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Greetings and Introductions
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Shifting the Paradigm: Increasing Opportunities for Choice and - - PowerPoint PPT Presentation
Shifting the Paradigm: Increasing Opportunities for Choice and - - PowerPoint PPT Presentation
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 2 Acknowledgements A collaborative
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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.
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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
- ne 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
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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
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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
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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
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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.
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McInnis-Dittrich, Simone, and Mahoney (April, 2006)
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Commonly Used Terms
Care Advisor: Individual who works with the participant in designing their plan. The person the participant goes to with questions.
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McInnis-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”
- ften indicates the ability
- f 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)
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Requirements for Participant Direction
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MACROW Networks, adapted from Keilson, 2007
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Does this process go against the grain of what you already know (or have done in the past)?
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Modified from Keilson, 2007
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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
- f all: Choice”
Brochure, Little America Hotels and Resorts
Keilson, 2007
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The role of the aging network staff needs to be flexible and mirror the needs
- f the individual
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Beneficial Skills of Staff
Listener Listen… listen, and listen some more Communicator Provides 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
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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.
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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
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McInnis-Dittrich, Simone, and Mahoney (April, 2006)
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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)
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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 Averse Averse Risk Risk Seeker Seeker
McInnis-Dittrich, Simone, and Mahoney (April, 2006)
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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)
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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”
- f the need to do the
right thing as the professional sees it
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McInnis-Dittrich, Simone, and Mahoney (April, 2006)
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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
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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)
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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)
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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
- ther informal networks?
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McInnis-Dittrich, Simone, and Mahoney (April, 2006)
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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)
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Points to Remember…
Decisions are not purely made based on intellectual knowledge alone
We all make decisions based on desired
- utcomes 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”
- f 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)
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McInnis-Dittrich, Simone, and Mahoney (April, 2006)
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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)
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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)
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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
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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)
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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)
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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)
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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?
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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
- n 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
- ther agencies
Beneficial skills of staff to support participant direction
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Thank you! Please complete the evaluation.
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