FAMILY FACETS
LEARNING LAB WORKSHOPS
PRESENTER’S CURRICULUM
MISSOURI CHILDREN’S DIVISION
MISSOURI DEPARTMENT OF SOCIAL SERVICES
Family Facets
Developmentally Challenged
Learning Lab Workshops
WORKSHOP CHECKLIST
Equipment
Digital Projector (& projector Slide, if needed)
Flip chart stand
Materials
Markers for flip chart
Name Tags
Folders for each trainee
Flip Chart
Anticipated number of Trainees: _______
Pass-outs
(6 Pass-outs)
Pre-Test
Workshop Workbook
Self Directed Learning
Stan & Ginger Assessment
Workshop Evaluation
Post-Test
Pass-out 1
Pass-out 2
Pass-out 3
Pass-out 4
Pass-out 5
Pass-out 6
Workshop Booklet
(54 Booklet pages)
Workshop Agenda
Developmental Disabilities
Definitions
Brain Functioning
Issues and Problems
Protective Factors
Child Vulnerability
Genogram
Caregiver Protective Capacities
Criteria for CP
Risk to Children
Child Ecomap
Self-Directed Learning
Factors Influencing Adequacy of CC
Content Areas for Teaching
Supplemental Handouts
Booklet pg 2
Booklet pg 3
Booklet pg 4-7
Booklet pg 8
Booklet pg 9
Booklet pg 10
Booklet pg 11
Booklet pg 12-14
Booklet pg 15-17
Booklet pg 17-19
Booklet pg 20
Booklet pg 21-22
Booklet pg 23-24
Booklet pg 25-31
Booklet pg 32-33
Booklet pg 34-54
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PowerPoint Slides
(29 Slides)
Title Page
Participants Introductions
Goals
Joanna Video
Current Practice
Pre-test
Developmental Disabilities
Definitions
Intellectual Disability
Problems
Broad Factors
Assessment
Protective Factors
Child Vulnerability
“
“
Genogram
Caregiver PC
Criteria for CP
Ecomap & Child Ecomap
Positive Solution Building
Engagement
How to Assist Families
Stan & Ginger
Large Group Activity
Questions?
Workshop Evaluation
Post-Test
(End)
Case Scenario
PowerPoint 1
PowerPoint 2
PowerPoint 3
PowerPoint 4
PowerPoint 5
PowerPoint 6
PowerPoint 7
PowerPoint 8
PowerPoint 9
PowerPoint 10
PowerPoint 11
PowerPoint 12
PowerPoint 13
PowerPoint 14
PowerPoint 15
PowerPoint 16
PowerPoint 17
PowerPoint 18
PowerPoint 19
PowerPoint 20
PowerPoint 21
PowerPoint 22
PowerPoint 23
PowerPoint 24
PowerPoint 25
PowerPoint 26
PowerPoint 27
PowerPoint 28
PowerPoint 29
Learning Lab Workshops
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Stan &Ginger
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ASSISTING DEVELOPMENTALLY
CHALLENGED PARENTS
INTELLECTUALLY CHALLENGED
October, 2010
I.
Introduction
Note To Presenter:
A.
PRESENTER INTRODUCTIONS.
1.
Names.
2.
Agency, positions held, and how long.
Note To Presenter:
B.
At the very beginning of the workshop, Presenter introduce yourself
by giving the group your background, add supervisory experience,
and history as a Presenter.
Then briefly have participants introduce themselves.
Use PowerPoint “Participant Introductions”
Slide No. 2
15-20 Minutes
PARTICPANTS INTRODUCTIONS.
1.
Names.
2.
Agency, positions held, and how long.
3.
Have trainees tell something they would like to learn or apply today
pertaining to “Developmentally Challenged Families”.
Note To Presenter:
Establish the housekeeping rules for the Workshop and add any other
rules necessary.
1.
Daily starting and stopping time.
2.
Breaks.
3.
Lunch.
2.
Where important areas are in the hotel/smoking restrictions.
3.
Pagers and phone on vibrate or silent.
4.
Location of bathrooms
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Note To Presenter:
Learning Lab Workshops
“Workshop Agenda”
Workbook pg 2
WORKSHOP AGENDA
I.
INTRODUCTION
II.
GOALS OF THE WORKSHOP
III.
BRAINSTORMING: FAMILIES WITH DISABILITIES
IV.
NET WORKING & DISCUSSION
V.
PRE-TEST
VI.
DEFINITIONS AND TYPES OF DISABILITIES
A. DEVELOPMENTAL DISABILITIES
B. INTELLECTUALLY DISABLED AND BRAIN FUNCTIONING
VII. ASSESSMENT
A. PROTECTIVE FACTORS & CHILD VULNERABILITY
B. GENOGRAM
C. ECOMAP AND WHEN YOU WERE A CHILD ECOMAP
VIII. POSITIVE SOLUTION BUILDING
A. ENGAGEMENT
B. HOW TO DO IT DIFFERENTLY
C. FACTORS INFLUENCING ADEQUACY OF CHILD CARE AND ABILITY TO LEARN
D. CONTENT AREAS FOR TEACHING
E. APPLICATION AND NETWORKING
IX.
QUESTIONS
X.
WORKSHOP EVALUATION
XI.
POST-TEST
XII. FAMILY FACETS WEBSITE MATERIALS, WORKSHOP CODE
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Note To Presenter:
II.
Learning Lab Workshops
Use PowerPoint “Goals-Participants Will Be Able To:”
Slide No. 3
Goals of the Workshop
At the conclusion of the Workshop, participants:
● Will gain knowledge of developmentally challenged and intellectual disabled
parent(s).
● Will use assessment tools to identify strengths and needs of parent(s) with
disabilities.
● Will gain knowledge in writing service/treatment plans for intellectually disabled
parent(s) that will increase their protective capacities.
● Will have supplemental tools and techniques as resources when working the
developmentally challenged parent(s)
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III. Brainstorming: Families with Disabilities-Time frames,
frustrations, and where do we get stuck in our approach.
Note To Trainers: Use PowerPoint
Use Video: "___"
Slide No. 4
Video “Joanna”
30 Minutes
Video
Start from beginning of video go through
end of “Joanna”
Large group Discussion and brain storming
Suggested discussion Questions
Or can debrief video by letting the participants discuss what came to
their minds as they heard Joanna’s story.
1. How would we begin to serve Joanna & her children?
2. What would be the current practice when assessing her needs, goals,
and writing her case/treatment plan?
3. What else comes to your mind about Joanna?
4. Do you think the children could go home with her and what would
she need to be successful?
5. What about the time frames, how long would it take for her to
complete a plan addressing the issues?
6. What would the court system look at with Joanna?
7. Where might we get stuck or Joanna?
8. What would be some of the frustrations when working with her?
9. Where would be some of her vulnerabilities?
10. What are some of her strengths?
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IV. Networking and Discussion
What is our current practice when serving families with disabilities?
Looking at what we do now, what may be better practice leading to better
results.
We can’t continue to do plans for the developmentally challenged because it does
not empower and increase their protective capacities so how do we do that?
Note To Presenter:
Use PowerPoint Slide “Current Practice“
Slide No. 5
20 Minutes
Large Group Discussion
Large group discusses their staff’s current practice with developmentally
challenged families/
Record on flipchart paper for later use. As the workshop progresses
look at what was recorded and with new information and skills how
that current practice with what might change.
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V.
Developmentally Challenged
Learning Lab Workshops
Pre-Test
Note To Presenter:
Use PowerPoint Slide “Pre-Test”
Handout the pass-out “Pre-Test”
Slide No. 6
Pass Out 1
Estimated Time: 15 Minutes
Handout Pretest and explain to group that the change in scores from
pretest to post-test is what is significant. The workshop today will
provide opportunities for fine tuning our knowledge and application
of goal writing for effective case plans so there will be an increase in
your score at the closing of the workshop today.
Presenters try not to focus on pre-test and continue to reassure group
that it is measure of change that is important.
There are 5 multiple choice questions which should take about 15
minutes. No discussion after the test is completed. If participants are
still anxious reassure them that all the material covered today should
ensure that they will be able to answer the post-test questions with
ease.
Note To Presenter:
Handout the pass-out “Workshop Workbooks”
Pass Out No. 2
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VI.
Developmentally Challenged
Definitions and Types of Disabilities
Note To Presenter:
A.
Learning Lab Workshops
Use PowerPoint Slide “Developmental Disabilities”
Slide No. 7
Use Workbook
Workbook pg 3
DEVELOPMENTAL DISABILITIES
Developmental Disabilities
Developmental disabilities are long-term physical, mental, or social impairments that occur before a
person is twenty-two years old. They are called developmental because this is the time of life that a
person develops from an infant to an adult. The source of a disability does not determine whether it
is called a developmental disability.
Some development disabilities are inherited. Some result from car accidents or other trauma. Some
result from illness. Some developmental disabilities are physical, while others are mental and social.
The criteria necessary for a disability to be called a developmental disability are that it occurred
during the developmental period, that it appears to have permanent effects, and that it significantly
affects independent functioning.
Note To Trainers:
Use Workbook
Workbook pg 3
Just mention that the material is in their workbook as a resource to use later.
Presenter do not go through this information
The state of Missouri definition of developmental disabilities was adopted in May of 1991.
According to the Missouri definition, developmental disability refers to a severe and chronic
disability that meets the following conditions.

It must be attributable to mental intellectual disability, cerebral palsy, epilepsy, head
injury, autism, a learning disability related to brain dysfunction; or to another mental
and/or physical impairment manifested before the person attains age 22.

The impairment must be likely to continue indefinitely. It must result in substantial
functional limitations in two or more of the following areas: self-care; receptive and
expressive language; learning; mobility; self-direction; capability for independent
living or economic self-sufficiency.

The impairment must also reflect the person’s need for a combination of special care,
habitation, or other services which may be of life-long or extended duration, and
which are individually planned and coordinated.
The Missouri definition of developmental disabilities is very similar to the federal definition.
Although the Missouri definition requires that a person have limitations in two areas while the
federal definition requires that a person have limitations in three areas, the federal definition
separates “ economic self-sufficiency” from “independent living,” counting them as two separate
categories, while the Missouri definition counts them as one category.
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The federal definition adds that when the term developmental disabilities is applied to children from
birth through age five, it includes children who have substantial developmental delays or specific
conditions that are likely to result in developmental disabilities if services are not provided.
Note to Presenter:
Use PowerPoint Slide “Definitions”
Slide No. 8
Definitions
There are many disabilities that affect parenting children. There is successive international
studies that reported unusually high rates, in the range of 40 per cent to 60 per cent, of children
being removed from their parents with intellectual disability
So today we will focus and explore the intellectually disability, the disabilities affecting
cognitive reasoning, and an approach that can be used with all disabled parents.
B.
INTELLECTUALLY DISABLED AND BRAIN FUNCTIONING
Note To Presenter:
Use PowerPoint Slide
Slide No. 9
Use Workbook
Workbook pg 4-9
Presenter discusses the PowerPoint slide that gives the definition but
mention the rest of information in the workbook are for reference
material.
Briefly discuss intellectual disability and since that is the disability
that comes to the attention of the child welfare system, this is the
disability we will focus on today. Although the practice of child
welfare should be approached the same with other disabilities.
Definitions
What is intellectual disability?
Intellectual disability is a disability characterized by significant limitations both in intellectual
functioning (reasoning, learning, problem solving) and in adaptive behavior, which covers a range
of everyday social and practical skills. This disability originates before the age of 18.
Is intellectual disability the same as developmental disability?
Not exactly. Developmental disability is an umbrella term that includes intellectual disability but
also includes physical disabilities. Some developmental disabilities can be strictly physical, such as
blindness from birth. Some individuals have both physical and intellectual disabilities stemming
from genetic or other physical causes (e.g., Down Syndrome, fetal alcohol syndrome). Sometimes
intellectual disabilities can stem from nonphysical causes, such as the level of child stimulation and
adult responsiveness.
Is intellectual disability just determined by an IQ test?
No, but the IQ test is a major tool in measuring intellectual functioning, that is, mental capacity for
learning, reasoning, problem solving, and so on. A test score of around 70—or as high as 75—
indicates a limitation in intellectual functioning.
Other tests determine limitations in adaptive behavior, which covers three types of skills:

Conceptual skills—language and literacy; money, time, and number concepts; and selfdirection
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
Social skills—interpersonal skills, social responsibility, self-esteem, gullibility, naïveté (i.e.,
wariness), social problem solving, and the ability to follow rules, obey laws, and avoid being
victimized

Practical skills—activities of daily living (personal care), occupational skills, healthcare,
travel/transportation, schedules/routines, safety, use of money, use of the telephone
But evaluation and classification of individuals with intellectual disabilities is a much more
complex issue. The major function of the American Association on Intellectual and Developmental
Disabilities (AAIDD) is to publish the most advanced thinking in its manual, Mental Intellectual
disability: Definition, Classification and Systems of Supports. The most recent edition was
published in 2002; the next is due in 2010.
In defining and assessing intellectual disability, AAIDD stresses that professionals must consider
such factors as

community environment typical of the individual’s peers and culture

linguistic diversity

cultural differences in the way people communicate, move, and behavior
What causes intellectual disability?
Some disabling conditions classified as developmental disabilities—such as autism or cerebral
palsy—might include intellectual disabilities. Other developmental disabilities, such as Down
Syndrome, fetal alcohol syndrome, and fragile X syndrome, could well include intellectual
disabilities. Intellectual disabilities could also be caused by social factors, such as the level of child
stimulation and adult responsiveness, and educational factors, such as the availability of family and
educational supports that can promote mental development and greater adaptive skills.
Nevertheless, according to the AAIDD manual, Mental Intellectual disability: Definition,
Classification and Systems of Supports, approximately 40 to 50 percent of the causes of intellectual
disabilities currently have no identifiable origin.
What’s the most modern thinking about how to help people with intellectual disabilities?
AAIDD stresses that the overarching reason for evaluating and classifying individuals with
intellectual disabilities is to tailor supports for each individual, in the form of a set of strategies and
services provided over a sustained period.
The goal is to enhance people’s functioning within their own culture and environment in order to
lead a more successful and satisfying life. Some of this enhancement is thought of in terms of selfworth, subjective well being, pride, engagement in political action, and other principals of
“disability identity.”
Is intellectual disability the same as mental intellectual disability? Why do programs still say
mental intellectual disability?
Mental intellectual disability and intellectual disability are two names for the same thing. But
intellectual disability is gaining currency as the preferred term. In fact, the American Association on
Mental Intellectual disability changed its name in 2007 to the American Association on Intellectual
and Developmental Disabilities.
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It is crucial that ‘mental intellectual disability’ and ‘intellectual disability’ should be precisely
synonymous in definition and in all related classification because current federal and state laws
contain the term ‘mental intellectual disability’. That is the term used in law and public policy to
determine eligibility for state and federal programs, including the Individuals With Disabilities
Education Act—IDEA (2004), Social Security Disability Insurance, and Medicaid Home and
Community Based Waiver.
Also, the term ‘mental intellectual disability’ is used for citizenship and legal status, civil and
criminal justice, early care and education, training and employment, income support, health care,
and housing and zoning.
How are intellectual disability and developmental disability different?
Intellectual disability forms a subset within the larger universe of developmental disability, but the
boundaries often blur as many individuals fall into both categories to differing degrees and for
different reasons.
Developmental disabilities are defined as severe chronic disabilities that can be cognitive or
physical or both. The disabilities appear before the age of 22 and are likely to be lifelong.
Intellectual disabilities encompass the “cognitive” part of this definition, that is, those disabilities
that are broadly related to thought processes. Because intellectual and other developmental
disabilities often co-occur, intellectual disability professionals often work with people who have
both types of disabilities.
Some developmental disabilities are purely physical, such as congenital deafness or visual
impairment resulting from the individual’s mother contracting rubella while pregnant. These are not
intellectual disabilities. Other developmental disabilities can be caused by cerebral palsy, epilepsy,
autism, or other disabling conditions. These conditions might or might not include intellectual
disabilities.
Still other developmental disabilities can result from chromosomal disorders, such as Down
Syndrome, fetal alcohol syndrome, and fragile X syndrome. These instances could well include
intellectual disabilities—but not always. For example, according to the Centers for Disease Control,
males with fragile X syndrome generally have mild to severe intellectual disabilities, whereas
females can have average intelligence.
On the other hand, some causes of intellectual disabilities are not physical. These include social
factors, such as the level of child stimulation and adult responsiveness, and educational factors, such
as the availability of family and educational supports that can promote mental development and
greater adaptive skills.
Why did AAIDD change the term from ‘mental intellectual disability’ to ‘intellectual
disability’?
AAIDD’s move to replace ‘mental intellectual disability’ with ‘intellectual disability’ does not
change the basic definition of the term, but it does reflect a change of vision.
AAIDD stresses that the term ‘intellectual disability’ has exactly the same definition as the
association’s most recent (2002) definition of mental intellectual disability. It covers the same
population of individuals who were previously diagnosed with mental intellectual disability or who
were eligible for that diagnosis. This exact fit is crucial because the term ‘mental intellectual
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disability’ is used in law and public policy to determine eligibility for state and federal programs,
including the Individuals With Disabilities Education Act—IDEA (2004), Social Security Disability
Insurance, and Medicaid Home and Community Based Waiver.
Also, the term ‘mental intellectual disability’ is used for citizenship and legal status, civil and
criminal justices, early care and education, training and employment, income support, health care,
and housing and zoning.
But the word change from ‘mental intellectual disability’ to ‘intellectual disability’ does reflect a
revised focus.

It is less offensive to persons with disabilities.

It is more consistent with internationally used technology.

It emphasizes the sense that intellectual disability is no longer considered an absolute,
invariable trait of a person.

It aligns with current professional practices that focus on providing supports tailored to
individuals to enhance their functioning within particular environments.

It opens the way to understanding and pursuing “disability identity,” including such
principles as self-worth, subjective well being, pride, engagement in political action, and
more.
What role does AAIDD play in defining mental intellectual disability and intellectual
disability?
AAIDD, the world’s oldest organization of intellectual disability (ID) professionals, has played a
major role in evolving ideas about and approaches to intellectual disability. In fact, the association,
founded in 1876, revised its definition of mental intellectual disability ten times between 1908 and
2002.
The first definitions of mental intellectual disability focused on a failure to adapt socially to the
environment. Later definitions added a medical approach that considered heredity and pathology
and called for the mentally retarded to be segregated. Then the rise of the mental testing movement
brought an emphasis on measuring intellectual functioning by IQ test. The IQ test became the way
to define the group and classify the people within it.
In its 1959 definition and classification manual, AAIDD first attempted a dual-criterion approach: a
definition that mentioned both intellectual functioning and “impairments in maturation, learning,
and social adjustment.” In its 1961 manual, AAIDD folded the “impairments” description into the
phrase “adaptive behavior,” a term still used today.
The third element of the definition involves age of onset. Early definitions mentioned “the
developmental period.” AAIDD’s most recent 2002 definition states that the disability “originates
before the age of 18.”
1992 saw a major change, when AAIDD added to and refocused the definition of mental intellectual
disability to reflect a new way of understanding and responding to it. AAIDD moved away from a
diagnostic process that identified deficits solely on the basis of an intelligence test score. It
considered social, environmental, and other elements as well. Most crucially, the emphasis shifted
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from providing programs to people with intellectual disabilities to designing and delivering support
tailored to individuals to help them reach their highest level of functioning.
The 1992 definition was the first to view intellectual disability as a condition that could be
enhanced by provision of supports, rather than as a static, lifelong disability.
Since 1992, the association has worked to further develop and refine this paradigm shift. In the
association’s most recent manual, “Mental Intellectual disability: Definition, Classification and
Systems of Supports”, published in 2002, discussion of the support system was dramatically
expanded and improved.
The next manual in which “mental intellectual disability” is universally replaced by “intellectual
disability,” is scheduled for release in 2010.
Brain Functioning
There are a taxonomy of the cognitive abilities that might be impacted by impairments to brain
functioning. There are eight primary or first-order factors identified of cognitive ability, referred to
as primary domains of human cognitive ability:
1. Language
2. Reasoning
3. Memory and Learning
4. Visual Perception
5. Auditory Reception
6. Idea Production
7. Cognitive Speed, and
8. Knowledge and Achievement
We want to capture some sense of the nature of cognitive abilities in each domain so as to illustrate
the ways in which brain impairments typically impact the intellectual functioning of people with
intellectual disability.
Issues and Problems
Parents with intellectual disabilities experience a continuum of cognition regarding their child’s
development, similar to Piaget’s theory of child development. This cognition moves from concrete
to abstract, from egocentric to the wider social context where a mother has a better-defined sense of
self and others, enabling her to respond to her infant as an evolving person. By the age of four,
children of mothers functioning at the lower end of this cognitive continuum have lower I.Q.’s,
which lead to problems in social and emotional adjustment, and poorer perceptual abilities. In
addition to intellectual ability, lower self-esteem and lower self-confidence seem to affect parenting
skills. Feelings of incompetence and low self-esteem are common characteristics of those with
intellectual disability.
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Areas of Concern reported by Mothers with Developmental Disabilities
Incomprehensibility
This had first and foremost to do with their perception of not receiving enough information, or not
enough comprehensible information, and with their experience of being treated poorly in these
encounters.
Lack of information A recurring complaint regarding the interaction with support professionals
was that the mothers did not feel that they received sufficient information or that this information
was easy to comprehend.
Improper treatment The interviewed mothers frequently expressed a feeling that, in their
interactions with professionals, they had been treated ‘badly’. They had experienced themselves
being questioned and observed, feeling accused and judged. However, they also reported having felt
as though they were being questioned by their own relatives and by people with whom they had
close personal relationships. Such incidents often gave rise to feelings of frustration, which in turn
found expression in aggressive reactions.
Not being believed Another perspective that emerged from mothers’ was their experience of being
doubted.
Note to Presenter:
Use PowerPoint Slide “Problems & Broad Factors
Use Workbook
Slide No. 10-11
Workbook pg 9
The problems associated with parental intellectual disability may be compounded by other
problems that make parenting difficult, such as poverty, unemployment, social isolation,
stress, and relationship difficulties.
Broad factors commonly associated with child abuse and neglect include:

social isolation;

parental stress;

parents with past histories of being abused or neglected as children;

demographic characteristics such as parental income, education, and employment status;

parental physical and mental health problems;

children with physical or mental health problems, behavioral problems or disability;

parental substance abuse; and

domestic/family violence
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VII. Assessment
Note To Presenters: Use PowerPoint Slide
Slide No. 12
Using assessment tools is a good way to engage and also get needed
information to best serve families.
When assessing using our assessment tools we must keep in mind the
protective factors and child vulnerability. Review very quickly. Just
as a reminder. Don’t have to read the slides May also use as a review
asking, what they include
Remind Supervisors that it is extremely important to put emphasis on
these two areas.
Will be using additional tools, the Protective Factors Needs/Strengths
assessment and a child ecomap.
A.
MUST LOOK AT PROTECTIVE FACTORS AND CHILD VULNERABILITY
Note To Presenters: Use PowerPoint Slide “Protective Factors”
Use Workbook “”
Slide No. 13
Workbook pg 10
Protective Factors
Increasing Protective Capacity
Nurturing and Attachment
A child's early experience of being nurtured and developing a bond with a caring adult affects all
aspects of behavior and development. When parents and children have strong, warm feelings for
one another, children develop trust that their parents will provide what they need to thrive, including
love, acceptance, positive guidance, and protection.
Research shows that babies who receive affection and nurturing from their parents have the best
chance of healthy development. A child's relationship with a consistent, caring adult in the early
years is associated later in life with better academic grades, healthier behaviors, more positive peer
interactions, and an increased ability to cope with stress
Knowledge of Parenting and of Child and Youth Development
There is extensive research linking healthy child development to effective parenting. Children thrive
when parents provide not only affection, but also respectful communication and listening, consistent
rules and expectations, and safe opportunities that promote independence. Successful parenting
fosters psychological adjustment, helps children succeed in school, encourages curiosity about the
world, and motivates children to achieve
Parental Resilience
Parents' who can cope with the stresses of everyday life, as well an occasional crisis, have
resilience; they have the flexibility and inner strength necessary to bounce back when things are not
going well. Multiple life stressors, such as a family history of abuse or neglect, health problems,
marital conflict, or domestic or community violence—and financial stressors such as
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unemployment, poverty, and homelessness—may reduce a parent's capacity to cope effectively with
the typical day-to-day stresses of raising children.
Social Connections
Parents with a social network of emotionally supportive friends, family, and neighbors often find
that it is easier to care for their children and themselves. Most parents need people they can call on
once in a while when they need a sympathetic listener, advice, or concrete support. Research has
shown that parents who are isolated, with few social connections, are at higher risk for child abuse
and neglect.
Concrete Supports for Parents
Many factors affect a family's ability to care for their children. Families who can meet their own
basic needs for food, clothing, housing, and transportation—and who know how to access essential
services such as childcare, health care, and mental health services to address family-specific
needs—are better able to ensure the safety and well-being of their children.
Partnering with parents to identify and access resources in the community may help prevent the
stress that sometimes precipitates child maltreatment. Providing concrete supports may also help
prevent the unintended neglect that sometimes occurs when parents are unable to provide for their
children.
Note to Presenter:
Use PowerPoint Slide “Child Vulnerability”
Use Workbook Page
Slide No. 14-16
Workbook pg 11
Child Vulnerability
■ Child vulnerability refers to a child’s capacity for self-protection. It is the degree to
which a child can avoid, negate or modify safety threats, or compensate for the
caregiver’s missing or insufficient protective capacities.
■ Child vulnerability encompasses child attributes such as age; developmental level
and mental disability; physical disability and illness; whether a child acts
provocatively or passively; whether a child seems powerless or defenseless; the
visibility of a child to others; a child’s ability to communicate; a child’s ability to
meet basic needs; and, whether the child is seen as a scapegoat.
■ Other factors that affect vulnerability are a perpetrator’s access to a child and the
perpetrator’s relationship to the child, such as the ability to exert power and control
in the relationship. Siblings within a family setting may have varying levels of
vulnerability and each child must be assessed independently on all of the attributes.
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Note To Presenters:
Learning Lab Workshops
Use PowerPoint Slide, “”
Use Workbook
Slide No. 17
Workbook pg 12-14
10 Minutes
B. GENOGRAM
Solution Focus and Interpreting for Plan
Making the Genogram Solution Focused
This technique combines narrative and solution-based interventions with genogram construction.
The use of genograms as a clinical tool was developed primarily by Bowen therapists (Guerin,
1976). Bowen theory describes the process by which family emotionality contributes to personal
and interpersonal symptoms that are transmitted across generations (Bowen, 1978). While specific
symptoms might change, the key is to the underlying emotionality that generates them and typical
responses that maintain them.
Infants and children are especially vulnerable to parental dysfunction. Problems with
primary caregivers can stir great anxiety in a child. Insecure children may then develop into
anxious parents if the interpersonal issues are not resolved. The next generation of children,
caught in the web of their parents’ anxiety, are at increased vulnerability to insecurity and
related symptoms, and the pattern continues. Genograms are used to diagram family
membership, key events, symptoms, typical reactions to anxiety and stress, and the quality of
interpersonal relationships across at three generations. Because symptoms are both indicative
of and a response to a family’s underlying emotional upset, how members relate to one
another is of critical importance. Shifts in functioning often coincide with traumatic events
such as job loss, divorce, natural disaster, abuse, or death in the family and emerge as
patterns of typical responses. These patterns usually take the form of distance, triangling,
dysfunction in one person, or conflict and often are transmitted through family roles, rules,
and myths.
Indicators for Genogram Use
Clients are dominated by family stories that dictate particular patterned responses to anxiety to the
exclusion of other, more positive responses. Difficulties that are apparent may include, but are not
limited to:
 Adult clients who resent being treated differently than their siblings

Adult clients who view their parents as having betrayed them or as falling far short
of their expectations;

Adult clients who believe they fell far short of their parents’ expectations;

Adult clients who are afraid that they are following in the footsteps of a troubled
parent or other family member;

Adult clients whose family roles include compromising their own relationship needs
due to debilitating demands from embers of their family of origin;

Drug abusers who recall only emotional pain and loss in their families of origin;
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
Parents who fear that their child is turning out (or not turning out) like someone in
the family of origin;

Parents who associate a child with negative characteristics that remind them of a
disliked family member;

Couples who agree that their relationship difficulties are due to the influence of
extended family members;

Clients who do not implement beneficial changes in their lives for fear that familyof-origin members will respond negatively; and

Clients who seem blocked in some fashion or other from doing what seems logical to
others as obvious solutions to life’s dilemmas.
Identifying relative family influence, strengths, and exceptions is another solution-based and
narrative tool used with genogram construction
It highlights the family’s ability to not let the problem have absolute influence across the
generations and to notice exceptions to problem-based family myths. The full range of the family’s
responses may have been lost in the transmission of the storied beliefs; “functional” responses may
have been “forgotten.”
Questions such as, “Who has found relief from the legacy of abuse/neglect?,” “how was your aunt
able to deal successfully with the abuse?,” “Where has the abuse/neglect stopped?,” and “Who in
your family would describe this problem differently?” serve to identify areas of alternative views
and relationship strengths upon which to build.
Workers can help clients conceptualize the changes they would like to see happened in clear,
concrete terms by asking questions that elicit details that might not have been noticed in the midst
of the problem-saturated view of the past and previous generations.
Problems both worsen and improve from one generation to the next. From a solution-based
perspective, noticing improvements or imagining positive difference is more helpful than revisiting
what went wrong. Exploring intergenerational solutions, exceptions, and successes, however
small, instills in individuals/families a sense of pride and renewed incentive. For example, “you
might ask, “What did you notice your brother doing compared to how your parents did it? “What
does that say about you? “What can happened next that will tell you these changes are continuing?,”
and “What will your son notice that tells him that you have noticed these changes?” This kind of
visioning allows clients to make things different for the future, first in thought and then in deed.
Adding a solution and future focus to an intervention that has typically focused on problems and
history provides clients a more immediate link to an improved future than has been possible with
prior methods of genogram construction. Spanning all three time perspective-past, present, and
future-helps clients realize what was different in previous generations that they might not have
notices, what they have already accomplished in their lives, how the clearer image of a preferred
future can be useful, and how current behaviors that are already occurring can make that future
happen.
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Genograms
A genogram will help family and workers to make an appropriate assessment of the those
relationship patterns and where intervention may be needed to assist the family reduce their
dysfunction and/or problematic situation that brought them to the attention of child welfare.
Genograms have been used in many different ways by different professionals---to engage
families, to reframe and detoxify family issues, unblock the system, clarify family patterns,
connect families to their history and thus empower them and free them for their future.
Engaging the family- genogram interview provides a practical way of engaging the whole family in
a systemic approach to assessment and case planning. It shows interest in the whole family system.
The process of mapping family information on the genogram implies that a larger picture of the
situation is needed to understand the problem. It conveys a major systemic assumption: that all
family members are involved in whatever happens to any member.
Clarifying family patterns- as the worker constantly collect information to complete the genogram,
he or she is constantly constructing and revising hypotheses based on his or her ongoing
understanding of the family. Clarifying genogram patterns serve as important educational
information for family members, allowing them to see their lives and behavior as connected to the
family history. They could also concentrate on changing the pattern and would result to the
elimination of dysfunctional behavior once patterns are being clarified.
Genograms are used to study and record relationship patterns between family members and the
individual characteristics that make up these patterns that occur.
Family structure: Single parent, multi-generational household, birth order issues, any other family
members with disabilities, etc.
Relationships/boundaries: Conflictual relationships, enmeshed relationships, disengaged
relationships, enabling relationships, supportive relationships, etc.
Subsystems: marital subsystems, parental subsystems, sibling subsystems, etc.
Roles/rules: “the good child” vs. “the wild child”, devoted daughter/son, rules regarding the
family reputation, rules regarding taboo subjects, rules regarding parental respect, rules regarding
disabilities, etc.
Strengths/coping mechanisms: Strong faith, clearly defined values, family support, denial, who
supported who, coping skills under stress, coping mechanisms to handle disabilities in the family,
etc.
Transgenerational patterns: Domestic Violence, secret keeping, disabilities, etc.
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Protective Factor checklist
Note To Presenters:
Use PowerPoint Slide, “”
Slide No. 18
Use Workbook
Workbook pg 15-18
Presenter explain the information below using the description about
caregiver protective capacities.
Don’t go into detail of each unless there are questions, the group will be
using this list when assessing the scenario family.
10 Minutes
Caregiver Protective Capacities
Caregiver protective capacities are personal and parenting behavioral, cognitive and emotional
characteristics that specifically and directly can be associated with being protective of one’s young.
There are a number of things that make a personal characteristic a protective capacity:
Assess the following capacities. Any needs should to be addressed in a case plan/treatment
plan.
Need=N
Not Applicable=NA
Strength=S
Behavioral Protective Capacities
The caregiver has a history of protecting-This refers to a person with many
experiences and events in which he or she has demonstrated clear and reportable
evidence of having been protective.
The caregiver takes action- This refers to a person who is action-oriented as a human
being, not just a caregiver.
The caregiver demonstrates impulse control- This refers to a person who is deliberate
and careful, who acts in managed and self-controlled ways.
The caregiver is physically able- This refers to people who are sufficiently healthy,
mobile and strong.
The caregiver has/demonstrates adequate skill to fulfill care giving responsibilitiesThis refers to the possession and use of skills that are related to being protective.
The caregiver possesses adequate energy- This refers to the personal sustenance
necessary to be ready and able to perform the job of being protective.
The caregiver sets aside her/his needs in favor of a child- This refers to people who
can delay gratifying their own needs, who accept their children’s needs as a priority over
their own.
The caregiver is adaptive as a caregiver- This refers to people who adjust and make
the best of whatever care giving situation occurs.
The caregiver is assertive as a caregiver- This refers to being positive and persistent.
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The caregiver uses resources necessary to meet the child’s basic needs- This refers
to knowing what is needed, getting it and using it to keep a child safe.
The caregiver supports the child- This refers to actual, observable sustaining,
encouraging and maintaining a child’s psychological, physical and social well-being.
Cognitive Protective Capacities
The caregiver plans and articulates a plan to protect the child- This refers to the
thinking ability that is evidenced in a reasonable, well-thought-out plan.
The caregiver is aligned with the child- This refers to a mental state or an identity with
a child.
The caregiver has adequate knowledge to fulfill care giving responsibilities and
tasks- This refers to information and personal knowledge that is specific to care giving
that is associated with protection.
The caregiver is reality-oriented, perceives reality accurately- This refers to mental
awareness and accuracy about one’s surroundings; correct perceptions of what is
happening; and the viability and appropriateness of responses to what is real and factual.
The caregiver has accurate perceptions of the child- This refers to seeing and
understanding a child’s capabilities, needs and limitations correctly.
The caregiver understands his/her protective role- This refers to
awareness…knowing there are certain solely owned responsibilities and obligations that
are specific to protecting a child.
The caregiver is self-aware as a caregiver- This refers to sensitivity to one’s thinking
and actions and their effects on others—on a child.
Emotional Protective Capacities
The caregiver is able to meet own emotional needs- This refers to satisfying how one
feels in reasonable, appropriate ways that are not dependent on or take advantage of
others, in particular, children.
The caregiver is emotionally able to intervene to protect the child- This refers to
mental health, emotional energy and emotional stability.
The caregiver is resilient as a caregiver- This refers to responsiveness and being able
and ready to act promptly.
The caregiver is tolerant as a caregiver- This refers to acceptance, allowing and
understanding, and respect.
The caregiver displays concern for the child and the child’s experience and is
intent on emotionally protecting the child- This refers to a sensitivity to understand
and feel some sense of responsibility for a child and what the child is going through in
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such a manner to compel one to comfort and reassure.
The caregiver and child have a strong bond, and the caregiver is clear that the
number one priority is the well-being of the child- This refers to a strong attachment
that places a child’s interest above all else.
The caregiver expresses love, empathy and sensitivity toward the child; experiences
specific empathy with the child’s perspective and feelings- This refers to active
affection, compassion, warmth and sympathy.
Remember that children are not safe because caregiver protective capacities are diminished. As you
consider this list of twenty five protective capacities, you can imagine that in many, if not most,
cases involving child safety, several of these protective capacities may be diminished. That
produces a serious challenge when collaborating with a caregiver during a Protective Capacity
Assessment to figure out where to begin.
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Use PowerPoint Slide, “Criteria for Case Plan”
Slide No. 19
Use Workbook
Workbook pg 18-19
The below may assist the worker and family on prioritizing goals.
5 Minutes
Criteria for Selecting Caregiver Protective Capacities for the Case Plan
Note To Presenters:
When commiserating with a caregiver, as the Protective Capacity Assessment comes to a
conclusion, bring to mind and introduce into conversations some of the following that may apply
and help in deciding where to begin and what diminished protective capacities to include in the case
plan.

Most Reliable
This refers to identifying among all diminished protective capacities, which do you and the
caregiver trust is the closest to being the essential capacity in need of change, the most
significant capacity that both of you trust is the right one to begin with?

Most Compelling
This refers to a diminished protective capacity that is vivid and impressive with respect to
explaining how it is that a caregiver is not protective. Among diminished protective
capacities, this is the one that you both agree undeniably must be addressed.

Most Defining
This refers to the diminished protective capacity that is definitive of difficulties of being
protective. You might think of it as the central explanation for why the person is not
protective. Another way of thinking of “most defining” is that both of you agree that a
diminished protective capacity is actually reflective or representative of the person in
general.

Genesis
This refers to a diminished protective capacity that serves as the root or cause of other
diminished protective capacities. It is like observing that several protective capacities are
diminished, but they all seem initially influenced or flow from a single one.

Sum
This criterion acknowledges that some caregiver protective capacities are closely related.
For instance, you can see that empathy, love and bonding are closely related protective
capacities. It is possible that among some caregivers that one diminished protective capacity
actually represents a sum of others. In our example, a parent who has difficulties loving a
child could have problems with bonding and empathy. But the problems of love represent a
sum of all of these.

Greatest Interest
Collaboration allows you to realize what is of most interest to yourself and the caregiver. If
there are more than one diminished protective capacities, it may be simply a choice of where
to begin or what to address that is associated by interest.

Quickest Payoff
This refers to considering among the diminished protective capacities which might have
prompt results; be easily addressed; ripple into changing other diminished capacities.
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Most Crucial
This recognizes that diminished protective capacities are not the same; do not have the same
value; may not have the same effect when diminished or when enhanced. What is essential
or vital is determined by larger things like hardest to change; most likely to return a
caregiver to full authority; likely to result in greatest gain or greatest loss; contributes most
to being protective.

Least Threatening
Sometimes the place to begin is where a person feels the least challenged, threatened or feels
less personal risk or commitment.

Least Resistive
This refers to diminished protective capacities for which a person feels the least concern
about addressing or defending. This includes higher likelihood of openness and willingness
to approach change because of no felt need for maintaining status quo.
There is a ruling principle in all of this that should be applied as you talk through with a caregiver
what diminished protective capacity or capacities to select for the case plan: Mutual Agreement. We
emphasized that mutuality is the cornerstone in this approach to ongoing CPS. Mutuality demands
equal standing between you and the caregiver and caregiver self-determination. When employing
these ideas expressed in this criteria, as part of the conversation, keep in the mind the importance of
arriving together at what must change.
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Risks to Children:
“Children of parents with intellectual disabilities are at-risk for developmental delay,
psychosocial intellectual disability, and behavior disorders (Feldman, 1998; Feldman & WaltonAllen, 1997; Garber, 1988; Gillberg & Geijer-Karlsson, 1983; Reed & Reed, 1965).”
Often the parents' lack of knowledge and skills result in their children suffering from:
untreated diaper rash, malnourishment (due to improper feeding techniques, formula preparation,
and/or nutrition); and gastrointestinal infections (due to poor or absent baby bottle cleaning and
sterilization techniques).
The children are endangered when, for example, the parents do not know how to hold or bathe the
child safely, make the home environment safe, provide emergency first aid, or when to take the
child for medical treatment. The parents’ failure to provide a stimulating home environment may
increase risk of child developmental delay (Feldman, Case, Towns, & Betel, 1985; Feldman &
Walton-Allen, 1997
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ECOMAP AND CHILD ECOMAP
Note To Presenter:
Use PowerPoint Slide “”
Use Workbook “”
Slide No. 20
Workbook pg 21-22
10 Minutes
Networking
Small Group Activity
Explain to participants that when they do the child ecomap pretend
they are 8 or 9.
When a developmental disabled parent completes this ecomap it will
help them to see that when they were children that they had supports
that made it better for themselves and their families.
The purpose is to open their eyes to how can they recreate an ecomap
that is supportive has an adult and as a parent.
Child Ecomap (to help find what worked in the past)
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When Your Were a Child Eco Map
1.
Me
by __________________________
today is ______________________
I am _____________ years old.
Me
Favorite Color _____________________
feels good
Least Favorite Color ________________
doesn't feel good
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Instructions for Completing a Eco-Map on Your
Childhood
1
Fill in the blanks.
2.
Social worker.
3
Courthouse:
4 and 5 Homes: Encourage talking about homes he/she grew up in, who was a good support at
home, etc.
6
Siblings: A discussion of siblings and how did you feel about your siblings as a child and
now.
8.
I feel _______: Encourage spontaneous verbalization.
9
Things that bugged me when I was a child:
_________________________________________
10
School: Give the opportunity to talk about school experiences and feelings about school.
Also, what kinds of classes taken.
11
I worried about: Encourage spontaneous verbalizations.
12
Things I liked to do: Encourage talking about things enjoyed as a child and things that
others did that made him/her happy.
13
Dreams: encourage talk about his dreams or nightmares experienced as a child.
14
Friends: Talk about old friends and how to reconnect to those friends if they may be
supportive.
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VIII. Positive Solution Building
Note To Presenter:
Use PowerPoint Slides “Positive Solution Building” & “Engagement”
Slide No. 21-22
Briefly discuss information below.
A.
ENGAGEMENT
Parents with disabilities have expressed the desire to be treated ‘as adults’, to have their voices
better respected, and to have the support better coordinated with the families.
Therefore, with people who have a disability, you would
 Behave in ways that show you are interested and sincerely care. By being involved and
participating in the client’s situation. It also means acting in ways that make the family like
you and value YOUR ATTENTION.

We just listen to the family. We ask them to share with us what brought them to our
attention.

The more successful we are at engaging, the more successful we’ll be at motivating families
and assisting them for change.
Note To Presenter:
Use PowerPoint Slides “How to Assist Families”
Use Workbook “”
Slide No. 23
Workbook pg 23-24
Also a Pass Out
Pass Out No. 3
Briefly discuss that this article is a resource when working with
developmentally challenged parents.
It has many ideas and suggestions for working with an intellectually
disabled parent.
Also, mention the two other areas in their workbooks on the slide 23.
They will be helpful when accomplishing the case/treatment plan.
B.
HOW TO DO IT DIFFERENTLY
Self-Directed Learning of Child-Care Skills by Parents With Intellectual Disabilities
Maurice A. Feldman, PhD
Children of parents with intellectual disabilities (ID) are at risk for neglectful care due to parenting
skill deficiencies. This article describes the development, use, and evaluation of self-directed
learning (via self-instructional audiovisual child-care materials) to teach basic child-care, health,
and safety skills to parents with ID. We developed the materials based on input from pediatric
health care professionals and research on how to present visual materials to persons with low
literacy skills. The parents quickly learned how to use the pictorial manuals and accompanying
audiocassette. Controlled field studies with 33 parents with ID (30 mothers, 3 fathers) found that
96% of the self-trained skills rapidly reached the same level seen in competent parents and
maintained as long as 3.5 years. Consumer satisfaction ratings were uniformly high. Percentage
correct performance was significantly related to the parents’ reading abilities and initial acceptance
of the materials. Overall, the results of these studies indicate that many parents with ID may
improve their parenting skills with low cost, low tech, self-directed learning. Future research should
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evaluate the effects of mass dissemination of the self-instructional materials on the incidence of
child neglect related to parental incompetence.
Children of parents with intellectual disabilities (ID) are at risk for neglectful care that leads to
health, developmental, and behavioral problems (Feldman, 1997, 2002a; Feldman & Walton-Allen,
1997). Most of these problems can be traced to parenting skill deficiencies, rather than purposeful
behaviors.
Many of these parents (who come to the attention of social service and child protection agencies)
lack critical knowledge and skills in providing adequate instrumental child-care, a safe home
environment, and nurturing interactions. Parents with ID also have difficulties in problem-solving,
recognizing and treating medical emergencies, and understanding basic child development
information.
Fortunately, many of these problems can be rectified through parent education and supports.
Effective parent training typically involves frequent (eg, weekly) instruction in the home (or a
homelike setting) by specially trained parent educators. Skills are trained individually by direct
instruction methods including task analysis, illustrations, prompting, modeling, feedback, and
reinforcement. This training enhances child health and development and dramatically decreases the
need for child custody intervention Despite the existence of an evidence-based parent educational
technology for this population, few specialized programs exist.
Workers need to have knowledge of child development, health, safety, and nutrition, as well as
effective teaching methods for adults with cognitive and literacy limitations.
In addition, a parent educator should be unbiased, nonjudgmental, empathic, and offer competencyenhancing support.
Self-directed parent education for parents without ID
Many more people read self-help books than seek professional counseling for psychological
problems and parenting is no exception; self help parenting books abound and many bookstores
have a dedicated section. Meta-analysis supports the effectiveness of self administered parent
training. Instructional parenting manuals and videotapes have been shown to be more effective than
wait list controls, and as effective (and more cost effective) than therapist-led training for parents of
children with a variety of issues including behavior problems at home and in the community, sleep
problems, fears, enuresis, and self-care skill deficits.
Self-Directed Learning of Child-Care Skills
Self-directed learning for persons with ID
While the use of self-directed approaches for parents without ID is supported, it is not clear whether
parents with cognitive limitations would respond as well. Research shows that persons with ID can
learn relatively complex repertoires, such as domestic, cooking, computer use, internet access,
academic, self-care and vocational skills; via self-instruction involving audio or visual cues. Thus,
there is reason to believe that parents with ID could learn a set of specific parenting skills via selflearning.
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Note To Presenter: The rest of the above article is provided has a pass out.
SELF-DIRECTED PARENTING
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FACTORS INFLUENCING ADEQUACY OF CHILD CARE AND ABILITY TO
LEARN
Over 30 specific training programs for parents with intellectual disability or other developmental
disabilities, as well as many others integrating them into high risk service models, have recently
sprung up across the United States. Networking has become a major effort in our need to gain some
understanding of the parameters that impinge on the functioning of this population and the best
ways to provide intervention. A series of external factors and personality dynamics are beginning to
emerge as significant parameters. The discussion which follows represents the conclusion of our
own work with 40 families, as part of Project Parenting at UCLA. Much of this information has
been corroborated by the numerous others involved in the national network we have coordinated.
Judgment
What then are those significant factors? To begin with, we must restate that IQ above 60 does not
seem to affect parenting success if we measure this either by the eventual removal of the child from
the home, or by the child’s development on both cognitive and emotional levels. Even judgment,
which is presumably greatly affected by IQ, does not seem to follow. For example, Grace (IQ 50)
was raising her grandson. When a second story window broke and the management of her building
took no action to fix it, she put a chair in front of it, presumably to block it off. In fact, Alan, aged
two, used the chair as a way to climb up to see what was outside. He fell two stories, was amazingly
unharmed, and was subsequently removed from her custody. The group of mothers (with IQs in the
60’s and 70’s) then participating in Project Parenting, were well able to see the poor judgment
involved and spoke of what their responses would have been, such as calling the Health Department
or placing wood or cardboard over the window.
Family History
Family History clearly seems to be one of the most significant factors. Those who had parental role
models that provided some nurturing are clearly more nurturing of their own children in spite of
other environmental difficulties. Those with histories of physical and even sexual abuse are more
inclined to show rough handling, though they speak of a great desire not to repeat what their parents
did to them. However, even those who grew up in intact families with some type of parent role
models had little in the way of programming for parenthood. All relate that their families never
thought they would become parents and so did not provide the covert messages about what one does
as a parent as they grew up, that are normative in other families.
Independent Living Skills
As with many developmentally disabled adults, the parents we have worked with have been
socialized to be highly dependent. They have been given little chance to learn to make decisions or
discover the consequences of varying actions. Many have also entered parenthood without the
benefit of training for adulthood, i.e. any independent living skills training. Often they have not
come to the attention of the service system until they became parents. Once parents, the focus has
been on parenting skills, often without evaluation of their ability to care for themselves. Many of
the lacks we have seen in parents’ ability to provide for their children came from a lack of ability to
perform basic skills of independent living.
Joan, for instance, had few cooking skills and no confidence in those she did possess. She and her
son ate breakfast out every day and brought in fast food or prepared sandwiches for themselves and
her husband for dinner. This was compromising both their nutrition and their budgeting. When an
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independent living skills instructor was sent into her home, Joan was able to learn to prepare many
dishes, shop appropriately, and budget for this. Their family began to eat together and nutrition and
budgeting improved. The most dramatic effect was on her self-esteem. This was markedly
demonstrated when she was able to make hors d’ oeuvres and a three-layer cake for her son’s third
birthday.
Relationship with Professional Agencies is the most complicating aspect of this is the multiple
messages parents must attend to from the varying “authorities” in their lives. As parenting is not a
black and white issue and professionals bring their own personal and cultural biases to their work,
advice about the same issue often differs from one to the other. Also, the parents must prioritize in
regard to which agency’s demand and suggestions take precedence. Dependency seems also to
increase with so many people involved. In understanding the parents’ response or lack of response
to service, we must look at the constant boundary invasion they experience. What may seen to be
resistance may in fact be their way of trying to shore up these boundaries. Few people are required
to open their homes to the type of scrutiny these families are exposed to. They are clearly judged on
a more stringent standard that the general population and are very aware of being constantly
watched.
In the early months of our program, one mother brought her children in a new outfit each week.
When asked how many they had, her reply was, “How many weeks will we be coming here?”
While we protect people’s reproductive rights with regulations against sterilization, we have public
laws stipulating that children can be removed from parents because parents are developmentally
disabled. All this leads to reluctance on the part of parents to utilize services. Because of the
stringent reporting laws, families know that if they reveal serious difficulties, the service provider
will be forced to report them. This makes trust very difficult to build. Service providers must be
honest about the role they play. Intellectual disability parents live in constant fear that someone will
come to take their children away. For some, this seems to account for the over protectiveness they
demonstrate. Some of the “paranoia” would appear justified.
There seems to be little rhyme or reason about which reported case the Department of Children’s
Services (DCS) takes action on and even less reliable criteria on which to measure what actions the
judges will take. When Grace’s (IQ 85) severely intellectual disability daughter gave birth to a son,
Grace took responsibility for raising the child. She was repeatedly warned about the dangers of
leaving the child with her daughter and how he would surely be taken away if anything happened.
One night she did and he was harmed. The story is unclear, but the child was found to have a severe
abrasion with the skin literally rubbed off the elbow. The judge returned the child one week later
with no court order for any particular evaluation or service. On the other hand, Carol lost both her
children after pinching the younger one when she could not control her crying.
In spite of the Understanding the following through of all the counseling requirements and
demonstrating her ability to handle the older child, the system resisted the return on the grounds that
no one could guarantee that her anger would not be expressed inappropriately with this child.
Similarly, when the police were called after a previously well-functioning mother had a paranoid
episode, the child was taken into custody without any effort to find the stepfather or to see this as a
crisis rather than a representation of her global inability to parent. No psychiatric care was ordered.
The mother was judged on her current psychiatric status rather than on any comprehensive
evaluation. On the other hand, when the police were called to the home of an alcoholic mother they
did nothing as they said she could still walk. This mother was reported to the Department of
Children’s Services on many occasions before the children were removed.
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These parents do not have the savvy to screen what they tell the professionals who are judging
them, especially those they are not voluntarily involved with. Thus, Anita called the worker to say
her five-year-old said he hated her. Without understanding the developmentally appropriate, if not
pleasant, nature of this comment any better than the mother, the worker saw this as proof that the
child needed to go back to foster care.
Family Involvement In respect to familial involvement, we have been surprised to see how little
physical support many of these parents get from their extended families. Parents of intellectual
disability children speak often of their fear that their children will have children whom they will
have to raise. In fact, this is only the case in multigenerational families. In a few instances, families
are providing minor financial support. In others, they have much to say about how things should be
done, but are not available for actual child care. Almost none of the parents are able to have time to
themselves due to the lack of money for baby sitters and the reluctance of family members to care
for their children. However, the extended family, even if dead or living far away, has a powerful
influence in terms of the clients’ desire to win their approval. This is especially problematic when
the advice of grandparents is in direct conflict with the advice of doctors or professionals. An
example of this was the mother who fed her baby solids at four weeks because her mother told her
to do so. The professionals involved were saying that giving him solids too soon was resulting in his
“failure to thrive.” Both the involved agencies and the family were threatening to have the baby
removed but for opposite reasons.
The multigenerational family poses an interesting challenge. Usually the mother in such a situation
is referred by her own mother, who asks for help in improving her daughter’s parenting skills.
However, if she does not learn new skills, this seems to upset the family equilibrium. This has led,
at the benign end, to mothers being withdrawn from the program to the more serious consequence
of verbal or even physical abuse directed towards the mother and/or her children. Things have
become extremely difficult when the mother speaks of moving out. Unfortunately, some of this
need to keep the mother in her parental home seems to be motivated by the SSI checks involved.
When we consider assessing the success of parenting in multigenerational families, we are faced
with another challenge. If the child or children are developing well, can the parent be seen as
successful or is he/she by definition inadequate because he requires or chooses the support of the
multigenerational family? Among the families we have known, multigenerational families appear to
be normative to some minority cultures. In many of these families, siblings without intellectual
disability are also raising their children in these family units.
Cultural and Religious Factors
This leads us to the cultural issues operating for many of these families. When a mother was seen
using a great deal of physical punishment, this was felt to be the result of her difficulty with anger
control. In fact, probing further, we discovered that this is the norm in her family which has dealt
with disobedience with a physical response for as long as she can remember. On a home visit, we
found another grandmother with a folded belt on the table and we were told clearly that this was
culturally normative. We, of course, had to be honest regarding the law’s definition of its use as
abusive. Cultural issues have been seen in respect to nutrition education as well. Our staff became
alarmed when a mother spoke of chewing her child’s food before giving it to him. Further
exploration revealed that this was a normative practice in her culture and posed no real danger to the
health and safety of the child. While children sleeping in bed with their parents or fed on their laps
may cross mainstream middle-class standards, they are normative for many cultures. Religious
factors also play a role. While one mother was having amniocentesis because “my Regional Center
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worker told me to,” she assured us that she would never have an abortion no matter what the results
were, due to her Catholicism. This belief also sustained her hold on life when her depression
became intense and she considered suicide.
Marital Relationship
As for “normal” couples, marital issues have a strong influence on parenting. Much of the marital
discord we see centers around issues of extended family. This often further complicates the
difficulties parents who are mentally intellectual disability have in deciding whose messages to
attend to. The mother may be the one interacting with the agency personnel and then having to
defend this against her husband’s family’s input or vice versa.
Several of our families fit what might be called the “Jack in the Beanstalk” syndrome. The wives in
these families complain that their husbands are ogres and to listen to the men the illusion is there.
But, like the ogre in the story, these men feel very inadequate and use their bravado as a cover up.
Their wives, like the ogre’s wife, play a role in supporting this behavior. In some cases, the “ogre”
is actually physically violent. These men speak of the intense effort they exert not to allow their
anger to affect their children; perhaps their wives are a safer target for their frustration. One of these
men was essentially totally uninvolved with his son except to yell at his wife to keep him quiet. His
wife had only negative things to say about any effort he made to change. Following an angry
explosion on his part, she went to a shelter with their son. The husband became depressed and
contracted to try to play a major role if she returned. She in turn agreed to be more supportive of
his efforts. With this new focus, he began to venture to play with his son and demonstrated some
excellent interactive skills previously masked by the severe discord and his painfully low selfesteem.
Support Groups
We have found that mothers have drawn a great deal of support from the peer support and
discussion groups they participate in. They are frequently surprised to find that their problems are
shared by other women. Through discussions and role plays they often gain new insights into their
rights to resist verbal and physical abuse. They also develop friendships that they can pursue outside
of group time. This gives them someone to call and often a place to retreat to when they fear abuse.
While this would at first glance seem very positive, it often has much the same effect as intervening
in multigenerational family systems. As the equilibrium in the relationship shifts, the men become
disturbed and either attempt to “forbid” their wives from attending or become more abusive. While
their situations often seem quite desperate to program staff, compared to the physical and sexually
abusing environments in which many of these women grew up, their current lifestyle represents a
major improvement.
Poverty
Poverty, of course, also has a major effect on the lives of these families. With the high cost of rent
and food, there is little money for anything else. They are unable to afford baby sitters or any type
of entertainment for themselves. They must constantly skimp to make ends meet. As they are unable
to pay for day care, the only way they can get respite is to become part of the program designed to
provide day care to children at risk of abuse or neglect. Many have been raised in more opportune
economic conditions. Their disability has left them either on SSI or in the entry level jobs and so
living a culture of poverty that is foreign to them.
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Those who try to make it on their own are actually penalized for their efforts. A family can make
less than the income level that would qualify them for aid, but be ineligible because the number of
hours the father works renders him “fully” employed. Marginal employment leaves a family also
ineligible for WIC and food stamps (nutrition programs and medical aid). We have yet to
understand how families receiving identical income levels seem to manage in very different ways.
Some of them provide for themselves and their children in an almost miraculous way on
infinitesimal incomes.
Social Isolation
Their poverty as well as their sense of being different leads to severe social isolation. Marriage
and/or parenthood have rendered them incompatible if not ineligible for social groups for
intellectual disability adults; while merging with the greater community is difficult. Several
families trying to live in middle-class neighborhoods have attended “Mom and Me” programs, but
felt out of place. Distance and cost of transportation preclude them from getting together with those
people they know.
Personality Factors
Having isolated these largely external factors, we also turned our attention to what personality
factors might emerge as predictors of the variability of parenting abilities in clients with similar IQ.
Low self-esteem with its attendant depression seems to be one of the most debilitating influences on
successful parenting. While this would seem to be an intrapersonal factor, in fact it has its roots in
the way these people are dealt with interpersonally. From their earliest years they remember being
spoken to and of negatively or at best being ignored. They have never been reinforced for success
and have not experienced positive reinforcement from their social environment. Their eligibility for
all of the services they utilize is the result of their weaknesses and their performance is constantly
scrutinized for failure rather than success. The very fact of becoming parents, a life status lauded for
others, is criticized, even by the would-be proud grandparents.
Personal Childhood Experiences
Many studies have shown that parents with intellectual disability have difficulty praising their
children. These parents will often relate the fact that they themselves received little or no praise or
at best an occasional “good girl.” Having never experienced positive reinforcement, they have little
understanding of what it is. Their lacks in the area of stimulating imaginative play also have roots in
their own childhood. In order to engage in imitative play, one must operate at a child’s level; many
of these parents have been either so deprived of play themselves that they become personally
engrossed in the activity, or they are so fearful of seeming “intellectual disability” that they avoid
such interaction and tend to be overly directive in their children’s play. Having had so few
successes in their own lives, they often look to measure their own self-worth by their children’s
progress.
Health
Their depression has also usually been lifelong; therefore measures of depression, such as the Beck,
may not reflect their feelings as this instrument tests “recent onset” depression. Other medical
problems, such as seizures, have a strong influence on their abilities as well. Psychiatric
disturbance, particularly of the characterological nature, seem to have a profound effect on
functioning. Alcoholism has also been a major factor here.
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Expressive and Literacy Skills
Specific language disorders, often previously attributed to their low IQ levels, have gone ignored
and untreated. These have a major effect on their ability to provide cognitive stimulation. Many
have not learned to read, in spite of IQs in the 60’s that would predict the ability to learn to read at
the fifth or sixth grade level. Mothers in our program have recently been involved with volunteers
trained in the use of the Laubach Literacy System. All have made significant progress and speak of
great gains in self-esteem related to this. Even those who know how have expressed great fear in
confronting written materials, due to their long history of school failure.
Motivation
Motivation is perhaps the most critical factor in success of both parenting and use of training. Those
who are referred by the courts often come with obvious lack of internal motivation to improve and
project all problems on others. As in any type of therapy, those who see their own need to learn new
things and make changes while not taking responsibility for things that are clearly external, do best.
This is also seen in a recent survey of behavioral therapists (Budd and Greenspan 1985). They also
identified original adequacy of care (again we do not have an objective tool to measure this) as a
major predictor for use of training. There seems to be mothers who instinctively have provided their
children with empathy and response. However, we have had two mothers whose anxiety and
depression so clouded their abilities that, in the early months, they were unable to handle their
babies appropriately or provide good care. With some clearing of this symptomatology and
concomitant improvement in self-esteem, they are now able to interact well with their children
including praise, imitation, and being verbally responsive.
Intervention
Some initial conclusions regarding intervention with these families can be drawn from the
experience of the network of programs serving this population. First, it must be stressed that these
parents strive to be good parents and learn to improve their abilities. It is important to them that
their children have a better life than they did. There seems to be some distinction between those
who are court-referred as opposed to self-referred. In working with these families, it is essential to
have constant interaction with the myriad agencies they deal with, and have face-to-face contacts as
often as possible. It is vital to clarify which agency or person has primary responsibility. It is also
essential to establish a trusting relationship. This can often take a very long time because of the
many previous negative experiences with agency personnel.
Establishing trust requires honesty. The parents must be told of the legal need to report suspected
abuse and neglect. They must feel that the professional is their ally but will do whatever is
necessary to protect the child. It helps for them to be able to see that this is their ultimate aim as
well. One must have a truly good feeling about these families; they have experienced
condescending attitudes, patronization, distrust and outright dislike from various agencies. Such
attitudes must be avoided at all costs. A professional must be really committed to working with
these families and be able to see both their strengths as well as their problems.
Once a positive relationship is developed, professionals must provide parents both with things to do
and those to avoid. We must be reasonable in the amount of change to expect, always keeping
cultural and religious factors in mind. Knowing their difficulty in generalizing, material must be
presented in a variety of ways. Written materials are rarely useful with this population. Even those
who are able to read are often phobic because of so many negative experiences in school.
Audiovisual presentations are particularly useful.
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The use of models as “like” the parents as possible is essential for motivation for attempt to change
and the eventual development of self-efficacy. Peer modeling and feedback is often better accepted
than professional input. For this reason, a combination of center-based programming with a focus of
peer support and in-home follow-up is very effective. Center-based programming allows the parents
to have some respite from full-time care as well. Child care workers can be trained to provide
children with stimulation while mothers participate in group sessions. Mother-child interactions are
enhanced by the larger facilities and greater number of toys available. In-home follow-up is
necessary to attempt generalization of concepts presented at group sessions.
Transportation is a major problem for most of the families and center-based programming will only
be successful if this is arranged. Careful evaluation of each member before joining the group is
clearly indicated. Home visits and individual sessions to clarify goals are also important.
Psychotherapy is not always indicated even when secondary psychiatric disorder is present. This is
somewhat analogous to our teaching parenting skills in spite of being unable to change an
individual’s IQ. The process of insight-based therapy can lead to uncovering of more than can be
handled. Group process in a psychotherapeutic rather than parent education or peer support group
can be unsettling for many parents. One must be particularly careful when therapeutic interventions
are aimed at behavior ingrained in a person’s life script. It is particularly important to provide the
necessary “protection” before permission is given for the client to change (Steiner 1974).
Conclusions
In this chapter we have attempted to unravel some of the background and factors at issue when
persons deemed to be mentally intellectual disability have their parenting ability called into
question. The picture is far more complex than once believed. There is still no agreement on what
constitutes “adequate child care” and we are still only in the early stages of developing educational
and training programs which take into account of the often negative past-life experiences of adults
with mental intellectual disability, and which offer them support in their parenting role.
Debates as to whether or not adults with mental intellectual disability should be allowed to have
children will continue in ethical and academic forums. The reality of the birth of these children will
continue in society and the need to develop appropriate services will remain a priority for clinical
settings and relevant agencies. The general community has recently become aware of the issue
through extensive media coverage and has shown recognition of the desire of these families to
provide and care for and about their children. It is incumbent on professionals in the field to conduct
service-based research studies which will serve to clarify further the parameters that do, in fact,
predict successful parenting and interventions that will help this population succeed in their goal.
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D.
CONTENT AREAS FOR TEACHING
Risks of Inadequate Nutrition
Infants and young children of developmental disabled parents are at risk for inappropriate nutrition
and/or failure to be fed in a timely manner. Through each stage from infancy to school-age, an
intellectually disabled mother requires guidance concerning appropriate foods, amounts, and
schedules. A d new mother, for instance, may not understand how frequently newborns eat, that the
amount of formula needs to be increased as the baby grows and gains weight, or that feedings can
be spaced further apart. It is usually easier for a retarded mother to bottle feed rather than
Socialization and Bath Time
Bath time should be a special time between mothers and infants. Bathing not only keeps the infant
clean, but it is an important time for an infant’s social development. Encouraging socialization skills
is important with all new parents. However, individualized training is so much more essential for
disable mothers who have reached adulthood with a condition that limits both their development of
skills and their range of adaptive behaviors. An intellectually disabled mother may require explicit
directions for the bath preparation, the actual bathing, and proper skin care. However, it is also
important to show to the mother that bath time provides an excellent opportunity for interaction
with her infant by touching and talking to him or her (Johnson & Johnson.
Recognizing Illnesses
An extremely important aspect of infant and child care is recognizing when an infant or child is ill
and may require medical attention. Signs and symptoms of illness should be reviewed many times
with disabled parents with an emphasis on what they should do with each presenting symptom.
Their physician’s telephone number as well as the ambulance, hospital, police, and fire numbers
should be on a card placed next to their telephone. Not all homes will have a telephone, so these
parents need to be guided through how to access a telephone in an emergency. Every effort should
be made, perhaps through the assistance of other human service workers, to obtain a telephone for
disabled parents.
Preventive Care
Help disabled parents recognize the importance of regular well-child visits with their primary care
provider, and then, guiding them in accessing the care. The primary care provider assesses a child’s
proper growth and developmental, as well as the child’s general health status. Immunizations
against childhood diseases such as diphtheria, pertussis, tetanus, polio, measles, mumps, rubella,
and H. influenza may be given at these office visits. It is important for disabled parents to
understand what these vaccines protect against, side effects for which to watch, and proper dosages
of antipyretic medications. It should be stressed that these vaccines be received on schedule, and
immunization records kept for school years to show that immunization requirements have been met.
Safety Issues
Most injuries can be prevented, and have predictable causes. However, because disabled adults
often show inadequate judgment and do not possess the skills to predict possible outcomes, safety
is-sues are an enormous concern when they become parents. Teaching safety issues to disabled
parents can be linked with the stages of growth and development. With each stage of development
and as the child becomes increasingly mobile, safety issues change. The normal stages of
development can also be interwoven with age-appropriate activities and discipline.
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Bonding
The process of bonding and the manifestation of love are two of the most important things new
parents can give to their infants. Assisting a disabled parent to touch, cuddle, and talk to their new
infant is one of the most important aspects of parenting. Touching, cuddling, and talking to an infant
provides the infant with a sense of security and love. “Some intellectually disabled mothers have
been observed to handle their young infants physically quite roughly because (it was reported) this
was their behavioral style, and because they lacked the judgment of what is appropriate and safe for
a young infant” (Bromwich, 1985, p. 10). In the past, studies have shown that developmentally
disabled parents are less likely to be affectionate, responsive, and accommodating to their children
(cited in Feldman, Case, Rincover, Towns, & Betel, 1989).
Accessing Resources
“Many parents with intellectual disabilities face additional problems such as poverty-level income,
and lack of vocational skills or job training”. “Studies show that the employment status of the
intellectually disabled individual does not approach that enjoyed by non-disabled persons, and
financial problems of developmentally disabled couples are frequently reported”. “Many disabled
parents require financial assistance, training in health and child care, and counseling in managing
day-to-day problems of running a house-hold”.
The limitations of the developmentally disabled are varied and numerous. Many have short
attention spans and have difficulty retaining information they have been taught. Due to these
limitations, many problems arise with their socioeconomic statuses and abilities to function
normally. Because of their cognitive limitations, developmentally disabled adults have difficulty
obtaining and maintaining employment in the normal work force. A viable option in some
communities is employment at sheltered workshops. Being employed in an environment with other
developmentally disabled adults similar to themselves, gives these adults comfortable worksite
conditions and a sense of self-worth. The income levels are such, however, that oftentimes financial
assistance is needed. Many of these developmentally disabled adults have difficulty handling
budgeting issues and the day-to-day problems of managing a household. The utilization of a human
service worker to assist with financial concerns and budgeting is often required.
Supportive Interventions
“Parents with low intellectual functioning often have difficulty securing resources and negotiating
the complexities of the human services system. Many of the forms and applications are complex,
and parents with limited reading and comprehension skills cannot complete the process.
Additionally, many of these parents do not have transportation or the knowledge of accessing public
transportation. Intense assistance by health and human service professionals is essential in order for
these parents to tap into resources for which they are eligible. Many times these parents are labeled
as noncompliant, dependent, and resistant because of their lack of follow-through.
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APPLICATION AND NETWORKING
.
Note To Trainers: Small Group Activity
Small Group Activity
Use PowerPoint Slide “Stan & Ginger”
Slide No. 24
Handout the pass-out “”
Pass Out No. 4
Pass out Stan & Ginger Scenario
Small groups use information in video and pass out to do an assessment
on the family and come up with strengths/needs.
Each group will present their assessment information.
Note differences they may have done differently or information they
gained adding additional assessment pieces. Note how this may lead
them to a plan that may lead to addressing the underlying issues.
When doing genogram, have groups record information from the 6
areas on bottom of workbooks pg 14:
Family Structure, Relationships/Boundaries, Subsystems, Roles/Rules,
Strengths/Coping Mechamisms, and Transgenerational Patterns.
Note To Trainers: Use PowerPoint Slide
Large Group Activity:
Slide No. 25
Large Group Activity
As large group discuss the protective capacity checklist, results,
discuss what are some goals for case plans, and who would be
support to this family.
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IX. Questions?
Note To Presenter:
X.
Use PowerPoint Slide “Questions”
Slide No. 26
Workshop Evaluation
Note To Presenter:
Use PowerPoint Slide “Workshop Evaluation”
Handout the pass-out “Workshop Evaluation”
Slide No. 27
Pass Out 5
Hand out the Evaluation form, and ask Participants to complete all
parts of the Workshop Evaluation, including their name. Explain
that their name must be included in order for the Presenters to
complete the Participant’s Evaluation that is required by contract.
When Participants have turned in the Workshop Evaluation,
Presenters should then complete the Participant’s Evaluation.
The Evaluation form should be sent to the Business Office, along
with the Attendance Record, Pre-Tests, Post Tests, and Workshop
Booklets.
XI.
Post-test
Note To Presenter:
Use PowerPoint Slide “Post-test”
Handout the pass-out “Post Test”
Slide No. 28
15 Minutes
Pass Out 6
Ask participants to turn in the Post Test when the Post Test is
completed.
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XII. Family Facets Website Materials, Workshop Code
Note To Presenter:
Use Workbook “Workshop Code”
Workbook pg
The Workshop Code is ADCIDP01 for downloading and opening
materials for this Framework For Safety Workshop from the Family Facets
website.
At the close of each workshop each supervisory will get a Workshop Code for Workshop
specific documents and materials on the Family Facets website.
The Family Facets website address is: www.FamilyFacets.com
To download Workshop Materials:
1. Go to the Family Facets website, then to “Learning Labs”, then to “Workshops
Materials and Forms”.
2. Select the Workshop by name, then click on the material(s) you wish to download.
3. Download the materials to your computer, then use the Workshop Code to open the
material(s).
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