The Ambassador: Spring 2017

SPRING 2017 www.annecarlsen.org

FOR SUPPORTERS OF THE MISSION AND VISION OF THE ANNE CARLSEN CENTER

The Road to Acceptance and Possibility PA G E 2

M E S S A G E

F R O M

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weeping down the modest hills surrounding the Buffalo City, the winds of change have arrived… preparing us for great days ahead. They drift through our humble campus like a distant but familiar song, whispering into our ears the promise of new opportunities, and stirring our spirits for the work required to realize them.

It is the season of transition here at the Anne Carlsen Center… and we’re eager to breathe it in like that first fresh smell of a spring rain shower.

As an organization privileged to serve individuals and families with a diverse set of needs, change and transition are instrumental agents for reaching new levels of personal growth and independence.

Many in these populations will experience the full measure of that independence, and no longer need our expertise and care. For others touched with more severe cases of disability or delay, there is no panacea. A diagnosis may be ironclad; a condition may be permanent. Yet while we may be powerless to change a medical outcome, we do have the ability—and the obligation—to use all the resources at our disposal to enhance their quality of life. To that end, we never stop evolving. Transition and change are unremitting vehicles for discovering new possibilities of happiness, hope, and health.

But just in case you’ve come down with some spring fever—and think these transitions come as easy as the flowers springing from the melting snow—let me make it clear: change is tough. Transitions are hard. Whether it’s guiding an organization to new frontiers of innovative care—or realizing you can’t provide the full support your child needs at home—the process of moving forward can be difficult. These situations demand faith and resiliency, and I can’t think of any family that embodies that more than the Juves.

The Juve family understands the undeniable necessity of change…and the emotional passages that accompany it. A loving couple with two daughters and a son with special needs, David and Vicki spent 18 years adapting their routines, schedules and approaches to help Christian thrive at home. But as Christian grew up, so did his needs, until finally,

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they made the decision to transition Christian to our residential program in Jamestown. The new opportunities now available to Christian has made their decision a worthwhile one, but it would only come after they exhausted every effort to keep him at home. Walk a mile in their shoes on page 2.

And (speaking of miles) our donors went the distance on Giving Hearts Day, raising an impressive $280,000 to fund our life-changing supports and services throughout North Dakota. Read more about the changing trends in donor generosity on the opposite page.

When it comes to changes and transitions, this seasoned craftsman has seen it all. For over 30 years, he’s been engineering custom-made technologies that empower our students to interact with their environments in some terrifically creative ways.

We’re so pleased to offer an exclusive interview with the Sultan of Switches, the Maestro of Mechanics: our very own Adaptive Equipment Specialist Todd Kollman. Read about the passion and ingenuity behind the adaptive equipment on page 12.

Lastly, the most important dimension of change­­— the shift in mindset and perspective—is addressed by a talented young man we serve in Fargo. Selfadvocate Matt Beilke challenges readers not to categorize all individuals with disabilities into one group, in a powerful letter he wrote to the governor.

Read the piece that was featured in the Fargo Forum on the back cover.

As the old saw goes, the more things change, the more they stay the same. Keep that in mind. In the months to follow, we’re going to unveil an innovative concept to offer the most innovative, visionary care possible… in response to the revolutionary opportunities generated from new technologies and bold ideas. Rest assured though, throughout the process—growing pains and all—one thing will remain the same: Our commitment to nurture abilities and change lives.

Gratefully yours,

Eric M. Monson CEO Anne Carlsen Center

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W

e’ve been told that it’s always prudent to “walk a mile in their shoes” before we pass

any judgement. It’s good advice, so— intrepid travelers as we are—we take it to heart. We lace up our boots…gather our

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good intentions…and take the first step to realizing another’s experience.

But it’s so easy to begin this journey on the wrong foot.

We’re too high-minded. Too introspective. Witnessing the misfortunes of others diminishes our own, until we find our personal struggles insignificant...absurd, even. The path beneath our feet becomes fertile ground for misplaced guilt.

Suddenly, this mile-long walk looks like an unfathomable slog. The story we wanted to understand is so removed from our own, that the promise of a real connection—one based on honesty, recognition, courage—is relegated to something much less: pity. Shame. Separation.

It’s a common misstep that many compassionate people make. And if you’ve struggled with this, read on—hopefully, we can redirect you to the right course. But to do it, we need to establish the characters as they are, and remove any predispositions that could obscure your view of the distance before you.

This is a story about real people. Not victims, not martyrs, not saints; simply a loving couple with two daughters and a son with special needs. That they both happen to be pastors shouldn’t impede you on this exercise in empathy; it just makes the footsteps of those you follow a little lighter.

“WE ALL HAVE HANDICAPS, BUT NO MATTER WHAT IT IS, WE DON’T ALLOW IT TO DEFINE US.” David Juve

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ADAPTING ARTISTS Imagine a busy home, ringing with the familiar din of teenage girls.

Hairdryers are whirring… cell phones are chirping…foreign phrases you’re too old to understand are passed like a collection plate from one side of the table to the other. It’s the joyful melody of a normal household, governed by

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the usual priorities every family must abide by. There’s Allie (now 21), older sister Morgan (22), and David and Vicki Juve, who’ve danced to this rhythm since they arrived in Fargo from Ohio in early 2012. And then there’s Christian, who introduces a different texture to the tune.

Sometimes, he can disrupt the harmony; sometimes he makes it sound off-key.

Regardless of the discord, the fact that Christian is undeniably one of their own makes this family’s song a richer one.

In many ways, Christian is your average young adult. He enjoys basketball, action movies, and hanging out with girls. Growing up at home, Christian teased and pestered his sisters, a common practice embraced by most younger brothers.

Last February, the Juve’s transformed their basement into a Nerf Gun battlefield, celebrating 18th Christian’s birthday by dodging foam balls and suction-cupped darts.

some level, is trying to recapture something that’s been lost, and to become whole again. It could be in the form of an addiction, an emotional scar, or a debilitating personal belief, but “no matter what it is, we don’t allow it to define us” he says. The Juve family embraces this defiance with a crusader’s fervor, leaning on faith to recognize their son for who he is: a compassionate, intuitive young man, who’s been fearfully and wonderfully made.

“YOU’RE ON PURPOSE. YOU WERE MADE

BY GOD, FOR A PURPOSE.” Vicki Juve

It was an exhilarating homecoming for Christian, who now lives in the cottage apartments at the Anne Carlsen Center in Jamestown. By all measures, his transition from his south Fargo home to his own place on campus has been a smooth one… the path to get there was not as easy.

Christian was born with what is broadly categorized as “global development delays.”

For the Juve family, it’s an unsatisfying diagnosis fraught with ambiguity. Physicians couldn’t determine an underlying condition responsible for Christian’s disability, but they could identify a host of disorders that arose because of it: conduct disorder. Disruptive behavior disorder. Impulse control disorder. A collection of scary terms conjuring up visions of a dangerous individual in the minds of the uninformed.

“We all have handicaps” David muses. Everyone, on

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Yet despite the true nature of his character, the daily challenges of caring for Christian at home were stretching the family to their limits. Christian was growing up, and getting bigger. His cognitive impairments restricted his ability to communicate, so when his needs weren’t being understood, Christian would get frustrated, and act out. According to Dr. Myra Quanrud, Anne Carlsen Center's Medical Director, sometimes his behaviors weren’t goal-driven outbursts, designed to obtain a certain demand, but rather “energy overflows,” a response to being overwhelmed.

It was a common feeling among the Juves. “Every facet of his life had to be attended to” David recalls. Catering to Christian’s medical, physical, and developmental goals wasn’t just a financial sacrifice for David and Vicki; it meant less time with the girls, missed opportunities, and unyielding stress. Tantamount to all, the lingering question of Christian’s future hung over their heads like a dark cloud.

Until that day would come, the Juves perfected the art of adapting. Routines were altered and schedules were rearranged. Trips to relative’s houses were reserved for family who accepted him. Rather than feeling resentment for the attention Christian required, the girls adapted a mindset of advocacy; Aly would imagine someone hurting him as a tool to arouse emotion for her drama performances, while Morgan would evaluate a prospective boyfriend based on his treatment of her special brother. It’s tempting

pose. You were made by God, for a purpose.”

Since February 24th, Christian has lived at a place created to celebrate that purpose, and to nurture the abilities that allow him to express it. Having finally reached the breaking point of exhaustion— and recognizing Christian’s own growing frustrations—the Juve’s applied for residency in the summer of 2015.

Christian paints a face on a watermelon plucked from the ACC garden. Art is among the countless recreational pursuits he now has access to at the Center.

to assume (as this observer did), that the Juve’s devotion to Christian was drawn from an almost unworldly-reserve of compassion. David was quick to dismiss this. “It’s nothing extraordinary” he said.

“When it’s your child, you do what you need to do. You see the need that’s there, and you adapt.”

Life with Christian could be tumultuous, with rare moments of calm to pacify the changing tides.

One consistency remained, however, that was often tried, but never broken: the perseverance of faith within the Juve household.

When Christian was accepted to the program, it was like “winning the lottery,” David beamed. They weren’t the only one’s exited. “We explained to Christian that there would be a change. It seemed like he understood that he’d be going to a special place just for him. He would clap his hands when we’d talk about it” Vicki said.

Immediately, the resources available to help Christian realize his potential skyrocketed. During one of their first consults, David and Vicki met with over 20 specialists representing different dimensions of personal care, providing an in-depth evaluation of Christian’s skills, habits, and needs.

“YOU’RE ON PURPOSE” “I don’t know how we could have gotten through it without God’s grace” David says. “I don’t know how others could without it.” Through the prism of faith, David and Vicki can begin to unravel the meaning and mysteries behind Christian’s bright blue eyes.

Along the way, they receive hope and peace to sustain them.

It’s impossible to overstate how important that faith is, but as David reminds us, sometimes human limitations demand more than faith can supply.

“There’s no answer for everything out there that will bring us to a satisfactory place where we can say ‘Ok. That works for me.’ I still have questions” he said. “But my lack of knowledge doesn’t change the value I get from how Christian is designed, and the value he brings to other people.’” Vicki reinforced this concept simply—and beautifully—to a group of students, presiding over last year’s Anne Carlsen Center Thanksgiving chapel service: “You’re on pur-

We’re proud to support ACC and its mission to change lives.

“Help others achieve their dreams and you will achieve yours.”

LES BROWN

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“It was very enriching to us” David said. “The dedication of the staff to understand every part about his life was evident. We realized Christian was going to get the help he needs at the Anne Carlsen Center.”

Today, David and Vicki are familiar faces around the Center, stopping by to see Christian almost every week. When they arrive here for a visit, Christian greets them with smiles, affection, and an unspoken appreciation for the new opportunities that surround him.

When they leave, they depart with a sense of relief and renewed hope for Christian’s future, knowing their son has the best care available.

“Happiness... consists in giving, and in serving others.”

HENRY DRUMMOND

Home Life Services: AT-A-GLANCE

“WE REALIZED We’re proud to support ACC and its mission to serve others.

CHRISTIAN WAS GOING TO GET THE HELP HE NEEDS AT THE ANNE CARLSEN CENTER.” David Juve

We’re proud to support ACC and its mission to create love.

“Kindness in words creates confidence.

Kindness in thinking creates profoundness.

Kindness in giving creates love.”

LAO TZU

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It’s 91 miles from Fargo to Jamestown. With the wind at your back, it’ll take less than two hours and half a tank of gas to reach it. For the Juves, however, it took over 18 years to get here, and required exploring every possibility to keep him home before they took the trip.

The unique challenges, gifts, frustrations and triumphs they experienced along the way may be foreign to most, but reflected in their story is a theme that resounds for all families: you do what you have to, for those you love.

So maybe that mile in their shoes isn’t so incomprehensible. One thing is clear, both for the Juves, and countless other families we’re privileged to serve throughout the state: the road to independence runs through the Anne Carlsen Center.

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The Courage of a C A T A L Y S T As he prepares to retire, CEO Eric Monson leaves behind a legacy of fearless determination and innovation

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ric Monson will never forget the day Jake* arrived at the Anne Carlsen Center (ACC)

Campus in Jamestown. Transported by ambulance and relying on a ventilator for every breath, the preschool-aged boy needed the specialized care and supervision the Center’s highly-trained medical team could provide.

“Eighteen months after he arrived,” remembers Monson, “Jake ran out of the Center, jumped in the backseat of his grandparents’ car and went home with them. He went from being flat on his back to being quite independent. And he has persevered.”

Jake is an example, says Monson, of lives changed in remarkable ways by dedicated Anne Carlsen Center professionals. “This is not a job—it’s a calling,” he explains. “It gets into your soul as you look at the individual accomplishments of the children and adults we serve.”

July 1 will bring to a close Monson’s eight years at the helm of the Anne Carlsen Center. The ACC Board of Trustees has appointed COO Tim Eissinger as Monson’s successor.

During his tenure, Monson led this organization through a time of rapid expansion in depth of programming, geographic reach of services, and number of people served. In 2016, there were 3,200 children and adults receiving ACC services, a tenfold increase since 2009. The Center now has a presence in every county of the state.

“We would be hard pressed to have had a better CEO at the Anne Carlsen Center during the time Eric has been here,” says Harvey Huber, ACC Board chair.

Prior to his appointment as CEO, Monson served on the ACC Board for six years. He also spent 12 years overseeing the operations of the Anne Carlsen Center as a senior executive with Banner Health and its predecessor, Lutheran Health Systems, before the Center became an independent organization. * Name has been changed

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“[Eric] uses his work experience, training and talents to uniquely guide and empower,” says Huber. “He has a good understanding of the programs we offer, is a very effective speaker and writer, and has done an outstanding job recruiting leadership to the Center.”

sense of what this would be.

He has a good way of envisioning the future and how things will be successful.”

Monson also spearheaded the establishment of the Ideation Center, a department charged with leading the Anne Carlsen Center in the implementation of training, strategy and innovation. “Eric is always scanning the world and is very aware of what is going on,” says Ideation Center Director Stephanie Nelson. “He has a vision for how we can apply those developments every day to fulfill our mission.”

LEADING THE WAY A major achievement of MonMonson with some of the volunteers son’s tenure has been attracting and participants in the 2008 highly-regarded board memAnne Carlsen Center Golf Tournament, bers and empowering them including his wife, Pat to serve effectively. The board (back row, far right) and his approved a half million-dollar daughter, Jessica (front row, far right). investment in Mind Shift, a nonprofit corporation that trains Nelson adds that Monson met one-on-one with and employs adults on the autism spectrum in members of the Ideation Center team, in the first detail-rich jobs, maximizing their unique abilitwo years of its existence, to offer support and ties and strengths. “Without Eric’s support, we guidance as they were getting established in wouldn’t be here now,” says Tony Thomann, exectheir roles. “I can’t believe the CEO would take utive director of Mind Shift. “None of this happens the time to do what he did,” she says. “Now that without Eric. From the beginning, he had a clear I have a better grasp of all of his responsibilities— and how precious his time is—when I think back on the time he gave our team, I realize how incredible that was.”

We’re proud to support ACC and its mission to better lives.

“No one has ever become poor by giving.”

ANNE FRANK

Monson also forged a wide variety of collaborations and partnerships across the state, including Annie’s House Adaptive Recreation Program at Bottineau Winter Park, which offers year-round recreational activities to individuals with disabilities. The program was established in memory of North Dakota native Ann Nicole Nelson who was killed in the 9/11 terrorist attacks.

“When Eric makes a decision, it’s full steam ahead,” says Gary Nelson, Ann’s father. “After he made a couple of visits up here, it was obvious this was a project he didn’t want to fail. I think he coddled this thing, for the first couple of years, with a lot of purpose and follow up. When I would visit with Eric, he wanted to know specifically what progress and changes had been made.”

Determination has been a tremendous asset in Monson’s role as an advocate for the Anne Carlsen Center during the biennial sessions of the North

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Dakota Legislative Assembly. “Eric brings credibility and sophistication into an area that, for much of his career, was a developing field in health care,” says Levi Andrist, a contract lobbyist for the Anne Carlsen Center. “Legislative leaders want to talk with him because he is a subject matter expert, he is trusted, and he has the ability to bring scale to the conversation.”

GOING THE EXTRA MILE Donene Feist, a former ACC employee, is the executive director of Family Voices of North Dakota, a grassroots non-profit organization providing resources to families of children and youth with special heath care needs and/or disabilities. She says she has learned a lot from Monson, who approached her several years ago about collaborating with the Anne Carlsen Center to further enhance family support across the state. “Eric goes that extra mile to make sure families are taken care of and have the services they need,” she says.

“He has worked very hard to make life easier and better for others.”

We’re proud to give to ACC and its mission to better lives.

“No person was ever honored for what he received. He was honored for what he gave.”

CALVIN COOLIDGE

As he reflects upon his career, Monson says he is grateful to have had the privilege to work with and learn from Dr. Anne Carlsen. Today, the organization that bears her name employs more than 600 highly-skilled individuals. “The meaningful work our employees do inspires me,” Monson says. “Sometimes it’s a longer road to accomplish goals, but they keep moving and working, identifying pieces of progress. They are curious about the capabilities of individuals. They see the person and the person’s abilities and believe that nothing is impossible.”

Monson says he looks forward to seeing the Anne Carlsen Center family achieve milestone after milestone. He is confident the Center will continue to empower, equip and innovate in every corner of the state.

“This organization would never have gotten where it is today—the dominant service provider in the state and on the leading edge in the field—without someone of Eric’s abilities and experience,” says Huber. “Eric’s legacy is that the Anne Carlsen Center—and the state of North Dakota, really—is a better place because of his commitment.”

We’re proud to support ACC and its mission to make a difference.

“Giving is not just about making a donation. It is about making a difference.”

KATHY CALVIN

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Adaptive Eqipment Specialist Todd Kollman

“My priority is the

Mastery Meaning kids

THE CRAFTSMAN’S CREED

and safety.

I put myself in the (students’) position. I get right in. If I have to have someone strap my arm behind my back to test some equipment, I’ll do that. But when it comes to the safety end of it, that’s my sticker. I’ll create different situations that test the safety of my work, and make sure that we cover all the bases first before it’s adapted to a student’s lifestyle. With the variety of kids we have here—and the staff that work with them—it’s absolutely imperative that our equipment is thoroughly tested.

”

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A

s any tech head knows, there are two requirements that compose a robust operating system: the hardware and the software. Simply put, the hardware consists of the physical elements that perform tasks, while the software instructs it on how to execute them. But here at the Anne Carlsen Center in Jamestown, there’s another layer of technology that’s equally vital to the performance of our student’s equipment:

It’s Toddware.

In an age of highly-specialized fields (where you can earn a PhD in just one programming language), Todd hails from the old school of doing what works—the farm. His experiences there (assisting his father and uncle, who were both touched by disability from polio) offered invaluable opportunities to hone his technical skills and unleash his teeming imagination.

Adept in a bevy of mechanical trades and guided by an inexplicable intuition, Todd adapts equipment to enhance the lives of those we serve. Whether it’s a floor mat that activates an appliance with the pressure from a foot or a wheelchair tire, or a system of assistive switches that enable individuals to turn on and interact with just about anything, Todd’s ingenuity and resourcefulness have opened the doors to new possibilities for generations of students.

Think of it this way—if our students were James Bond, Todd is their crafty gadget-maker, Q. Like any good technical manual, Todd’s accomplishments over his 30-year career is a long, comprehensive read. So here’s a few highlights, quotes and snippets that celebrate an uncommon genius, and an undeniable passion.

Todd’s machine shop has been a laboratory of invention and innovation for over 30 years.

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“As long as you have tools you can build most anything.”

“I can just look at it.

If I can’t visualize it—and my mind is blank—it’ll keep me up at night.

But when I have the We’re proud to support ACC and its mission to better lives.

answer, everything is a picture to me.

Then you work on it— work with the different people—and tweak it until it works.”

“Several years ago, one of the physical therapists contacted me about adapting a bike for a young girl that had limited leg movement. The little

girl wanted to ride with her brothers and sisters so she didn’t have to sit and watch.

After talking it over and deciding that something commercial wasn’t going to work, we decided that we needed to adapt a bike. We started with a commercially purchased, low-to-the-ground, three-wheeled bike. The seat was positioned wrong and of the wrong style, the bike was too long for her and the hand controls had to be positioned differently.

We met, evaluated, and got measurements on what was needed. The next step was basically to start cutting it apart. I changed

We’re privileged to support ACC and its mission to better lives.

“Think of giving not as a duty

but as a privilege.”

JOHN D. ROCKEFELLER, JR.

the frame to a shorter version with a different angle, I dropped the seat down and forward, installed a different style seat, adapted the foot pedals for her feet, and installed safety hardware for seating and foot positioning.

I checked in during the girl’s therapy time and we fit the trike so it would work best for her. It was amazing just how quickly she caught on with working the bike up and down the halls with great precision, skill, and speed. Her parents thought it was great and the smile on the little girl’s face and her reaction when she first saw the bike made everyone’s day. She has told me since then she rides better than her brothers and sisters!”

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P R OG R A M P ROF I LE

BOARD OF TRUSTEES

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VSA

Bruce Furness Fargo, N.D.

Tamara Mathison, O.D. Thomas Rolfstad Jamestown, N.D. Williston, N.D.

Matthew Hanson New York City, N.Y.

Sue Offutt, Ph.D. Immediate/Past Chair Cashton, W.I.

Harvey Huber Chair Jamestown, N.D.

Nicole Poolman Treasurer Bismarck, N.D.

Alex Schweitzer Jamestown, N.D. Janet Seaworth Secretary Bismarck, N.D.

Casey Stoudt Vice Chair Jamestown, N.D. Kristi Wilfahrt Grand Forks, N.D. Myra Quanrud, M.D. Ex Officio Jamestown, N.D.

SENIOR MANAGEMENT Eric Monson Chief Executive Officer Tim Eissinger Chief Operating Officer Daniel Johnson Chief Financial Officer

Sam Brownell Info. Technology Director Patrick Kirby Chief Development Officer

Stephanie Nelson Jody Vigness Ideation Center Director Community-Based Services Patty Olson Senior Director Human Resource Director Kresha Wiest Director of Management Systems

DEVELOPMENT DEPARTMENT —701-952-5167 Patrick Kirby Chief Development Officer patrick.kirby@annecenter.org

Trenton Gerads Associate Development Director trenton.gerads@annecenter.org

Tracy Denning Development Support Specialist tracy.denning@annecenter.org

Lori Kalgard Marketing/Special Events Coord. lori.kalgard@annecenter.org

Felicia Sargeant Associate Development Director felicia.sargeant@annecenter.org

Logan Little Marketing Director logan.little@annecenter.org

Michelle Walker Associate Development Director michelle.walker@annecenter.org

Rachel Schafer Development Operations Coord. rachel.schafer@annecenter.org

We’re proud to support ACC and its mission to better lives.

“The highest use of capital is not

to make more money, but to make

money do more for the betterment

of life.”

HENRY FORD

THE AMBASSADOR Published by: Anne Carlsen Center 701 3rd St. N.W., P.O. Box 8000 Jamestown, ND 58402 1-800-568-5175 www.annecarlsen.org Logan Little, Marketing Director logan.little@annecenter.org Brenda Tappert, Writer brenda.tappert@annecenter.org Paul Johnson, Designer paul@pauljohnsondesign.com Matthew Beilke, Special Contributor

The Ambassador is a mailed, free of charge, quarterly publication for supporters of the Anne Carlsen Center.

If you would like to be removed from our mailing list, please call 1-800-568-5175, ext. 1015.

Eco-friendly Ambassador The Ambassador is printed on an environmentally-certified paper. Each page has a 10% post-consumer waste content, and the inks utilized are Soy Inks.

Notice of NonDiscrimination Policy: Anne Carlsen Center does not discriminate on the basis of race, color, national origin, age or disability in employment or services.

For information on how you, your family or your business can help support the Anne Carlsen Center, contact: PATRICK KIRBY Chief Development Officer patrick.kirby@annecenter.org

We’re proud to support ACC and its mission to make lives better.

We’re proud to support ACC and its mission to better lives.

“For it is in giving that we receive.”

FRANCIS OF ASSISI

“We make a living by what we get,

but we make a life

by what we give.”

WINSTON CHURCHILL

Non-Profit Org. U.S. Postage PAID FARGO, ND Permit #???

701 3rd St. N.W. P.O. Box 8000 Jamestown, ND 58402 www.annecarlsen.org

A N A DVO C AT E ’ S A P P E A L Matt Beilke, a member of our Community Based Service program in Fargo, calls for more opportunity and understanding in this letter he addressed to the Governor.

Gov. Doug Burgum and North Dakota legislators: My name is Matthew Beilke. I’m writing to you today about some issues that I’m dealing with. First, let me tell you a little about myself. I’m 27 years old. I was born with a physical disability called cerebral palsy that affects my everyday life. I’m in a wheelchair. I have limited use of my hands and legs. I need assistance with all of my personal cares. Other people find it hard to understand my speech. I have a part time job and live in my own apartment with an around the clock staff from two different agencies.

I’m an advocate for people with disabilities. Once a month I go to a community meeting. The meetings address accessibility needs within our community.

The agencies group people with both cognitive disabilities and physical disabilities into one group. I think this is the wrong way to look at disabilities. For example, I am able to direct my own care because my disability is physical instead of cognitive. But I need to get everything approved before I can do something because people with cognitive disabilities wouldn’t be able to do that. I feel that this is limiting my rights. I would like to be able to take an over-the-counter medication when I feel like I need it and not have to go to the doctor for everything and get it approved.

At this point, I feel like some of my services place too many policies and restrictions on me because they are set up to help people with cognitive disabilities. It feels like I don’t get much say in my life, even though I’m my own guardian. I need more help with physical stuff like transferring, bathing, and being transported. With the changes to agency funding, it looks like there is a possibility that my service will transition away from independence and toward more group services, and that I will be spending more time with people whose needs are different than mine. And then I will be getting services that they need rather than the services I need to compensate for my disability. There must be a different way to do this. I feel like it is unfair.

I feel like there aren’t enough jobs for people who have physical disabilities. There are many different jobs that I would like to have but I’m unable to do them because of my physical disability. I would love a full-time job with benefits. If I earn more money than I’m already making, then I will lose my benefit from Social Security and Medicaid. I need the Medicaid to help me pay for my services. When you add my income from my job and Social Security together, it is barely enough to make ends meet with the way things are going right now.

The reason why I’ve written is that I don’t feel like you and the legislators get that having a disability leads to limited finances and services. I am willing to come and talk to you and the legislators about what it’s like to have a disability. If you want me to do that, I can be reached at matthewbeilke@gmail.com.

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