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THE ASTORIAN • SATURDAY, SEPTEMBER 28, 2019
Bebeto Matthews/AP Photo
Flavored vaping solutions are shown in a window display
at a vape and smoke shop in New York. Washington is
joining several other states in banning the sale of fl avored
vaping products amid concern over the mysterious lung
illness that has sickened hundreds of people and killed
more than a dozen across the country.
Austin Jenkins/Northwest News Network
Lindsey Topping-Schuetz holds her nearly 3-year-old son Owen who qualifi es for developmental disabilities services but has
been denied them because of a lack of state funding.
Many developmentally disabled
Washingtonians are denied services
By AUSTIN JENKINS
Northwest News Network
Three years ago, Lindsey
Topping-Schuetz became a
fi rst-time mother when her
son Owen was born. He was
six weeks early and went
immediately to the neonatal
intensive care unit, where he
spent the next 103 days.
But that was just the
beginning of Owen’s chal-
lenges and the family’s
stresses. Owen was born
with two rare chromo-
somal abnormalities, includ-
ing Cri-du-chat syndrome,
also known as “cat’s cry”
syndrome.
In the short-term, Owen
required around-the-clock
care. He came home from
the hospital attached to mon-
itors and a feeding tube.
In the long term, he faced
a lifetime of physical and
cognitive limitations that
would likely require inten-
sive care and therapies. He
might never walk or talk.
During Owen’s fi rst year
at home, Topping-Schuetz
requested services through
Washington’s Developmen-
tal Disabilities Administra-
tion (DDA). In 2018, when
Owen was 2 years old, he
was evaluated and found
to meet DDA eligibility. In
fact, Owen was determined
to have such acute needs
that he technically qualifi es
for institutional-level care,
which can be an entitlement
in Washington.
But there was never any
question that his family
wanted to care for him at
home. Subsequently, a case
manager determined that
Owen and his family would
benefi t from services such
as in-home nursing care,
respite care and special-
ized medical equipment and
supplies.
Then came the surprise:
even though Owen was
qualifi ed, there were no paid
services available because
the Medicaid waiver pro-
gram they were applying
for, known as Basic Plus,
was capped.
“I had no idea that you
could have a child that was
so signifi cantly disabled
with a black-and-white diag-
nosis and for the state to not
do more to provide support,”
said Topping-Schuetz.
Topping-Schuetz
and
her family were not alone.
The state of Washington has
more than 13,000 develop-
mentally disabled people on
its “No Paid Services Case-
load.” About half of them
are children. They are indi-
viduals, like Owen, who
meet the criteria for state
services but don’t get them
because the waivers are not
an entitlement. The caseload
also includes people who
viduals that are coming
through our doors,” Perez
said.
It’s not a new problem.
Since at least the 1990s,
demand for communi-
ty-based DDA services in
Washington has exceeded
funding. After the U.S.
Supreme Court ruled in
1999 that people with devel-
opmental disabilities should
be served in the community,
in the least restrictive envi-
ronment, lawsuits were fi led
against the state, including
by the Arc of Washington,
an advocacy group. That
lawsuit was settled in 2007,
with a promise by the state
to increase funding for com-
munity-based supports.
‘WE DIDN’T WANT OR EXPECT
THAT THE STATE WOULD JUST
TAKE CARE OF US, BUT WE HAD
HOPED THAT THEY WOULD
SUPPORT US TO PROVIDE A
BETTER AND BEST LIFE FOR
OWEN, SO I GO BETWEEN
MAD AND SAD AND SCARED.’
Lindsey Topping-Schuetz
have not requested or have
declined services, according
to DDA.
“We have a certain num-
ber of waivers that are
funded and that’s what we
have to stay within,” said
Evelyn Perez, the assis-
tant secretary who oversees
the DDA at the Washington
Department of Social and
Health Services.
Perez recently told a
panel of state lawmakers
that demand for these ser-
vices is growing by more
than 10% a year.
“We don’t come even
close to the amount of indi-
facebook.com/dailyastorian
But the problem didn’t
go away. By 2014, The Seat-
tle Times reported the “No
Paid Services Caseload” had
swelled to 14,600 people.
That same year, Washington
lawmakers funded an addi-
tional 5,000 slots with one-
time money.
Since then, the state
has continued to grow and
demand for services has not
let up. Washington currently
ranks 30th in the nation for
developmental disability ser-
vices, according to a 2019
report called “The Case for
Inclusion.” By contrast, Ore-
gon, where services are an
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entitlement for those who
meet eligibility requirements,
ranks second in the nation.
“After a while, you get
sort of angry because you
see how state government
supports other people and
the system for people with
developmental disabilities
just stays,” said Sue Elliott,
the former head of DDA who
is now the executive director
of the Arc of Washington.
After Owen was born,
Topping-Schuetz quit her
job at Weyerhaeuser to stay
home with him. Her hus-
band, Ben, works for the
city of Tacoma. In many
ways, Topping-Schuetz said,
they’re lucky. The family has
good health insurance. They
have extended family nearby.
Still, there have been fi nan-
cial challenges. And attend-
ing to Owen’s special needs
can feel overwhelming at
times.
“It’s exhausting. I’m
tired. It’s a 24/7 gig,” Top-
ping-Schuetz said.
Caring for Owen requires
her to wear several hats –
she’s his mother, his nurse
and his therapist.
“We didn’t want or expect
that the state would just take
care of us, but we had hoped
that they would support us to
provide a better and best life
for Owen, so I go between
mad and sad and scared,”
Topping-Schuetz said.
It’s unclear how long the
family might have to wait
for services. This past June,
the family’s DDA case man-
ager wrote in an email to
them: “Everyone who has
been requesting the Basic
Plus has been getting denied,
unfortunately.”
In the meantime, Owen
will turn 3 this month and
begin a developmental pre-
school through the Puyallup
School District. He’ll go for
two-and-a-half hours a day,
four times a week. It will
be his mother’s fi rst regu-
lar break from being his full-
time caregiver since he left
the neonatal intensive care
unit as an infant.
Washington state
issues fl avored
vaping ban
By GENE JOHNSON
Associated Press
Washington on Fri-
day joined several other
states in banning the sale
of fl avored vaping prod-
ucts amid concern over
the mysterious lung illness
that has sickened hundreds
of people and killed about
a dozen across the country.
Gov. Jay Inslee issued
an executive order asking
the Department of Health
to issue the emergency rule
at its next meeting, sched-
uled for Oct. 9. The ban
will apply to products con-
taining nicotine as well as
the cannabis extract THC.
Inslee said the fl avored
products especially appeal
to youth.
“We need to act for the
public health of our peo-
ple,” said Inslee, a Dem-
ocrat. “I’m confi dent this
executive order will save
lives.”
The ban is necessary
because even if a vap-
ing ingredient or com-
pound were conclusively
linked to the illnesses, the
state would have no way
to identify which prod-
ucts contain the substance
so they could be removed
from store shelves, Inslee
said.
President
Donald
Trump has said he plans
to ban fl avored vaping
products nationally. New
York, Michigan and Rhode
Island are among the states
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that have announced at
least temporary bans,
while offi cials in Oregon
and California have urged
consumers to stop using
them. Massachusetts has
gone the farthest, issuing a
four-month ban on all vap-
ing products — fl avored or
not.
Inslee also ordered
health offi cials to work
with the state’s Liquor and
Cannabis Board to develop
legislation to increase
oversight of vapor prod-
ucts, including requiring
the disclosure of ingredi-
ents and increasing spend-
ing on anti-vaping cam-
paigns aimed at teens.
More than 500 cases
of the illness have been
reported across the U.S.
The Centers for Disease
Control and Prevention is
investigating but has not
yet identifi ed a common
product or ingredient as the
culprit.
This week, Juul Labs,
the San Francisco-based
company that controls
about 70% of the vaping
market, announced it is
replacing its CEO and will
no longer run TV, print or
digital advertisements for
its e-cigarettes. The com-
pany also promised not to
lobby against a proposed
U.S. ban on fl avors.
Symptoms of the vap-
ing illness can include
chest pain, nausea, vomit-
ing, diarrhea, fatigue, fever
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