Nichole Butters

Posted on February 20, 2014 by comm5775

MY STORIES: 

MY BLOG: 

8FLDOxegdzrP8gFfRRnpTNfStkClCy4MEf5Knh7qwaYBeing assigned to the aging beat this semester has been an incredible journey. When we were first introduced to this topic, I definitely had my doubts. I wasn’t sure how well I’d be able to connect with my sources and didn’t know much about their community. I realize now that the aging beat is a niche topic in journalism that needs to be covered more.

As I studied throughout the course of this semester, I realized that journalists tend to overlook this demographic. It is rare to find an article on aging-related topics. It was a great experience to explore this community and learn more about people and issues. I hope that covering this beat will shed light on their life, their story, and their journey.

Journalists should be determined to cover all communities and make an effort to tell all sides of the story. We truly have so much to learn from the aging generation. As Peter Hebertson, information and referral program manager of Salt Lake County Aging and Adult Services, related about his aging neighbor, “We still have young thoughts.”

It is easy for someone from my generation to “sensationalize” an older adult if they surpass our minimal expectations of seniors. We learned again and again this semester, either in class or out in the field conducting research and interviews, that their generation thrives. They have amazing life experiences and are strong, healthy and have so much to offer to our community.

I realized about halfway through the semester that I enjoyed, and actually preferred, being assigned to this beat. I love taking the time exploring different aspects of aging, and finding the beauty in the inevitable. I’ve always been drawn to stories of triumph and determination, and that’s what I’ve been able to find over and over again through my work. What an amazing journey this has been.

Another thing I’ve learned through trial and error is that writing is truly an art. Being an “excellent communicator” means to tell the story, to show the readers what you want them to see, and not just report it. Including resources in an article helps increase the level of excellence, as well as images and powerful quotes that help reiterate the focus of the story.

I’ve learned that simplicity is the ultimate form of sophistication. I tend to over explain certain aspects of my writing, but now realize that in a professional journalism setting, you have to be concise and always accurate.

Before this semester, I had discounted the importance of the aging generation, thinking that it really had nothing to do with me while I’m still young and in college. What I realize now is that it has everything to do with me. We are the future older adults, and we have to prepare for that now. And from what I’ve heard, getting older has its advantages and joys in living life to its fullest.

ABOUT ME: 

I have always had a passion for writing. When I was little I would always enter in “Reflections” contests to submit my stories and artwork, which sometimes ended up going to regional and state competitions. I loved the fact that others could read and experience something that I had been able to share.

That passion segued into my high school years, where I was a reporter and editor of The Crusader, our high school newspaper at Granger High in Salt Lake City. It was then that I truly fell in love with journalism. I loved conducting interviews, and loved the positive reaction when others would see their quote or picture published in the newspaper. I loved seeing a reaction to my work, and loved the challenge of writing a captivating article. That’s when I knew that I wanted to pursue a career in journalism.

Throughout my time in college I have followed this dream. I graduated with my Associates Degree of Science in Sociology from Salt Lake Community College, because I love the human aspect of our community, which directly ties into journalism. After transferring to the University of Utah I decided to major in communication with an emphasis on broadcast journalism. I hope to become a journalist or reporter after graduating, and be able to inspire many people with the written word.

Filed under: Blogs & Bios, Student-Journalists | Leave a comment »

Chandler Hunt and the gift of sight

Posted on December 17, 2013 by comm5775

Story and photos by CALLEN CRENSHAW

How would life be for a person who does not have use of one of their five senses? Can someone with that type of disability live a normal life?

Chandler Hunt is now a senior at the University of Utah.

Chandler Hunt is now a senior at the University of Utah.

From a very young age, Chandler Hunt learned how to do “normal” tasks without the use of one of these senses, his eyes. As a result, Chandler went about his day feeling and listening for social and emotional cues.

Chandler was diagnosed as legally blind at age 5. His father, Bill, had a really difficult time grasping the reality of his son’s disability. The formal term for this condition is called dislocated lenses. The lenses in Chandler’s eyes became more dislocated with time. The timeline for this process depends on the gene itself, which is hereditary.

Bill said that his side of the family produces this gene and every one of his siblings suffers from it. One positive aspect of his son’s diagnosis is the technology factor. “Technology never ceases to amaze me, because Chandler was diagnosed so young doctors have been able to start to reverse his eyesight,” Bill said.

However, he realizes that the condition has made his son learn everything in a different way, a more difficult way. As a father he said his son has been labeled as “different” since he lost his eyesight completely in high school.

Bill Hunt enjoys hiking in Cottonwood Canyon when he visits Chandler in Salt Lake City.

Bill Hunt enjoys hiking in Cottonwood Canyon when he visits Chandler in Salt Lake City.

Chandler spent his childhood participating in monthly doctor visits and adding what he recalled as “what felt like inches to my lenses.” With each of these visits the prescription in his glasses became stronger to the point where he eventually could only see through a small portion of his lenses. Bill said Chandler described the way he sees people as “little specks or dots with fuzziness attached to them.” This was concerning to him as a father.

The next big hurdle in Chandler’s life was his driving test. Although he struggled through school at Cornwall Central High School in California, he was able to get by with the help of many teachers, counselors and friends. But the driving test was something he had to accomplish on his own. He did not pass due to his eyesight. It was then that Bill realized his son needed to see the best surgeon and inquire about the latest technological advancement, LASIK eye surgery.

Chandler began physical therapy for his eyes and began preparing for what would total 19 surgeries. However, the breaking point happened when Chandler participated in a risky surgery that had a small chance of being successful in recovering his vision.

“I was completely against the surgery,” Bill said. In fact, he forbid Chandler to participate in it because it was so risky. “I didn’t think he understood the risk he was taking. If it didn’t work he would lose his eyesight completely, forever.”

This was a risk Chandler wanted to take. When he turned 18 he had the surgery.

He participated in a case study along with 12 other people. Out of that group, he was one of three who had a successful outcome. Although his recovery was two months, Chandler discovered that the surgery had reversed his eyesight and he was now able to learn how to read and write.

Physical Therapist Susan Bateman said in a phone interview that Chandler was one of the “most unique cases I have seen thus far in my practice.”

That is because Chandler is among 3 percent of the population that has the same form of the disability. A much higher percentage of Americans are legally blind due to other causes.

Although Chandler regained his eyesight, other patients like Chloe Hart did not have the same outcome. Hart says she knew the risk she was taking in having the surgery and it was “painfully hard to watch some of the patients receive their eyesight while the rest of us were left blind to some degree.”

Chandler feels bad for other patients like Hart who did not have the same result as he did. However, he believes that God knows what is best for everybody and that he needed the “gift of sight at that point in (his) life.”

Chandler and Bill Hunt enjoy spending time with each other outdoors.

Chandler and Bill Hunt enjoy spending time with each other outdoors.

Chandler is grateful for his eyesight and unlike most people, he does not take it for granted because he knows what it is like to not have it.

“The world is a very beautiful place, and I can say that because for the majority of my life I have not been able to see it,” he said. “But I have experienced it and I have seen what it offers people and that gives me strength. Strength to overcome my newfound challenges and the strength I need to make a difference.”

Filed under: Medicine, People with Disabilities, Profiles | Tagged: , | Leave a comment »

Marriage equality for people with disabilities

Posted on December 5, 2013 by comm5775

Story and slideshow by ANGIE BRADSHAW

Learn more about marriage equality for people with disabilities.

According to the Cornucopia of Disability Information, approximately 43 million Americans, or almost one out of five people, have a disability, making it the largest minority group in the U.S.  They are also among some of the poorest individuals. According to The World Bank, about 20 percent of the world’s poorest people have some kind of disability.

Employment is another challenge faced by people with disabilities. According to the United States Department of Labor, the 2013 unemployment rate for people with disabilities is 13.1 percent compared to 6.8 percent for people without a disability.

This could be the reason why so many individuals rely on assistance such as Social Security to help sustain a healthy living.

Among the many decisions faced by people with disabilities, marriage can be one of the most difficult.

Only 50 percent of individuals with a severe disability end up getting married, according to the Americans with Disabilities report.

The Utah state government assists single people with disabilities to help cover costs and provide accommodations where needed. But, if those individuals decide to get married, they could lose all their state-funded benefits or they could be substantially decreased. This leaves them to decide between marriage or continuing to receive benefits.

According to the Social Security Administration, the 2012 rates and limits are:

  • SSI will change from individual rate to couple rate.
  • If two people who receive Social Security Income (SSI) get married, they automatically receive 25 percent less.
  • Income limits: You can’t make more than $698 per month individually or $1,048 for couples to qualify for SSI.
  • Asset limits: You can’t have more than $2,000 individually or $3,000 as a couple to qualify. All of the following are counted as assets: cash, checking account, savings account, stock/bonds, and motor vehicles (except for one). If you exceed these amounts you do not qualify for SSI.

The difference in the benefits amounts between married and unmarried individuals is termed the “marriage penalty” by the National Council on Disability. Furthermore, the SSI can deem a couple married even if they are not legally wed. According to an article in Apostrophe magazine and the Social Security Administration, “The Social Security policy states that a man and a woman who live in the same household are married for SSI purposes if they hold themselves out as husband and wife to their community.”

Disability Rights North Carolina reported, “SSI beneficiaries are deterred from marrying because it will cause a reduction in crucial benefits that are already hardly enough for basic food, shelter and disability related expenses.” The document further noted, “For example, a national housing study published in 2007 found that the national average rent for a studio efficient apartment was more than a full SSI monthly benefit.”

With the cost of living on the rise, the amount of SSI benefits becomes more and more inadequate.

Drew Hanson, a senior at the University of Utah, has dealt firsthand with this. Hanson was diagnosed at age 4 with hearing loss. His parents made the decision to get him hearing aids, which he extremely disliked at first. “I would take them off and throw them across the room,” Hanson said. He has since gotten used to them and continues to use his hearing aids on a daily basis and uses lip reading as a back up.

At 24 years old he met Becky, who later became his wife. They waited two full years before finally deciding to get married. They had to weigh the options of having his benefits decrease and get married or hold off. Ultimately, they decided to get married.

Luckily, his wife got a job with the state and they now have benefits through her work..

They now have a 2-year-old daughter named Takira, which means, “treasure” in Japanese.

In several online articles many people believe the marriage penalty is an “anti-family” law and that something should be done. Citizens are advocating the marriage penalty and getting petitions signed, including a Facebook page called “Marriage Equality for People with Disabilities.” Their mission statement says, “Fighting for the right for people with disabilities to be married in all 50 states without financial, medical and economic penalties.”

There is also a website called thepetitionsite.com whose goal is to get 10,000 signatures to remove the marriage penalty against people with disabilities. So far, the petition has only 846 signatures.

Carly Fahey, also a senior at the University of Utah, has cerebral palsy. She said many people with disabilities wait a very long time before getting married or decide not to do it all because of the negative impact it could have on their lives.

“I’m confident that marriage will be wonderful,” Fahey said, “but figuring out the legal details will be an obstacle for sure. Something needs to be done.”

Randal Serr, director of Take Care Utah said in a phone interview that many people with disabilities are having difficulties with health insurance coverage and knowing where to start.

TCU provides assistance to those who are uninsurable because of their disability and pre-existing conditions. Employees work with individuals as well as 13 organizations in the Salt Lake Valley to navigate the health insurance process.

Serr said many health insurance companies are reluctant to insure individuals with disabilities because the state provides coverage through Medicaid and Medicare. Furthermore, he explained that under those programs there are many stipulations making it difficult to qualify and stay qualified.

For instance, the Social Security office decides who is considered disabled. People are asked a series of questions such as: are you working, is your condition severe and is your condition listed as a disabling one. From there, staff decide whether individuals fall under the disabled category.

“With Obamacare I think it will drastically change and be a positive direction for people with disabilities, on the application they don’t ask about pre-existing conditions,” Serr said. “In fact the only health-related question they ask, is if they use tobacco.”

As for marriage the fight continues in creating equality. Blogger Ashley Lasanta wrote, “To love and be loved in return is inherent to all human beings. To overlook or deny the rights of the disability community in their capacity to love and be loved undermines our ability to truly fulfill our commitment to better the lives of others.”

Filed under: People with Disabilities, Politics | Tagged: , | Leave a comment »

Utah’s employment resources for people with disabilities

Posted on December 5, 2013 by comm5775

Story and slideshow by PAUL S. GRECO

Meet Corby Campbell and learn more about his success story.

People with disabilities bring valuable skills to the workforce. For example, in 2008 the National Science Foundation reported more than 600,000 scientists and engineers in the U.S. have disabilities.

Some top innovators have learning disabilities, including chief executive officers of Ford Motor Co., Xerox, Kinko’s and Charles Schwab. Apple’s Steve Jobs had dyslexia.

The federal government and each state provide means for people with disabilities to receive assistance with getting employment.

The Utah State Office of Rehabilitation (USOR) is located in downtown Salt Lake City inside the Utah State Board of Education building. Its mission is to assist eligible people with disabilities in obtaining employment and increasing their independence.

The USOR has four divisions: the Division of Rehabilitation Services, Division of Services for the Blind and Visually Impaired, Division of Services for the Deaf and Hard of Hearing and the Division of Disability Determination Services.

Kyle Walker was recently selected as the director of the DRS. He’s been employed with USOR for 13 years.

Born in California and raised in New Mexico, Walker received his Bachelor of Science in sociology and Master of Rehabilitation Counseling degrees from Utah State University. He’s lived in Utah for 20 years.

Walker said every counselor working for USOR has a master’s degree and is licensed with the National Board for Certified Counselors in addition to being state certified.

“So when a person comes in our door,” Walker said, “we’re not just looking at ‘let’s go get you a job at McDonald’s.’”

Instead, clients are given an assessment by a certified counselor. This evaluation is to help the client make meaningful choices for employment, taking into account their interests, aptitudes, abilities and values.

But first, a client must be considered eligible for counseling.

As one of the four divisions within USOR, The Utah Division of Disability Determination Services (DDS) is designed to determine if a claimant is disabled or blind.

Because 40 percent of USOR’s clients have mental illness and 25 percent have cognitive disabilities, evidence must first be obtained. To attain evidence, a claimant’s medical records are sought. If that evidence is unavailable or insufficient to make a determination, the DDS will arrange for a consultative examiner’s evaluation in order to gain additional information.

After sufficient information is gathered, a determination is made by a two-person team consisting of a physician or psychologist and a disability examiner.

If the claimant is found eligible, employment counseling is conducted under the DRS’s Vocational Rehabilitation (VR) program.

After completing the assessment, determinations are made for clients regarding not only their interests and abilities, but also what is needed to obtain employment.

For example, if it’s decided that schooling is the best option, VR will pay for the client’s tuition costs. If transportation is an issue, VR will provide travel arrangements to work sites through UTA or by making special accommodations to the clients’ vehicles — things like hand controls on steering wheels or wheelchair lifts.

If working for an employer is not the answer, USOR will fund self-employment opportunities.

“Really, our program is whatever we can do, whatever’s necessary to help them get back to work,” said Walker, director of the Division of Rehabilitation Services.

Eighty percent of the funding for VR’s services comes from the federal government. The remaining 20 percent is provided by the state’s Department of Education.

Employing individuals with a disability benefits both state and government.

In 2005, the University of Utah’s Center for Public Policy & Administration conducted an Economic Impact Study. The results showed that for every dollar the state contributes to the Vocational Rehabilitation program, $5.64 is returned. These returns are in terms of individuals paying taxes from employment and no longer needing government and state assistance.

Corby Campbell, 27, was born in Utah and lives in Orem. Nine years ago Campbell broke his neck in an accident and uses a motorized wheelchair.

“I can’t feel anything below my armpits or move anything below my armpits,” Campbell said.

He said someone told him about the Vocational Rehab program and that it might be able to help pay for college and other job-related necessities.

“And so, I went there,” Campbell said, “expecting to find help from them to get me through school.”

He talked with VR’s counselors and they helped him get started at Salt Lake Community College. Later, he transferred to Brigham Young University and graduated with a Bachelor of Computer Science degree. The Vocational Rehab program paid all his tuition costs.

“They’re wonderful,” Campbell said. “They’re super great people that are just all about trying to help you and figure out just where you want to go.”

In addition to helping with his schooling, VR got him in touch with the right people so he could buy a van.

He bought one with a ramp. VR paid for steering wheel modifications and other hand controls like special knobs to control the wipers, heating controls and other items.

“So that I could drive it independently, which was great,” Campbell said.

He felt his counselors liked working with him because he had direction and he was trying to obtain the goals they set with him.

Campbell finished school in December 2010 and started working full time as a software developer for Mobil Productivity Inc. in Orem the following February.

But his van broke down.

He bought a new one and paid for all of the modifications himself.

“I’m completely self-sustaining,” Campbell said. “That’s what a degree and a van did for me. That’s the point of VR.”

Another resource that helps people with disabilities find employment is TURN Community Services located at 423 W. 800 South in Salt Lake City.

Karen Wright directs two programs for TURN, vocational rehabilitation, and employment personal assistance service.

The latter assists clients who need help with daily living tasks so they can get ready for work. In addition, if the person needs help during work, a personal assistant will act as a liaison for the employer and TURN’s client. These services are provided free of charge.

Wright also works directly with USOR’s vocational rehab counselors once they have completed a client’s assessment and determined whether she or he can work.

“We start on thing like resume, job development, some life skills. Things like learning how to use a bus, learning how to use TRAX, learning how to advocate for themselves,” Wright said.

The list of companies that hire people with disabilities is long. Businesses include Home Depot, Kentucky Fired Chicken, Dan’s Market, WinCo Foods and Sutherlands.

Wright said people with disabilities are very dedicated. “They want to get up in the morning and get ready and they want to go to work. They really like working and they’re good hard workers.”

Being able to be in the workforce not only increases the income a person with a disability makes, but also betters their quality of life.

According to USOR, the following information demonstrates the individual and program success VR achieved during 2012:

  • 30,853 individuals were provided with VR services.
  • 3,427 individuals with disabilities were successfully employed.
  • $15,437,130 in estimated annual taxes were paid.
  • 146 public assistance recipients were successfully employed.
  • 671 Social Security Disability Insurance recipients were successfully employed.

In addition, clients found work in the following areas:

  • 1,032 industrial
  • 754 sales/clerical
  • 727 service occupations
  • 704 professional occupations
  • 98 homemaker/unpaid family worker
  • 74 farm/fishing/forestry
  • 37 self-employed

“This is how welfare programs should work,” Corby Campbell said. “This is what I see Vocational Rehab as: (it) is something to help people that fell down … get back in a way so they can be independent.”

Filed under: Business, Education, Nonprofits, Organizations, People with Disabilities, Profiles, Utah's Economy | Tagged: , , | 1 Comment »

Opportunities for actors who are disabled are scarce in Salt Lake City

Posted on December 5, 2013 by comm5775

Story and slideshow by MAKAYLA STOWELL

See photos of Sandbox Theatre’s production of “Curtains.”

The overture starts, the lights hit you, and you act your heart out. Actors across the country find this feeling to be one of the most exhilarating and exciting things in the world. Shouldn’t this feeling be equally available to everyone, regardless of disabilities?

However, that is not always the case in Hollywood. Actors with disabilities are finding it very hard to find work.

According to an article published by the Deseret News, actors without disabilities are being hired to portray characters with disabilities far more often for large-scale movies being produced in California.

This isn’t only happening on a national level, however. In a local perspective, there are very few actors with disabilities performing on Utah stages.

What few opportunities there are in Salt Lake are hard to find out about, and harder for actors with disabilities to actually audition for.

But it isn’t about the money. Some actors with disabilities say they just want the chance to perform and feel the exhilaration of performing in front of a live audience.

So how are disabled actors in Utah getting the opportunity to get up on stage and do what they love?

In November 2011, Jordan Valley School in Midvale, Utah, put on a production of “Beauty and the Beast.” The cast was made up entirely of students with disabilities.

According to the KSL news story, the show was a huge success and audiences loved it.

Jaycie Vorhees, music therapist for the school, said in the story, “A lot of them are smiling more than I’ve ever seen them smile before.”

This was one opportunity for actors in high school to perform, but what about those actors who are disabled who aren’t in school?

The Sandbox Theatre Company, located in Midvale, offers an opportunity for one blind actress to get on the stage.

Kira Larkin, who is now 36, has been blind since she was a child and loves to perform.

Bridgette Stowell, the producer for Sandbox Theatre Company, said Sandbox enjoys giving Larkin the opportunity to perform.

“It gives her something to do and she works really hard,” Stowell said.

Stowell recalled one time during a production of “Spamalot” that Larkin walked across the stage holding a sign that read, “Did you say Holy Braille?” instead of Holy Grail, which in a big joke within the show.

She said casting Larkin in the shows does present challenges. “She has to have someone guide her around stage and we have to come up with alternative choreography since she can’t do the major dance stuff.”

Stowell said she has received several comments from audience members who think it is really neat that Larkin can be involved with the shows.

Susan Noren, who came several times to see “Curtains,” the last musical produced by Sandbox, thought that Larkin did a great job.

“I wasn’t distracted by Larkin at all, however at one point I was not sure what she was doing in the background,” said Noren, who was aware of Larkin’s visual impairment before seeing the show.

The choreographers had placed Larkin in the background or off to the side of most numbers because she wasn’t able to do the more advanced choreography.

“I think it is really neat that they would make a part for her and that she can add enrichment to her life by being in the shows,” Noren said.

Noren regularly attends theater performances around the Salt Lake Valley and said she had never seen any other actors with disabilities in another show.

She did, however, say that in another Sandbox Theatre production, she had seen an actor without disabilities play the part of the wheelchair-bound President Franklin D. Roosevelt.

Stowell said no actors with disabilities auditioned for the role and the actor who was cast worked hard to portray the disability to the best of his ability.

Larkin started performing when she was in the fourth grade. At her elementary  school, it was required that all students in the fourth and fifth grades audition for the school play.

She fell in love with performing and has been doing it ever since.

The first show she did with the Sandbox Theatre Company was “The Sound of Music” in 2008. She heard about it from a friend who encouraged her to audition. Figuring she had nothing to lose, Larkin went to auditions.

She was cast as a nun in the show. She enjoyed the performing and loved getting out and being involved.

Larkin has been in every performance the company has produced but one since then. These shows include “Beauty and the Beast,” “Annie,” “Joseph and the Amazing Technicolor Dream Coat,” “Spamalot” and “Curtains.”

The only show Larkin didn’t audition for was “The Scarlet Pimpernel.” The directors told her there was a lot of dancing in the show and some on-stage combat. It would probably be best if she sat that one out.

She missed performing but understood and came back to audition for the next one.

“The hardest part is sitting and waiting while everyone else learns the choreography,” Larkin said.

The choreographers have to be patient as does Larkin while they teach modified versions of the more difficult choreography to her.

Larkin is not aware of any other theater companies in Salt Lake that allow and even encourage actors who are disabled to audition for the shows.

She does have other friends who are disabled who do theater in the community. Her friend Kyle, who is also blind, has been in “Savior of the World” at The Church of Jesus Christ of Latter-day Saints Conference Center. Like many other talented artists, he also plays the piano despite not being able to see.

Resources for actors with disabilities are available, however. A company called Abilities United Productions allows actors who are disabled to post pictures, resumes and contact information on the company website for potential casting opportunities.

Abilities United works mostly with paraplegics but will represent any actor with any disability.

The company is based in Logan, Utah. Larry N. Sapp II created the company in 2005 after he nearly lost his life in an accident that left him paralyzed from the waist down. He also designed the business model for the company.

Abilities United aims to create an accurate representation of people with disabilities in its independent films. It also hires crew members who are disabled.

The company has produced several feature and short films, all starring actors with disabilities. These films include “London Time” and “Forever Yours.” All titles can be found on its website.

Through companies like Sandbox and Abilities United, actors who are disabled are getting more opportunities to perform. As Larkin wrote in her biography for the play bill of “Curtains,” “(I) would like to thank (the production team of Sandbox) for making my life better by performing in these shows.”

Filed under: Arts, Entertainment, Culture, Nonprofits, People with Disabilities | Tagged: , , | Leave a comment »

The life and success of Kirsten Morrise

Posted on December 5, 2013 by comm5775

Story and slideshow by NATALIE CHRISTENSEN

Meet Kirsten Morrise, her friends and family through photos.
Pierre Robin Syndrome is not a very well-known condition that is found in between one in 8,000 to one in 30,000 children born.

Pierre Robin Syndrome is a condition that comes in three stages, namely a cleft pallet, micrognathia (meaning a smaller jaw) and glossoptosis, an obstruction by the tongue from breathing.

Kirsten Morrise, a resident of Salt Lake City in the Sugar House area, has been dealing with Pierre Robin syndrome from the day she was born.

With her cheery personality and positive attitude, you wouldn’t believe the struggles this 20-year-old has gone through. She has been in and out of hospitals her whole life and  has undergone 40 surgeries. She has struggled with depression, been bullied through school and has overcome some learning struggles.

At a very young age she had a tracheotomy placed on her throat. Not only was this a burden for young Kirsten, but also for her mother Lisa who was taking care of two other children with medical needs.

“Kirsten was very sick and we were basically running an ICU and Timothy (her brother) was bouncing off the walls, and Michael (her brother) needed breathing treatments,” her mother Lisa said. “She was in the hospital 16 times her first year.”

Lisa said it was by the grace of God that she made it through that first year. Even with her two older boys needing help, having a child with a tracheotomy meant she needed to be at Kirsten’s bedside at all times.

When Kirsten had her tracheotomy removed at the age of 1, Lisa was able to return to work while neighbors watched Kirsten. Soon after however, problems started rising again.

“There were days when she couldn’t walk,” Lisa said. “And it was very strange … and things got a lot worse.”

Because of the lack of oxygen to her brain, Kirsten was having seizures which were getting worse and worse. Even with treatment, her seizures weren’t getting any better.

“‘Kirsten is sick get over it,’ was basically the attitude of a lot of professionals had that I talked to,” Lisa said. “But she kept getting sicker and sicker, and it got to the point where she couldn’t sit down on a couch without falling off because she was so out of it.”

As many times as Lisa tried to take Kirsten back to the hospital, they weren’t getting any help.

“And it’s like you’re running into a brick wall,” Lisa said. “It’s the scariest thing in the world to have your child be sick and have people not pay attention to you.”

Finally Kirsten was able to get the treatment but needed more surgeries.

She missed a lot of school because of the surgeries, and her social life wasn’t going very well either. A lot of Kirsten’s friends didn’t know how to treat her because of her surgeries. They saw her as being delicate rather than a normal kid.

“A lot of people don’t know what to say to me, because I’ve been through so much,” Kirsten said. “But I say they’re human. Do I really want them to be fully aware of what I’m experiencing?”

When Kirsten turned 6, she started skiing in Park City with The National Ability Center, a program that helps young kids recognize their strengths and helps build their self-esteem. The National Ability Center allowed Kirsten to participate in downhill skiing, and she had her own instructors to help her.

“My mom got me into skiing to help my upper trunk strength,” Kirsten said. “But as I got older and got better at it, it became not a pursuit (of) something to prove — I’m not delicate — but another activity I could add to my collection of talents I had.”

Kirsten went on in 2009 to win the gold medal in downhill skiing in the Special Olympics in advanced skiing.

Kirsten enjoyed skiing much more than physical therapy, it was more enjoyable and fun, and she could be outdoors. A lot of children with disabilities prefer to have their physical therapy this way, and Kirsten always looks back on the skiing experience with a lot of pride.

In 2005 Kirsten had screws put in her jaw called jaw distractors. The screws were visible on the outside of Kirsten’s face. When the screws were turned it forced her jaw forward so the jaw bone behind it could grow.

When asked if it hurt, she explained, “Yeah, you try getting the bone in your face being gradually moved forward.”

But, she added, “knowing what the end result is supposed to be makes it easier to endure.”

When she was 12, she attended LDS Brighton Girls camp. She enjoyed that summer so much she went back a second time and then finally went back as a helper in the kitchen in 2009 and then worked as the Craft Shack in 2010.

Kirsten loved it so much because the people there didn’t treat her like she was a disabled person. “They treated me like I was a human being,” she said. “There I had a blank slate, no one knew about my past … they let me do everything that everybody else did.”

Even having to wear an oxygen tank on her back as she went hiking her first year, she had fun with the girls telling them she was a cyborg.

If you ask anyone who worked with Kirsten at Brighton Camp a huge grin will come across their face.

Michelle Theurer was one of Kirsten’s good friends who worked at Brighton Camp with her. “It was great she always has something to say,” Theurer said. “So there’s never a quiet moment with her and she’s a really hard worker. Even with her limitations she’ll do whatever she can do.”

Theurer said Kirsten was always positive and was involved. She made things so much more fun because she saw them in a completely different way. “We would have time where we’d just hang out and it would be so fun to tease because she just dishes it right back at you, and she’s really ticklish.”

When Kirsten entered high school at Highland High, she was bullied by students taking her scooter and teasing her, calling her retarded and stupid.

“I have cerebral palsy and I have mood disorders, and I have hypotonia which means low muscle tone,” Kirsten said. “Those things have kind of caused with the bullying because of my posture and people look at me funny and also not being very athletic influenced the bullying.”

While attending high school, Kirsten was also going to college because of how much her surgeries held her back.

Kirsten attended Utah State University, because neither Brigham Young University nor the University of Utah sounded appealing.

“I made a plan to get to college,” Kirsten said. “And even though I got to college late, I had a plan I would get all of my high school work done by a certain time, and I would be able to function well enough to go to college.”

She picked social work as a major because she wanted to help others. “I feel like I have a capacity of empathy and I feel like I can give so much,” Kristen said.

Theurer also attended Utah State with Kirsten.

“Even though she may have challenges,” Theurer said. “She is always quick to realize that others have challenges too. She doesn’t seek for pity, but she does seek to serve others.”

Kirsten is looking toward the surgery that will fix it all. The procedure is called an End to End Anastomosis. Doctors will take out the part of the trachea that is scarred and then sew the ends of her trachea together. She went in early 2013 to Cincinnati to have the surgery done, but her throat wasn’t ready for it. So, on Dec. 10, 2013, she had surgery to advance her upper and lower jaws and tongue.

“Even though I have all these issues, I have a plan for how I’m going to do things and make sure I can do them,” Kirsten said. “I can take care of myself, I can do school, I can go on hikes, just not on big ones, and I’m a gold medalist in downhill skiing. Anything I put my mind to most of the time, I can do.”

Filed under: Medicine, Mental Health, People with Disabilities, Profiles, Science & Technology | Tagged: | Leave a comment »

Utah’s Disability Law Center, an advocacy instrument for people with disabilities

Posted on December 5, 2013 by comm5775

Story and slideshow by DYLAN LIERD

According to the Centers for Disease Control and Prevention, roughly 20 percent of the U.S. population has some type of disability. In Utah, the Disability Law Center works to reinforce the laws that protect the almost 300,000 Utahns with disabilities, to better defend the rights of this large demographic.

The DLC is the only law agency in Utah that provides educational and self-advocacy assistance concerning legal and educational rights for citizens with disabilities.

The center is a private, nonprofit organization that conducts its services for clients at no cost. The agency’s headquarters is located on 205 N. 400 West in Salt Lake City.

The agency is also designed to administer federal protection and assistance for people with disabilities in result of the federal government mandating all states to have a protection and advocacy agency for people with disabilities. This was created in 1978, and is still enforced today.

Six attorneys are currently at the DLC. The rest of the organization’s staff members in Salt Lake City, Logan and Cedar City help the center’s attorneys oversee home and community-based services for more than 4,400 Utahns.

Andrew Riggle is the public policy advocate for the DLC. He said advocacy for people with disabilities has changed for the better, but a lot of work still needs to be done.

“We try to push the envelope as much as we can within the agency, and also externally, to talk to people and let them know how capable people with disabilities are, and how much more they would be able to do if they are given a little support,” Riggle said. “I think that is one of the biggest challenges that we are facing with disability in general. People with disabilities don’t have high expectations for themselves and the community doesn’t either.”

The agency conducts open outreach programs to educate the public about the potential of Utahns with disabilities. These programs are administered throughout the state and everyone is welcome to attend.

Support for Utah’s communities

According to the center’s 2012 annual report, 1,677 individuals with a physical disability received services. Nearly as many clients — 1,637 — pursued legal guidance for issues concerning a mental illness. The center also served 579 individuals with an intellectual disability and 242 people with a brain injury.

To become a client, individuals must prove they have been discriminated against within the workplace, public building or private business.

In the workplace, the DLC helps people receive necessary services, reasonable accommodations and Social Security benefits. Staff will also make sure employers do not discriminate or ask questions concerning clients’ disability.

For housing discrimination, the center ensures that affordable housing can be granted to all citizens with disabilities.

The agency works with landlords and property owners to make certain they do not hike rent or discriminate against people who are trying to purchase a home.

Staff lawyers also advocate for increased accessibility where people with disabilities live, such as an apartment complex, so their clients can obtain optimal living conditions.

In addition, the DLC works within the public school system.

According to the DLC, 60,000 K-12 students have a disability in Utah. In order to protect their legal rights, the center ensures that the Individuals with Disabilities Education Act and the Elementary and Secondary Education Act are implemented.

Another portion of the Disability Law Center’s work entails observing organizations and group homes for people with disabilities. This is conducted by a section of the DLC called the Monitoring and Investigation Program, which inspects a variety of for-profit and nonprofit organizations such as the Utah State Hospital or Utah Independent Living Center. This is done to confirm that organizations are abiding by ADA and DLC standards.

The program legally grants the center the ability to visit an organization or group home at unexpected times to view the living and social conditions of the area. The agency sees if there are alternative ways an establishment can better serve its patrons.

“With the Monitoring and Investigation Program, we are able to advocate for greater amounts of community living programs for people with disabilities and help those that are living in community homes have good living conditions,” said Erin Hough in a phone interview. “Every good law center has an investigation area to research and look out for the best interests of their clients, and that is what we are doing,” said Hough, who is the advocate for the DLC in charge of the program.

Taylor Campion, a law student at the University of Utah and law clerk for the DLC, assists with the Monitoring and Investigation Program, among other things. She said the work the center does is strenuous but necessary.

“I have a brother with Down syndrome and it’s always been a part of my life, so that’s why I wanted to do disability law,” Campion said. “Seeing the struggle for people with disabilities is hard and it’s important to use the law within our community to assist people with disabilities.”

Financial contributions and unifying efforts

The DLC currently has a 15-member board of trustees that helps administer goals within different parameters of the DLC.

However, due to the DLC’s limited staff and financial resources, the agency and board must determine which issue or group needs the greatest amount of attention.

According to the DLC, around 80 percent of its funding comes from the federal government. The rest comes from grants and contributions from different donors.

Laura Boswell is an attorney on the abuse and neglect team for the DLC. Boswell helps ensure that the federal protection and advocacy system is administered. But, she says areas still need improvement.

“It is a challenge to do what we have said, and stand and have our services available at no cost,” Boswell said. “It’s hard for us to target our limited resources at those who have no other means and no other option. There are those outliers that come to us who can afford legal help, but most can’t.”

Some of those who can’t afford their own legal assistance are those who fight to keep their family together — regardless of financial reasons. Boswell said it is gratifying to see her work benefiting families whose siblings could be sent to care facilities or to the Utah State Developmental Center, but are able to stay home with the help of the DLC.

She said if the center were able to receive more funding, it could hire more lawyers and staff to help an even larger amount of individuals in need of legal representation.

Boswell also said 75 percent of the agency’s clients report that the DLC is the only place they can go for assistance. Therefore, if the state were able to allocate more revenue for the DLC, and more donors were willing to contribute money, the center would be able to enhance its legal work for future clients.

“I think the biggest task is basically protecting the legal rights of people with disabilities,” Boswell said. “When you think about the almost 300,000 people in the state that have a disability, it is pretty difficult. But we still do a pretty good job with the funding that we have.”

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Para Quad: Wheeling in the mobility of choice

Posted on December 3, 2013 by comm5775

Story and slideshow by WENDY DANG

Take a tour of Para Quad Mobility and see some customized vans.

For 36 years, Para Quad Mobility has been one of the oldest businesses in the Salt Lake Valley to install vehicle modifications for people who use wheelchairs. Located at 2572 S. West Temple, Para Quad stands to offer their services to those who need it.

As specialists in selling and repairing wheelchair lifts, Para Quad also installs custom-made hand controls for those with limited mobility. Anyone who is in need of a van or is having problems with their wheelchair lift can find help in the able hands of the main technician.

Fuhriman is one such technician. With stacks of framed certifications verifying his expertise, he is well versed in all things related to Vantage Mobility, Inc.

“They’re the ones in Arizona and who I used to go do my certifications,” Fuhriman said in regards to VMI who specialize in modifying minivans like a Honda Odyssey or Toyota Sienna. They completely lower the floor in order to give enough headroom to those who use wheelchairs.

To accurately repair and maintain any work VMI has done on a van, technicians like Fuhriman must go through training and pass certifications in order to understand how each vehicle modification works.

The certification must be renewed every two years. Fuhriman used to go to Arizona to update his paperwork but he says “Now everything’s online,” jokingly lamenting a loss of vacation time.

Another name Fuhriman is more than familiar with is Ricon, a prominent brand of wheelchair lifts. These lifts are usually fitted in larger vans like a Mercedes or Freightliner Sprinter van that have raised roofs for passengers to have more head room.

When it comes to actually driving, Fuhriman does a lot of work with modified hand controls near the steering wheel.

If a customer cannot use their legs, Fuhriman can install a handle that modifies acceleration and braking with just a push of a lever.

Fuhriman says he prefers to work with the driving modifications because “the most rewarding are the ones that make the most difference.”

The cost of these modifications ranges depending on which vehicle assistance is needed.  If a family member who uses a wheelchair is looking for a vehicle to use daily, then a lowered floor minivan is recommended. If a hospital is looking to fit their van with a lift, then Para Quad would install an electric lift for them, Fuhriman says.

The Ricon lifts are about $6,000 plus another $500 or so for tie down security measures.

The adjustments for a lowered floor van start at $25,000 which is added to the cost of the standard van. That can bring the cost of a brand new minivan fitted with a lower floor to about $52,000-$72,000 total.

William Stoddard has owned Para Quad for the past six years.

Stoddard says a lot of customers cover the cost of these modifications out of pocket, but some have access to limited funds provided by the state. Stoddard said if an injury resulted on a work-related issue, then Workers Compensation Fund would help pay for the vans.

Besides retail customers that look for assistance for their daily needs, Para Quad has done a lot of work with Primary Children’s Hospital, Huntsman Cancer Institute as well as the George E. Wahlen Department of Veteran’s Affairs Medical Center.

Local businesses also like to work with Para Quad. Tuyet Nguyen has worked with South Salt Lake’s New Image Vans for more than 20 years and does a lot of interior work like upholstery and carpeting for the vans.

“They (are) great people to work with. Very honest and fun,” Nguyen said.

Along with his work at Para Quad, Stoddard has created a public education initiative called “Don’t Disable the Disabled.” This public service announcement emphasized the danger and frustration people who use wheelchairs feel when a designated handicapped parking spot is occupied by someone who is not impaired.

The Disabled Rights Action Committee is working to create awareness of the initiative. Stoddard’s efforts to support it have been highlighted by three TV news stories by KUTV Channel 2.

The experience gained through working with Para Quad has equipped Stoddard with the necessary awareness needed to cater to each customer’s individual needs. Knowing the general details on most diseases and circumstances that limit mobility such as multiple sclerosis, Stoddard can counsel customers on which options would be best for them.

When it’s thousands of dollars at stake, Stoddard says, “We try and help people the best we can.”

Filed under: Business, People with Disabilities | Tagged: , | Leave a comment »

How accessible is Utah’s new Granger High School?

Posted on November 21, 2013 by comm5775

Story and photos by WENDY DANG

The new Granger High School in West Valley City opened its doors in Fall 2013. With a fresh start, Granger has made better accommodations for students with physical and learning disabilities.

Rebecca Beck, a resource teacher who taught in the old building, commented on the lack of accessibility her students who use wheelchairs faced in the old school.

Beck said in previous years, the school “tried lifts on staircases but (they) were too dangerous.”

The main entrance to Granger High School, which opened in Fall 2013.

The main entrance to Granger High School, which opened in Fall 2013.

Now with the $80 million building, Beck sees how much easier it is for her students to get around.

“(The) only access problems are crowds,” Beck said. Other than the hordes of students walking to class during pass time, the numerous elevators and wide hallways offer easier access for students who use wheelchairs.

Since 1958, Granite School District has kept the general floor plan of Granger relatively the same. Although the school tried its best to make the main building accessible by moving required classes to the main floor, students who used wheelchairs still couldn’t get to the upper level.

This new building has elevators scattered around the building, as well as accessible ramps that are noticeable improvements on the old school.

IMG_3030

A bathroom in the resource area offers easier access due to wider floor space.

The bathrooms, located around the resource student area on the first floor, have three wide stalls that are roomy and efficient enough for any student to use.

The building still has some planning issues to work out, however.

John Carlisle teaches photography, a humanities course and is also the yearbook and newspaper editor. Regarding the security of the new elevators, Carlisle said, “In the event of a legit fire alarm, we have to carry kids down. Safety first.”

If a fire alarm is set off, the elevators will shut down. The school authorities are still in the process of finding a procedure that might be safer for the students on upper floors.

The new building sits just south of the old one, where the parking lot and Granger Park used to be. Along with new facilities including multi-garage shops for automotive classes, an exclusive black-box theater for the drama students and an entire hallway for the sciences, Granger High School is offering more space for students to learn.

The school supplies each classroom with iPads for students to stay current with technology. Many teachers are using them to exercise alternative mediums of learning in order to reach students who have different learning and behavior disabilities.

Clete Johansson was an English teacher in the old math and English building. He was brought over to the new one to continue his classes.

“iPads probably allow me to do more (with students) if they can’t write” due to mobility issues, he said.

Brandon Moore, another resource teacher, implements aspects of technology into his classroom experience to accommodate the students’ different learning styles.

Widely known as the READ 180 program, the students in his class are rotated between 20 minutes on computers, 20 minutes in small groups and 20 minutes of individual reading.

This helps stir the usual pot of a traditional classroom. By replacing an 80-minute class lecture with interactive learning and engaging people skills, Moore can cater better to students who might have attention disorders and can’t focus for an entire class period.

Whether it be a physical or learning disability, Granger High School can now offer education to students when it couldn’t before.

Filed under: Education, Organizations, People with Disabilities | Leave a comment »

Fremont High School seminary teacher overcomes disability

Posted on November 21, 2013 by comm5775

Story and photo by MAKAYLA STOWELL

Jeremy Chatelain wakes up every morning and drives himself to his job at Fremont High School in Ogden, Utah, where he teaches seminary for the Church of Jesus Christ of Latter-day Saints.

Sounds like a normal day, right? Wrong. Chatelain is a quadriplegic. The simple task of going to his job every day isn’t so simple for him. But he does it anyway because it’s what he loves to do.

Fifteen years ago Chatelain dove off an Idaho bridge into shallow water and broke his neck, leaving him paralyzed from the neck down. The accident happened just six weeks after he signed his teaching contract with the LDS church.

Chatelain and his wife of less than a year had just moved to Blackfoot, Idaho, for his teaching career when the accident occurred.

Instead, the couple spent three and a half months at the University Hospital in Salt Lake City while Chatelain went through physical therapy. He said it was the “worst time of our lives.”

When Chatelain was finished with therapy, the young couple moved back to their home in Blackfoot.

Chatelain had been placed on leave from his job due to the accident. He was not quite ready to begin teaching full time so he decided to do some volunteer teaching instead.

After six years of volunteering and part-time teaching, Chatelain was ready to go back to full-time teaching at Blackfoot High School. The adjustment to teaching in a wheelchair wasn’t easy, but he persevered.

Then, Chatelain’s daughter, Sarah, was diagnosed with leukemia. The family had to travel to Primary Children’s Medical Center in Salt Lake City for her treatment. When the opportunity arose for Chatelain to transfer to a school in Utah, he took it to be closer to the hospital.

Sarah is now 11 years old and cancer free.

During her illness, Chatelain taught at several schools in the Ogden area. The LDS church assigned him to Fremont High School in 2013.

Daren Saunders, the seminary principal at Fremont, said, “I found out pretty quickly how independent he is and how helpful he is to our faculty.”

He knew Chatelain before the accident and knew about his dedication to teaching. Saunders was happy to welcome him to the Fremont seminary staff and have him teach the Gospel of the Church to teenagers.

As the seminary principal, Saunders handles all student requests to switch out of classes. “I have had very few requests to move out of his class, and the ones I have had haven’t even been related to his disability,” Saunders said in an email interview.

“Most of the kids love him and respect him. They find out from day one that his wheelchair doesn’t hold him back in any way from doing what he love to do, and he does it well,” he said.

He added that the seminary staff make sure not to do things that would automatically exclude Chatelain. They carefully plan meetings and retreats and make sure to think about his needs.

“Chatelain is so good to ask everyone for help, trying not to burden any one person,” Saunders said.

The Book of Mormon is the basic doctrine taught by the LDS church.

The Book of Mormon is the basic doctrine taught by the LDS church.

He believes that Chatelain’s disability helps him teach the doctrine of the LDS church. He offers a unique perspective and appreciation of certain beliefs of the church. He helps students to truly understand what it means to endure and persevere, despite life’s challenges and hardships.

“He really is a fantastic teacher. The kids love him and he loves them,” Saunders said.

Kat Flegal, a former student of Chatelain’s, said in an email interview, “I have always greatly admired his strength and great happiness that he has chosen since his accident.”

In addition, she said, “A typical class day with Jeremy wasn’t too much different than other teachers.”

Sometimes students would need to help put papers on the overhead projector, write on the boards or hand out papers. They also had to remember to keep backpacks and coats out of the aisle so Chatelain could wheel his chair through.

“Students were always happy and volunteering to help out,” Flegal said.

She said Chatelain would teach all of his students how to shake his hand at the beginning of the semester. It could be difficult, so he always gave them the option of bumping elbows.

“He was funny and his lessons were always well prepared. I think students like him just as much as any other teacher,” Flegal said.

Because of Chatelain’s injury, he did offer different insight into the teachings of the church.

“I think he applied the gospel to his life to a greater extent than most I know. He could have been bitter about his accident but instead he uses his story and his life to teach and uplift all of his students,” Flegal said.

Filed under: Education, People with Disabilities, Profiles, Religion | Tagged: | Leave a comment »

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