Transcript Person Centered Approaches to a Meaningful and Enviable Life

…Overcoming Life’s Obstacles
Universal LifeStiles, L.L.C.
Person Centered Approaches to
a Meaningful and Enviable Life
Today
Today is a
gift…..
that is
why it is
called the
PRESENT.
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An Obvious Correlation
“What you do today
will determine
tomorrow.”
Mahatma Gandhi
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Valued Experiences
Sharing
Ordinary
Places
Making
Choices
Contributing
Respect
Growing In
Relationships
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History
The history of their
lives becomes their
future.
Cheryl Wacker
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Quality of Life Construct
• Sensitizing Notions: 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: provides us with
a common language and systematic
framework to apply quality of life
concepts and principles
University of Minnesota Driven to Discover
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Fatalism…
… a doctrine that events are
fixed in advance so that human
beings are powerless to fix them
(Webster Dictionary)
There is a prevailing
belief that individuals
with significant
disabilities cannot
have a quality life!
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The Law of Leaking
When benchmarks are achieved and
goals are realized to improve quality
of life, beware of
‘leaking and straying.’”.
This law states:
Improvements in
quality of life revert to
their original status unless vigilance
and directed efforts are exercised.
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Guardian’s Expectations…
…can serve as a self- fulfilling prophecy
either negative or positive!
Their expectations should not be
determined by a diagnosis!
It is essential that
guardians dream
about opportunities
for their charge’s
enhanced quality of
life.
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The Future
“Plan for the future
because that’s where
you are
going to
spend the
rest of
your life.”
Mark Twain
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You’re the Author
When writing the
story of your life,
don’t let anyone
else hold the
pen.
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The Future Is Now
How can people have a future - when
they don’t have a “present”?
Being an active participant in all aspects
of one’s life Forming valued relationships
Having things of value
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A Change Of Focus
Futures Planning is bankrupt
when it focuses on what you
want in your future versus
what contributions
you wish to make…
Why are you
on this earth?
John O'Brien, PhD.
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Worthwhile
Only a life
lived for
others is a
life
worthwhile!
Albert Einstein
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Life
IT’S NOT THE SIZE OF THE
SPLASH BUT THE JOY YOU
FIND ALONG THE WAY
NON
SEQUITUR
by WILEY
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Later
There is
no future
without a
“present!”
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THE HOPE FACTOR
J12
J10
J8
Realized
Realized
J6
J4
Realized
Realized
J2
J0
Wake Up
TIME
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Sleep
Core Q of L Domains
Desired states of:
Emotional well-being
Physical well being
Interpersonal
relationships
Material well being
Personal development
Social inclusion
Self-determination
and rights
University of Minnesota, Driven to Discover
Universal Enhancement
Looking Forward
When you get up each morning
what do you
look forward to?
Watching your child take a
first step
Going to dinner with a close
friend
Buying a birthday present
for your partner
Reaching your goal at a
Weight Watchers meeting
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Looking Forward (cont’d)
Making reservations for a
long needed vacation
Tending to the plants
in your garden
Reading two more
chapters of a book by
your favorite author
What do the men and
women you support look
forward to each morning
when they wake up?
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The Foundation of Happiness
Happiness is the foundation in realizing a
preferred future. Support people in realizing
happiness through
Universal strategies:
Altruism
Relationships
Exercises
Pets
Unfortunately these
life experiences are
lacking in the lives
of many whom
we support!
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Intimacy
What would your life be like
without an intimate relationship?
Intimate: marked by close
acquaintance, cherished, dearest,
devoted, warm
friendship,
relating to or
indicative of
one’s deepest
nature. Wikipedia
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A Perspective On Quality
Person
The process always starts in the
center, with the person.
Program
The quality of supports for
people who rely on human
services depends on program
design and delivery.
System
Improving a program's ability to
provide quality services and
supports is shaped by the
organization of the service
system.
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Quality On Three Levels
Person
Program
Program
System
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What We Know
Research suggests a number of ecological characteristics
relate to a high quality of life and self-determination in
living arrangements:
Organizational climate
Agency policies and regulations
The knowledge, skills and attitudes/beliefs of DSPs
The behavior of DSPs
The personal capacities and behaviors of supervisory staff
and organizational leadership
University of Minnesota
Driven to Discover
Universal Enhancement
Shifting to A New Paradigm
What is intellectual
disability?
Trait
Interaction between
person and environments
Deficit Model
Functional
interpretation and assessment
Statistic
Functional
interaction between
environments
Universal Enhancement
Shifting To A New Paradigm
(cont’d.)
Resulting changes in
services:
Ineffectual teaching
Quality
teaching
No schools
Separate schools
Integrated schools
Residential segregation
Neighborhoods
Custodial care
Teaching skills
Institutions
Group homes
Supported Living
Universal Enhancement
Shifting To A New Paradigm (cont’d.)
Changing the interaction:
Control and coercion
Empowerment
Dependence
Self-definition,
personal autonomy,
choice
Being a burden
A person with
challenges
Eternal child;
Transition to
helpless
adult status
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Shifting To A New Paradigm (cont’d.)
Changing the interaction (cont’d.):
Fear of person
Understanding
of full
humanness
Familial risk
Acceptance
Affirmation and support
Denial of
Access to
health care
health
care
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Shifting To A New Paradigm (cont’d.)
Changing the interaction (cont’d.):
Idleness
Adult Day Program
Segregated workshop
Jobs
Job discrimination
Antidiscrimination
Supported
employment
IQ=Restrictiveness
Individualized supports
Source: Luckasson, R., Spitalnik, D.M. (1993). Political and programmatic shifts of the 1992 AAMR definition
In V.J. Bradley, J.W. Asbough, & B. Blaney, (Eds.). Creating individual supports for people with developmental
disabilities: A mandate for change at many levels. Baltimore: Paul H. Brookes. (In progress).
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Childhood Experiences
Rights of passage for all
children:
•Selling Girl Scout cookies
•Taking music lessons
•Running through the sprinkler
•Receiving an allowance
•Roller skating
•Packing a school lunch
•Making things for
grandma
•Learning to whistle
•Riding your bike
•Pulling a wagon
Universal Enhancement
Childhood Experiences (cont’d)
•Playing Hide and Seek
•Listening to bedtime
stories
•Attending a story hour
•Blowing bubbles
•Taking a bubble bath
•Riding a pony
•Having a sleep-over
•Staying up really late
•Eating Count Chocula
•Flying a kite
Universal Enhancement
Childhood Experiences (cont’d)
•Having a squirt gun fight
•Baking cookies
•Playing croquet
•Playing in a sandbox
•Trick or Treating
•Playing in
Little League
•Dance recitals
•Playing Hopscotch
•Selling lemonade
•Making mud pies
Universal Enhancement
Preferred Future
Identifying
and seeking
a preferred
future is the
essence of
a quality life.
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Take Action!
the
Thegrass
grassisisn’t
greener
always
where
greener
you water
on
it!
the other side of the fence…….
Anonymous
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Transition
Tran si tion: 1. Passage from one form,
state, style, or place to another
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Evolution of the Planning Process
Model
Team
Medical/Custodial
Intra Disciplinary
Plan
ITP
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Role
Patient
Focus
Physical
Infirmity
Intra-Disciplinary
Clinical staff defend their territory against
intruders.
Each discipline has a “professional bag of tricks”,
guarded by a discipline representative.
Those not holding membership are not allowed to
view the bags 'contents.
PT
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OT
MSW
Intra-Disciplinary Roles
Psychologist
Special Educator
Speech & Language
Clinician
Dietician
Nursing
Recreational
Therapist
Social Worker
Occupational
Therapist
Physical
Therapist
The individual is dissected - each discipline
exacts their part of the person.
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Puppets
DSP
Job Coach
Guardian
Language Clinician
In the name of professionalism, we pull the strings of those
we support – impairing: spontaneity, self-determination and
individualization.
The role of the professional is to relinquish control
and empower the individual!
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Evolution of the Planning Process
Model
Team
Medical/Custodial
Intra Disciplinary
Developmental
Inter Disciplinary
Plan
ITP
IPP
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Role
Patient
Resident
Focus
Physical
Infirmity
Skill
Acquisition
Interdisciplinary
Each discipline completes their
assessment, objectives and
plans sharing them with other
disciplines.
Through a process of
consensus, the
plans evolve into
an integrated
planning document.
Universal Enhancement
Evolution of the Planning Process
Model
Team
Medical/Custodial
Intra Disciplinary
Developmental
Inter Disciplinary
Habilitative
Trans Disciplinary
Plan
ITP
IPP
IHP
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Role
Patient
Focus
Physical
Infirmity
Resident
Skill
Acquisition
Client
Movement
to LRE
Trans-Disciplinary
If its not illegal, unethical or
immoral and the staff are
capable of providing the
required clinical services ----
DO IT!
Speech
MSW
OT
Psych.
PT
RN
Universal Enhancement
Let’s Celebrate
The spirit of a Person Centered Plan is more fully
realized when celebration is pervasive throughout
the process.
Unlike the ISP of IPP process where:
•horns don’t honk and bubbly doesn’t flow when
the person meets their tooth brushing objectives
•rounds of applause are not given for achieving the
objectives in bed making and hair combing
•there is no celebratory
dinner when the last two
steps in a ten-step task
analysis is achieved for
vacuuming.
Universal Enhancement
Let’s Celebrate (cont’d)
Celebration is inspired in the PCP
process when the focus person:
•saved enough money from their job to go on
a 4 day vacation
•invited their family over for dinner and
prepared the meal
•completed 100 hours of
volunteer service for three
organizations
•lost those last 25 pounds
•used the public bus to visit friends
These are cause for
celebration!
Universal Enhancement
Evolution of the Planning Process
Model
Team
Medical/Custodial
Intra Disciplinary
Developmental
Inter Disciplinary
Habilitative
Trans Disciplinary
Participatory/
Inclusionary
Non Disciplinary
Plan
ITP
IPP
Role
Patient
Focus
Physical
Infirmity
Resident
Skill
Acquisition
IHP
Client
Movement
to LRE
ISP
Consumer
Relations
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Community
Challenge
Valued
Experiences
Promote
interdependence
among people
Growing in
relationships
Few & restricted Community
relationships; few participation
memberships;
isolation &
loneliness; loss
of connections;
low personal
power
Discovering &
contributing
gifts,
capacities &
skills
Low level of
Supporting
contribution;
contribution
unrealistically low
expectations;
deteriorating
ability; physical
hurt
Limited voice;
Promoting
few options;
choice
no exit
Recognize &
develop all
human
resources
Protect integrity Making choices
by creatively
resolving
conflicts
Common
Experiences
Universal Enhancement
Accomplishment
Community
Challenge
Offer valued roles
to everyone by
confronting
limiting beliefs
and their
historical
consequences.
Give up
stereotypes.
Valued
Experiences
Being respected
& having the
dignity of a
valued social
role
Common
Experiences
Negative
reputation;
prejudiced,
inappropriate &
limited
responses from
other people;
negative,
self-fulfilling
prophecies
Include all people Sharing ordinary Being separated
places and
by location,
activities
activities,
schedule
Source: Personal Profile by O’Brien, John and Connie Lyle, Beth
Mount, Responsive Systems Associates
Universal Enhancement
Accomplishment
Encouraging
valued social
roles
Community
presence
Valued Experiences
Growing in
Relationships
Contributing
Making
Choices
Respect
Sharing
Ordinary
Places
Universal Enhancement
Get The Drift?
My individualized tailored supports help me
attain my personal outcomes:
•Going on vacation to Disney Land
•Having my own cell phone
•Spending more time with my girlfriend
•Getting a tattoo
I do not wish to be employed or volunteer. My
support staff cook my meals, clean my home,
do my grocery shopping and laundry.
These are my “entitlements” as detailed in my
Person Centered Plan.
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Get The Drift? (cont’d)
• I have no control with whom I reside.
• I have no input as to where I reside.
• I attend a day program where coloring , peg boards and
mall herding comprise my day.
• I am told what to eat by a dietician.
• I am treated like a child by my staff.
BUT
I have attained my Personal Outcomes!
Universal Enhancement
Person Centered Defined
Person Centered Planning (PCP) is
a set of approaches designed to
assist to plan their life and
supports.
It is used most
often
as a life
planning
model to
enable
individuals
with disabilities or otherwise
requiring support to increase their
personal self-determination and
improve their own independence.
Wikipedia
Universal Enhancement
Person Centered Defined (cont’d)
Person Centered Planning is an accepted
evidence based practice in many countries
and throughout the world.
PCP discovers and acts on what is
important to a person. It is a process for
continual listening and learning, focusing
on what is important to someone now and
in the future and acting on this in alliance
with family and friends.
Wikipedia
Universal Enhancement
Person Centered: Consider This
• The title “person-centered” is used because those
who developed it and used it shared a belief that
services tend to work in a “service-centered” way.
• The person-centered concept grew out of the
critique of the “facility-based services” approach
in the US which was central to the development of
“support approaches” in the US.
• Person-centered planning is designed specifically
to “empower” people, to directly support their
social inclusion, and to directly challenge their
devaluation.
• PCP isn’t one clearly defined process, but a range
of processes having a general philosophical
background, and aiming at similar outcomes.
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Person Centered: Consider This (cont’d)
• In contrast, traditional models of
planning have focused on the person’s
deficits and negative behaviors labeling
the person and creating a
disempowering mindset from the start.
• The process focuses on discovering the
person’s gifts, skills and capacities, and
on listening for what is really important
to the person (eg Snow, O’Brien,
Mount).
• PCP pursues social inclusion through
means such as community
participation, employment and
recreation.
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Driven vs. Centered
A debate, if not a controversy,
exists as to whether the plans
developed for people should
be person driven or person
centered.
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Driven vs. Centered (cont’d)
CENTERED:
An ongoing problem-solving process used to help
people with disabilities plan for their future. In
person centered planning, groups of people focus
on an individual and his/her vision of what they
would like to do in their future.
Universal Enhancement
Driven vs. Centered (cont’d)
DRIVEN:
An ongoing problem-solving process used to help
people with disabilities plan for their future. In person
driven planning, groups of people focus on an
individual while proactively guiding them in making
decisions regarding their future. The group supports
him/her to make informed consent decisions that
either realize the person’s vision and what they wish
to do in the future or provide options that assure their
overall well being.
Universal Enhancement
Whose Plan Is It?
A Person Centered Plan (PCP), that the focus person is
neither able to read or comprehend, serves to defile the
meaning and spirit of the PCP process.
It is vital that every effort be taken to utilize media and
craft the language so the document speaks to the focus
person.
The PCP outcomes can be
commutated through:
Videos
Photos
Audio recording
Pictographs (drawings)
Pictures from magazines
Simplified vocabulary
Slides
Use your imagination!
Universal Enhancement
Person Centered Challenges
A key obstacle to people
achieving better lives
has been the risk of an
averse culture that has
been prevalent in human
services for a variety of
reasons.
By changing PCP to fit
existing practices rather
than using it in its original
form, most or all of its
effects are lost.
Unless what is learned
about how the person
These principles are reliant wishes to live, and where
they wish to go in their lives
on mechanisms such as
is RECORDED and ACTED
individualized funding
UPON, any planning will
packages and the
organizational capacity to have been a waste of time
and more importantly a
design and deliver
betrayal of the person.
“support services”.
Universal Enhancement
PCP Tasks & Tools
Universal Enhancement
Who Makes The Decisions?
Person-centered change challenges
us to learn together with people.
From System-Centered
Toward Person-Centered
Professional controlProfessionals know best
Delegate work
to support
staff
Shared decisions
with person, family
and friends
Empower support
staff to make own
decisions
Universal Enhancement
Who Makes The Decisions?
(contd)
Rely on standardized
inter-disciplinary teams to
generate plans
Create personcentered teams to solve
problems over time
Organize efforts in
conference rooms for the
convenience of
professionals
Organize efforts in the
community to include
the person, family and
support staff
Take action to follow rules Reflect together as
and regulations
basis for setting
priorities
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Who Makes The Decisions?
(contd)
Spend lots of time
planning with
little time to take action
Spend lots of time
taking action, with
regular times to
reflect
Respond to need based
on job descriptions
Respond to people
based on shared
responsibility and
personal commitment
Create distance
through process
Who Is
In
Control?
Share struggle by
working together
Universal Enhancement
Q of L & Self-Determination
Quality of Life relates to choices/decisions made
by an individual with intellectual or other
developmental disabilities and, with assistance
as needed,
• has the ability and opportunity to exercise control
over services, supports and other assistance
• has the authority to control resources and obtain
needed services
• has the opportunity to participate in and contribute to
their communities
• has the support including financial, to advocate, develop
leadership skills, become trained as a self-advocate, and
participate in coalitions and policy-making
Acceptance of the right to self-determination on the part of
individuals has major implications for self-image, selfexpression, physical and mental health.
Taken in part from Paul Wehmeyer, Ph.D. NGSD &
University of MN Driven to Discover
Universal Enhancement
Selfdetermination
It Comes Together…
Exercise of
Control
…and changes over time!
Universal Enhancement
University of MN
Driven to Discover
Without the IDT
He was admitted to the “institution” at
the age of 6 – discharged at 51;
followed by 17 years living in a group
home.
He died at 68;
his death being the
one and only
significant event in
his life not voted
upon by an
interdisciplinary team.
Universal Enhancement
Shifting Paradigms
OLD
Continuum of care
Big vs.. small
debate
Active treatment
24/7
NEW
Inclusion/integration
is a starting point –
not the goal
Supported living
options
Functional supports
Universal Enhancement
A La Carte
“Let’s see, I’ll have the
OT on Monday, hold the
PT please. I would also
like the job coaching and
after my main course,
please bring me some
counseling.”
There is no need to provide a full menu,
if all people want is a la carte. …Derrick Dufresne
Universal Enhancement
Shifting Paradigms
OLD
Continuum of care
Big vs.. small
debate
NEW
Inclusion/integration
is a starting point –
not the goal
Supported living
options
Active treatment
24/7
Functional supports
Home-like settings
Real homes
Work-like activities
Real jobs
Move people into
services
Adapt support
services
Universal Enhancement
Shifting Paradigms (contd)
Professionals “Know
Best” and make
decisions
Look to Federal Gov’t.
Individualized planning
Provider driven
Empowerment of
individuals and
families
Support recipient
controlled
Person-centered
planning
Support recipient driven
Universal Enhancement
Conflict of Interest?
When the organization funded to provide supports
and services also holds responsibility to guide and
fashion the person centered plan, can an inherent
conflict of interest be avoided?
When the person centered plan conflicts with the
origination’s…
staffing patterns and schedules
physical plant design
financial investment in property
rates of reimbursement
mission, philosophy and values
availability of clinical services
…is there a conflict?
Universal Enhancement
Life in the Community
How can you assist the individual to
organize and coordinate his or her life
to achieve outcomes in a way that
others see the person as a “person”?
Universal Enhancement
The Three O’s
Options –a number of things from
which only one can be chosen
Opportunities – a favorable or
advantageous circumstance or
combination of circumstances
Optimism – a tendency to expect
the best possible outcome or
dwell on the most hopeful
aspects of a situation
The path to a
preferred future!
Universal Enhancement
Supporting Choices
• We do not want to live in
poverty.
• We want the right to a job in the
community.
• We want to work regardless of
ability.
• We want to work for fair wages.
• We want to be respected on the
job.
(from The Bill of Rights, People First
of Oregon, 1993)
Universal Enhancement
Person Centered Focus
Happiness cannot be pursued; it must ensue.
It is the very pursuit of happiness that thwarts happiness.
Victor Frankl, MD
Happiness is an emotion felt in the here and now; it
ultimately fades away. Meaning is enduring. It connects the
past to the present to the future.
Having purpose and meaning in life increases overall well
being and life satisfaction, improves mental and physical
health, enhances resilience and self-esteem, and decreases
the chances of depression.
Leading a happy life is associated with being a “taker” while
leading a meaningful life corresponds with being a “giver”.
Journal of Positive Psychology 2013
Universal Enhancement
Person Centered Focus
Happiness cannot be pursued; it must ensue.
It is the very pursuit of happiness that thwarts happiness.
Victor Frankl, MD
Happiness is an emotion felt in the here and now; it
ultimately fades away. Meaning is enduring. It connects the
past to the present to the future.
Having purpose and meaning in life increases overall well
being and life satisfaction, improves mental and physical
health, enhances resilience and self-esteem, and decreases
the chances of depression.
Leading a happy life is associated with being a “taker” while
leading a meaningful life corresponds with being a “giver”.
Journal of Positive Psychology 2013
Universal Enhancement
Your Futures Plan
As you dream about your future,
what outcomes do you hope to
realize in the next 5 years?
Check all that apply
Find a mate
Get a degree
Have a child
Lose weight
Quit smoking
Exercise daily
Buy a home
Get out of debt
Get a divorce
Move to______
Rehab my home
Quit drinking
Universal Enhancement
Their Futures Plan
What outcomes do those we support
hope to realize in the next 5 years?
Check all that apply:
Have my own bedroom
Choose my housemate
Choose where I live
Have a mate
Get a power chair
Make friends
Choose my support staff
Seizures controlled
Have a real job
Engage in consensual sex
Spend time with family
Control my behavior
If this were your life,
would you want this
future?
Universal Enhancement
Invest Wisely
Dollars spent on services and supports for
individuals with intellectual and other
developmental disabilities should not be viewed as
an expenditure but rather an investment.
This investment must have a good rate of return.
Will this investment result in the individual being:
Employed?
Healthy?
Safe?
Productive?
A contributor?
A friend?
Dollars being paid to an agency
that is unable or unwilling to
obtain a good retun on investment
should be deemed not worthy of
the investor's money.
Universal Enhancement
Meeting Needs
I’m sorry
When people
but that’s
not possible.
ask for things
that are not I would love
to have a
available,
bird.
“professionals”
determine the
request
inappropriate.
Universal Enhancement
Life Goals
Oh! Now I
get it!!
I have no:
job, money,
friends, hobbies,
hope……..
That’s why the objectives in my IPP are:
Tooth brushing
Making a bed
Packing my lunch
Using the vacuum cleaner
Doing my laundry
Universal Enhancement
Growing Old
When people with intellectual disabilities
become elderly and retire, what do they
fear will be lost? Their...
– Attractiveness
– Sexuality
– Financial security
– Friends
– Home
– Memory
One need not fear the loss of that
which they do not possess.
3/28/2016
Universal
Enhancement
Memories
Oh yes, I remember the
“good old days” when:
I laid on a terrazzo floor
for hours
I was given only 10-15
minutes to eat my meals
My family dropped me off
and never came back
I was put to bed at 7:30
PM whether I was tired
or not
I was seldom provided
the opportunity to go
outside
Oh yes, those were the
days!
Universal Enhancement
Wilma Darlene Kuhns
Not expected to live, she (Wilma) was placed
in the oven to keep warm until the priest
arrived.
Even as a newborn, she showed a
determination which would become a
hallmark of her life.
Her parents moved to Alliance in 1933 and
divorced soon after.
Universal Enhancement
Wilma Darlene Kuhns
…she took part in school plays and sang
despite suffering long periods of weakness, a
result of polio as a toddler.
After school, she and her friends would
walk down Box Butte Blvd to Thielle’s for
cherry Cokes and potato chips.
…while a sophomore, she had her first date
with Dean Kuhns, the man she would
marry.
Universal Enhancement
Wilma Darlene Kuhns
Married life was full of friends…
Wilma hosted card parties and bridal
showers for her friends and was a member
of the Beta Sigma Phi sorority.
…. a mother of four children, active leader
in Blue Birds and 4-H.
She was a very thoughtful and patient
mother who believed there was no greater
calling than raising her children.
Universal Enhancement
Wilma Darlene Kuhns
…many happy Thanksgiving dinners, 4th of
July fireworks…
1967, her husband became paralyzed in a
car accident.
With her trademark determination… they
became partners with their sons in Kuhns
Wholesale.
She also cared for other children in her
home and worked in the nursery at
[church].
Universal Enhancement
Wilma Darlene Kuhns
She knitted, sewed, crocheted, canned,
baked, gardened and always had a book
nearby.
She brought beauty and wonder into her
children’s lives…
Wilma was compassionate, generous, and
never gave up on anyone, especially herself.
In her last years, she continued to show her
determination as she struggled with the loss
of her independence due to crippling
osteoporosis.
Universal Enhancement
Destiny
Destiny is
not a matter
of chance,
it is a matter
of choice.
William Jennings Bryan
Universal Enhancement
Retirement - QOL
People with intellectual disabilities seldom
express enthusiasm for the opportunities of
self-indulgence which accompany
retirement.
Enjoying long visits with grandchildren
Playing golf with “buddies”
Nurturing the garden
Traveling frequently to scenic places
Spending time reminiscing
Reading all the works of a favorite author
For many people with
intellectual disabilities, there is
nothing to retire to or from!
Universal Enhancement
Institutional Dreams
What dreams are dreamt
by those who reside in
institutions?
Universal Enhancement
Dreams
The lack of
dreams
makes
each day
hard work!
Universal Enhancement
Futures Driven ISP’s
Futures Plan
To improve the quality of my
life, I would like to:
•Have more visits to
my mom’s home
•Volunteer at the Fire
Dept
•Get my own dog
•Be seizure free
Universal Enhancement
Futures Driven ISP’s (cont’d)
Individualized Support Plan
The Regulatory gods are not interested
in whether I have more visits to my
Mom’s house.
This will appease them:
Given three steps on a
riser, Bob will negotiate
the steps, utilizing a
cane, in a period of 45
seconds.
Universal Enhancement
Anecdotal notes
Futures Driven ISP’s (cont’d)
The aspirations, dreams
and preferences of people
must serve to drive the
ISP process. In meeting
the non-negotiable
requirements of the
“Regulatory Gods”, we
must first meet the “nonnegotiable” requirements
of those supported!
Universal Enhancement
Client Weekly Schedule
Name: Jerry
Date Established: 12/15/02
Universal Enhancement
A Futures Plan Comes to Life
Sunday
Monday
Tuesday
1
2
Wednesday
Thursday
3
Friday
4
5
8
9
10
11
Give blood at 6:30a Health
work: Red
Club
Cross blood 5:30p car oil
drive
change BP Oil
15
9:00a Easter
Seal fund
raising walk.
Meet at
Courthouse
16
17
Vacation day.
Work in garden;
plant annuals.
22
24
Vote before
Work, at
Edison Sch.
on Oak Dr.
29
30
Make no
Pay bills.
commitments.
Pick up dry
sleep in!
cleaning
18
25
6:30a Health Grocery
club
shopping
Meet Diane for
lunch-Subway
7
10:00a Take
cat to Vet.
Buy special
cat food
13
Call AAA for
Get hair cut
vacation
of So. Dakota after work
maps
Grocery shop
19
Grocery
shopping
Pick up paint
Write thank youchips for LR
letters for b.d.
23
Call kids in Ind.
& North Car.
12
6:30a Health
club.
Go antiquing
Pay bills
6
Get cash
at
ATM for
weekend
6:30p Dinner, Send sympathy6:30a Health Grocery
card to Carol. Club
shopping
Parents'
MY Birthday!
anniversary
Return library
books
Call kids in
Indiana
& North
Carolina
Saturday
14
Attend morning
services at
Synagogu
e
20
21
Blue Jean Day Visit Jean at St.
at work; $5
Joseph Hosp.
donation
Take pants to
tailor-alter .
26
27
Pick up 3
Videos after
work; Speed,
Jade, Thin
Red Line
28
Meet with
attorney re:
will.
Bob & Linda
for dinner
Life's everyday activities reflect the
realization of a preferred future.
.
Universal Enhancement
Measurement
Intelligence Quotient: The score
reveals the individual’s perceived
value. A quotient conveys the extent
of an individual’s right to be treated
like a “normal” person. Our success
in increasing the quotient purports a
diminishing of defect.
Universal Enhancement
Measurement (cont’d)
Skill Acquisition:
Conceived from
the premise that individuals with
intellectual disabilities must prove
themselves to have a reasonable life.
Through the acquisition of skills, the
individual validates his/her
worthiness to proceed to the next
“least restrictive environment”.
the focus of the measurement is
the acquisition of skills that are
neither valued or relevant to
achieve a quality of life.
Universal Enhancement
Objectives
Not everything that
counts can
be counted;
and not
everything
that is
counted
counts.
Albert Einstein
Universal Enhancement
Measurement (cont’d.)
Regulatory Standards: Emanating from
political, legal and fiscal concerns, typically
regulatory measurement is motivated by a
societal need to establish accountability and
to provide assurances of fiscal prudence.
Regulatory standards tend to be
ideologically paternalistic in nature structured to “protect the less fortunate”.
Community Participation: Measurement in
this particular domain tends to be
influenced by normative expectations. That
is, a “normal life” is one that can be
measured by trips to the library,
attendance at church, deposits at the bank,
or shopping trips. Measurement in this
domain embraces the importance of
“humans doing”.
Universal Enhancement
Measurement (cont’d.)
Production Rate: The American work ethic
is the driving force for this measurement.
Productivity in the work setting achieved by
people with intellectual disabilities is the
primary factor in determining the
individual’s emancipation from work activity
centers and sheltered employment. It is
through the individual’s ability to capture
(achieve) normative standards of production
that he/she becomes whole (fully
productive).
Relationships: People (others) and the roles
they fulfill in the lives of people with
intellectual disabilities is the subject of this
measurement.
Universal Enhancement
Measurement (cont’d.)
Relationships (cont’d):
People whose roles extend beyond that of
family or paid supports obtain the
relationships of preference. Neighbors, the
mail carrier, colleagues at work are all to be
counted.
Satisfaction: Soliciting from the individual or
their representative, an expression of their
feelings towards predetermined indicators of
quality comprises this measurement. Implicit
within this measurement is the elusive
concept of happiness.
What we measure affirms
what we value!
Universal Enhancement
Elements of Future Planning
Two things are needed in the futures
planning process…
A blank piece of
paper . . .
and an open
mind.
Universal Enhancement
Think Outside the Box
Supporting others in
realizing their preferred
future is a creative process
Universal Enhancement
Limiting Creative Behavior
Supporting others in realizing their
preferred futures, requires creativity.
Limiting factors:
Stress
Self doubt
Routines
Fear
Ego
Beliefs
Don’t give up—we must persist! Use
creative approaches to support
others in improving the quality of
their life.
Universal Enhancement
Anecdotal Notes
Why is it required that staff make
notations in the records of people
receiving support?
What does the note communicate
about the relationship of the staff
with the person who is the subject
of the note?
•What is the “value added”
benefit of the note?
•How will the note be used to
improve the person’s QOL?
Universal Enhancement
Anecdotal Notes (cont’d)
•What would be the result if the note was
not written?
•Is the note written in Universal Language?
•Is there a hidden or subtle message the staff
is trying to communicate unrelated to the
referenced individual?
•If the person who is the subject of the
note read it, would the staff feel
comfortable?
•How would the staff feel if
they were the subject of the
note?
Universal Enhancement
Anecdotal Notes (cont’d)
•Does the note merely imply that the person
was “compliant” (e.g. slept through the night,
participated in scheduled activities,
completed assigned chores)?
What is your organization’s
response to the above
questions?
What corrective action,
if any, needs to be taken
regarding the recording of
notes?
Universal Enhancement
Chronological Notes
12/26 Lucy had a good evening with no
problems-laid on sofa all evening and watched
TV.
12/27 Ate well today. A little bit on the lazy
side. She was good and stayed to herself.
Started her period.
12/28 Refused her medications, said they made
her dizzy and gave her headaches. She went to
bed early 5:00p.m. and was generally
compliant.
12/29 She was good this morning, followed
her schedule. She ate her breakfast
and performed her daily chores.
12/30 Lucy did all her programs
without prompting. She slept well
during the night and did not roam
the house.
Universal Enhancement
Chronological Notes (cont’d)
12/31 Lucy took her medications and is in
good mood. Ate all her dinner but refused
liquids.
01/01 Quiet today-no problem. She said she
was bored today because there was no work
to do at the workshop.
01/02 Slept well last night. She got herself
up this morning. She showered and got
dressed.
01/03 Lucy seems to be doing fine-ate
breakfast, did chores, and got ready
for work.
01/04 In a bad mood, refused to do
chores. Wanted to call boyfriendI explained that it was too late and
no calls can be made after 9 PM.
Universal Enhancement
Points To Ponder
We need to begin with an
understanding of what is required
for the pursuit of happiness.
Trap of current system--we
determine how people can be
safe before we look at what they
require to be happy. What
is the relationship between
safety & happiness?
Person centered planning
does not relieve us of the
obligation to address
issues of health & safety.
Universal Enhancement
Points to Ponder (cont’d)
Choice making is not a solitaire
activity; it evolves out of
discussion - both pros
and cons.
What most people
want is modest.
The desired outcome
is a life that makes
sense to the
individual.
Universal Enhancement
Points To Ponder (cont’d)
We have historically been more efficient in
providing people for services than services
for people.
The future is not designated by great events,
but by the small things people
do wherever they are. No
contribution is too small. Beth Mount
Futures planning is not better than
individual “habilitation” planning,
nor does it take the place of
traditional planning activities.
The results of the futures planning process
should be integrated as much as is
appropriate into the focus person’s ISP/IHP.
Universal Enhancement
Points To Ponder (cont’d)
How each person wants to live should
be consistent with how they are
living
We must learn how the person wants
to live through asking and listening
Planning for a meaningful
future does not result from
hierarchical structures
controlled by rational
argument among experts
who find pre-existing
answers by standard
examinations
Universal Enhancement
Points To Ponder (cont’d)
Personal futures planning helps the
professional to change from
the superior role of expert to a
more humble role as a partner
The primary focus of the Futures
Planning process is to negotiate
needed organizational
changes to remove
barriers that may
stand in the way
Universal Enhancement
Ensuring Success
A successfully implemented plan
includes the following criteria:
The people forming the plan have
shared appreciation of the focus
person’s abilities. With this, the
group can focus on opportunities in
the face of obstacles.
People who plan together
have a common understanding
of a future that is very
specific to the focus person
and their community.
Universal Enhancement
Ensuring Success (cont’d)
The group includes a “community
bridge-builder” -- a member of the
community or a paid person who
works at building connections to
the local community.
At least one key agency
involved is committed
to organizational
change. Management
is willing to make
significant changes
in response to these
findings.
Universal Enhancement
Ensuring Success (cont’d)
The focus person and a group of
people closely involved with
them, meet regularly to review
new strategies and make
commitments to act.
The group includes a strong
advocate or family member
who takes a leadership role
in continually representing
the interests of the
focus person.
Universal Enhancement
Ensuring Success (cont’d)
One or more members of the group
should help the focus person to
make connections with the
community.
Look outside of the group,
to family, friends,
neighbors and
community resources,
for connections by
which the focus person
can become more
involved within the
community.
It’s Never Too Early, It’s Never Too Late- Beth Mount
Universal Enhancement
Guiding Principles…
..for person-centered planning:
Individual choice
Personal Freedom
Self-Discovery
Personal Strengths
Respect for the Individual
Personal Success
Individual Satisfaction
Tailored Design
Universal Enhancement
Your Future
Universal Enhancement
Transition Is…
A concept to help parents and
students prepare for postschool life
A process to make
connections to achieve
long-range goals
A plan focusing on postschool outcomes which
results in accountability
by the school system
for the student’s
success
Universal Enhancement
Post School Outcomes
Education:
Community College or
University
Adult Education Classes/GED
Continuing Education Classes
Technical/Trade School
Vocational Training
Apprenticeship

Universal Enhancement
Post School Outcomes (cont’d)
Employment:
Competitive Employment
Supported Employment
Sheltered Workshop
Volunteering
Universal Enhancement
Post School Outcomes (cont’d)
Residential:
Independent Living
Supported Living
With Parents or
Relatives
Group Home
Universal Enhancement
Building Circles of Support
There are three keys to forming and
maintaining circles of support:
Focus on an individual to
generate a vision.
Encourage and allow the
focus person to develop his
or her own vision and work
with the person to achieve it.
Work with interested friends,
family and other individuals
who care about the focus
person.
Universal Enhancement
Planning Perspective
Universal Enhancement defines itself
from the person’s strengths and
interests.
Quality service results from a
person-centered perspective.
Consider the big picture and help the
person learn more and have
greater opportunities to
develop their interests.
This is the goal
of planning in
any environment.
Universal Enhancement
Plan Reminders
Be sure that the plan you develop
is realistic for the skills and
capabilities of the person and
the resources of the community.
Don't be trapped by
words and objectives
that have nothing
to do with living in
the community.
Keep in mind the
big picture for the
person at all times.
Universal Enhancement
Characteristics…
… of person-centered plans:
Focuses on individual choice and
control
Responsive to
questions
Completed by the
individual, staff
and family
members who
know the person
Significant issues
addressed
Universal Enhancement
Characteristics (cont’d)
Has clearly identified priorities
Is non-intrusive
Is person centered
Requires knowledge of
the person by all
providers of support
Incorporates all aspects
of a person's life
Focuses on relationships
and community ties
Universal Enhancement
Characteristics (cont’d)
Considers real life in the
community
Integrates
recommendations
that blend need
for support and
a full life
Uses
understandable
language
Universal Enhancement
Determining Priorities
Priority supports should be selected
from a range of options to reflect
the individual's full day:
Is there a behavior that limits the
individual's ability to make and
keep friends?
Can the individual improve in
their ability to care for
intimacy needs?
How can the individual increase
access to local community
resources?
Universal Enhancement
Determining Priorities (cont’d)
How can the individual increase
their ability to handle money?
How can the individual improve
their physical health?
How can the individual increase
their ability to make
choices and more fully
exercise rights?
What can the individual
do to increase their
opportunities to
make friends?
Universal Enhancement
Person-Centered Services
Who has the role of
assisting the person to
utilize a network of providers,
obtain appropriate services and
supports, learn, grow and
become part of their
community?
Do we need a Support
Coordinator?
Universal Enhancement