Fremont High School seminary teacher overcomes disability

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.

For some Utahns with disabilities, religion plays an important role in their lives

Story and photos by NATALIE CHRISTENSEN

Religion plays a huge part in many people’s lives, not only those living in Utah, but also throughout the United States.

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The LDS Chapel at 2700 South and Filmore Street. Kirsten Morrise attends this ward weekly.

According to a 2007 Pew Research Center study, about 78.4 percent of the U.S. is of a Christian faith, while 4.7 percent are of other faith, and only 16.1 percent of the population is unaffiliated with any religion.

Some people with disabilities who have faith look toward their deity in a way that people without disabilities don’t. In Utah especially, religion plays a big part in the lives of many people. About 62 percent of Utahns are members of the Church of Jesus Christ of Latter-day Saints. Three local LDS individuals who have disabilities have a range of different thoughts toward their relationship with their creator.

Jeremy Chatelain is a seminary teacher for the church. Just after he got married, he was on a trip with this family in Idaho because his brother was going to leave on an LDS mission. A tradition in his family when he was growing up was jumping off a bridge near where they liked to vacation. His wife dove in and realized it was really shallow, but she wasn’t able to warn Chatelain. He dove off and broke his fifth and sixth vertebrae, an injury that left him paralyzed from the neck down.

“Religion is a huge aspect of people’s lives who have disabilities,” Chatelain said. “It (religion) gives you a reason to get up in the morning. I think that’s why I keep going every day.”

Chatelain still doesn’t know why this had to happen to him. He admits he doesn’t always have a smile on his face because of what he has to go through every day. But he still looks toward his religion that believes after this life, his body will be made perfect, and that God has a plan for him.

“My faith has been motivation to accomplish the things I’ve wanted to do, along with my family,” Chatelain said.

He earned his master’s degree in education from Idaho State University in 2005, specializing in curriculum and instruction. He is now working on his dissertation about First Amendment implications in LDS Church history from 1829 to 1844 at the University of Utah.

According to a study done by the National Organization on Disabilities, as reported by Disabilities and Faith.org, 85 percent of people with and without disabilities say that religion is important in their lives. Unfortunately, only 47 percent of people with disabilities can attend their church services once a month because of the struggles of getting to their meetings.

Some don’t choose to worship because they feel alienated by their congregation and don’t like the culture of their religion, not their deity, but the way their religion portrays how a person must always act.

Kirsten Morrise, 20, who attends Utah State University, is an active member of the LDS church and loves her religion. But the culture of the religion is something that has rubbed her wrong.

“There’s a stigma to not being within the status quo, the status quo being happy sunshine,” said Morrise, who suffers from Pierre Robin syndrome. The condition makes breathing hard for her because of the way her jaw is structured. She also suffers from forms of cerebral palsy and depression. “Being disabled, people in the church sometimes like to say ‘God made you this way so you could have this trial’ or ‘God is punishing somebody else and making you this way to punish them for something they did.’”

Morrise said she wishes people wouldn’t see her disability as a punishment or a challenge.

But for other people with disabilities, religion can help not only them, but also those in the congregation.

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Metal cross on top of the steeple at the Wasatch Presbyterian Church, 1626 S. 1700 East, in Salt Lake City.

“I’ve learned the hard way that being imperfect and allowing people to help provides blessings in their lives,” said Jeni Sewell Roper, who lives in Orem. “(It) blows me away sometimes at just how much this happens.”

Sewell Roper, who has cerebral palsy, doesn’t like being seen as a person with a disability. Growing up, she didn’t like people helping her. To her, everyone has a disability — hers just happens to be something that everyone can see.

“Well, I teach and I know that we are all divinely designed to be imperfect,” she said in an email interview. “And I believe personally that I said ‘ok’ to this before I was born.”

Sewell Roper admits that during her teenage years she would have committed suicide if it weren’t for her religion. “If this was all that life had to offer what’s the point?” she said.

She taught herself how to walk and doesn’t have to use a wheel chair or crutches. She now participates in and helps out with 5Ks around the Salt Lake Valley and is a part of the National Speakers Association. She speaks to LDS youth groups around the state about her life. The title of her speech is “Wiggle Room.”

“And I’m learning as I speak that my disability helps me relate to people on a very intimate level,” Sewell Roper said. “Because ALL of us have ‘stuff.'”

Public transit services for Utahns with disabilities

Story and photos by PAUL S. GRECO

Jonathan Westling has cerebral palsy and uses a wheelchair. Monday through Thursday, he rides a transit service provided by UTA.

Since the passage of the Americans with Disabilities Act (ADA) of 1990, people with disabilities have been given equal access to transit programs. Transportation providers have the responsibility to make that participation possible.

Throughout the country, this service is known as ADA Paratransit.

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Riders must call for a curbside pickup by one of UTA’s Paratransit vans.

UTA’s Paratransit service consists of small buses, vans and taxicabs. Riders must schedule their trip up to seven days in advance, and service is curb to curb or from designated pick-up points.

“It’s a pretty good system,” Westling said. “UTA really does try to work with our schedules.”

To qualify to ride Paratransit, an applicant must have an in-person interview and an abilities assessment. For example, if a person is determined to be unable to independently ride UTA’s buses or TRAX rail service, even with training, they qualify to use Paratransit. Also, information provided by a health care professional may determine eligibility.

About 90 percent of Paratransit costs are subsidized, making the cost to riders less expensive.

UTA’s Paratransit costs $4 per ride. “Which I have to admit that is a pretty good deal,” Westling said. “But still for a person with a low income like I do, $4 is quite a bit of money.”

Costs vary from state to state. For example, in Los Angeles County, Paratransit costs $3.25 per ride, while in Colorado Springs, Colo., the cost is $3.50.

UTA’s Paratransit’s Rider’s Guide gives detailed information about what is expected of riders. Penalties are assessed to riders if problems arise.

For instance, after waiting five minutes, UTA’s Paratransit will leave a scheduled rider and issue a No-Show. Los Angeles County and Colorado Springs follow that same guideline.

UTA assesses points for penalties. Receiving 12 points within 30 days will result in a one-week suspension.

Points are calculated as follows: one point for rides not cancelled up to four hours before a scheduled pick up; three points for rides cancelled 30 minutes before a pick up; five points for rides cancelled less than 30 minutes or if the rider isn’t present within five minutes of a pick up.

“Yeah, I’ve been suspended a couple of times but not for quite a while because I am pretty responsible,” Westling said. He said other people he knows get suspended quite a bit.

Cherryl Beveridge, special service general manager for UTA, said in an email, “Because Paratransit service is a civil right, UTA cannot impose penalties that suspend a rider’s service without providing the rider an opportunity to appeal the decision, and to be heard.”

To help riders to not receive penalties, UTA offers incentives.

UTA’s Paratransit gives rewards to riders who have a good record — it’s called the “Responsible Rider Reward Program.”

This program says if a rider does not have any points on their record for a six-month period, free rides are issued. The six-month periods are specified as January through June and July through December.

Depending on how often a rider uses Paratransit during those six months determines the amount of free rides they’ll receive. For example, two free rides are given if riders use Paratransit once per week and have no points issued, 10 free rides for three round trips per week and 20 free rides for four or more round trips per week.

No rider rewards are offered by LA County or Colorado Springs Paratransit services.

Other transit services UTA provides also accommodate people with disabilities.

TRAX rail service connects individuals in the Salt Lake Valley.

TRAX rail service connects individuals in the Salt Lake Valley.

Buses, FrontRunner commuter rail line and TRAX rail services have the capacity to assist those with disabilities who do not qualify to ride Paratransit.

Katelyn Johnson is the program director for Turn City Center for the Arts (CCA). CCA gives people with disabilities the opportunity to develop their artistic skills. As part of her job, Johnson takes groups from CCA on UTA’s TRAX service for excursions.

“Their drivers are always accommodating,” she said, “with a few exceptions, nobody’s perfect.”

Johnson says a problem she sometimes runs into is when people with strollers and such use the seating area that’s designated for people with disabilities.

Katelyn Johnson, right helps a client at TURN City Center for the Arts, located at 511 W. 200 South in Salt Lake City.

Katelyn Johnson, right, helps a client at TURN City Center for the Arts, located at 511 W. 200 South in Salt Lake City.

This means that there isn’t enough room for Johnson, her colleagues and her group to all sit together. She then has to split up her group and wait 15 minutes for the next train.

To help with transporting people with disabilities, UTA created an advisory group. Individuals with disabilities are represented on the Committee On Accessible Transportation to ensure non-discrimination.

Members of this group meet each month for approximately two to three hours. “Attendance and participation are important,” UTA says.

Jeremy Chatelain hasn’t let quadriplegia deter him from his goals

Story and graphic by ANGIE BRADSHAW

It was a warm summer day in 1998 in the small town of Emmett, Idaho, where Jeremy Chatelain and his family enjoyed a traditional family vacation. That afternoon they floated down the Payette, a river so sluggish that Chatelain said, “The dead fish would beat them down.”

About 15 feet off the water was a bridge where they would jump off of into the water, an old childhood pastime. Connie, his wife of one year, jumped off and Chatelain dove head first shortly after. Seconds later he learned that the water was only 6 feet deep. He is 6 feet tall. He intensely hit the bottom of the gravel filled river.

On impact, one of his bones was violently shoved into his spinal cord, resulting in a vertebral burst fracture. He couldn’t lift his head, let alone get his face out of the water. Struggling to breathe, he mustered up enough energy to blow several modest bubbles and stay afloat. Moments later his family rushed in to assist and pull him to safety.

“Connie, I can’t move,” he gasped while gazing into the clear blue sky.

After waiting for what felt like forever, Chatelain was finally “life flighted” to Boise, Idaho. He didn’t know just how bad it was, until he arrived at the hospital.

After countless hours of surgery doctors informed him and his family that he would live the rest of his life as a high C5 quadriplegic. That day marked the start of some of the hardest days of Chatelain’s life.

Spinal cord injury

“Perceiving a loved one with a spinal cord injury is like distinguishing the same spirited person, alive and eager, confined and despondent, in an unconscious body,” Connie said in an email interview. “I mourned the loss of Jeremy’s body and all the things he did when it worked. We had to adjust and begin again.”

It took 3 ½ months of rehabilitation for him to learn how to live being paralyzed, as well as time and dedication to grasp the basic functions of daily living.

A year later, he was able to gain back some movement in his arms, allowing him to use a motorized wheelchair. It was no easy task, but Chatelain did not let his disability define him and instead confronted it head on. He said that he couldn’t have done it without his wonderful wife and family by his side.

“I would like to let the community know that what people do to help other people really does make a difference,” Connie said.

He slowly started getting back to what he loved, teaching. He started volunteer teaching at a school in Idaho and pursued a master’s degree at Idaho State University, despite not being able to take his own notes. With perseverance he finished up his master’s of education degree in 2005.

Chatelain and his wife eagerly wanted to start a family but struggled with getting pregnant. They eventually started the adoption process and two years later they finally received an answer to their prayers: a beautiful little baby girl. She had piercing brown eyes with a head of softly tufted brown hair. They chose the name Sarah, after Abraham’s wife in the Bible.

“Sarah gave us something else to think about,” Chatelain said.

When Sarah was about 2, the family found out that their precious daughter had been diagnosed with leukemia. The family endured a 3 ½ year emotional and physical struggle, driving from Idaho to Salt Lake City’s Primary Children’s Hospital for chemotherapy treatments.

The family reports that Sarah has been in remission for six years.

Shortly after graduating in 2005, Chatelain and his wife moved back to Utah, where they are both originally from, to be close to family. While in Utah they tried to adopt a second child. Finally, after seven years of a grueling adoption process that consisted of paperwork, home study and required classes, they finally became proud parents to a second child, a baby boy, Dallin.

Chatelain never lost sight of his goals and over the next couple of years he taught at several high schools in the Weber County area as a religious educator for the Church of Jesus Christ of Latter-day Saints. Today, you can find him teaching seminary at Fremont High School.  He also travels around as a motivational speaker.

Not only is he teaching, he is also pursuing his Ph.D. at the University of Utah with an expected graduation of 2015. His research focus is First Amendment implications in LDS Church history from 1829-1844. Chatelain is proof that overcoming adversity is possible.

“I would like to compare adjusting to a life event like this to running a marathon,” Connie said. “Starting out, you think you can imagine what it will take, you begin to train and teach yourself how to handle the long distance, but you know you haven’t truly completed the course until you reach and proceed across the finish line. It takes determination to convince ourselves to move forward and thrive through Jeremy’s injury. I must say that it has been rewarding to bring ourselves to increase, even though most every day has been difficult. We still have a long way to go, but we’ve sure come a long way.”

Tax incentives in Utah for hiring people with disabilities may go unnoticed

Story and photos by DYLAN LIERD

Federal and state tax credits aim to help Utah businesses hire people with disabilities. However, many companies may be unaware of the incentives that also strive to reduce the number of unemployed Utahns with disabilities.

Work Ability Utah, located at 1595 W. 500 South in Salt Lake City, advocates for unemployed Utahns with disabilities.

Work Ability Utah, located at 1595 W. 500 South in Salt Lake City, advocates for unemployed Utahns with disabilities.

According to Work Ability Utah, an organization that links employers with the workforce of people with disabilities, tax credits such as the Work Opportunity Tax Credit and the Utah Targeted Job Tax Credit are available for all businesses who are willing to hire Utahns with disabilities. But Carol Rudell, project director for Work Ability Utah, said not enough businesses are taking advantage of these credits.

“I see businesses that are perfectly willing to hire people with disabilities, but there are others that don’t know about the incentives,” Rudell said. “I see a lot of misses out there and a lot of stereotypes that are not true, and when people have more information they are more than happy to hire people with disabilities.”

The Work Opportunity Tax Credit is a federal tax credit that is designed to encourage cooperation with the Americans with Disabilities Act. According to Work Ability Utah’s website, businesses can earn an annual tax credit of $2,400 per hired person with a disability. Businesses can also earn a $9,000 yearly tax credit when hiring a disabled veteran. To receive these incentives, businesses must complete the Internal Revenue Service Form 8850 and the Employment and Training Administration Form 9061.

Businesses can also receive state tax credit by applying for the Targeted Job Tax Credit. According to the Utah State Tax Commission’s website, the purpose of its creation is to entice companies to hire people with disabilities in order to foster an integrated workforce.

The allotted credit minimizes the amount of income tax the business has to pay, and the amount of money the company receives is based on the salary paid to employed individuals. The maximum credit given is $3,000 per employee per year. This is a credit that can be received for the first two years that the person with a disability is employed. Companies are also not limited by the amount of individuals they can claim under the Targeted Job Tax Credit.

The Division of Services for People with Disabilities ensures the rights of Utahns with disabilities. DSPD is located at 195 N. 1950 West
 in Salt Lake City.

The Division of Services for People with Disabilities ensures the rights of Utahns with disabilities. DSPD is located at 195 N. 1950 West
 in Salt Lake City.

In order to apply for these services, the person with the disability must be eligible for services from the Division of Services for People with Disabilities. Businesses must then complete a TC-40HD form and have it approved by an authorized representative from DSPD.

Tricia Jones-Parkin is the program administrator for DSPD. She is the authorized person who accepts these tax credit forms. Jones-Parkin is tasked with training job coaches and approving businesses that apply for the Targeted Job Tax Credit. Job coaches are responsible for teaching employers how to professionally treat people with disabilities, and how employers can receive tax credits by hiring Utahns with disabilities. However, she said more businesses should be taking advantage of The Targeted Job Tax Credit.

“I haven’t received a single form turned into me this year,” said Jones-Parkin in a phone interview. “When I do training for job coaches, I tell them to tell businesses about the Targeted Job Tax Credit, but there is still not many businesses that do.”

Jones-Parkin also said that nationally, people with disabilities are the most under employed demographic. In Utah, the state is not doing much better than the national average.

According to the Department of Labor’s website, the unemployment rate for people with disabilities is 13.1 percent. This is more than double the unemployment rate for people without disabilities, which is 6.8 percent. That is why Jones-Parkins said that beyond the tax credits that Utah businesses receive, it is important to hire Utahns with disabilities in order to reduce this number.

In Utah, the Governor’s Committee on Employment of People with Disabilities works to advocate the importance of hiring people with disabilities to employers.

Leslee Hintze, executive director for the Governor’s Committee, said its members speak to employers about the tax benefits for hiring people with disabilities in order to entice businesses to hire these individuals.

“Once we advocate tax incentives to employers who have a tendency to say, ‘I don’t know if I can take this on,’ they are more likely to hire and continue to hire people with disabilities,” Hintze said in a phone interview. “Businesses really find out that they are great employees, they make the workplace better and they really do a lot for the business they are working for.”

According to the Committee’s website, businesses will also not see their Worker’s Compensation Insurance or Medicaid Insurance rates rise when they hire people with disabilities. Regardless of the incentives, Hintze said it also benefits the U.S. economy to hire people with disabilities so they can contribute financially to society.

“People with disabilities can give back tenfold by becoming taxpayers, which means they will become tax producers and not tax users,” Hintze said. “A country that does not take care of its least fortunate citizens, to me is pretty deplorable. It is a moral imperative, which is why businesses should be looking for opportunities like these because everyone will benefit.”

Educational accommodations for students with autism

Story and photo by MAKAYLA STOWELL

You’re confused and scared. You have no idea what’s going on around you. You feel completely alone. You are not sure why there are so many people around you. This is how school can feel for students with autism.

Experts say it can be difficult for students with autism to get an education and do well in school.  While autism has a very wide spectrum of symptoms, most students dealing with autism find it difficult to learn in a normal classroom setting.

Some individuals need very few educational accommodations. It can be as simple as a few extra minutes on a test or even an extra five-minute break in the middle of class. In these less extreme cases, it is often difficult to even tell that the student has a learning disability.

In advanced cases of autism, more specific accommodations may be necessary. Some students may require an assistant to take notes for them or walk with them to classes. Some students may need someone to assist them in the test taking environment and extra time to complete the exams.

Chris Burningham, an advisor for the Center for Disability Services at the University of Utah, said any reasonable accommodation the student needs will be provided free of charge to the student. It is all part of the American Disability Act which is a federal law that states that any company or institution is required to provide the necessary accommodations for those with disabilities. These can be anything from an interpreter for those who are hard of hearing to a note taker for those who have learning disabilities such as autism.

He said what they aim for is equal access. When a note taker is provided, the student is still required to attend the class. He said the office is now leaning more toward using Smartpens and not note takers.

A Smartpen records lectures while the student takes notes. It is used with a special notebook and can play back specific parts of lectures based on where the pen is touched on the paper.

Burningham also provided some statistics about the students that the Center for Disability Services helped during the 2011-2012 school year at the U. During that year,1,477 students were registered with the center. That is approximately 4.7 percent of the student population. He said that about 40 or 50 of them were autistic.

He said that ultimately the biggest service the center provides to students is advocacy with their professors. The advisors provide suggestions to the professors about how they can help students succeed and serve as a communication source between the student and the professors.

Another service provided to students with autism is a support group. The group meets every Friday afternoon. The goal of the group is to help students socialize and make friends who understand what having autism is like.

Kjersti Parkes, who teaches drama at Hunter High School in West Valley City, said she too provides accommodations for her student with autism.

“I have to be more patient with him and I grade him differently,” Parkes said. However, she said she did not receive any special training on how to deal with students with disabilities.

Parkes said she has to be familiar with his IEP, or individualized learning plan. This is a plan set up by the school, parents and teachers that outlines how to best help students learn. This is just one way students with disabilities are being accommodated in the public school system.

“Sometimes he gets anxious and I have to take some extra time and calm him down,” Parkes said. This is the only way having a student with autism has ever interrupted her class.

The student, who is in her beginning theater class, is required to perform a Shakespeare monologue like the other students. Parkes said this student’s monologue always gives everyone a good laugh. “He adds modern day words and loves to make the class laugh with his interpretation,” Parkes said.

Some students in the public school system receive assistance outside of the classroom as well.

This charm bracelet features the symbol for autism awareness. Baker wears it every day.

This charm bracelet features the symbol for autism awareness. Baker wears it every day.

Leanne Baker works privately as an applied behavioral analysis therapist. Baker offers a unique insight into how autism effects education. She uses the principles of punishment and reward to help children with autism learn appropriate means of behavior that can be practiced in the classroom. These behaviors can include echoic or mimicking noises, motor movements and many other behaviors most individuals would consider normal.

“Students with autism often lack these basic developmental skills, especially those related to socializing,” Baker said.

She helps students with autism in kindergarten through high school learn to fit in with other students and learn how to socialize with them. This can help the students with autism ultimately do better in school when they feel they are welcomed and understood.

Baker typically works in private homes with students. Since private homes are not government-funded institutions, the students’ parents pay Baker. Sometimes the fee can be quite high depending on how many hours she spends with the students each week.

Not every student receives extra help at home, however. Some families cannot afford to provide their children extra assistance and accommodations at home. The only assistance they receive is at the schools themselves.

Some students with autism are extremely gifted and smart, but don’t know how to express those skills and use them to their advantage. Part of the accommodations provided in school helps students learn how to use their knowledge in the right way.

The potential effects of marriage for people with disabilities

Story and graphic by ANGIE BRADSHAW

Costs of cerebral palsy

For most people, getting married is the happiest day of their life. But for Utahns with disabilities, it means something much more complex.

It means they could lose all their state-funded benefits or they could be substantially decreased. Most people in online articles refer to this as the “marriage penalty.” This leaves individuals to choose between marriage and continuing to receive benefits. Furthermore, many people in online articles also believe this is an “anti-family” law and that something should be done about it.

The Utah state government assists single people with disabilities to help cover costs and provide additional accommodations where needed. This could be through Medicaid, Medicare, Social Security Disability Insurance or Social Security Income.

“The theory is that a couple can live on less income together than they would as individuals,” wrote B.J. Stasio, an advocate on gaining awareness for this topic. Furthermore, Stasio wrote, “The marriage penalty is misdirected and wrong because it prevents may people with disabilities from getting married or even staying married. People with disabilities deserve to be able to get married to the one they love.”

But what happens when that’s not the case or both individuals have disabilities?

Carly Fahey, a senior at the University of Utah, has cerebral palsy, a developmental disability.

She was born healthy, but her lungs were slightly underdeveloped so she stayed in the Neonatal Intensive Care Unit in Florida for the first few weeks of her life. Fahey said it was there that the nurse administered a little too much oxygen, resulting in a neurological block to a portion of her brain. This caused a lapse in communication between her brain and her motor movements, specifically her legs and feet.

She has to use a walker to assist her in getting around. She said it also affects many parts of her body. For instance, she can’t control her body temperature and her eye coordination can become constrained and shifty. This can cause anxiety and severe migraines.

On a lighter note, Fahey said in an email interview, “I see the cerebral palsy as one of the brighter and more fun things about myself. There’s never a dull moment and I keep a really humorous outlook on things. I do everything that any college student would be planning on doing, except because of my disability … I always have a plan!”

Fahey says that 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.

She has a friend with a similar disability who told Fahey how much she feels like she will have to give up — just for her right to get married. It can be quite the dilemma because the personal insurance companies are reluctant to insure individuals when they know that the state provides those insurance benefits already, Fahey said.

According to the Centers for Disease Control and Prevention, the average lifetime costs for someone with cerebral palsy are estimated at $921,000. To break this down, it’s approximately $742,326 for indirect costs, $93,942 for direct medical costs and $84,732 for direct non-medical costs. This does not include emergency room visits and out-of-pocket expenditures. The dilemma can be overwhelming in deciding what’s the best option for all interested parties.

Of all the difficult things Fahey has encountered, the marriage issues will be one of the biggest challenges for her to navigate, she said.

“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.”

TRAILS creating paths to success

Story and photo by NATALIE CHRISTENSEN

TRAILS Brochure

After sustaining a spinal cord injury, it’s hard to get back into life as it was before. But, a program in Salt Lake City called TRAILS can help those individuals become involved in recreational sports.

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Sugar House Park is an area where TRAILS participate in preparing for races and other events. Photo by Natalie Christensen.

TRAILS (Therapeutic Recreation & Independent Lifestyle) helps anyone with a spinal cord injury get out and be active in outdoor recreational sports like skiing, hiking, kayaking and more. The main goal of this program is to help people not just physically, but also spiritually and mentally by keeping a tight community of people affected with spinal injuries.

TRAILS is housed in the University Hospital, which provides most of its funding. Medical residents as well as trained volunteers assist with the program by helping participants in the outdoor activities.

“We have a community of people with spinal injuries,” said Tanja Kari, the TRAILS program coordinator, in a phone interview. “Peer mentors are able to help each other.”

Mentors and participants give advice and share feelings and thoughts about this new part of their life with their peers. According to the TRAILS website, “The Peer/Mentor Program is a collaboration with United Spinal Association and links an experienced mentor to a peer who will work on problem-solving, self-management and assist with assimilation into an active lifestyle.”

Wally Lee has been involved with the program for five years and has really enjoyed it and what it has to offer.

“Having a spinal cord injury and trying to do something is an effort,” Lee said in a phone interview. “It’s a hassle to find transportation. Having a spinal cord injury is hard but everything is there (with TRAILS).”

Lee explained that getting any equipment to do anything with a spinal cord injury makes it hard to do recreational sports and is very expensive. But now that he has access to the equipment he is able to participate in activities he used to do before he became paralyzed.

Because of TRAILS Lee has been able to do recreational activities with not only other participants, but also with his family again. Lee is now teaching others with spinal cord injuries how to play wheelchair tennis,  and do sit skiing as well as other sports.

“I really enjoy it (TRAILS),” Lee said. “Having a wheelchair, you get isolated because you don’t want to be around people in wheelchairs so you end up alone, but with recreation you can integrate back into able bodied recreation.”

TRAILS coordinator Tanja Kari had her arm amputated at birth. She has always been an active athlete, and has been involved with sports for people with disabilities her whole life. She was also a gold medalist in cross country skiing in the 2003 Paralympics. However, she agrees that TRAILS has been a highlight.

“Being disabled is limiting,” Kari said. “Seeing people in the hospital then getting back into activities is incredible. It’s a privilege to be a part of.”

Kari and Jeffrey Rosenbluth M.D., assistant chief of the Department of Physical Medicine and Rehabilitation at University Hospital, started the program in 2006. Rosenbluth, who specializes in spinal cord injuries, had envisioned this program even before Kari came along. But with a professional in the medical field and an athlete who has been involved with sports for people with disabilities, TRAILS has become a success.

Kari explained that many people who sustain a spinal cord injury don’t usually want to be involved in sports, but when they join TRAILS their attitude changes and they end up loving this new way to participate in recreational sports.

Participants don’t have to be a patient at the University Hospital. It is open to anyone with a spinal injury.

People who are interested in volunteerting with TRAILS don’t have to be a nurse or a professional. Volunteers will be trained in how the equipment works and how they can help the participants with spinal injuries get back into activities that they were once involved in, or try a new sport they didn’t know about.

People with disabilities take issue with comments by the public

Story and photo by PAUL S. GRECO

“I’m crazy, but I’m not stupid,” he said, and happily busted out laughing, contagiously. When he spoke, his body wrenched with enthusiasm, causing his wheelchair to move slightly with him.

Jonathan Westling is 46 and has cerebral palsy. At birth, the umbilical cord got wrapped around his neck and damaged the cerebral cortex in his brain.

Jonathan Westling

Jonathan Westling enjoys boating and jet skiing and has been skydiving.

Westling was born in New Jersey. After doing some research, his father felt that Primary Children’s Medical Center could provide the best care. So Westling, at age 5, moved to Utah with his parents, four sisters and three brothers. He is the youngest.

“Looks can be deceiving. There’s more to me than just meets the eye,” Westling said. He feels that the general public doesn’t understand people like him because most people don’t know anyone with his kind of disability.

One time while grocery shopping, he related how the check-out clerk made a big deal of him being able to read her name tag. As Westlling and his friend were leaving the store they could hear her telling others, “He read my name.”

He’s intelligent, and he likes to do things as much as anyone else. However, his disability makes it more difficult.

“I like to do just about anything outdoors. I love to go boating and jet skiing. I really love to sit around an open camp fire,” he said. He’s also been skydiving.

People with disabilities are sometimes misunderstood by the public. Shelly Hendriksen is legally blind with 20/200 vision in each eye. What a person with 20/20 vision can see at 200 feet, Hendriksen can see at 20 feet.

Hendriksen was born in Anaheim, Calif., and graduated high school in Oregon. She, her husband and children live in Salt Lake City.

Like Westling, she also has experienced rude questions.

At one meeting she attended, she was seated with her guide-cane folded under her chair. A man approached her and asked if she was blind. “Yeah,” she said.

“How many fingers am I holding up?” he asked.

“Like, I have no idea,” she said. “Really, you can’t tell?” he asked.

“No, I really can’t tell how many fingers you’re holding up.”

What frustrates Hendriksen most is when people try to make her feel stupid because she’s visually impaired. “I like to be treated with respect. I have a bachelor’s degree. I’m not dumb. I worked hard to get that degree,” she said.

In fact, she has two degrees: an associate’s degree from Portland Community College and a bachelor’s degree in education from Utah State University.

Jeremy Chatelain said some people treat him poorly because they don’t know better. Other people just don’t care to know better.

Chatelain was born in Utah. He lives in North Ogden and is a seminary instructor for the Church of Jesus Christ of Latter-day Saints.

One frozen winter morning, Chatelain, who is quadriplegic, waited in the dark for the bus. But the driver passed him by. Fortunately, his wife was with him and quickly drove him to the next stop.

A man was waiting there and asked Chatelain, “What happened to you?”

“I broke my neck diving into a shallow river,” Chatelain said.

“Well that was stupid, wasn’t it?” the man said.

Over the years, changes have been made in the terminology used regarding people with disabilities. For example, injuries are “sustained” or “received,” not “suffered.” Also, people-first language emphasizes that an individual uses a  wheelchair, she or he is not “wheelchair-bound” or “confined to a wheelchair.”

Utah State University’s Center for Persons with Disabilities provides information on disability awareness:

  • “Always speak to the disabled individual directly and not through someone else.”
  • “When someone has a speech impairment, take your time and listen. Don’t try to always finish their sentence.”
  • “Offer to shake their hand, even if it appears as if they have limited use of their arms or have an artificial limb. Simply the gesture will help them feel accepted and create a warmer environment for communication.”
  • “For those who cannot shake hands, lightly touch the individual on the shoulder or arm to welcome their presence.”

“I don’t mean to sound redundant,” Westling said, “but the golden rule says ‘Treat others how you would want to be treated.’ I cannot stress enough how important I feel that is.”

Utah organizations for people with disabilities see need for financial improvement

Story and photos by DYLAN LIERD

Under the mandates of the Americans with Disabilities Act, the Utah State Legislature authorized more than $215 million to assist people with disabilities in Utah. However, organizations like the Division of Services for People with Disabilities and TURN Community Services Inc. still cannot provide assistance for all.   

According to the DSPD’s website, it is the main source of assistance for Utahns with disabilities. The DSPD serves more than 4,000 individuals, and helps fund some of the more than 50 for profit and nonprofit organizations that provide assistance for people with disabilities.

According to a source in DSPD’s financial department who asked not to be identified, more than 1,900 citizens are still on DSPD’s waiting list. He said that for those who currently receive services, the $215 million is not enough to finance the needs of all Utahns with disabilities.  

“We have half as many people on the waiting list that we are able to serve,” said the source in a phone interview. “The limit of financial assistance was not created from the sequester or the federal government. The legislature appropriated what they could, but there is not enough tax dollars to fill all of the need.”

Consequently, DSPD must determine whether a person is eligible for assistance by evaluating the severity of an applicant’s disability. According to DSPD’s website, individuals who have an IQ of 70 or lower lack daily living skills, which impairs their ability to grapple with the demands of daily life. For that reason, they will receive assistance, or will be prioritized on the waiting list.

The same is true for those who have physical disabilities or brain injuries. Funding for physical disabilities is based on functional loss of limbs, and if the loss is for a continuous period. For brain injuries, the severity of the physical trauma or non-traumatic injury is used to justify the individual’s need to receive services. Preferences are not given to any disability, but priorities are given to applicants who have the most needs.

People who receive financial support are more often long-term recipients. Applicants on the waiting list can only receive financial assistance when there is an increased amount of legislative allotment, or if a recipient dies or moves out of the state.

Eliza Detherage gathers information concerning people with disabilities and TURN.

Eliza Detherage gathers information concerning people with disabilities and TURN.

Eliza Detherage, director of operations for TURN Community Services, said too many people are being turned away from receiving funding due to a lack of revenue.  

“Around 3 percent of the population have a disability in the United States,” Detherage said. “If the population of Utah is around 2 million, then 60,000 people have a disability in Utah, but only a few meet the requirements.”

TURN Community Services employs more than 475 full- and part-time workers, and provides supervised living and 24-hour group homes for people with disabilities. According to TURN’s website, the nonprofit provides summer camps for kids and helps people with disabilities find job opportunities from a variety of employers. A contract with DSPD largely funds TURN Community Services, and for 2013, its budget is more than $14 million. The budget provides financing for supported employment, day programs, respite care, host homes and other services.

According to a document posted on TURN’s website about the contractual agreement with DSPD, it must be an approved Medicaid provider to allow DSPD to bill Medicaid for TURN’s services. Detherage said Medicaid is an essential service for people with disabilities and for TURN. Included with Medicaid, Supplemental Security Income and Social Security disability programs also help fund the costs of TURN’s programs. Detherage said less than 1 percent of TURN’s clients are on SSI or the disability programs. That means few receive additional funding.

“On a broad scale, when you look at people with disabilities, everything we receive is essential. Should there be more? Absolutely,” Detherage said. “I get about 10 calls a week from people that are absolutely desperate, but I know those people are not going to be eligible for services, and if they were eligible, they would just be sitting on the waiting list.”

Areas where TURN helps Utahns with disabilities.

Areas where TURN helps Utahns with disabilities.

Individuals on SSI receive $710 a month, an amount set by Utah law. Detherage said this is the only amount that many people with disabilities have. Therefore, because many people with disabilities cannot work, she said she believes the state legislature must appropriate more funding in order to shrink DSPD’s waiting list and allocate more to SSI beneficiaries.

Mike Bullson is a lawyer at Utah Legal Services. “The monthly benefit is limited, but the only way to receive greater amounts of funding is to allocate more money before being unable to work,” Bullson said in a phone interview. “This would help bring a lot of people out of poverty, but [it] is hard for disabled individuals to do.”

The source at DSPD said the amount of tax revenue the state receives does not allow the state legislature to allocate greater amounts of funding to Utahns with disabilities. Until legislators approve additional funding, organizations like DSPD and TURN Community Services must continue to work with their current funding. And that means many on DSPD’s waiting list will continue to remain there.

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