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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

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