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Welcome to the USC UCEDD Webinar Series
for Individuals with Disabilities & Parents
funded by grant #90DD0695 from
the Administration on Intellectual and Developmental Disabilities (AIDD)
Administration on Community Living
July 28, 2016

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Your Moderator
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Susan Kanegawa
USC UCEDD Family Support Coordinator
skanegawa@chla.usc.edu
www.uscucedd.org
The USC University Center of Excellence in Developmental Disabilities at Children’s Hospital
Los Angeles (USC UCEDD) is one of 68 UCEDDs funded to promote systemic change,
advocacy, and capacity building in states on behalf of individuals with, or at risk for,
developmental, behavioral and/or special health care needs, and their families.
The USC UCEDD Webinar series is designed to educate the community about current policy
issues which impact the lives of people we serve and their families. Our primary audience is
individuals with special needs and their families. At this time, our webinars are in English only.
We are exploring methods to make this series available in other languages in the future.

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Structure and Logistics
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Poll:
Can you hear Susan and Sandy?
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to speak louder.

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Sandy Magaña, PhD
Professor of Disability and Human Development at the
University of Illinois at Chicago
July 28, 2016
Taking Care of Yourself
as Caregiver
of a family member with a
developmental disability

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About Dr. Sandy Magaña
Dr. Magaña is a Professor of Disability and Human
Development at the University of Illinois at Chicago, and the
Director of the Family Support Research and Training Center.
Email: maganas@uic.edu
Website: Family Support Research and Training Center
at the University of Illinois at Chicago
http://fsrtc.ahslabs.uic.edu/
Dr. Magaña’s research focus is on the cultural context of families who care for people with
disabilities and mental illness, and the experiences of parents who have disabilities. Her
concentration is on health disparities of minority caregivers, and diagnosis and treatment
disparities for Latino and Black children with autism spectrum disorder, and on interventions
to reduce health and service disparities.

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The Family Support Research and Training Center (FSRTC)
is a collaboration of researchers and organizations whose
focus is on gathering and generating knowledge about
the needs and experiences of families who provide
support to children and adults with disabilities. The FRSRTC aims to bridge
resources and information across diverse groups to develop policies and
practices related to family support.
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The FSRTC is housed at the University of Illinois at Chicago’s Institute on
Disability and Human Development (IDHD), which is the University Center
for Excellence in Developmental Disabilities Education, Research, and
Service (UCEDD) for the State of Illinois.

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Importance
of caring
for yourself
Signs of
stress and
depression
Including
others in
caregiving
Setting
health goals
for yourself
“By Caring
for Myself”
Program
Overview of the Webinar
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Importance
of caring
for yourself
Signs of
stress and
depression
Including
others in
caregiving
Setting
health goals
for yourself
“By Caring
for Myself”
Program
Recognizing the importance of
caring for yourself as a caregiver

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Story about Joanna
• Joanna is married, has a 4 year old son with autism, and two typically-
developing daughters who are 7 and 10 years old
• Listen to the story about Joanna’s stressful situation
• Let’s think about the ways that Joanna’s situation may be unique, and
ways that it is similar to other parents’ experiences
– Joanna’s son is young and required speech therapy
– Parents of adolescents or adults with I/D.D. may face other unique
challenges
• We will revisit this story when discussing ways to reduce stress
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Research on family caregivers
of children and adults with IDD
• Research shows that family caregivers compared to non-caregivers
– face higher rates of depressive symptoms—this was found across
several studies
– Have higher rates of obesity, high blood pressure, and arthritis
(based on a study in Illinois)
– Poorer self-rated health status
• Research based on a national data set shows that African American and
Latino caregivers of children with I/D.D., compared to their non-caregiving
counterparts
– Face higher rates of depressive symptoms, heart problems, arthritis,
and diabetes
– Are less likely to see a doctor for their own health care
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By caring for myself, I can
better care for my family
• We developed a health intervention focused specifically on caregivers’
health. I will share with you two of the sessions we cover in this
intervention about recognizing and reducing stress
• In working with caregivers, we find that many view taking care of their child
or adult with I/D.D. as their primary responsibility
• As in Joanna’s story, this can include many tasks and roles, such as taking him
or her to the doctor or for activities, managing his or her schedule, helping
with and teaching self-help skills, and managing challenging behaviors
• Research shows that managing challenging behaviors is one of the
strongest factors in high levels of stress among I/D.D. caregivers
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• As a result of the caregiving responsibilities,
caregivers often do not:
– Take free time to relax
– Find time to do things they like to do
– Go out with friends and other loved ones
• They often feel it is selfish to do these things, but consider the “airplane”
example:
– You may have heard the flight attendant say that in case of emergency,
put the oxygen mask on yourself first and then on your child or others
– Why do they make this recommendation?
• Think about what you do to take care of yourself on a regular basis
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Importance
of caring
for yourself
Signs of
stress and
depression
Including
others in
caregiving
Setting
health goals
for yourself
“By Caring
for Myself”
Program
Recognizing signs of stress and
depression

15.
Recognizing signs of stress
• Stress can result from any situation or thought that makes you feel
frustrated, angry, or anxious. What is stressful to one person may not
be stressful to another
• The body has a natural response to stress and releases stress hormones
to protect you
• Your body reacts when you are in danger, warning you to get out of harm’s
way— for example, a car coming at you when you are crossing a street
• Your body does not differentiate the different types of stressful
situations
• A pile-up of stressful situations can cause health problems
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• When your body activates the stress reflex:
– Your arteries contract, and this reduces
the blood flow to the heart
– Your blood pressure rises
– Your blood becomes thicker, increasing
the likelihood of developing a blood clot
• Too much stress can:
– Cause heart rate problems, heart attacks or other health problems
– Weaken the immune system, increasing the likelihood of colds and
infections
– Trigger asthma attacks, arthritis, and intestinal problems
– Affect the way you manage everything in your life
– Contribute to anxiety, depression and anger
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Ways to reduce stress
• Let’s think back to Joanna’s story. What are ways to help her reduce
stress in her situation?
– One key way would be to involve other family members in the
responsibilities so she isn’t doing it all herself:
• She could ask her husband to help her with the housework
• The children could help by picking up their things and
washing dishes
• Her husband could help with the son at night, or with the older
children in the morning, or with preparing the lunches
– Joanna could:
• Leave the housework for the next day
• Try to schedule appointments at a later hour
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• No one can avoid all stressful situations, but we
can learn to manage stress
– Use respite services if you have them—to take
time to do things you want to do
– Get professional help for specific needs such as
challenging behaviors
– Maintain a healthy lifestyle including physical
activity, healthy diet and adequate sleep
– Avoid smoking, too much alcohol or substance
abuse
– Don’t be afraid to ask for support!
– Engage in a mindfulness activity such as a
breathing exercise, yoga, or meditation
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Depression
• Too much stress can lead to depression; however it is not the only
contributing factor
• Depression may be described as feeling sad, blue, unhappy, miserable
or down in the dumps
• Most of us feel this way at one time or another,
but it is usually short-lived
• True clinical depression is a mood disorder
in which feelings of sadness, loss, anger or
frustration interfere with everyday life for
extended periods of time
• Clinical depression requires treatment—it is important to seek out
mental health care
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There are different types of
depressive disorders
• Major Depressive Disorder: the symptoms are severe and interfere with
your ability to work, eat, sleep, etc. A major depressive episode may occur
once in a lifetime, but a person can have various episodes
• Dysthymic Disorder: the symptoms of depression last a long time (2 years
or more) but are less severe than in major depressive disorder
• Postpartum Disorder: Generally, it is a major depressive episode within
the first month after giving birth
• Seasonal Depression: This type of depression occurs during the winter
months, when the hours of sunlight decrease, and generally disappears
during spring
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Signs & symptoms of depression
• Feeling depressed or down almost every day
• Losing interest or not being able to enjoy the things you used to enjoy
• Changes in appetite and/or weight (eating either less or more than you
used to)
• Sleeping problems (difficulty falling asleep, waking up often, waking up
very early and unable to fall asleep again, sleeping too much)
• Changes in speed of movement (either being too restless or moving too
slowly)
• Feeling tired all of the time
• Feeling undervalued or guilty
• Problems thinking, concentrating, or making decisions
• Having thoughts of death or of hurting oneself
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Seeking help
• If you have 5 or more of the symptoms described, it is important to see a
health care professional
• Depending on your health insurance or resources you may:
– First see a primary physician who can
treat you or refer you to a mental
health professional
– Contact a mental health agency such
as your County Mental Health
– Go to a government-funded health
care clinic to see a medical provider
who can treat or refer
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Importance
of caring
for yourself
Signs of
stress and
depression
Including
others in
caregiving
Setting
health goals
for yourself
“By Caring
for Myself”
Program
Including others in caregiving

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Including others
• Remember Joanna’s situation--she needed to include her family members
in daily tasks
• Including others can go beyond your immediate family
• Let’s think about your context:
– Make a list of the top three tasks or problems that you need help with
– Next let’s think of who in your life provides some sort of support to
you (we will explore this with the ecomap)
– Last, think about who you could ask for help with the above tasks or
problems
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You and your
immediate
family
Culture
or
religion
Health
Care
Work
Social
Services
Family
members
Recreation
Friends
School

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Importance
of caring
for yourself
Signs of
stress and
depression
Including
others in
caregiving
Setting
health goals
for yourself
“By Caring
for Myself”
Program
Setting health goals for yourself

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Name __________________________________ Date _____________
Healthy Habits Goal Contract
Your behaviors help you to achieve good health. It is important to have clear goals for
yourself. Set one goal now and make it specific, measurable, easy and important for
you. After you have achieved one goal, move on to another goal.
Exercise ● Healthy Eating ● Relaxation ● Health ● Asking for
Checkups Help
Important Area to Change: _____________________________________
Specific Goal: ________________________________________________
Action Plan: _________________________________________________
Obstacles: ____________________________________________________
Solutions: ____________________________________________________

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Importance
of caring
for yourself
Signs of
stress and
depression
Including
others in
caregiving
Setting
health goals
for yourself
“By Caring
for Myself”
Program
“By Caring for Myself” Program

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“By Caring for Myself” Program
• Some of what we discussed was part of a health intervention we designed
for Latina caregivers
• The full title is “By Caring for Myself, I Can Care Better for My Family”
– Because Latina mothers often feel caring for oneself is selfish, it was
important to include the family in the title
• We use promotoras de salud or community health workers to deliver the
intervention through either home visits or group sessions
– The promotoras are mothers of children with developmental
disabilities
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30.
Promotora
*Mother of
child with
I/D.D.
Share
common
identity with
participant
Health
educator in
Latino
community
Respected
and visible
Bilingual:
Communication
Bridge
Understand
host
community
* Unique to our study

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• Session One: Taking care of oneself & pre-test
• Session Two: Health care
• Session Three: Well-being activity
• Session Four: Nutrition
• Session Five: Exercise
• Session Six: Stress & depression
• Session Seven: Including others
• Session Eight: How to sustain growth & post-test
“By Caring for Myself” Curriculum
Eight-week health education program

32.
Using “By Caring for Myself”
If you are representing an agency that would like to use the program, we
can do a “train the trainer” program.
If interested, contact me:
Sandy Magaña,
UIC Department of Disability and Human Development
(312) 355-4537
maganas@uic.edu
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Resources
• Free booklets in English and Spanish about depression:
https://www.nimh.nih.gov/health/publications/depression-listing.shtml
• Information on stress:
https://www.nimh.nih.gov/health/publications/stress/index.shtml
• Los Angeles County Department of Mental Health
http://dmh.lacounty.gov/wps/portal/dmh
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Poll:
Do you now have a better understanding
about taking yourself as a caregiver?

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