COTTAGE GROVE SENTINEL • OCTOBER 3, 2018 • 9A
Future
from A1
protected by the bush of his eye-
brows and the bill of his cap, still
squint against the summer sun
that hasn’t quite yielded to the
last days of September.
He’s on a tight schedule; he
has to get to one of the dozens of
organizations around town that
rely on him to distribute their fl i-
ers advertising everything from
community meals to plays to
non-profi t fundraisers.
“If you say, ‘the guy who pass-
es out the fl iers’ everyone knows
him.”
Dave Johnson hasn’t known
Grant as long as his wife, Wan-
da, has, but together they’ve
been looking aft er him. But, that
wasn’t the plan. Both of Grant’s
parents left behind specifi c in-
structions and safety nets for
their only child: His father con-
jured a deal to allow Grant to stay
in the house with the stipulation
that the local Masons and Shri-
ners share the responsibility of
ensuring Grant’s health and safe-
ty along with a trustee; his moth-
er set aside money in accounts
Grant could access aft er she was
gone.
His mother died in 1992, his
father in 2001. Grant has out-
lived the trustee appointed in his
father’s will and nearly all of the
money is gone.
“No one expected him to live
this long,” Johnson said, noting a
developmental disability. “Th ey
thought, planned another 10
years.”
According to the Oregon Of-
fi ce on Disability and Health
(OODH), nearly 700,000 people
in the state are living with a dis-
ability — one-fi ft h of them adults
over the age of 18 who qualify for
services through the state in the
form of third-party individuals
or, more commonly, aids to as-
sist family members in their care.
But what happens when parents
begin to age and children living
with a disability require more
care than they are able to pro-
vide?
pointments Michael’s condition
warrants, including visits to an
endocrinologist, urologist, dieti-
tians, neurologists and therapies
from swimming and — soon —
horseback riding.
It was part of the plan when
they adopted Michael; how to
manage his condition and plan-
ning continues to play a part in
the couple’s approach to their
miracle baby. Michael can’t quite
hold his head up on his own like
other babies his age and hasn’t yet
spoken his fi rst word, but Rachel
says there’s no way to tell how se-
vere his case is until he’s older.
“If you google his condition
you will see the worst cases but
children with Prader-Willi go to
college and they might just need
someone to live with them to
monitor their eating. And then
there are the cases where they
have to live in a group living fa-
cility,” she said.
So, they’re planning for every-
thing.
Michael’s grandparents, who
joined a group for grandparents
of children with Prader-Willi,
are listed as his guardians should
something happen to his parents.
Meanwhile, Rachel and Aaron
have begun to prepare for him
fi nancially.
But even that takes planning.
“People will tell you he will
qualify for this program or treat-
ment. Th en you call social secu-
rity or Medicaid and he doesn’t
because I make too much mon-
ey,” she said. “Do we have family
members that will help take care
of him? Yes. When he’s 18, will
we apply for him for Medicaid?
Yes, because they don’t take our
assets into account. We have
looked at diff erent places, there
M
ichael is his parents’ 10-
year miracle. Rachel and
Aaron had tried fertility treat-
ments, foster care adoptions
and had been scammed for
thousands of dollars aft er an
adoption fell through on their
road to becoming parents be-
fore Rachel found an ad for an
adoption agency that specialized
in placing children with disabili-
ties. Th eir son Michael, not quite
a year old, came home when he
was two months old. Soon aft er,
the couple dove head fi rst into
the support systems and research
surrounding Prader-Willi Syn-
drome.
“When we fi rst got him he
had failure to thrive, he was very
weak,” Rachel said. “We were
open, when we lived in Oregon.
We had taken the classes and
were registered to adopt through
foster care, so we were open to
children with special needs.”
Prader-Willi Syndrome is a
genetic disorder that can cause
mild to moderate intellectual
impairment and an insatiable
appetite.
“In the more severe cases, fam-
ilies will lock their refrigerators
and pantries because they can eat
themselves to death,” Rachel said.
Th e couple now lives in Kan-
sas and juggles the dozens of ap-
are post high school places and
living facilities. But the hardest
part, really, has been dealing with
social security, Medicaid and
health insurance.”
Wanda found out Grant had
supplemental health insurance
by accident. Wanda knew Grant’s
mother — they went to the same
church—and for the last few
years she has been taking him to
doctor’s appointments and look-
ing aft er him. She’s taken him to
the social security offi ce to try
and have his monthly payment
increased, arguing with tele-
phone providers for him over the
cost of his bill.
“I took my phone down to the
offi ce and asked them how I’m
supposed to press ‘1’,” Grant said,
relaying a story about his missed
doctor’s appointments due to his
inability to confi rm them on his
rotary phone. Wanda and Dave
got him a push-button line hard-
wired in, in case of an emergency
that interrupts cell phone service.
Grant had seizures as a child,
something Wanda attributes to
his premature birth, and was
placed on medication aft er he
passed out walking home one
day on the Swinging Bridge.
“Th e doctor told him when
he was 40 he could come off the
medication and he remembered
that. So when he turned 40, he
stopped it,” Dave said. Th ere ha-
ven’t been any noticeable side ef-
fects for the last 30 years and, at
70, Grant takes only one pill a day
aft er fi ghting cancer somewhere
around 2001-2002, he says.
“I didn’t know that,” Wanda
said about the diagnosis, “So
now, we don’t miss that check-up
either.”
Grant’s father’s will only named
one guardian — a local man who
has since passed away — and,
according to the Johnsons, who
are both over 50, there’s nothing
in place if Grant should outlive
them as well.
“It comes down to planning.”
Katrina Anderson works for Full
Access, a brokerage for the state
of Oregon that provides services
for adults over the age of 18 with
physical or developmental dis-
abilities. Full Access is one of sev-
eral brokerages around the state,
a result of a 2002 lawsuit from
families who had been waiting
— in some cases more than a de-
cade — for services aft er apply-
ing through the state.
“I can’t count the number of
times you meet with a family and
it’s all about, ‘Ok, do we have a
back-up plan? What is going to
happen? Do you know some-
body who can step in?’ It’s just
working with the families on a
regular basis to get that pre-plan-
ning piece.”
But what happens when a fam-
ily’s plan runs out before their
child is no longer in need of ser-
vices? According to Anderson,
it happens and Full Access has
placed individuals on emergency
situations, working with ODDS.
"Th ey're services are not de-
pendent on whether their par-
ents are alive," said Sherryll
Hoar of Oregon Health and
Human Services. Individuals
with disabilities apply through
their counties for services-some-
times as children and once they
reach adulthood, those services
transition with them. However,
services are individualized and
if a person was relying on their
parent to remain in their home,
the results of an assessment will
determine the individual's needs
which could range from trans-
portation to work, an in-home
aide or help entering an adult
foster care or group home.
G
rant's family did have a
plan, though according
to the Johnsons it was hindered
by a generational norm to deny a
diagnosis by his father. Now, the
couple is simply trying to fi nd a
way to make the parties named
in the will his father left behind
abide by the terms to ensure the
taxes are paid on the property so
Grant can stay.
"I don't care if they come here
and shoot me," Grant said. "I'm
not leaving this house."
For Rachel and Aaron, they're
depending on the plan; Michael
has family both in Kansas and
Cottage Grove who are willing to
step in, and his parents are saving
for his future. And while making
plans for her child 20 years into
the future is diffi cult, Rachel says
it's more than that.
"Planning for kindergarten is
hard. It's a lot of what's looking
into what's safe for him because
sugar for a kid with Prader-Willi
is like crack," she said. "Yes, there
are challenges but he's brought
such joy to our lives and he's the
cutest kid ever. It's such a ran-
dom mutation that, even if he
was ours biologically, it could
have happened. But he's just an
amazing kid and he has a bright
future ahead of him."
Editor’s note: Last names
were withheld to protect Michael’s
in-progress adoption and to
ensure Grant’s privacy in regard
to potential future services or
actions his situation may
warrant.
Worship
Directory
DRAIN:
HOPE U.M.C.
131 W “A” St. Drain, OR
541-315-1617
Pastor: Lura Kidner-Miesen
Fellowship & Song: 11:30am
Potluck Lunch: 12:00pm
Worship: 12:30pm
Delight Valley
Church of Christ
33087 Saginaw Rd. East
541-942-7711
Pastor: Bob Friend
Two Services:
9am - Classic in the Chapel
10:30am - Contemporary in the
Auditorium
COTTAGE GROVE:
6th & Gibbs Church of Christ
195 N. 6th St. • 541-942-3822
Pastor: Aaron Earlywine
9:00am & 10:30am
Christian Education:
Pre-K through 5th
www.6thandgibbs.com
First Baptist Church
301 S. 6th st • 541-942-8242
Interim Pastor: Reed Webster
Sunday School 9:30am
Worship Service 11:00am
Youth Wednesday 6:30pm
cgfi rstbaptist.com
Calvary Baptist Church
77873 S 6th St • 541-942-4290
Pastor: Riley Hendricks
Sunday School: 9:45am
Worship: 11:00am
The Journey: Sunday 5:00pm
Praying Thru Life: Wednesday 6:00pm
First Presbyterian Church
3rd and Adams St
541-942-4479
Rev.: Karen Hill
Worship: 10:00am
Sunday School: 10:00am
fpcgrove.com
Calvary Chapel Cottage Grove
1447 Hwy 99 (Village Plaza)
541-942-6842
Pastor: Jeff Smith
Two Services on Sun:
9am & 10:45am
Youth Group Bible Study
Child Care 10:45am Service Only
www.cgcalvary.org
Hope In The Grove
700 E. Gibbs • 401-855-5668
Pastor: Wayne Husk
Sunday services:
Worship: 9am
Coffee Fellowship: 10:15am
Bible Study: 10:30am
Center for Spiritual Living
700 Gibbs Ave. (Community Center)
Rev. Bobby Lee
Meets Sunday 3:00 p.m.
cslcottagegrove@gmail.com
Church of Christ
420 Monroe St • 541-942-8565
Sunday Service: 10:30am
Cottage Grove Bible Church
1200 East Quincy Avenue
541-942-4771
Pastor:Bob Singer
Worship 11am
Sunday School:9:45am
AWANA age 3-8th Grade,
Wednesdays Sept-May, 6:30pm
www.cgbible.org
Cottage Grove Faith Center
33761 Row River Rd.
541-942-4851
Lead Pastor: Kevin Pruett
www.cg4.tv
Full Childrenʼs Ministry available
Service: 10:00am
Hope Fellowship
United Pentecostal Church
100 S. Gateway Blvd.
541-942-2061
Pastor: Dave Bragg
Worship: 11:00am Sunday
Bible Study: 7:00pm Wednesday
www.hopefellowshipupc.com
“FINDING HOPE IN YOUR LIFE”
Our Lady of Perpetual Help
and St. Philip Benizi
Catholic Churches
1025 N. 19th St.
541-942-3420
Father: Joseph Hung Nguyen
Holy Mass:
Tue-Thu: 8:30am; Sat:5:30pm
Sun: 10:30am
Confession: After daily mass,
Sat. 4-5pm or by appointment
St. Philip Benizi, Creswell
552 Holbrock Lane
541-895-8686, Sunday: 8:30am
Cottage Theatre presents
The fantastic fairytale adventure for the whole family
October 5-28
St. Andrews Episcopal Church
1301 W. Main • 541-767-9050
Rev. Lawrence Crumb
“Church with the fl ags.”
Worship: Sunday 10:30am
All Welcome
Seventh-day Adventist Church
820 South 10th Street
541-942-5213
Pastor: Kevin Miller
Bible Study: Saturday, 9:15 am
Worship Service: Saturday, 10:40
Mid-week Service: Wednesday, 1:00
Trinity Lutheran Church
6th & Quincy • 541-942-2373
Pastor: James L. Markus
Sunday School & Adult Education
9:15am
Sunday Worship 10:30 am
Comm. Kitchen Free Meal Tue & Thur
5:00pm TLC Groups
tlccg.com
United Methodist Church
334 Washington • 541-942-3033
Pastor:Lura Kidner-Miesen
Worship: 10:30am
Comm. Dinner (Adults $5,
Kids Free)
1st & 3rd Monday 5-6:00pm
umcgrove.org
Non-Denominational
Church of Christ
1041 Pennoyer Ave
541-942-8928
Preacher: Tony Martin
“VICTORY” Country Church
Sunday Bible Study:10:00am
Sunday Worship:10:50am & 5:30pm 913 S. 6th Street • 541-942-5913
Pastor: Barbara Dockery
www.pennoyeravecoc.com
Worship Service: 10:00am
Message: “WE BELIEVE IN
Old Time Gospel Fellowship
MIRACLES”
103 S. 5th St. • 541-942-4999
Pastor: Jim Edwards
CRESWELL:
Sunday Service: 10:00am
Join in Traditional Christian Worship Creswell Presbyterian Church
75 S 4th S • 541-895-3419
Rev. Seth Wheeler
Adult Sunday School 9:15am
Sunday Worship Service 10:30 am
website www.creswellpres.org
Book & Lyrics by David Lindsay-Abaire
Music by Jeanine Tesori
Based on the DreamWorks Animation Motion Picture and the book by William Steig
Directed by Keith Kessler, Music Direction by Keri Davis,
Choreography by Janet Rust
Worship With Us!
Our Worship Directory is a weekly feature
in the newspaper. If your congregation
Sponsored by:
would like to be a part of this directory,
please contact the
Cottage Grove Sentinel
@ 541-942-3325
541-942-8001 • 700 Village Drive • Cottage Grove
www.cottagetheatre.org