1.
STOP IT!
Let’s talk about caregiver behaviors that become barriers to progress for citizens with
disabilities
presented by
www.personcenteredplanning.com

2.
So this
happened…
A FB live presentation in
early April: off-the-cuff
discussion about how
caregivers can actually
cause long-term barriers to
maximizing a person’s best
level of independence,
dignity and decision-making
that can even be dangerous.
Years of person-centered
planning and consultation
with families, hearing over
and over again about how
they are still doing
everything from personal
care to feeding and
managing every minute for
their adult loved ones.
3 organizations reached out and
asked me to make this a
workshop topic for families,
within 2 days of that FB live
discussion!
2

3.
Me first!
3

4.
What drives us?
4
MAMA & PAPA
BEAR
PROTECTION
SURVIVAL – just
getting through every hour
of every day is tough. I can’t
even begin to think about
the future.
TRAUMA:
from our
childhood, or
from
experiences
during our
journey with
our child, or
from other
relationships
Natural,
nurturing
INSTINCT
… that
doesn’t
progress
as they
age
FEAR both internal (what will happen to her
without me?) and external (somebody might hurt
him)
GUILT
PANIC

5.
What are some of the results?
5
DEPRESSION
HOARDING
EVICTION
REDUCED SELF
ESTEEM – those we
love believe they can’t when
we always do
RELATIONSHIPS
between family
& systems
caregivers are
difficult, can
cause
breakdowns in
communication
or even
dismissal.
BEHAVIORS
DRIVE
EVERYTHING
– when there are
no demands, then
others place
demands, the
shock &
resistance to the
new demands
make our LO’s a
“behavior
problem”
LACK OF PREPAREDNESS for the real world, or for
the next environments in adulthood, mean far more
limits to housing & living options, more churn by
caregivers, inconsistency and anxiety
ISOLATION
ABUSE

6.
“
Lowered expectations
may take the form of sympathy,
kindness, or generosity,
but they can be quite harmful to the individual
by limiting the amount of constructive feedback
that is received.
This negative feedback keeps the individual in an
inferior and dependent position.
6
Smart,
J.
(2016).
Disability,
Society,
and
the
Individual.
United
States:
PRO-ED,
Incorporated.

7.
“
7
T.
Yura,
Raising
the
child
with
special
needs,
Individual
Psychology:
The
Journal
of
Adlerian
Theory,
Research
&
Practice
39(4)
(1983),
369–379.
Smart,
J.
(2016).
Disability,
Society,
and
the
Individual.
United
States:
PRO-ED,
Incorporated.
When parents overindulge or over
protect the special needs child,
they take away the experiences
which enable the child to be successful in
life.
The consequences of overprotection include
lowered self esteem, feeling less capable and
reduced opportunity for growth.

8.
“
8
T.
Yura,
Raising
the
child
with
special
needs,
Individual
Psychology:
The
Journal
of
Adlerian
Theory,
Research
&
Practice
39(4)
(1983),
369–379.
M.
Tamm
and
M.
Prellwitz,
If
I
had
a
friend
in
a
wheelchair:
Children’s
thoughts
on
disabilities,
Child:
Care,
Health
&
Development
27(3)
(2001),
223–241.
This treatment can shape a person’s
attitude towards his/her disability and limit what
they are willing to do, regardless of what they are able
to do.
…social isolation can lead to lower
self-esteem in comparison to other children regardless
of their age.

9.
Here are some
truths you need
to hear
9

10.
10
FOR OUR HEARTS:
Honor the bond, but let it become your teaching strategy, not your
impenetrable wall.
PRACTICALLY SPEAKING:
Agencies planning to care for your loved one in the future have
the ability to say no; if you’ve not prepared them to be the best
they can be, they will be given fewer options.
Things like staffing and support levels are determined based on
your reporting of your loved one’s skills prior to arrival; under-
reporting is a serious danger to transition.
WHEN IT’S TIME:
Do NOT expect future caregivers of any kind to replicate exactly
how you are doing things.

11.
11
2 months after transitioning to shared living from a hospital-
based, extremely limiting setting: Nicky’s behaviors went down
by 70%.
8 years later, Nicky has had more experiences, gained more skills,
acquired more language, and built more intimate relationships
than we would ever have guessed.
Than we would ever have allowed.
Than we would ever be brave enough to try.
My Truth

12.
This is a slide
title
× Here you have a list of items
× And some text
× But remember not to overload your
slides with content
Your audience will listen to you or read the
content, but won’t do both.
12
STRATEGIES
Let’s talk about CHANGING caregiver behaviors that become
barriers to progress for citizens with disabilities

13.
Big concept
Bring the attention of your audience over a
key concept using icons or illustrations
13
STRATEGIES
Arm Yourself
• Commit to opening yourself up to vulnerability & truth, & to preparing
for change
• Reach out to others on the journey
• “Parent support groups which allow families to share advice, provide support, and explore resources lessen the
possibility of maladjustment. These groups not only allow the families to have a support group, but they also raise
community awareness of the needs of the persons with disabilities and their families.”*
• Consider therapy
• Get buy-in from the entire household
• Create a plan
*
J.
Pearson
and
A.
Sternberg,
A
mutual-help
project
for
families
of
handicapped
children,
Journal
of
Counseling
and
Development
65
(1986),
213–215.

14.
Big concept
Bring the attention of your audience over a
key concept using icons or illustrations
14
Research a little bit…
• What are the things that typical kids are
expected to do (developmentally and
socially)?*
• Who is in your child’s life, and what skill sets
do they see? What skill deficits do they
identify?
* Resources
https://www.understood.org/en/school-learning/choosing-starting-school/leaving-high-school/6-
independent-living-skills-kids-need-before-moving-away-from-home
https://www.optimumperformanceinstitute.com/failure-to-launch-syndrome/checklist-of-living-skills/
STRATEGIES

15.
Big concept
15
STRATEGIES
• Make a list of the things that you are doing now for your loved one
• For each item:
• Can your loved one do it themselves?
• What is the maximum level they can contribute themselves?
Begin adding these to the routine
• If someone else needs to do it, what should they know?
Think of family members & others who can reinforce these skills
*
J.
Pearson
and
A.
Sternberg,
A
mutual-help
project
for
families
of
handicapped
children,
Journal
of
Counseling
and
Development
65
(1986),
213–215.
Create a
Plan

16.
Big concept
16
STRATEGIES
• Make a list of the things that are expected in their adult setting
(even if it’s HOME!)
• Begin incorporating those skills into the current setting
Examples: personal care, showering, dressing/undressing, getting up, getting to bed,
laundry, housekeeping
• Practice social and communication skills at the adult level
Examples: “checking in” with the loved one the way we do with friends, reciprocal
conversation, yes and no
• Shoot for maximum person-centered acquisition of skills, not
mastery
REMEMBER: Skill sets for a person moving into an apartment are different
than those going into a care setting (group home/shared living)
*
J.
Pearson
and
A.
Sternberg,
A
mutual-help
project
for
families
of
handicapped
children,
Journal
of
Counseling
and
Development
65
(1986),
213–215.
Create a
Plan

17.
17
The
Sabotage
Game

18.
18
Link to the Sabotage Game Document (all rights reserved)
https://www.dropbox.com/s/64s5lm519jtofjp/CRCPCP%20Sabotage
%20Game%20doc.pdf?dl=0
• J & the change in bus drivers
The lesson: teach flexibility
• N & the pretty lady in the train station
The lesson: apply the Sabotage method
• S & the woman who wanted to bleach her hair
The lesson: allow the dignity of risk, make it a
teachable moment

19.
19
ALL OF THIS takes time and effort and INTENTION beyond what we
do for our other children or family members.
Putting in the commitment, time
& work means
The Flipside

20.
20
FEWER
HEALTH
ISSUES
More chance of
STABILITY, which
fosters even more
progress
Building
blocks for
positive,
healthy,
happy,
meaningful
RELATION-
SHIPS WITH
OTHERS
A well-
prepared
young
adult with
all sorts of
options for
living &
working
A healthy relationship between you and your
loved one, that sends a message to future caregivers
that you are a positive team member
HAPPINESS
CONFIDENCE &
SELF-ESTEEM

21.
✋👆👉👍👤👦👧👨👩👪💃🏃💑❤😂😉
😋😒😭👶😸🐟🍒🍔💣📌📖🔨🎃🎈🎨🏈
🏰🌏🔌🔑 and many more...
21
Now you can use any emoji as an icon!
And of course it resizes without losing quality and you can change the color.
How? Follow Google instructions
https://twitter.com/googledocs/status/730087240156643328
Sometimes
The most difficult conversations
The most painful memories
The most shocking revelations
Are the ones that make us better.
You are NOT alone
Keep loving FIERCELY
Keep teaching DAILY
Keep pushing LOVINGLY
And watch your loved one FLY!
www.personcenteredplanning.com
cherylryanchan@gmail.com
https://www.slideshare.
net/cherylryanchan/stop
-it-caregiver-behaviors-
that-are-barriers-to-
progress/secret/jnWI3I0
uV5JFck
THESE
SLIDES CAN
BE FOUND
AT:

22.
22
Special thanks to all the people who made and
released these awesome resources for free:
× Lady Mortimer and Eglamour presentation
templates by SlidesCarnival
× Photographs by Unsplash and The Gender
Spectrum Collection
Where it’s due: