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STOP IT!
Let’s talk about caregiver behaviors that become barriers to progress for citizens with
disabilities
presented by
www.personcenteredplanning.com
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
Me first!
3
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
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
“
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
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
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.
Here are some
truths you need
to hear
9
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
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
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
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.
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
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
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
The
Sabotage
Game
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
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
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
✋👆👉👍👤👦👧👨👩👪💃🏃💑❤😂😉
😋😒😭👶😸🐟🍒🍔💣📌📖🔨🎃🎈🎨🏈
🏰🌏🔌🔑 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
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:

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STOP IT! Caregiver behaviors that are barriers to progress

  • 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
  • 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
  • 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: