Person-Centered Services and Supports:
Ensuring the Opportunity for Self-Determination
and a High Quality of Life for ALL Individuals
with Disabilities:
Brian Abery, Ph.D.
University of Minnesota
Institute on Community Integration
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What is the Connection
Person-Centered Supports
Quality
of life
Self-Determination
Functions of the Quality of Life
Construct?
• Sensitizing notion: gives society a sense of
reference and guidance from the individual’s
perspective, focusing on the person and the
individual’s environment;
• Social construct used as an overriding
principle to enhance an individual’s well-being
and facilitate collaboration for change at the
societal level; and
• Unifying theme that provides us with a common
language and a systematic framework to apply
quality of life concepts and principles.
Core Q of L Domains
• Desired states of:
– Emotional well-being
– Interpersonal relations,
– Material well-being,
– Personal development,
– Physical well-being,
– Social inclusion,
– Self-determination and rights.
Differences in Q of L
• Q of L differs for the individual
– Over time and
– Between individuals.
• A good “quality of life’’ may
mean different things to different
people.
Q of L & Self-Determination
• Q of L relates to:
– Decisions/choices by individuals and,
wherever possible,
– Personal control over their:
• Activities
• Programs & Interventions, and
• Environments.
• Acceptance of the right to self-determination
on the part of consumers has major
implications for self-image, motivation, selfexpression and control, as well as health.
What is Q of L Not About?
• Keeping people safe at all costs
Without the chance to take a risk there is
little dignity to life.
Irving Martin, self-advocate
What is Self-Determination?
• The basic rights of all human beings include their
freedom, equality, and power to execute their will…
• These rights are distinguishable from people
themselves and can be given up to others, but only
under conditions in which the individual gives their
consent…
• Situations in which basic rights are never granted or
when a person is subjected to the arbitrary and/or
absolute will of another are a form of slavery
Locke, John (1690) Two Treatises of Government
What is Self-Determination?
• The attitudes, abilities, and knowledge to set goals for
oneself and effectively work toward the achievement of
those goals.
Michael Ward, Ph.D.
• Self-determination is believing in yourself, making your
own decisions, and being responsible for them
High School Student, North Dakota
• Power, choice, and most important, the right to chase
our dreams...The chance to direct our lives the way we
want to, not the way others expect us to...
Irving Martin, Self-Advocate, Minnesota
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Operational Definitions
• Self-determination refers to
individuals exercising the degree of
control over their lives that they
desire within those areas of life that
are important to them.
Abery & Stancliffe (2003)
What is Self-Determination NOT?
• Self-Determination is not:
– Equivalent to one’s level of personal
control
– An “either/or” experience
– Parent’s, family members, or other
substitute decision-makers exercising
control over the life of a person with a
disability
Common Misconceptions about
Self-Determination
• Self-determination implies the independent
performance of behaviors (either/or argument)
• Self-determination is primarily about making
choices
• There are a specific set of skills, knowledge, and
attitudes/beliefs NECESSARY for selfdetermination
• Self-determination is a program you can
implement
– e.g., person-centered support planning,
independent budgets
Self-Determination & Personal Control
How are they are different?
• Shared Control
– Most individuals do not desire to have complete control
but wish to share it in some areas with trusted others.
• Ceding Control to Others
– In some areas of life a person may not particularly value
having control and voluntarily cede it to others.
– In other areas they may voluntarily cede control because
they do not have the skills to make informed decisions
• Individual Differences/Change Across Time
– Areas of life over which personal control is valued are
different for each person and typically change over time.
What is Self-Determination?
• Control over day-to-day decisions
– what to wear
– what to eat
– what time to go to bed
• Control over long-term decisions
– where and with whom to live
– where to work
– What type of work to do
What is Self-Determination?
• Self-determination is about
supporting people to make the
things that they want to
happen…actually happen in their
lives.
Tripartite Model of Self-Determination
Self-Determination
Desired
Degree
of Control
Importance
Exercise of Control
Changes over
TIME
Self-Determination: An Ecological Process
Macrosystem
SELF-DETERMINATION
Exosystem
Mesosystem
Mesosystem
Person
Self-Determination
Competencies
•Skills
• Attitudes/Beliefs
• Knowledge
Residental Serv.
Microsystem
Mesosystem
Microsystem
School/Work
Microsystem
Exosystem
Changes over Time
Exosystem
Microsystem
Importance
Peer Group
Mesosystem
Exosystem
Family
Exercise of
Control
Desired
Degree
of Control
Missing Factor: The Environment
• Most agree that many (though not all) people
with disabilities living in the community do not
experience a high quality of life.
• Reasons are multifaceted:
− Some residential environments support selfdetermination and a high Q of L.
− Many do not as they are full of barriers to an
individual living the type of life that they desire.
− Rules and regulations, often design to “protect”
persons with disabilities often serve as barriers to a
high Q of L and self-determination
What We Know
• To date, interventions designed to support a
higher Q of L and greater self-determination for
persons with disabilities have primarily been
focused on teaching persons with disabilities
skills…requiring/asking them to change.
• Dangers related to this approach…
– Some people may not be able to acquire the
capacities being taught…does this mean they are not
capable of self-determination and a higher Q of L?
What We Know
• Previous research suggests a number of
ecological characteristics related to a
high Q of L and self-determination
including:
–
–
–
–
–
Organizational climate
Agency policies & regulations,
The knowledge, skills, and attitudes/beliefs of DSPs
The behaviors of DSPs
The personal capacities and behaviors of supervisory
staff and organizational leadership
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Mediating Factors
• Social Capital: Network of social ties, supports,
relationships, affiliations, and social-behavioral reciprocity
that support one to achieve desired outcomes
– Bonding: Affiliating with others who share common
characteristics
– Bridging: Affiliating with others who have different
characteristics
• Social Inclusion: Societal acceptance of persons with
disabilities in school, work, and community contexts.
– Degree of inclusion has an impact on Q of L and
opportunities for self-determination
Mediating Factors
• Access to and effective implementation of
person-centered services and supports
– Most residential and employment support services are
not person-centered or individualized but…
• Institutionalized
– ISP more, often than not, is an acronym for an
institutionalized service/support plan rather than
an individualized/person-centered plan
Person Centered Supports
Smull, Bourne, & Sanderson (2009)
What has Gone Wrong?
• Most efforts to support an
enhanced Q of L and greater SD
have focused almost exclusively on
facilitating changes at level 1 –
person centered
practices
Shift in Goals:
A Need for Systems Change
• GOAL: Create person centered
systems that support person
directed services.
– Changes in rules and practice should be driven by
learning what is and is not working for individuals.
– Using a small set of value-based skills at all levels of
the system will drive change throughout the system.
– Using these skills in conjunction with selected quality
management and organizational development tools
will improve quality of life and increase organizational
effectiveness and efficiency.
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Need to Refocus our Efforts
Training in person-centered planning
Training in person centered thinking
Training + Development & support of coaches
Training coaches + sustained
engagement of organizational leadership
Training, coaches, organizational leadership +
sustained engagement of system leadership
Smull et al, (2009)
Why Training Alone Fails to Work
• Training, no matter how good, is the
classic “rock in the pond” (Smull, 2006).
– The rock, tossed in the pond makes
waves.
– The bigger the rock, the bigger the
waves.
– But no matter how big the rock, the
pond eventually goes still again.
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Why Training Alone Fails to Work
• Most training approaches result in water
quickly returning to an undisturbed state.
• “Training in person-centered plan writing,
by itself, results in better paper, not
better lives.”
Smull, Bourne & Sanderson 2009
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Need for Systems Change
– Goal is to have the person-centered thinking
used in everyday work
• At ALL levels of the organization & system
– Only in this manner will person-centered
plans
person-centered services and
supports
serve as the basis of the day-to
day, moment-to-moment interactions
greater self-determination and a higher
quality of life.
Need for Systems Change
• Strongest predictor of success is the
degree to which leadership engages in
the effort.
– Management & Leadership needs to:
• Embrace person centered thinking
• Help determine what is and isn’t working and
• Share responsibility for achieving the vision of
delivering person-centered service on a day-today, moment-to-moment basis
We’re All in this Together
• All persons within the system from
– DSPs
– Supervisors
– Upper level management
– Board members
– County and state managers/leaders
need to learn what is working and not working both within
a specific organization and the system as a whole as far
as applying person centered thinking.
– Senior management needs to hear what DSPs and
supervisors have learned and then act on the learning.
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We’re All in this Together
• System/Organizational leaders will
typically discover that:
– Though there are many changes that they
can make at an organization level…
– Some of what is not working reflects the
need for system change.
– Changes are needed in the system rules,
practices, and structures.
We’re All in this Together
• Currently all too much of what goes on in
the delivery of supports to persons with
IDD is about:
– Protecting and minimizing liability rather than
enhancing lives
– EXAMPLE: Protection plans
• Introduced to protect persons with IDD
• Today more often serve to eliminate persons with
disabilities experiencing ANY level of risk thereby
protecting support organizations
We’re All in this Together
• Current state of affairs not just fault
of support organizations, but
rather…
– A reaction to many of the current rules
and regulations by which they are
required to abide.
– Many of which fall under what Smull &
Associates would label as “stupid
stuff.”
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We’re All in this Together
• Efforts to develop person-centered
systems require system leaders
and managers to actively engage in
and apply the same personcentered thinking in their work that
supervisors and DSPs are applying.
We’re All in this Together
• The degree of engagement from
leadership is the strongest predictor
of success
– Not just leadership within provider
organizations
– County and State must be involved.
From Individual to…
Systems Change
Smull, Bourne & Sanderson 2009
What Will it Take?
• Capacity:
– The discrete characteristics that enable
a system/organization to change in the
desired direction (Hatch, 2009)
• Four components:
– Human Capital
– Social Capital
– Program Coherence
– Resources
Human Capital
• Those personal capacities
possessed by members of the
organization:
– Knowledge
– Skills
– Commitment
– Disposition
– Other abilities
Social Capital
• Closely linked to human capital
• Component of capacity inherent in the
relationships between and among:
– Members of an organization
– Members of other organizations with whom
they work
Social Capital
• Four elements:
–
–
–
–
Mutual understanding
Development of collective competence
Fostering of care and concern
Support for the alignment of mutual goals
Gameron, Gunther & Williams, (2005)
• Stimulated by:
– Trust
– Reciprocity
– Open communication and flow of information
Program Coherence
• The degree to which staff (at all levels)
and resources within an organization are
coordinated and integrated via a
common framework (Newmann, et a., 2001)
– Organization embraces a common framework for the
delivery of support services.
– Working conditions support incorporation of personcentered thinking into everyday practice.
– Sufficient time and resources are devoted by the
organization to fully implement the person-centered
thinking and practices.
Resources
• The physical and organizational
tools that an organization has at its
disposal to make its improvement
goals a reality (Newmann, et al, 2001)
– Adequate staffing levels
– Staff stability
– Professional development
opportunities