[MUSIC] I'm very happy to be here.
Thank you so much for having me.
Actually, my new title is Director of Clinical Support.
My name is Karen Bohall-Ortega and as mentioned,
I'm from Support for Families of
Children with Disabilities in San Francisco.
I'm a licensed marriage and family therapist
and a proud parent of two little kids.
I wanted to start by saying,
not only am I thankful for coming here today,
but I wanted to talk a bit about what we learned
through our ACEs aware project at support for families.
In particular, in regards to adversity,
trauma, family-driven support,
and the use of the PEARLS screening.
Quick plug for support for families since I've heard
it come up just in the last five minutes, a few times.
We're a community-based agency
supporting families, children,
and youth impacted by diverse abilities,
disabilities, and special health care needs.
We offer support for families through
parent-to-parent mentoring, advocacy opportunities,
and actually educational support for
not only our families but for
community-based providers as well.
For today, there are no disclosures,
no financial or non-financial relationships to disclose.
For our ACEs project,
at Support for Families,
we actually embarked in an ACEs aware project last year.
I imagine most folks are aware of what ACEs are,
adverse childhood experiences, and the PEARLS,
which is the pediatric ACEs
and related life events screener.
For folks who are a little bit less familiar,
I wanted to let you know that these screening tools,
they help us gauge
the cumulative adversity that
someone has experienced over time.
What we know is that high levels of cumulative adversity
often lead to negative health outcomes
later in one's life,
so being able to screen for adversity is key to
helping us link folks to the support that they need.
As a grantee for the ACEs aware initiative,
we worked collectively with UCSF, general hospital,
and a group of diverse families to develop
a training series focused on
understanding how families, children,
and youth impacted by disability are often
impacted by ACEs and risk factors for toxic stress.
How to use this information as well as
best practices within the disability service system,
and the importance of
highlighting the family perspective and
family stories throughout that process in order
to enhance parent-provider relationships.
Why us?
I think it's important to acknowledge that when we think
about ACEs and PEARLS screening, why us?
Why include a disability service provider
in this conversation?
Why include folks who
experience disability in this conversation?
I wanted to point out,
12 percent of children and youth have a diverse ability,
disability, or special health care needs.
That's more than one in 10 children.
Chances are that a lot of folks
are actually supporting, encountering,
and it's serving more folks
impacted by disability than we might think.
Even more so,
this ability impacts all communities, race,
sexual orientation, class, education,
religion, tribal affiliation, and other identities.
Often, folks within the disability community,
they face high levels of
adversity which I'll explain more on the next slide.
Children and youth are impacted by
disability and they often, as I said,
have a higher risk to encounter adversity and
trauma than their typically developing peers.
This list is not exhaustive,
but I want it to go through some of
the reasons why we often see that.
A child or youth with
a disability may be socially isolated,
have difficulty communicating and connecting with others.
They might rely on assistance with the most
intimate of personal hygiene activities,
and sadly, this often offers
more opportunity for perpetrators
to enact, abuse, and neglect.
Children and youth may encounter
food and housing instability,
as well as financial insecurity.
When we think about the cost of
services that are provided and the potential
loss of income for
our caregivers while they have to go and
attend to all of these appointments and pick
their children up and leave work to do that,
it definitely can have a financial impact on families.
A child or youth might live in
a household with high levels of family stress.
When we think about living with someone
who's impacted by disability,
it can be challenging on family dynamics,
on siblings, on parental relationships,
and especially when we see
behavioral challenges that are presented for the child.
Also, children and youth with
disabilities might encounter discrimination,
bullying associated with the disability,
or other existing identities.
Lastly, I wanted to point out that when we deal with
chronic medical conditions or medical complexity,
that can result in a crisis or
need to go to seek medical care often,
which can be really traumatizing in
itself for a lot of families.
ACEs screening to PEARLS.
When we think about ACEs screening in PEARLS,
I wanted to highlight why the use of
the PEARLS screening is so
important in the disability community.
On the left we have our 10 traditionally identified ACEs.
It's really common for us to see
experiences of abuse, neglect,
and household challenges in the families we
serve for many reasons described in the previous slide,
but what makes the PEARLS
unique is Part 2 of the screener,
in particular the community aspect.
Unlike the ACEs screening for adults,
the PEARLS actually extends the experiences beyond
the traditional 10 ACEs to include bullying,
discrimination, and food housing instability.
When we think about the use of the PEARLS,
we are now able to actually account
for these important factors so that we can
start to begin taking them into consideration as we
work with our families to secure the needed support.
Intersectionality, when we
start thinking about this community aspect,
as just mentioned, it elevates that
intersectionality has a place in the PEARLS.
We know that disability crosses
all communities and that children, youth,
and families impacted by
disability often hold multiple identities.
I want to say this, in fact,
having a disability is often an identity in itself.
I know a lot of times it's person first language,
but we had a lot of folks who also
identify as an autistic person.
Sometimes that disability itself
can be seen as an identity for someone.
This is where the intersection comes into play,
which I'll touch on a bit more in a moment.
Ableism. I want to take a moment to talk about ableism.
I think a lot of us understand it but
don't always name it in that way.
Ableism it's the belief that
a fully functioning body and
mind are the norm for human being,
and it impacts individuals much like racism does.
It comes in many forms,
and most commonly we look at ableism in terms of
physical environment and
society's expectations and norms.
When I think about the physical environment piece,
we often see in accessibility,
so trouble getting into a building,
lack of universal design and transportation.
An example, I still live in a community that
doesn't have sloped corners on the sidewalks,
and with folks who are utilizing
a wheelchair or mobility needs,
sometimes they have to go
an additional three to four blocks just
to get to a place where they can cross the street.
When we shift to societal expectations and norms,
that's when people start to place judgment on
folks who don't appear in a certain way,
who don't behave in a way that's expected,
who maybe don't communicate how
we expect folks to communicate,
and even sometimes the way that we
think or process things is
seen as different than
the mainstream culture which is judged by others.
When we think about ableism,
especially in children and youth discrimination,
bullying, coming out from the judgment of others
and being put on the folks who have the disability.
When you combine ableism and racism,
so that's that intersectionality piece,
our families who hold multiple identities,
they grapple with overt and implicit bias from others.
This can actually come from providers and systems
that are meant to help but instead actually harm.
We often see this in challenges with language barriers,
both access to written materials
in one's native language,
and access to timely interpretation.
We see families sometimes
wait when it comes to an IEP or something like that,
months before they're able to get
an interpreter or the paperwork in their native language.
Lack of flexible employment to
attend appointments which I mentioned before,
and the preschool to prison pipeline,
where young children of color,
in particular, with disabilities,
are often expelled, suspended,
or not given access to needed early care,
which then has a detrimental effect
on long-term outcomes.
I wanted to take a moment to actually share
a story from one of the families who
participated in this project.
I'm going to introduce you to Donia Maria Sanchez.
She is a mother and advocate and
insightful leader that worked on our project.
She and her son Pedro,
they've been navigating service systems for years
and had been impacted by ableism and racism.
I want to point out in this video,
Maria will make reference to the levels of anxiety felt
throughout her family due to
Pedro's special health care needs,
the impact that language and
immigration status has had
on her experience of the health care system.
Maria will also spotlight the importance of
asking families about adversity,
and will mention helpful strategies to
support families in this process. [MUSIC]
[MUSIC] My name is Maria Sanchez and I have two kids,
one daughter, 20,
and my son who is 18, has cerebral palsy.
We live in San Francisco.
I have been living here
26 years when I came from my country.
Pedro is so special because since he was a baby,
he never gave up.
He was always trying to progress himself.
Sorry about that. It stopped on me. There we go.
An inch for him, his path
he now is walking without my hand.
He's using a power wheelchair,
and he drive himself.
When he was little baby,
we went to the emergency room like
a onetime a week, because he cannot breath.
But the problem was when I get
to urgent care or emergency room,
sometimes there was people that don't speak
Spanish and at that time I
don't speak any word in English.
Only word I remember now,
it was like, I'm sorry,
you have to wait for a translator
because every time I go see a doctor,
I have to explain again and again the same situation.
It takes time to explain
everything and since he had anxiety.
He is not able to stay full-time in school,
and I have to be around just in
case something happen or if he make
a tantrum and also I have to
include my daughter when she was little.
She never told me until now that she's a grown-up,
that her classmates make fun of Pedro.
She was like seven and she keep it to herself.
But it really affects her.
She started with uncertainty when she was 12.
Thankfully we got help.
I know my stress,
and when he was 14,
I started having really bad anxiety attacks,
panic attacks,
and I was like nothing happened to me,
I'm okay, but there is
a point when you had to see a doctor.
We don't accept that.
It's hard because we cover our pain,
our needs because our kid needs our full attention.
But since I got more sick and more sick with anxiety,
finally, I went to the doctor.
They got a referral for me to see a therapist
and I'm seeing this therapist only
for four years and Pedro is 18.
I have a lot of work to do.
It's going to take time to heal.
I remember seeing another mom
that my sister comes and help
me or somebody comes in and do the job for me.
I have nobody.
For real this was nobody around me.
I think my marriage was already
broken when Pedro was born,
but I was not in a happy marriage.
I have some domestic violence.
Finally, and thankfully, we got separate.
He don't really understand the situation,
so I had to do it myself.
I remember when Pedro was a baby
before they asked you if you're doing okay,
they give you a questionnaire and they always
put it like how you feel in the memory.
If we think Pedro is in danger,
we had to call the police.
Before they really ask you person to person say,
how are you doing, first,
they give you this paper and it's
like something like don't tell me anything.
Don't tell me that you're so tired,
don't tell me that you don't sleep for two days.
Because if you tell me that I'm going to call the CPS.
The thing that scare me most
was during the time when I don't have the papers,
there was always a rumor that if immigration got you,
and Pedro and Maria,
they're USA citizen, they will take them away from me.
I had to deal this for years and years,
and I was trying to avoid going places
because I was so scared
that they're going to take my son from me.
I think that's why we
need to start having these relationships.
There's going to be a point like right
now with my doctor that I
can call doctor and say this is happening,
and the doctor would say,
okay, what do you need me to do?
I wish all the doctors is like this doctor because
he really provide everything needs right now.
But you had to think about that Pedro's almost 19.
It was not happening when he was a little boy.
I think I got it because with time in
my work and my effort to advocate for Pedro,
but not everybody is able to
do that because some people,
the language barrier, I feel like
maybe the doctors can tell you that,
don't worry, I'm here.
I'm going to be for you here,
and maybe we can open up.
If one of the doctors they are watching this gets
something from my experience
and use it in another new families,
I will be happy.
I wish I got this kind of help when Pedro was a baby.
We love our kids. Oh, yeah,
we love them but it's hard.
Every time I see that I love Maria.
Through the family voice,
this was crucial to our project.
Lifting up family voice and stories,
and some major themes really
came to light when we're thinking about
what families believe providers should
know before using the PEARLS screening.
First, families of children
and youth with diverse abilities,
special health care needs,
they already hold a level of elevated fear of CPS.
As Maria mentioned, will they take my child away?
Will they take them away because they have a disability?
Did I cause the disability?
If I mentioned adversity,
does it make me seem unfit as a parent?
Secondly, they wanted folks to know
that historical treatment by
the health care system, it impacts trust.
In particular, communities of
color that had been mistreated,
experienced disparities in service,
or it felt unheard or
seen by their health care system are
fearful of engaging in
conversations around adversity and trauma.
Lastly, ableism and racism,
they fuel how families are seen by others,
and families are aware of this.
It's something that they deal with and encounter daily.
What do families need during
the PEARLS screening process?
Our family spoke about authenticity from professionals.
So warmth and genuineness.
They looked at, is my child's provider kind?
Do they seem to genuinely care about their well-being?
They wanted to see transparency and openness,
and that was mentioned by Maria.
Where will the information go in a PEARL screening,
how will it be used?
Folks are reluctant to giving
accurate information unless they know where it'll go,
how it'll be used,
does it stay in my medical file.
Many of the families felt
much more comfortable agreeing to
provide de-identified results on a screener.
The number of adverse experiences can be recorded,
but the specific experiences are actually not identified.
From what we know in ACEs research,
the most important aspect is understanding
the level of cumulative adversity,
but not necessarily the particular ACE.
This works just as well.
Families expressed the desire to have time to
talk and to ask questions without feeling rushed.
I liken this to a tuning to
the caregiver and the child's pace.
Understanding that discussing trauma,
discussing diversity, it takes
time and it takes thoughtful dialogue.
Families want to be respected as caregivers.
Families are coming to providers
to seek medical expertise,
but families hold the expertise for their children.
It's important for providers to
show a balance of concern and
support for both the child and the caregiver's wellness.
I always work from the perspective that to help a child,
you have to help the family because they are a unit.
Families felt that a focus on their strengths was vital,
and instead of feeling like they're
failing in the eyes of others,
they feel uplifted when their strengths are seen.
Then lastly, families wanted to feel
a sense of hope that things can get better.
I hope the information presented
today is something that folks will sit with,
consider as we start to
normalize the use of PEARLS screening.
This information came from families
and it provides a real context for
what many folks within
the disability community experience
and need in their care.
I'd like to leave you with this quote
from one of the families in our project,
and I highlight this because it's very
similar to what Maria mentioned in her video.
I truly believe that we can transform the way
we do things to create a positive experience,
while we also discuss
some extremely challenging life experiences such as ACEs.
If I can change
one person's experience by sharing my story and needs,
then I've done what I came here to do.
Thank you for listening to me today and
having me in this space [MUSIC]