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A
A
A
Present,
thank
you.
We
are.
We
have
a
quorum,
so
we
are
duly
constituted
to
move
forward
with
our
meeting.
Does
anyone
in
the
on
the
committee
have
any
special
guests
they'd
like
to
announce
are
welcome
representative
rocks.
C
A
A
A
A
D
D
All
right,
what
I'm
here
to
talk
about
today
is:
is
this
bill
and
it's
Bill's
about
a
medical
procedure.
Discrimination
four
states
have
already
passed
this
law
and
others
are
pending
as
we
meet
here
today.
Individuals
with
disabilities
routinely
face
discrimination
and
health
care
from
consultations
to
referrals
and
all
the
way
to
determination
of
Eligibility
and
placement
on
waiting
lists.
D
D
E
F
Members
of
the
committee,
the
representative
Williams,
thank
you
for
the
opportunity
to
speak
here
today.
My
husband,
my
daughter,
Quinn
and
I-
are
residents
of
Frankfort.
Quinn
is
11
years
old
and
she's
the
absolute
center
of
our
universe.
Shortly
after
Quinn
turned
one,
she
was
diagnosed
with
wolf
hirshhorn
syndrome.
This
syndrome
affects
one
in
50,
000
individuals
and
due
to
various
medical
complexities,
one
in
three
children
do
not
survive
until
the
age
of
two.
This
particular
rare
disease
has
affected
her
in
many
ways.
F
It
includes
severe
growth
and
intellectual
disability,
chronic
kidney
disease
and
epilepsy,
while
I'm
grateful
for
the
advancement
in
medical
technology
which
allows
individuals
like
Quinn
to
survive
and
thrive,
I'm
also
concerned
about
what
the
future
will
hold
for
her.
Her
kidneys
are
currently
functioning
at
30
percent.
The
chances
are
slim
that
we
will
not
have
to
pursue
a
kidney
transplant
in
her
future.
All
across
the
Commonwealth
individuals
like
Quinn
May
someday
need
an
organ
transplant.
F
In
its
current
form,
the
guidelines
for
allocation
of
an
organ
does
not
mention
protections
for
individuals
with
disabilities
and
I
quote
allocation
of
a
deceased
donor.
Organ
must
not
be
influenced
positively
or
negatively
by
political
influence,
national
origin,
ethnicity,
sex
religion
or
financial
status.
No
mention
of
disabilities
in
2012,
a
child
with
wolf
hirshhorn
syndrome
was
directly
affected
by
this
type
of
discrimination.
F
Her
family
was
told
by
the
Children's
Hospital
of
Philadelphia,
which
is
the
number
four
Children's
Hospital
in
America
that
their
daughter
did
not
qualify
for
a
kidney
transplant
because
she
was
quote
mentally
and
does
not
have
the
quality
of
life
to
justify
the
transplant.
The
kicker
her
mother
was
her
match.
Our
family
directly
understands
the
impact
and
importance
of
organ
transplant.
As
my
father-in-law
was
a
kidney
recipient
in
1981
at
the
age
of
26.,
although
not
impacted
with
disabilities,
he
went
on
to
enjoy
29
more
years
of
life.
F
F
E
All
right
good
morning,
my
name
is
Danny
Slayton
I'm,
a
lobbyist
with
Top
Chef
lobby,
but
today
I'm
here
on
behalf
of
the
downstream
to
Louisville
I'm,
the
vice
president
of
the
Board
of
Trustees
of
down
syndrome.
Louisville
we
served,
which
is
a
wonderful
advocacy
in
education
and
service
provider
in
Louisville.
We
serve
serve
the
community
of
individuals
with
Down
syndrome
and
their
families
in
and
friends,
in
Jefferson
County
and
surrounding
counties.
E
I
also
serve
as
the
Secretary
of
the
State
advisory
panel
for
exceptional
children,
which
is
a
committee
that
advises
the
Kentucky
Department
of
Education
on
unmet
needs
of
students
with
disabilities.
I
have
a
seven-year-old
daughter
with
Down
syndrome
and
I'm
happy
to
say
at
the
moment,
she's
very
healthy
and
she's
a
thriving
first
grader,
but
many
of
our
children
are
adults
with
Down.
Syndrome
have
complicated
heart
issues,
lung
issues,
kidney
issues
and
any
other
Myriad
issues
that
plague
the
rest
of
us
as
well.
E
Last
night,
I
emailed
a
story
to
you
guys,
I
wanted
to
kind
of
keep
my
comments
short
because
I
know
time
is
short
here
in
Frankfurt
it
was
an
abbreviated
story
of
Madison.
Do
guys's
life
I,
won't
repeat
that
story,
but
except
to
say
that
she
was.
She
was
very
lucky
to
have
a
great
transplant
cardiologist
and
she
was
only
on
the
transplant
list
for
a
few
months
and
obviously
she's
three
years
old,
she's,
actually
two
years
past
her
transplant
and
still
doing
great.
E
But
of
course,
the
transplant
like
that
is
not
a
fix
for
everything
and
has
a
lot
of
side
effects.
Some
of
the
anti-rejection
medicine
is
kind
of
wrecking
her
little
kidneys
and
she
has
a
she's
on
oxygen.