ARC 091817
The Arc of Southeast Iowa Celebrates 60 Years
The Arc of Southeast Iowa Celebrates 60 Years
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1957~2017<br />
60<br />
YEARS<br />
of<br />
SERVICES<br />
1957 - 2017
COMMITTED<br />
to individuals<br />
The Arc of Southeast<br />
Iowa celebrates<br />
60th anniversary<br />
By Steve Gravelle<br />
A cheerful chaos descends on an otherwise typical office building every<br />
weekday morning.<br />
“You get to hang out with a lot of different kids and they always remember<br />
you, which is sweet,” Evelyn Maravillo said.<br />
Ms. Maravillo is a direct-care professional for The Arc of Southeast Iowa.<br />
On a recent typical morning, she and her colleagues worked and played with<br />
eight children ages 5-17 in the newly remodeled lower level of its headquarters<br />
at 2620 Muscatine Ave., Iowa City.<br />
Celebrating its 60th anniversary this year, The Arc made the renovations<br />
to better serve its client families while meeting recent changes in the way its<br />
services are funded.<br />
“That’s the direction we’re moving toward,” said Ryan Markle, director of<br />
on-site programming. “Individual services get a little more difficult to provide<br />
Congratulations<br />
to the Arc of<br />
Southeast Iowa<br />
on 60 years of<br />
serving our local<br />
communities!<br />
Member FDIC<br />
R<br />
with the privatization of Medicaid.”<br />
So, the new facility will provide all-day care and activities for clients<br />
with developmental disabilities, from infants to teenagers. Arc clients<br />
can spend their days in the new program rooms and in the outdoor playground,<br />
allowing their parents and siblings to go about their daily routine<br />
knowing they’re safe and secure.<br />
“It’s been such a benefit to our family,<br />
to be part of a place like this,” Wendy<br />
Trom said.<br />
THEY’RE<br />
Ms. Trom dropped off her son, Jackson,<br />
at The Arc at least a couple mornings<br />
each week this summer.<br />
OUR PEOPLE.<br />
Jackson Trom, 20, doesn’t say much, instead<br />
grooving to the music on his mom’s<br />
– Wendy Trom, parent<br />
smart phone as she visits in The Arc lobby.<br />
He’ll spend the morning in one of the<br />
nonprofit’s supervised programs for the developmentally disabled, allowing<br />
Ms. Trom to run errands and otherwise take care of family business.<br />
“I can run an errand and not have to multi-task at the same time,” said<br />
Ms. Trom.<br />
Jackson Trom has required medical attention and other services “from<br />
the get-go,” his mother said. Born three months premature, he was diagnosed<br />
with autism and Pervasive Developmental Disorder at the University<br />
of Iowa’s Center for Disabilities and Development (CDD).<br />
He’s received services at his public schools, but as he grew older, The<br />
Arc became the Troms’ sole provider.<br />
“They’re our people,” Ms. Trom said.<br />
A product of the<br />
Corridor Business Journal<br />
Sept. 18, 2017<br />
Steve Gravelle, writer<br />
Miranda Meyer, photographer<br />
Julia Druckmiller, designer<br />
Judith Cobb, media consultant<br />
2 THE <strong>ARC</strong> OF SOUTHEAST IOWA
Wide<br />
range of<br />
services<br />
The Arc provides a wide<br />
range of services: Day camp,<br />
employment support, and<br />
the development of the<br />
skills clients such as Jackson<br />
Trom will need to live as<br />
independently as possible.<br />
Key programs include:<br />
> Respite care provides a safe, supervised<br />
setting for Arc clients, freeing parents<br />
and family members to conduct the<br />
business of everyday life, or just get some<br />
time for themselves.<br />
Betsy Reisz said The Arc had to win the<br />
trust of many families when it launched<br />
its respite programs.<br />
“’If you could get some relief time, a<br />
couple hours a day, would you use it?’”<br />
remembered Ms. Reisz, an early member<br />
and board president in the late 1970s.<br />
“The parents said ‘No.’ They didn’t think<br />
anyone would know how to care for<br />
someone with special needs. We started<br />
a very small respite-care program, and of<br />
course when people tried it, they were<br />
very grateful.”<br />
> Supported employment advisors<br />
and coaches build clients’ skills to allow<br />
the developmentally disabled to hold<br />
jobs in the community.<br />
Supported employment allowed Kendra<br />
Spire, born with Down Syndrome, to<br />
work 20 years in the kitchen at UI Hospitals<br />
and Clinics visitors’ dining room.<br />
An Arc job coach helped her learn how<br />
to schedule her time and navigate her<br />
daily commute on the bus.<br />
“It takes special people to do that,”<br />
Kendra’s mother, Sandy Spire, said.<br />
“They’re all heroes, as far as I’m concerned.”<br />
Arc client Marsha Monroe “has become<br />
part of the family at Shakespeare’s,”<br />
Suzi Spalj, owner of the Iowa City neighborhood<br />
tavern, wrote in an email. Ms.<br />
Spalj hired Ms. Monroe as a dishwasher<br />
last year after expanding the kitchen.<br />
She’s since hired another Arc client.<br />
“She is a very hard worker and never<br />
misses work,” Ms. Spalj wrote. “She is<br />
positive, outgoing and brings an energy<br />
that is contagious.”<br />
“One of the fundamental rights of an<br />
American citizen is the ability to be a part<br />
of the fabric of our country,” said Julie<br />
Christensen, director of the University of<br />
Iowa’s University Center for Excellence<br />
on Disabilities at its Center for Disabilities<br />
and Development. “What<br />
does it say of the value we<br />
place on people with disabilities<br />
when we say, ‘You<br />
don’t have to work?’”<br />
> Supported community<br />
living (SCL) develops<br />
the life skills the developmentally<br />
disabled need to<br />
live as independently as<br />
possible.<br />
“Just learning to cross<br />
the street, learning to<br />
make the right decisions,”<br />
Ms. Trom said.<br />
SCL services enabled Kendra Spire to<br />
live in her own apartment.<br />
“They know how to use telephones,<br />
they know how to tell time” with the<br />
IF YOU COULD GET SOME<br />
RELIEF TIME, A COUPLE HOURS<br />
A DAY, WOULD YOU USE IT?<br />
– Betsy Reisz, early member and board president in the late 1970s<br />
help of Arc social workers, Ms. Spire<br />
said. “Those are all stumbling blocks<br />
for these kids. They just cover so many<br />
bases.”<br />
Congratulations<br />
on 60 years<br />
of serving others!<br />
Promoting dignity and growth for people<br />
with disabilities and mental health needs.<br />
1957 - 2017<br />
3
~ Some important dates in the history of The Arc of Southeast Iowa ~<br />
In April<br />
1957 vocational<br />
The Association for Retarded Children (<strong>ARC</strong>) is<br />
founded by parents seeking an alternative to<br />
institutionalizing their children with developmental<br />
disabilities. Their focus is on educational, recreational,<br />
and residential opportunities.<br />
June<br />
1959 1970 1971 1979 1989 1991<br />
The Arc and Iowa City<br />
Parks and Recreation<br />
Department create the<br />
Special Populations<br />
Involvement program,<br />
a partnership that<br />
continues.<br />
Organization becomes<br />
the Association for<br />
Retarded Citizens,<br />
reflecting clients’<br />
increased life<br />
expectancy.<br />
Seven Arc members<br />
found Systems<br />
Unlimited to provide<br />
residential services<br />
to Johnson County<br />
residents. The Arc<br />
also partners with<br />
the Noon Kiwanis of<br />
Johnson County and<br />
Goodwill Industries<br />
of Southeast Iowa to<br />
improve vocational<br />
opportunities.<br />
The Arc purchases<br />
a building at 1020<br />
William St., Iowa City,<br />
to house Systems<br />
Unlimited services.<br />
The Arc shifts focus to<br />
in-home support<br />
services as previous<br />
four goals are met.<br />
Federal Medicaid<br />
waiver programs are<br />
established, funding<br />
services in clients’<br />
homes. The Arc<br />
begins offering respite<br />
services – the only in<br />
the area at the time.<br />
4 THE <strong>ARC</strong> OF SOUTHEAST IOWA
Late<br />
1990s<br />
Supported Community Living (SCL) services offered as an alternative to residential<br />
group homes. SCL allows individuals to remain in their own homes, with the<br />
assistance to maintain their independence. Supported employment services<br />
followed shortly, affording individuals the option of working in community-based<br />
jobs rather than “sheltered” workshops available through Goodwill.<br />
1992 2004 2007 2014 2016 2017<br />
The Arc of Johnson<br />
County name adopted;<br />
offices relocate to<br />
Eastdale Plaza.<br />
Summer camp<br />
programming offered<br />
at camps for various<br />
ages at three locations.<br />
Name change to The<br />
Arc of Southeast Iowa<br />
reflects expansion into<br />
surrounding counties.<br />
Offices move to larger<br />
building at 2660<br />
Muscatine Ave., Iowa<br />
City, allowing onsite<br />
services.<br />
Eastern Iowa’s first<br />
fully accessible play<br />
equipment installed<br />
outside The Arc offices.<br />
Sensory gardens<br />
added to The Arc’s<br />
outside recreational<br />
area, helping<br />
individuals with sensory<br />
integration disorders<br />
to better understand<br />
their environment.<br />
Daycare and<br />
pre-school renovations<br />
completed. These<br />
services will be offered<br />
onsite beginning the<br />
fall.<br />
WE ARE IN A WEIRD TIME WHEN POLICY AND<br />
POLITICS ARE SO ENMESHED ... WE NEED THE<br />
LEADERSHIP OF ORGANIZATIONS LIKE THE <strong>ARC</strong><br />
WHO ARE IN IT FOR THE LONG GAME.<br />
– Julie Christensen, director of the University of Iowa’s University Center for Excellence on Disabilities,<br />
Center for Disabilities and Development.<br />
1957 - 2017<br />
5
Options<br />
for a<br />
lifetime<br />
It all adds up to lifetime options the developmentally<br />
disabled and their families didn’t<br />
have when The Arc was founded in 1957.<br />
“The agency is really focused on keeping<br />
families intact,” said Chelsey Markle, The<br />
Arc’s vice president of programs. “It’s a challenge<br />
to provide all of those one-to-one services<br />
in all of those areas of the community.”<br />
The growth and development of new services<br />
both reflect and inspired the evolution<br />
in attitudes toward the developmentally<br />
disabled and their capabilities, and society’s<br />
obligation toward them.<br />
“Every step of the way,” Ms. Reisz recalled.<br />
“People think the government is going<br />
to do it for us, but in the United States it<br />
was the grass roots that forced the government<br />
to act.”<br />
Ms. Reisz’ daughter, Sarah, was born in<br />
1972 with Down Syndrome. She joined<br />
The Arc within months<br />
of Sarah’s birth, becoming<br />
president of its<br />
board in 1977.<br />
“It’s a real shock when<br />
you have a child (and)<br />
you don’t understand<br />
the diagnosis,” said Ms.<br />
Spire, whose daughter<br />
also has Down Syndrome.<br />
“I was looking<br />
for some place for my<br />
child where there were<br />
some social opportunities<br />
and maybe some<br />
learning opportunities.”<br />
Even in a relatively<br />
progressive place like<br />
Iowa City, options for<br />
the developmentally disabled and their<br />
families often came down to institutionalization.<br />
Even the Center for Disabilities and<br />
Development was once a residential facility.<br />
“We do the best, with the best of intentions,<br />
with the information we have at the<br />
time,” Ms. Christensen said. “That in itself<br />
was a progressive model at the time: why<br />
not have the individuals closer to the quality<br />
medical care that they need? So, a residential<br />
facility was set up on the grounds of<br />
the hospital.”<br />
Then a single mother, Ms. Spire placed<br />
Kendra Spire in a group home when she<br />
was five years old.<br />
“It broke my heart to leave her the first<br />
week,” she said. So, she began volunteering<br />
at The Arc.<br />
“We were all with children with about the<br />
same age and ability levels,” she recalled of<br />
the other Arc families. “I had a job, and I<br />
needed someone to help me with my child.<br />
I had to find some kind of care plan for her.”<br />
THE AGENCY IS<br />
REALLY FOCUSED<br />
ON KEEPING<br />
FAMILIES INTACT.<br />
– Chelsey Markle, The Arc’s vice president<br />
of programs<br />
6 THE <strong>ARC</strong> OF SOUTHEAST IOWA
Progress<br />
through<br />
the years<br />
It wasn’t until 1977-78 that The Arc added its<br />
first paid executive director – “very part-time,”<br />
remembered Ms. Reisz, who with other board<br />
members hired the late Christine Franson.<br />
“We went to the United Way, and we got<br />
$5,000 to pay partly for her salary and partly<br />
for the respite care program,” she said. “That<br />
was the total amount in our budget, except for<br />
some dues, which wasn’t very much.”<br />
Today, The Arc typically serves 350-400<br />
families at any one time with 25 full-time staff<br />
managing 400 part-time employees, executive<br />
director Karen DeGroot said. The organization’s<br />
current budget is just under<br />
$2 million.<br />
The Arc services are funded<br />
through waivers, a term that itself<br />
reflects the evolution in how<br />
they’re delivered. Before 1991, state funding was<br />
available only to those living in institutions. In 1991,<br />
parents and caregivers could apply to waive the institutionalization<br />
requirement and deliver services to<br />
those outside institutions.<br />
“This allowed parents and caregivers to receive assistance<br />
from trained individuals at no cost to them<br />
in their own home and in their own community,” Ms.<br />
DeGroot explained in an email.<br />
Waiver services have allowed both dignity and independence<br />
to the recipient and their families as well<br />
as a huge cost savings to the state.<br />
“Right now is a particularly challenging time to be a<br />
community provider to people with disabilities,” Ms.<br />
Christensen said. “We are in a weird time when policy<br />
and politics are so enmeshed. Even more so now we<br />
need the leadership of organizations like The Arc who<br />
are in it for the long game.” •<br />
THE <strong>ARC</strong><br />
NUMBERS<br />
350-400<br />
families served<br />
25<br />
full-time staff<br />
400<br />
part-time employees<br />
current budget<br />
just under<br />
$2 million<br />
2620 Muscatine Ave.<br />
Iowa City, Iowa<br />
(319) 351-5017<br />
www.arcsei.org<br />
1957 - 2017<br />
7
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8 THE <strong>ARC</strong> OF SOUTHEAST IOWA