5/1/2014 qualityoflife wellness and wellbeing...
TRANSCRIPT
5/1/2014
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Wellness and
Quality of
Life
Dorothy M. Griffiths,
C.M., O.Ont, Ph.D.
Brock University, St. Catharines, ON CA
Some Key Elements of Wellness and
Quality of Life
• Wellbeing
• Emotional Wellbeing
• Lifelong learning
• Leisure pursuits
• Natural connections
• Empowerment and self-determination
• Social inclusion
• Self esteem
Element One is Wellbeing
Wellbeing=Integrity of physical
and mental health
HealthFitness
Nutrition
Freedom from disease
Mental WellnessFree from symptoms
Absence of undue stressors
Learning
from the
Masters:
Robert
Sovner &
Bill Gardner
Integrated Biopyschosocialinfluences on Dual Diagnosis
Holistic approach
Psychological
Biological
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The Human Genome ProjectThe Human Genome ProjectStory of JohnStory of John
• John was referred as a sexual problem-insertion of objects up his rectum, frotteurism, and what they called “aggressive hugging”, although this is less as he gets older. He also has engaged in some stripping of clothes.
I asked• How is his vision? his hearing? his skin? his sleep?
• Any seizures? Prolonged outbursts?
• Is he engaging, endearing, humorous and always wanting to please?
• Does he crave for attention and is he competitive with others over that attention?
• When he gets excited does he do a little upper body squeezing thing and facial grimacing?
• Does he have an unusual walk and a deep hoarse voice?
SMITHSMITH--MAGENIS SYNDROMEMAGENIS SYNDROME
Benefits of syndrome identification (Griffiths & Watson,
2004)
• Understand the reality of the individual
– The persons strengths and skills– Possible medical vulnerabilities– Associated mental health risks or
resiliency
• Leads to increased support for families, care-providers and the individual
• Assists in communication between professionals
• Allows us to learn more about the syndrome and it’s biopsychosocial influences
MEDICAL ISSUES
• Angelman
• Down
• Fragile x
• PKU
• Prader Willi
• Rett
• Smith Magenis
• Seizures, sleep and scoliosis
• Congenital heart, hypothroidism, hearing and vision problems, Alzheimer’s
• Mitral Valve prolapse
• Congenital heart defect, seizure
• Diabetes mellitus, hypertension, sleep
• Seizures, sleep, scoliosis
• Hirschsrunge’s, hearing loss, cardiac defect, liver disease, low cholesterol, pulmonary insufficiency, vision, peripheral neuropathy, cardiac, seizures etc.
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• Persons with Fragile X are inclined to experience extreme anxiety problems
• Dementia in persons with Down Syndrome
• Sleep disturbance is increased in many syndromes
Mental Health IssuesBiomedical or behavioral models
The wrong question?
• Common behaviors
• Biomedical factors and influence on behaviour
• Psychological vulnerabilities
• Learning styles and implications to task or
avoidance of tasks
• Sensitivities to social/environmental situations
been evaluated and changes incorporated?
• Strengths and challenges associated with the
syndrome
• Syndromic implications for preventative or
proactive approaches
• Functional replacements to help to ease
functioning or distress
• Consequences that would be best to use or
avoid
• Dissemination to all concerned
– (Kerry Boyd, Kristin Baker, Emily Moxey, Dalena Mustillo, Sylvana
Yeung, Julie Krieger, Faten Matar, Linda Moroz, and Sarah Ruiter)
ELEMENT ONE WAS WELLBEING:
PHYSICAL AND MENTAL
Element Two
is Emotional Wellbeing
SPARK FOR MY PASSION
.
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.
APPROACHES
FOR TREATMENT OF
CHALLENGING BEHAVIORS
WERE TRANSFERRED FROM
THE FACILITIES TO
THE COMMUNITY
The 5 Yr Plan and Psychiatric Pinball
GroupHome
General Hospital
PsychiatricUnit
PoliceFamilyHome
Behavior Home
GroupHome 2
Facility wherehe began
Physical Effects of Environment
without Human Contact
An habilitatively
appropriate environment
• An environment can play a role in influencing
challenging behavior in individuals.
• So to, the environment can play a role in
developing appropriate and prosocial
behaviors.
STRUCTURE OF THE
HABILITATIVELY APPROPRIATE
ENVIRONMENTEstablished Expectations
Known contingencies
Strong social motivation
Choice
Positive social role, self-labels, self-concepts, and positive feelings about
oneself and one’s attributes
Skills of recognizing, labeling and expressing negative emotions
appropriately
Normalized
• Rhythm of the day
• Involvement
participation in all aspects of daily life
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Normalized
• Caution: Even community agencies
can be institutional
PHYSICAL CHARACTERISTICS OF
THE HABILITATIVE ENVIRONMENT
Proper Conditions- safe/clean/comfortable
Clustering
Space and Size
Stability
Opportunities for stimulation and learning
Promotes learning
• Learning skills to increase independence
• Learning skills to increase coping
• Learning skills to increase enjoyment
• Learning skills to increase relationship development
• Learning skills to increase personal safety and wellbeing
Provides
an Enriched
Lifestyle
• Activities
• Relationships- staff and
housemates, neighbors
• Inclusion and social
inclusion
Individualized • Choice
• Autonomy
• Unique differences and
preferences
Safety and Security
Studies show that people can relive and
re-experience social pain more easily than
physical pain and the emotions they feel
are more intense and painful.
Chen, Williams, Fitness, Newton, 2008
•Physical pain
is often short
lived
whereas social
pain
can last a life
time.
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AN HABILITATIVELY
ENVIRONMENT IS THE
FOUNDATION FOR A GOOD LIFEIfIfIfIf
rehabilitation is designed to return a person to a state of dignity;
ThenThenThenThen
habilitation should be designed to establish a state of dignity that the person may have never previously been afforded.
Your life:
• What makes your life good?
• What can interfere with your good life?
• What about your life makes you feel secure?
• What can challenge your security?
• What creates comfort and peace for you?
• What can disturb your comfort or peace?
• What makes you feel good about yourself?
• What can make you doubt yourself or feel less able?
Primary goals of Good Lives Model
• To create – a state of affairs,
– state of mind,
– activities,
– interactions
– personal characteristics,
– experiences
– relationships
• that the person would seek to create and for which achievement of them provides a good quality of life and personal wellness.
• (Adapted from J. Trenhaile: Summary of the good lives model.
http://dhs.sd.gov/ddc./Goodlivesmodel.pdf)
The Good Lives Model
adapted
To
General
Habilitation
With Persons with
Intellectual
Disabilities
• Habilitation: If rehabilitation is returning someone to a state of dignity; then habilitation is providing individuals the skills and life that provide dignity.
• For persons with intellectual disabilities we need to provide the dignity they may never have been afforded.
Trauma in the lives of persons with
intellectual disabilities:
The hidden mental health challenge
to wellbeing
TRAUMA AND THE ROLE OF THE
ENVIRONMENT IN TREATMENT
PATH OF
RETRAUMATIZATION
Abuse
Psychological Distress
Challenging
Behavior
Intrusive reactive
intervention
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PATH OF
RETRAUMATIZATION
ReAbuse
Psychological Distress
Challenging
Behavior
Intrusive reactive
intervention
Conflicting Approaches
• Traditional ABA response
to self-injury in a person
who has experienced
trauma, when the self-
injury is shown to have
the function of “seeking
attention”…..so do we
reduce attention to not
strengthen the SIB and
teach alternative ways to
get attention?
• Traditional Trauma
Approach for a person
seeking attention might
be to identify the
behavior as a need for
comfort and respond by
giving the person needed
attention at these times
of distress?
Reconciliation of Theories
• Create an habilitative environment where the individual is provided a consistently positive sanctuary (Bloom 2005) of safety (reducing all the motivational operations for stress and increasing elements of security) that is trauma informed or trauma sensitive and where attention is nonconditional, of ample frequency, duration, quality and intensity.
• Plus ensure the person has the skill to ask for and seek support when feeling distress and that the individuals in the environment are responsive to these requests
• Then if self-injury occurs, respond to the person to give comfort but ensure that the frequency, intensity, duration, and quality of that attention is different than and not as strong as the attention provided unconditionally or at other times when the behavior is not occurring.
PATH OF TRAUMA RESPONSIVE SETTING
Abuse
A state of emotional
Equilibrium
Challenging
Behavior
Attention to provide sufficient support
to move person to a safer place but
qualitatively different than that
when not in distress
Trauma Sensitive
Culture
PATH OF TRAUMA RESPONSIVE SETTING
Abuse
A state of emotional
Equilibrium
Challenging
Behavior
Attention to provide sufficient support
to move person to a safer place
Trauma Sensitive
Culture
A CONDUIT OFTEN TO ESTABLISHING THE A CONDUIT OFTEN TO ESTABLISHING THE A CONDUIT OFTEN TO ESTABLISHING THE A CONDUIT OFTEN TO ESTABLISHING THE
ENVIRONMENT TO MATCH EMOTIONAL ENVIRONMENT TO MATCH EMOTIONAL ENVIRONMENT TO MATCH EMOTIONAL ENVIRONMENT TO MATCH EMOTIONAL
NEEDS ESPECIALLY IN CASES OF SEVERE NEEDS ESPECIALLY IN CASES OF SEVERE NEEDS ESPECIALLY IN CASES OF SEVERE NEEDS ESPECIALLY IN CASES OF SEVERE
CHALLENGE LIKE TRAUMA IS IN POSITIVE CHALLENGE LIKE TRAUMA IS IN POSITIVE CHALLENGE LIKE TRAUMA IS IN POSITIVE CHALLENGE LIKE TRAUMA IS IN POSITIVE
BEHAVIORAL SUPPORTBEHAVIORAL SUPPORTBEHAVIORAL SUPPORTBEHAVIORAL SUPPORT
Laura Mullins (2012). Trauma-Informed Mental Health Service Delivery: Examining Parallel Processes in the School Treatment Program. Unpublished PhD thesis.
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Element Two
• Wellbeing
• Emotional Wellbeing Element Three is Lifelong Learning
The Lost Art of Teaching
• In the 1970s and the hay day of behavior management, the focus of much intervention was teaching.
• The art of teaching unfortunately has largely been lost in the field.
• Although teaching has shifted from just functional skill development (i.e., toileting etc.) to skills that allow the person to access growth opportunities and personal choice, current front lines staff have not been trained as teachers.
• Habilitative learning opportunities are not occurring because we as field have lost the skills.
What allows us to cope when things
are not right?
• Skill:
– Allows you to have enhanced freedoms and
opportunities
– Allows you control when things don’t go to your
liking by either altering reaction/coping skills to a
negative event or using our skills to change the
situation
SOCIAL SKILLS THAT GENERALIZE
• Select relevant behaviors• Use participants that have
common social networks• Do not use participants that
have the same needs• Train in the natural
environment• Train social skillfulness not
just discrete social skills• Apply multiple examples• Reinforce the new skill and tie
it in to the natural occurring reinforcements
» ( adapted from Stokes and Baer, 1977)
Griffiths, Feldman, & Tough, 1997
Outcomes (Accreditation Ontario, 2000)
• Choice of personal goals, where and with whom they live, where they work, their daily routines, services with whom they share personal information, of access to intimate relationships.
• Satisfaction with services and personal life and the realization of their personal goals.
• Access to friends and natural connections.
• Inclusion in use of their environment, participation, interaction, integration, and social roles in the community.
• Human Rights issues such as respect, fair treatment, the exercise of rights, freedom from abuse, health, safety, and the experience of continuity and security.
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• The goals of
therapy should
be more than
the reduction of
problem
behavior.0
5
10
15
20
25
30
1stQtr
3rdQtr
Aggression
SIB
Increase Personally and Socially
Valued Outcomes
• Outcomes of value should also reflect
• A) increase in skills and self control, &
• B) improved quality of life now afforded the individual
0
5
10
15
20
25
30
1stQtr
2ndQtr
3rdQtr
4thQtr
Aggression
SIB
Communication
Socialopportunities
Feldman, M., Condillac,
R.A., Tough, S., Hunt, S.,
& Griffiths, D. (2002).
Effectiveness of
community positive
behavioral intervention
for persons with
developmental
disabilities and severe
behavior disorders.
Behavior Therapy, 33 (3),
377-399.
Element Three
• Wellbeing
• Emotional Wellbeing
• Lifelong learning
Element Four is Leisure Pursuits
Element Four
• Wellbeing
• Emotional Wellbeing
• Lifelong learning
• Leisure pursuits
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Element Five is Natural Connections
Harry
Harlow
IMPORTANCE OF PEER RELATIONSHIPS
MOTHERS
PEERS
MOTHERS AND
PEERS
Wave
Hand Shake
Far Away Hug
Close Hug
Self
StrangersProfessionals
Walker Hirsch & Champagne, Circles.
Element Six
• Wellbeing
• Emotional Wellbeing
• Lifelong learning
• Leisure pursuits
• Natural connections
Element Six
Empowerment
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• Emerging Practice is based on both solid
science and respect for
philosophical/humanitarian
perspectives.
• Recognition of rights.
• Increased focus on self-advocacy, setting personal goals, making life choices, and assert themselves in time of disempowerment.
• A culture of respect for the rights of all and an ownership of the responsibility that is assumed in the exercise of those rights.
• 3Rs-rights, respect, responsibiity
Empowerment
UN Convention on the Rights of Persons with
Disabilities (2006)
• A Basic Principle is the respect for inherent dignity, individual autonomy including the freedom to make one’s own choices,
and independence of persons (Article 3)
Self Determination
• “Refers to the attitudes and abilities required
to act as the primary causal agent in one’s life
and make choices regarding one’s actions free
from undue external influence or
interference.” (Wehmeyer, 1992, pp. 305)
Rise of Self-Determination
History behind the rise of self-determination for persons with intellectual
disabilities:
Wave 1: Professionalism
Wave 2: The Parent Movement
Wave 3: Self- advocacy
• Traditionally planning – orchestrated around government initiatives and agency planning
– often does not take into account individual differences and preferences &
– can lead to a decreased quality of life and can often represent a vulnerability for emotional and behavioral challenges
Traditional Planning
Directed by the Person
Involves significant
others
Addresses individual goals and
preferences
Provides supports to meet goals
Individual Centered Planning
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Greatest changes in outcomes
Outcome Baseline Follow-up
Choose where to work
20.7 44.8
Have friends 15.5 37.9
Have intimate relationships
32.8 58.6
Decide when to share information
51.7 79.3
Live in integrated environments
8.6 32.8
Person centred plans vs. behavioral
plans
Rights vs. Risks
and
Responsibilities
Element Six
• Wellbeing
• Emotional Wellbeing
• Lifelong learning
• Leisure pursuits
• Natural connections
• Empowerment
Element Seven is
SOCIAL INCLUSION
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9179 76 72
32 32 2720 16
6
820
2021
3746
27 4463
66
FIGURE 9: PERCENTAGE BY FREQUENCY OF COMMUNITY INCLUSION
IN VARIOUS ACTIVITIESFrequently Sometimes
Agency Survey Q 43. Rate how often the individual engages in the following (list given).
Griffiths, Owen & Condillac, 2010
Not just about being in the community but part
of the community
Element Seven
• Wellbeing
• Emotional Wellbeing
• Lifelong learning
• Leisure pursuits
• Natural connections
• Empowerment
• Social Inclusion
Element Eight is
Self-Esteem
PERSONAL ACHIEVEMENTSElement Eight
• Wellbeing
• Emotional Wellbeing
• Lifelong learning
• Leisure pursuits
• Natural connections
• Empowerment
• Social Inclusion
• Self Esteem
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Elements of Life Quality
Wellbeing and health
Emotional wellbeing
Lifelong learning
Leisure pursuits
Natural connections
Empowerment
Social inclusion
Self esteem ……….these together spell
WELLNESS!!!WELLNESS!!!WELLNESS!!!WELLNESS!!!
Key ReferencesAccreditation Ontario (2000). Enhancing the rights and personal freedoms of people with disabilities. Toronto: Author
Agnew, S., Bishop, C., Gosse, L., Stoner, K., Vyrostko, B., Terreberry, T., Tarulli, D., Tardif-Williams, C.,
Bloom, S. L. (1994). The Sanctuary Model: Developing generic inpatient programs for the treatment of psychological trauma. In M. B.
Williams, J. F. Sommer & C. T. Westport (Eds.), Handbook of Post-Traumatic Therapy: A Practical Guide to Intervention, Treatment, and
Research. Westport, CN: Greenwood Publishing. Griffiths, D., Feldman, M., & Owen, F. (2010). Rights, respect and responsibility: Rights in
everyday life. Welland, ON: Community Living Welland Pelham.
Chen, Williams, Fitness, Newton (2008). When hurt will not heal: exploring the capacity to relive social and physical pain. Psychological
Science, 789-95. doi: 10.1111/j.1467-9280.2008.02158.x
Feldman, M., Condillac, R.A., Tough, S., Hunt, S., & Griffiths, D. (2002). Effectiveness of community
positive behavioral intervention for persons with developmental disabilities and severe behavior
disorders. Behavior Therapy, 33 (3), 377-399.
Gosse, L., Griffiths, D., Feldman, M. & Owen, F. ( in progress). Individual lifestyle planning and the relationship to achieving outcomes.
Griffiths, D., Feldman, M., & Tough, S. (1997). Programming generalization when teaching social skills to adults with mental retardation: effects
on generalization, social validity and self-report. Behavior Therapy, 28, 253-269.
Griffiths, D. M., Condillac, R., . & Legree, M. (2014). Genetic Syndromes and Applied Behaviour Analysis. UK: Jessica Kingsley Publishing.
Griffiths, D., Owen, F., & Condillac, R. , Hamelin, J., & Robinson, J. (2010). Final report of agency and family surveys. Evaluation of the Facility
Initiative. Ministry of Community and Social Services Research Branch.
Griffiths, D. & Watson, S. (2004). Demystifying syndromes associated with developmental disabilities. In D. Griffiths & R. King, (Eds.),
Demystifying Syndromes. NADD: Kingston, New York.
Harlow,H. & Zimmerman, H. (1959). Affective response in infant monkeys, Science.
Schalock, R. Brown, I. Brown, R., Cummins, R. Felce, D. Matikka,L. Keith,K. & Parmenter, T. ( 2002 ). Conceptualization, Measurement, and
Application of Quality of Life for Persons With Intellectual Disabilities: Report of an International Panel of Experts.
Trenhaile, J. Summary of the good lives model. http://dhs.sd.gov/ddc./Goodlivesmodel.pdf
Wehmeyer, M. L. (1992). Self-determination and the education of students with mental retardation. Education and Training in Mental
Retardation, 27, 302-314.
United Nations (2006), UN Convention on the Rights of Persons with Disabilities. New York: UN.
Walker-Hirsch, L. & Champagne, M. (1988 ). Circles, California: Stanfield Publ.