1957 - 2017
The Arc of Southeast
By Steve Gravelle
A cheerful chaos descends on an otherwise typical office building every
“You get to hang out with a lot of different kids and they always remember
you, which is sweet,” Evelyn Maravillo said.
Ms. Maravillo is a direct-care professional for The Arc of Southeast Iowa.
On a recent typical morning, she and her colleagues worked and played with
eight children ages 5-17 in the newly remodeled lower level of its headquarters
at 2620 Muscatine Ave., Iowa City.
Celebrating its 60th anniversary this year, The Arc made the renovations
to better serve its client families while meeting recent changes in the way its
services are funded.
“That’s the direction we’re moving toward,” said Ryan Markle, director of
on-site programming. “Individual services get a little more difficult to provide
to the Arc of
on 60 years of
serving our local
with the privatization of Medicaid.”
So, the new facility will provide all-day care and activities for clients
with developmental disabilities, from infants to teenagers. Arc clients
can spend their days in the new program rooms and in the outdoor playground,
allowing their parents and siblings to go about their daily routine
knowing they’re safe and secure.
“It’s been such a benefit to our family,
to be part of a place like this,” Wendy
Ms. Trom dropped off her son, Jackson,
at The Arc at least a couple mornings
each week this summer.
Jackson Trom, 20, doesn’t say much, instead
grooving to the music on his mom’s
– Wendy Trom, parent
smart phone as she visits in The Arc lobby.
He’ll spend the morning in one of the
nonprofit’s supervised programs for the developmentally disabled, allowing
Ms. Trom to run errands and otherwise take care of family business.
“I can run an errand and not have to multi-task at the same time,” said
Jackson Trom has required medical attention and other services “from
the get-go,” his mother said. Born three months premature, he was diagnosed
with autism and Pervasive Developmental Disorder at the University
of Iowa’s Center for Disabilities and Development (CDD).
He’s received services at his public schools, but as he grew older, The
Arc became the Troms’ sole provider.
“They’re our people,” Ms. Trom said.
A product of the
Corridor Business Journal
Sept. 18, 2017
Steve Gravelle, writer
Miranda Meyer, photographer
Julia Druckmiller, designer
Judith Cobb, media consultant
2 THE ARC OF SOUTHEAST IOWA
The Arc provides a wide
range of services: Day camp,
employment support, and
the development of the
skills clients such as Jackson
Trom will need to live as
independently as possible.
Key programs include:
> Respite care provides a safe, supervised
setting for Arc clients, freeing parents
and family members to conduct the
business of everyday life, or just get some
time for themselves.
Betsy Reisz said The Arc had to win the
trust of many families when it launched
its respite programs.
“’If you could get some relief time, a
couple hours a day, would you use it?’”
remembered Ms. Reisz, an early member
and board president in the late 1970s.
“The parents said ‘No.’ They didn’t think
anyone would know how to care for
someone with special needs. We started
a very small respite-care program, and of
course when people tried it, they were
> Supported employment advisors
and coaches build clients’ skills to allow
the developmentally disabled to hold
jobs in the community.
Supported employment allowed Kendra
Spire, born with Down Syndrome, to
work 20 years in the kitchen at UI Hospitals
and Clinics visitors’ dining room.
An Arc job coach helped her learn how
to schedule her time and navigate her
daily commute on the bus.
“It takes special people to do that,”
Kendra’s mother, Sandy Spire, said.
“They’re all heroes, as far as I’m concerned.”
Arc client Marsha Monroe “has become
part of the family at Shakespeare’s,”
Suzi Spalj, owner of the Iowa City neighborhood
tavern, wrote in an email. Ms.
Spalj hired Ms. Monroe as a dishwasher
last year after expanding the kitchen.
She’s since hired another Arc client.
“She is a very hard worker and never
misses work,” Ms. Spalj wrote. “She is
positive, outgoing and brings an energy
that is contagious.”
“One of the fundamental rights of an
American citizen is the ability to be a part
of the fabric of our country,” said Julie
Christensen, director of the University of
Iowa’s University Center for Excellence
on Disabilities at its Center for Disabilities
and Development. “What
does it say of the value we
place on people with disabilities
when we say, ‘You
don’t have to work?’”
> Supported community
living (SCL) develops
the life skills the developmentally
disabled need to
live as independently as
“Just learning to cross
the street, learning to
make the right decisions,”
Ms. Trom said.
SCL services enabled Kendra Spire to
live in her own apartment.
“They know how to use telephones,
they know how to tell time” with the
IF YOU COULD GET SOME
RELIEF TIME, A COUPLE HOURS
A DAY, WOULD YOU USE IT?
– Betsy Reisz, early member and board president in the late 1970s
help of Arc social workers, Ms. Spire
said. “Those are all stumbling blocks
for these kids. They just cover so many
on 60 years
of serving others!
Promoting dignity and growth for people
with disabilities and mental health needs.
1957 - 2017
~ Some important dates in the history of The Arc of Southeast Iowa ~
The Association for Retarded Children (ARC) is
founded by parents seeking an alternative to
institutionalizing their children with developmental
disabilities. Their focus is on educational, recreational,
and residential opportunities.
1959 1970 1971 1979 1989 1991
The Arc and Iowa City
Parks and Recreation
Department create the
a partnership that
the Association for
Seven Arc members
Unlimited to provide
to Johnson County
residents. The Arc
also partners with
the Noon Kiwanis of
Johnson County and
of Southeast Iowa to
The Arc purchases
a building at 1020
William St., Iowa City,
to house Systems
The Arc shifts focus to
services as previous
four goals are met.
waiver programs are
services in clients’
homes. The Arc
begins offering respite
services – the only in
the area at the time.
4 THE ARC OF SOUTHEAST IOWA
Supported Community Living (SCL) services offered as an alternative to residential
group homes. SCL allows individuals to remain in their own homes, with the
assistance to maintain their independence. Supported employment services
followed shortly, affording individuals the option of working in community-based
jobs rather than “sheltered” workshops available through Goodwill.
1992 2004 2007 2014 2016 2017
The Arc of Johnson
County name adopted;
offices relocate to
at camps for various
ages at three locations.
Name change to The
Arc of Southeast Iowa
reflects expansion into
Offices move to larger
building at 2660
Muscatine Ave., Iowa
City, allowing onsite
Eastern Iowa’s first
fully accessible play
outside The Arc offices.
added to The Arc’s
individuals with sensory
to better understand
services will be offered
onsite beginning the
WE ARE IN A WEIRD TIME WHEN POLICY AND
POLITICS ARE SO ENMESHED ... WE NEED THE
LEADERSHIP OF ORGANIZATIONS LIKE THE ARC
WHO ARE IN IT FOR THE LONG GAME.
– Julie Christensen, director of the University of Iowa’s University Center for Excellence on Disabilities,
Center for Disabilities and Development.
1957 - 2017
It all adds up to lifetime options the developmentally
disabled and their families didn’t
have when The Arc was founded in 1957.
“The agency is really focused on keeping
families intact,” said Chelsey Markle, The
Arc’s vice president of programs. “It’s a challenge
to provide all of those one-to-one services
in all of those areas of the community.”
The growth and development of new services
both reflect and inspired the evolution
in attitudes toward the developmentally
disabled and their capabilities, and society’s
obligation toward them.
“Every step of the way,” Ms. Reisz recalled.
“People think the government is going
to do it for us, but in the United States it
was the grass roots that forced the government
Ms. Reisz’ daughter, Sarah, was born in
1972 with Down Syndrome. She joined
The Arc within months
of Sarah’s birth, becoming
president of its
board in 1977.
“It’s a real shock when
you have a child (and)
you don’t understand
the diagnosis,” said Ms.
Spire, whose daughter
also has Down Syndrome.
“I was looking
for some place for my
child where there were
some social opportunities
and maybe some
Even in a relatively
progressive place like
Iowa City, options for
the developmentally disabled and their
families often came down to institutionalization.
Even the Center for Disabilities and
Development was once a residential facility.
“We do the best, with the best of intentions,
with the information we have at the
time,” Ms. Christensen said. “That in itself
was a progressive model at the time: why
not have the individuals closer to the quality
medical care that they need? So, a residential
facility was set up on the grounds of
Then a single mother, Ms. Spire placed
Kendra Spire in a group home when she
was five years old.
“It broke my heart to leave her the first
week,” she said. So, she began volunteering
at The Arc.
“We were all with children with about the
same age and ability levels,” she recalled of
the other Arc families. “I had a job, and I
needed someone to help me with my child.
I had to find some kind of care plan for her.”
THE AGENCY IS
– Chelsey Markle, The Arc’s vice president
6 THE ARC OF SOUTHEAST IOWA
It wasn’t until 1977-78 that The Arc added its
first paid executive director – “very part-time,”
remembered Ms. Reisz, who with other board
members hired the late Christine Franson.
“We went to the United Way, and we got
$5,000 to pay partly for her salary and partly
for the respite care program,” she said. “That
was the total amount in our budget, except for
some dues, which wasn’t very much.”
Today, The Arc typically serves 350-400
families at any one time with 25 full-time staff
managing 400 part-time employees, executive
director Karen DeGroot said. The organization’s
current budget is just under
The Arc services are funded
through waivers, a term that itself
reflects the evolution in how
they’re delivered. Before 1991, state funding was
available only to those living in institutions. In 1991,
parents and caregivers could apply to waive the institutionalization
requirement and deliver services to
those outside institutions.
“This allowed parents and caregivers to receive assistance
from trained individuals at no cost to them
in their own home and in their own community,” Ms.
DeGroot explained in an email.
Waiver services have allowed both dignity and independence
to the recipient and their families as well
as a huge cost savings to the state.
“Right now is a particularly challenging time to be a
community provider to people with disabilities,” Ms.
Christensen said. “We are in a weird time when policy
and politics are so enmeshed. Even more so now we
need the leadership of organizations like The Arc who
are in it for the long game.” •
2620 Muscatine Ave.
Iowa City, Iowa
1957 - 2017
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8 THE ARC OF SOUTHEAST IOWA