision-Making

What knowledge do people bring to the table to make decisions about their services?

What kinds of gaps in knowledge may affect the kinds of decisions participants will make?

How do we “educate”

people without violating their right to self-determination?

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Emotional Factors to Decision-Making

How do past emotional experiences affect the decisions a person makes?

What kinds of things do individuals have strong emotional reactions to? Fear? Joy? Anxiety? Anger?

How do emotional factors cloud the role of knowledge in decision-making?

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Social Factors to Decision-Making

What social experiences (or desired social experiences) will affect who the consumer chooses to interact with?

How do you think the individual sees himself or herself in a relationship to greater society? How does this affect decision-making?

What is the influence of formal networks?

What is the influence of family dynamics or other informal networks?

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Purpose-Driven Decision-Making

Do you think consumers have a “vision”

for their lives? Why or why not?

Do those you work with have dreams of what they want in life?

Do they see a reason for their lives?

How will this impact decision-making?

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Points to Remember…

Decisions are not purely made based on intellectual knowledge alone

We all make decisions based on desired outcomes as well as intellectual, emotional, and social factors

Knowledge of decision-making ingredients will assist us to understand and support participants through the decision-making process

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Facilitating the Decision-Making Process

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A Few Points Pertaining to Decision- Making

All decision-making involves risk

Few decisions are irreversible and are always a learning experience

What is a mistake or failure to you may not be seen as a mistake or failure to someone else

The “illusion”

of choice is more degrading than the lack of it

Consumer choice means consumer choice (the question is how do we support it while addressing barriers and presumed liability)

60McInnis-Dittrich, Simone, and Mahoney (April, 2006)

What is Important is…

Individuals are making informed decisions

You have difficult conversations about risk to ensure individuals are informed

You perform and document training and communication pertaining to risks, options, and supports

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When Decisions Seem Risky

What is influencing decisions?

What

risks exist? Who is risk averse?

How does your own risk personality influence how you react to these decisions?

What can you do to broaden the individual’s perspective about choice without violating their right to choose?

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

When Decisions Seem Risky (continued)

Suggest supports to minimize risk and develop system supports when possible

Bottom line…

is the person at imminent risk for abuse or neglect? Danger to self or the community?

Use supervision, interdisciplinary team meetings, and case conferences as a place to seek support

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Techniques to Enhance Decision- Making: Personal Stories

Types of services, problematic situations

Encourage consumer to talk about his or her life

Explores previous decision-making experiences

Themes and interests emerge that can be applied to existing situation

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Techniques to Enhance Decision- Making: Bulls-Eye Diagram

Representatives, workers, etc.

Who is in your first circle?

Who is in your second circle?

Third circle-

those you know, but are not close to?

How often do you see these people?

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

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Bulls-Eye

My Parents

Senior Center Acquaintances

John’s Parents

Our neighbor, Kitty

Our nephew, James

Members of the Church

The Smiths

The Jones

Techniques to Enhance Decision- Making: Brainstorming

Services to purchase, support needed

Maximize the number of ideas generated to solve problem within a short period of time

Get creative juices flowing

Revisit all ideas for most important, effective, practical

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Techniques to Enhance Decision- Making: Parallel Scripting

Addressing challenging decisions, feeling overwhelmed

Tell the elder a story of someone in a position similar to his or hers

Through the story, options can be offered to help the elder explore what he or she can do to meet his or her service needs

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Techniques to Enhance Decision- Making: Making a List

Choosing participant direction, emergency back-up, hiring workers

Pro/Cons list or Best/Worst case scenario

Opportunity to fully explore choice before decisions are made

Opportunity to think through any decision, especially those that seem to be heavily weighted in favor of emotional or social factors

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McInnis-Dittrich, Simone, and Mahoney (April, 2006)

Example: Pros and Cons List

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Example: Best and Worst Case Scenario

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How long can I go

without a worker?

What will happen if I do not have a worker?

Defining and Monitoring Quality

Measuring and monitoring quality still necessary when using a participant-directed model, but the shift in roles takes place here as well

New models for measuring and monitoring will need to be built into programs

How does this impact:

Role of the individual and/or representative?

Role of the AAA staff?

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Building an Environment Supportive of Consumer Direction

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Family Engagement

Why may family members be hesitant?

May worry about safety and quality of care

May worry about additional burden

Addressing resistance

Accept existing role of family

Start small

Be patient; build trust

Keep at it

Recognize both the support that may be needed, but also the benefits

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Cultural Awareness

Culture may play into an individual's decision to self-direct as well as the role of their family or loved ones

Respect and involve those who the individual identifies as important

Slowly build trust and individual skills for participant direction

Participant direction can bridge gaps (i.e. language, shopping and meal preparation of ethnic foods)

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Working with Your Agency: Possible Challenges

Policies that limit choice

Vendor practices/existing contracts

Traditional medical or risk adverse approach

Assessment tools/IT not built on choice, but rather traditional provision of services

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Working with Your Agency: Partners for Success

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Working with Your Agency: Seeking Support and Making Change

Peer support and group trainings

Review of existing practices to identify ways to:

Increase opportunities for decision-making

Provide access to flexible/ participant-directed services

Collaborate with external agencies (i.e. Independent Living Centers and other AAAs)

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Addressing External Resistance

Potential sources:

Medical staff (i.e. hospitals and nursing homes)

Discharge planners

Vendor agencies (i.e. personal and home care vendors)

Personal care (or other) providers

Potential barriers:

Assumptions about consumer’s abilities

Fear of loss of own role

Refusal of services

Scare tactics

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Addressing External Resistance (continued)

Recognize advocacy will be needed

Inform individuals about the principles of participant direction

Partner with community organizations who support participant direction to send a unified message

Collaborate with independent living centers who can support individuals as advocates

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Addressing External Resistance (continued)

Use data (i.e. Cash & Counseling) pertaining to access, abuse and neglect, and quality of life

Inform people of the representative option and additional supports

Conduct provider trainings to educate providers on the principles of participant direction

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Medical Resistance

Some medical professionals may strongly resist participant direction (some may not)

The Nurse Practice Act specifically refers to when nurses delegate responsibility, not individuals

The nurse’s role in participant direction shifts from deciding a care plan to recommending a care plan

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Medical Resistance (continued)

The participant is the expert in receiving personal care, medical professionals are experts in providing medical care

We all have a right to make informed decisions about our medical care, even those requiring assistance

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Things to Keep in Mind

The broad definition and philosophy of consumer direction (not just specific models)

The basic assumptions that underlie participant direction

The continuum of participant needs, recognizing that people may take on different levels of control and require different levels of support

The change in roles of the participant, family, staff, and other agencies

Beneficial skills of staff to support participant direction

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Thank you! Please complete the evaluation.

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