A leadership conference for youth with disabilities will take place at USU June 10-12. (Photo courtesy of OPTIONS for Independence)

Ropes course. Barbeque. Motivational speaker. Two nights in a dorm room. Sounds like a typical youth conference held on college campuses nationwide every summer—except every participant in the upcoming youth leadership conference at Utah State University has a disability.

Jeff Sheen, a policy analyst and project director at USU’s Center for Persons with Disabilities, is one of the organizers of the event, which will take place on campus June 10-12. Sheen is the chair of Utah’s Statewide Independent Living Council’s youth service committee.

The youth leadership conference, Sheen said, is an initiative to get youth involved as consumers and prepare them to be leaders in disability advocacy. Advocates who have worked for years on disability issues are getting ready to retire, he said, and not a lot of effort has been made to groom young adults to take over.

“The youth have always had services,” he said. “They haven’t had to fight for it,” leaving people wondering who will take their place and be passionate about advocating for people with disabilities.

Two or three youth and one or two adult chaperones from each of Utahs’s six Independent Living Centers, including Logan’s OPTIONS for Independence, will participate in the conference, Sheen said.

“We’re all geared up to give them a vision of leadership, so they can say ‘I’m a leader and this is how I’m going to improve my community,’” he said. The youth will leave the conference with leadership projects to discuss and implement.

“Hopefully this is the start of a statewide youth council,” Sheen said.

Tuesday’s events include sessions with motivational speaker Todd Christensen, who is on the board of directors at the Red Rock Center for Independent Living in St. George and has a daughter with developmental disabilities.

“Todd is a world-class leadership trainer, really dynamic,” Sheen said. “It will be a lot of fun, but meaningful and focused.”

The University Inn and Conference Center is facilitating the event, and is adapting the ropes course, Sheen said. Planning the conference has been a good way to introduce the concept of People-First language, and to allow staff members to see what is necessary to make activities accessible and inclusive, Sheen said.

Technical assistance doesn’t get as much attention as some of the programs of Utah State University’s Center for Persons with Disabilities, yet it is vital to the CPD’s role to improve the lives of people with disabilities.

Technical Assistance for Excellence in Special Education (TAESE) provides research and information on all areas of special education, assists with the development and formatting of technical assistance documents and create documents in a variety of formats from hard copy to electronic as needed.

TAESE works directly with state education agencies, school districts and schools, said John Copenhaver, TAESE director. “We work with 22 states and every state is a little different. We try to find a niche that no one else is fulfilling. We’re not trying to duplicate what other centers are doing.”

Staff members facilitate critical meetings between state agencies and stakeholders like special education advisory panels, Copenhaver said.

TAESE staff recently facilitated a series of high-profile meetings in South Dakota between the state superintendent of education, parent groups and advocacy groups. In neighboring North Dakota, TAESE facilitated meetings to draft guidelines for students with intellectual disabilities.

In Washington, D.C., the public school system has implemented a survey to rate the satisfaction of parents whose children have received special education services. TAESE staff has facilitated discussions of how the response rate of the survey can be increased by making it more parent-friendly.

By Mathew Bone

Kirstin Bone

Well we are half way through May, and so far it has been a stressful, hectic month. But having said that, there are also special things happening this month.  My daughter, Kirstin, just graduated from the University of Alabama with her master’s degree. Not bad considering when she was born, the doctors did not think she would live.

Kirstin has a rare genetic skin condition called Ichthyosis. May is National Ichthyosis Awareness Month.

My daughter is living proof that many disabilities, while serious, are often more affected by attitude than anything else.  When people have told her she cannot do something, she asks “why?”  Things she has been able to do include acting, fencing and teaching.

Here is a recent posting she put up on her blog.

When I was younger, I did not really like to participate in sports. Running often left me overheated, football was a series of painful scrapes, and horseback riding rubbed the insides of my thighs raw. I had always dreamed of fencing–even with my physical limitations. There was something in the perceived elegance of sword fighting that I could not resist. And, let’s be honest, being able to use a sword was just plain awesome. In junior high, I met a boy who was part of the local fencing club. He convinced me to drop past and see what a typical evening was like. I agreed to come past that Saturday, which just happened to be the day after the fifth Harry Potter book was released. So, I hauled myself, my best friend Kylie, and Harry Potter and the Order of the Phoenix to the fencing club that Saturday morning. I fell even more in love with the sport than ever.

Eventually, my parents agreed to let me give fencing a try. When I showed up for my first lesson, the coach–a brilliant woman named Julie–took one look at me and frowned. “Are you sure you want to do this?” she asked. I assured her that I would know if I was pushing myself too far and that I would be fine. I was lying through my teeth, of course, but I did not care. I had to give it a try. The first lesson was pretty basic: How to move like a fencer. Amy, one of the few women in the club, showed me the strange, squatting stance used throughout the fencing world. I sank down into it, and she was confused. Rather than standing flat on my feet, I was perched up on the balls of my feet–more like a ballet dancer than a fencer. She ordered me to be flat-footed, but it turned out to be a hopeless struggle. My skin has always made it difficult for me to even walk flat-footed, so I will often just walk up on my toes. This phenomenon is relatively common among people with EHK. Some even call it the velociraptor gait. My strange fencing stance earned a lot of comment from the other fencers, and I even earned the name “Jackrabbit” for the way I would bounce around on my toes. After the lesson, Julie fixed me with her eagle eye. “So, you want to come back?” she asked. Without hesitation, I told her I would be back the next week.

Fencing presented almost more challenges than I knew how to deal with. Heat became my number one enemy, since the thick Kevlar armor all but roasted me alive. I quickly developed a system of soaking the back of my jacket’s neck and carrying two bottles of Gatorade to each practice, which worked well enough. During the summer, I would even sneak an ice pack under my chest protector, just to keep me extra cool. If nothing else, I became very sneaky. Another challenge was the friction. When a fencer would hit me with the tip of their weapon, sometimes it would create enough friction that my skin would simply slough off. My skin does this instead of bruising, kind of as a deflective mechanism. More often than not, I wouldn’t even notice how many hits had peeled off my skin until the end of the night when I took my jacket off. Sometimes, after a particularly brutal bout, my arms would be a series of cuts–sometimes even my legs and chest falling victim to the same treatment. Competitions proved even more exciting, though, since the fencers I came against were not aware of my skin’s peculiarities. During a team match, one fencer hit my arm with particular vigor (by accident). I shook it off and the match resumed. For some reason, the other fencer was incredibly distracted, and I easily won the match. When I went to unhook my weapon, though, I looked down at my arm. The entire sleeve was soaked with blood. My coach and teammates rushed over to me, asking if I was alright or needed a doctor. Carefully, I stripped off my jacket and looked at the five inch gash running up my arm. “It’s fine,” I said. “Just a scratch.” Without looking back, I walked into the bathroom, washed off my arm and the jacket, and returned to the match. Every time I went up to fence that day, my opponents treated me like I was made of glass.

Ultimately, fencing was one of the best and worst decisions I made, growing up. When I finished my three-year fencing career, I was in peak physical condition and could fit into size 6 clothing. I had loved the challenge of it, but … after a time I had realized it was taking up too much of my life. Forty to sixty hours a week of fencing was preventing me from working on my schoolwork like I needed to, especially since I was entering my final year of high school and wanted to get into college. And, realistically, it was taking a toll on my health. The fencing equipment would need frequent cleaning, otherwise I would catch a staph infection or some other illness. If someone came to the club sick, I was the first person to catch whatever they had.

Taking on sports when you have a disability really is a fantastic challenge. If you ever look at a sport and say “I wish I could do that” I would suggest trying it. You never know what might happen or whose mind you might change.

Two students in the ASSERT preschool practice social language skills.

The ASSERT (Autism Support Services: Education, Research and Training) program at Utah State University’s Center for Persons with Disabilities will mark its 10^th anniversary in August with a reunion party for all former and current families and staff. The party starts at 5 p.m. on Friday, August 9 at an as-yet-to-be-determined park in Logan.

ASSERT program coordinator Lyndsay Nix has asked anyone who has ever been involved with ASSERT to spread the word to former families and employees. For more information as it becomes available, or to RSVP, call Nix at (435) 797-8278.

The primary goal of ASSERT is to build the capacity of Utah school districts to provide effective, research-based educational services to children with autism. In the last 10 years, about 50 families have received direct services in the ASSERT preschool classroom at the CPD. ASSERT has trained more than 100 special education professionals in 14 Utah school districts, and 18 graduate and more than 160 undergraduate students have learned to implement the same research-based interventions.

According to ASSERT Director Tom Higbee, children with autism who receive research-based intervention acquire the skills they need to become independently integrated into their neighborhood schools. The students served in ASSERT on-campus and school district programs have made significant educational and behavioral gains.

Marty and Kathi Blair enjoying winter in the Uinta Mountains.

Back in the day, most of the staff members at Utah State University’s Center for Persons with Disabilities dressed in costume to celebrate Halloween. People still talk about the year Miss Piggy appeared in all her pink, porcine glory and stumped everyone who tried to guess her true identity. In reality, she was a he … and he was none other than Marty Blair, a long-time CPD staffer. (Unfortunately, no photographic proof could be uncovered for this blog post).

Blair, associate director of Technical Assistance for Excellence in Special Education (TAESE), leaves the CPD this week after more than two decades to begin his next adventure as director of The Rural Institute, Montana’s University Center of Excellence in Developmental Disabilities (UCEDD). He begins his new duties on June 1, the day after his daughter graduates from Sky View High School.

Blair is passionate about disability issues from birth to death, across all disabilities.

“It’s about human issues and the ability to function in the community, independent and contributing,” he said.

Blair started working at the CPD as an undergraduate in the interdisciplinary training division. After graduation, he taught special education at Mount Logan Middle School and did consulting work with the CPD’s interdisciplinary training division and some special ed projects. As distance education was being introduced, Blair did safe and drug-free teacher training via the new system. He also worked in the state of Washington, traveling every other week.

“I really had a lot of fun,” he said. “I did that for a couple of years, helping deal with difficult behaviors.”

Around the end of 1995, Blair came back to Logan as an evaluator with the Utah Assistive Technology Project (UATP). He became the coordinator of the program, and eventually the director. He wrote the first six grants in the country for assistive technology.

In 2000, the Association of University Centers on Disability (AUCD) had six employees, and was just initiating its disability leadership fellowship program, Blair said. He had always been interested in federal policy issues, so he applied and was chosen as the very first fellow.

“I spent a year in Washington, DC, working on government affairs and technical assistance,” he said. “I got to do some really interesting things.”

After his time in Washington, Blair became the CPD’s assistant director of policy and development and finished his Ph.D. in Disability Disciplines. He became a liason between the CPD and the state of Utah on advocacy issues and developmental disabilities, worked with the legislature to secure federal funding and served on Sen. Orrin Hatch’s advisory committee on developmental disabilities.

“We got AT amendments passed without losing funding every year,” he said. “Cyndi Rowland, Sarah Rule and I were able to get two earmarks, back in the days when there were still earmarks. It was one of our greatest accomplishments.”

About five years ago, Blair became associate director of TAESE and wrote the proposal for the next five years, expanding the grant and contract. During his tenure, TAESE has established statewide programs in results-focused technology in Kansas and New Mexico, and quadrupled the number of people who attended TAESE-sponsored conferences and events. He is, however, humble about these accomplishments, saying, “It’s been a great team effort. I can’t take full credit for it.”

Because of his upcoming move to Montana, he recently resigned as co-chair of the Hatch committee.

“I’ll miss terribly the connections,” he said. “To visit with those in the middle of decision-making, the exchange of ideas and new ways of doing things. It was a wonderful opportunity.”

Blair said he would also miss the people who make the CPD what it is.

“The CPD is a gem in many ways,” he said. “We don’t realize what we have here. I didn’t realize it until I went to DC. I didn’t realize I came from a place that was so honored and respected around the country. The reputation was built and maintained by the quality of research and teaching, both within the community and nationally. I’ll miss the day-to-day contact with the people who made that happen.”

Fortunately, he said, communication methods these days make it less challenging to keep in touch.

“I have had a great experience at the CPD. I grew up professionally here,” he said. “I’ll always be connected here, even when I’m gone.”

Marty can be reached after June 1 by e-mail at martin.blair@mso.umt.edu or by phone at  (406) 243-4779.