Page 1

Focusing on PEOPLE – not their disABILITIES

Apostrophe SUMMER 2014

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Tim’s Place

Restaurateur’s business model includes hugs — 44

The Missing Therapy Sierra Lode faced depression; now she’s helping others do the same — 26


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  Presume competence — 11    People First of Louisiana — 14    Book: History of Willowbrook — 32    Backyard burgers — 48    Yoga connections — 52

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Inside Backyard Burgers

Prep and cook times 30 min

Summer 2014

· Makes 4

57 EXCLAMATION POINTS 48 IN THE Artist Candy Waters’ Ingredients • 1lbKITCHEN • 4 slices of onion ground beef ‘bright happy world’

Fashion TIP!

World’s best • Salt and pepper • 4 backyard slices of cheese burgers

• 4 hamburger buns • 4 slices of tomato • 4 lettuce leaves

Belle, or Beau, of the B

What about your social life? T will be plenty of time to hang ou friends in your comfy clothes, b there’s also going to be special e that call for a little oomph and p such as formal dances, banquet elegant weddings. Think tuxedo evening gowns and shoes that r like mirrors.

• Olive oil

You will need Gas grill, grill pan or charcoal grill (firing the coals will take an extra 30-45 minutes), metal spatula, sharp cutting knife and cutting board.

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Make the perfect backyard burger! 1. For extra juicy

burgers, choose ground beef that is at least 18 percent fat.

2. Divide meat into four equal portions and gently form patties.

Downward Dog

Warrior 1

52 Health & Wellness

Start on your hands Begin inand the downward 3. Sprinkle salt and knees with hands pepperfacing on bothdog sidesposition. puttingyour the left foot and feet a shoulders before Move on the grill. width apart.Connect Curl your burgers forward and place it your toes under and place between your hands. mind, body the balls of your feet 4. Set your Turngas your grillright heel in to the floor.and Press your toes to high(with or heat the to the right). soul until your it is feet into hands to the floor with charcoal Press glowingthe bright orange your fingers facing floor, and lift your with ash. forward. Lift your hips torso. Ensure the arch to the ceiling to form of your right foot is in an up-side-down "V." line with the left heal. Press your chest to your Gently square your knees, focus your eyes hips by pressing your on your toes and push right hip back and your your heels to the floor. left hip forward. Lift Hold for two-three your arms over your breaths. head, and press your palms together. Raise Tips: Your upper and your head and gaze lower body should be at your hands. Stay in equally supported. this position for five Push the floor away Letters to the Editor breaths. Return to the with your upper body, downward facing dog and press your heels to position. Repeat on the the floor. side. Training other for independent life Benefits: The Tips: Modify Warrior More support needed downward facing dog 1 by reducing the lengthens your spine, A matterdistance of perception between the back of your legs the heels to decrease and your feet. It also intensity. strengthens your Guest columnist shoulders and wrists. Benefits: Warrior 1 The downward facingDonnahelps lengthen and Spears dog is a rest position strengthen muscles in in between yoga poses the legs, hips, back, and shoulders. This pose and is considered a Center for Criminal Justice calming stretch. helps build patience.

6. Brush the burgers

Photos by Nate Peterson (fashion photos) Russ Kinkade, Angela Houk (behind

with oil and grill until golden brown and slightly charred. Cook three minutes.

Wardrobe by Burlington Menswear

63 WORTH 7. Flip the burgers cook until golden and WATCHING brown and slightly

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8. Add cheese at about 3 minutes, cover the burgers with tin foil or a lid to melt the cheese.

9. Place burger

between two buns and serve immediately with preferred toppings.

Go casual, formal or business

Contents/Departments 5 6


Letter from the Editor

60 Assistive Tools

24 Home & Garden

62 Jigsaw Cartoon

32 Book Marks

63 Worth Watching


Think About It!

14 People First

Barrier-free health care Imagine! SmartHomes

A History and Sociology of the Willowbrook School Making Self-Employment Work for People with Disabilities Just Like Other Daughters

16 The Arc

54 Exclamation Points!

and Disability opens

20 Financial planning Providing for your grandchildren


22 ADA

Kyle Miller, volunteer firefighter Voices of the Village music ensemble Artist Candy Waters

58 Access

Adaptable tools for summer fun

Products that promote independence Fay and Friends

Laser Beak Man 46 / 47

65 Mercantile

Goods made by some of our favorite entrepreneurs


Photo by Amanda Horton

Letter from the Editor

Turning can’t do’s into can do’s A few weeks back, Apostrophe staff sat down for a “Round-table Conversation” with the Dr. Samir Husni, better known as Mr. Magazine. Dr. Husni is the founder and director of the Magazine Innovation Center at the University of Mississippi’s Meek School of Journalism and New Media. As Mr. Magazine (the name is trademarked), he does media consulting and research for the magazine media and publishing industry. No one knows the business better. We first came to know Dr. Husni in 2007 before there was an Apostrophe magazine. We sent him an email asking what he thought of the concept of a periodical for, by and about people with developmental disabilities. We kept the email he sent back: “There are a few magazines and newsletters that can be classified

Magazine – Apostrophe promotes inclusion of people with intellectual and developmental disabilities, showcasing that they too can become a productive and important part of our society.”

as clinical. None on the consumer side. There are magazines for ADD children, diabetic children, (children with) asthma, but none like you are talking about.” That short message gave us the courage to launch Apostrophe. A few months later, after writing a business plan that was long on hope and faith, the first issue went to press.

This issue of the magazine features two people who embody that notion.

It was only fitting on our sixth anniversary (issue No. 24) that we would reconnect with Mr. Magazine, who grasps the purpose of Apostrophe and expresses it with eloquence. Here’s what he wrote in his weekly blog: “Usually, leaving off an apostrophe can make a big difference in something, whether it’s grammatical or an attachment in people’s lives, especially people with developmental disabilities. When the apostrophes are eliminated, people realize “can’t do’s” become “can do’s.” “And that is the mission of Apostrophe


On page 44 and following, you’ll read about restaurateur Tim Harris of Albuquerque, N.M., whose business model includes hugs for customers. Younger brother Tommy tells us about growing up together and wonders today why he ever doubted Tim would succeed. Beginning on page 26, Sierra Lode describes her triumphs but also discusses a secret she kept to herself for many years. Sierra, who is quadriplegic and has severe cerebral palsy (she also has a college degree), is learning to deal with depression and is helping other people with disabilities do the same. — Jim Tracy

Published by AWARE Inc.

Volume 6, Number 4 Publisher

Larry Noonan AWARE Inc. Editor

Jim Tracy Circulation Manager & Graphic Designer

Jacquie Peterson Advertising Manager

Eric Elander

Business Associate

Bryon Higgins

Advisory Board Stephen Addington Barbara Andreozzi Russell Carstens Chris Clasby Dr. Krista David Dr. Bill Docktor Jeff Folsom Dr. David Gumm John Haffey Marlene Holayter Jesse Laslovich Graydon Moll Larry Noonan Alison Paul Richard Saravalli Mike Schulte Dr. Henrietta Shirk Al Smith Alexandra Volkerts Geri Wyant Cheryl Zobenica

Contributing Writers Chris Clasby Leigh Ann Davis Susan Griffis Kevin Harding Tommy Harris Blake Hempstead Judd Krasher Tess Langston Jonathan Martinis David Morstad Cindy Powell Tony Sampson Dr. Henrietta Shirk Donna Spears Tracy Terrill

Contributing Photographers Blake Hempstead Angela Houk Russ Kinkade Nate Peterson Kenton Rowe Luke Sanchez

Contact us:

P.O. Box 638 205 E. Park Ave. Anaconda, MT 59711-0638 406.563.8117


$19.99 a year — four issues Copyright © 2014 Apostrophe

All rights reserved.

Reproduction in whole or in part without express written permission is prohibited.

Got a story idea?

Apostrophe welcomes articles for, by and about people with developmental disabilities. Send story ideas via e-mail to Or call us at 406.563.8117 and ask for Apostrophe staff.

Read Apostrophe online:

Apostrophe Summer 2014



‘Gabe has enhanced our lives’ Thank you for featuring my son Gabriel and his business, Gabe’s Glass Creations, in the Spring 2014 issue of Apostrophe magazine. Gabe is very proud of the article and shares it with everyone. He has received a lot of positive feedback on his story. I thoroughly enjoyed reading all the articles and am thankful that a magazine like Apostrophe is working diligently to let everyone know the positive aspects of the lives of our loved ones. I wholeheartedly agree that Gabe and his peers deserve to be celebrated for their achievements. I did, however, notice an omission in Gabe’s story. Gabe is able to live an inclusive, fulfilling life in the community because he has a strong support system. Gabe’s immediate family (Dad – Dennis, Sister – Andrea, and Mom – Loretta) work alongside Gabe so that he can create and sell his glasswork. Gabe designs the pieces but needs help with the sales, financials, paperwork and transportation. Gabe is also fortunate that his grandparents, aunts, uncles, cousins and friends purchase his glasswork and encourage his creativity and independence. I can only assume that the same underlying support networks are in place for all the success stories described in your magazine. Gabe has enhanced our lives in more ways than I can mention. We wouldn’t change a thing. I just want to make sure your readers know that it is a team effort when you start a business. The possibilities are endless, but it requires a longtime commitment by everyone involved. Loretta Silva Santa Fe, New Mexico

Reader likes families’ stories The first time I read the magazine I was in Billings, Mont., at an Arc Montana conference. I was also fortunate enough to meet some of the amazing staff that makes this possible. In my opinion, the magazine is extremely informative, and being a mother of a special needs adult, I find it tough sometimes to find information. I am always researching for things that will improve Mikayla’s quality of life, and throughout the magazine, I was able to find many useful resources. Reading other families stories was my favorite. To learn about other families out there that have experienced some of the same challenges that I have is actually the most useful resource. Knowing that I am not alone 6

I just wanted to make sure your readers know it is a team effort when you start a business.... it requires a commitment by everyone involved.

is extremely comforting. Having my story recently written, I am hoping that I have helped at least one family out there. I highly recommend Apostrophe magazine to anyone and every family with or without a family member with special needs. I look forward to being more involved with this amazing family at the Apostrophe Magazine. Sabrina Wisher Kalispell, Montana

Celebrating progress and success The spring 2014 issue of Apostrophe was informative and entertaining. As I read the different stories celebrating the progress and success of people with disabilities, I was excited to learn how much progress is taking place around the country for people

Letters To The Editor Letters to the editor should include the writer’s full name, address, daytime telephone number for verification and e-mail (if available). We do not accept anonymous letters. Letters should be short (fewer than 300 words). All letters may be edited for length, clarity, grammar and accuracy. In Box is a forum for promoting open discussion of topics of interest to our readers. To be accepted for publication, letters must relate to an article published in Apostrophe or relate to events and issues surrounding disabilities. We will not publish a letter if it is deemed potentially libelous; if it maligns a person or group; if it addresses topics beyond the scope of Apostrophe’s coverage; or if it is written to promote a product or service. We may limit the number of letters on one subject for space reasons. Priority for publication will be given to timely letters that directly relate to the content of Apostrophe. Letters can be submitted via e-mail to: or by mail to: Apostrophe P.O. Box 638 Anaconda, MT 59711-0638

with disabilities. In our work at Quality Trust for Individuals with Disabilities, an independent advocacy organization in the nation’s capital, my colleagues and I advocate each day with people to live quality and fulfilling lives and fight with them for their rights and access to opportunity and independence. I enjoyed the article by Ruth Morris, a self-advocate with People First of Oregon. Self-advocacy plays a critical role in the lives of people with disabilities to speak up for themselves and others who may not be able to do so or not as effectively. Project ACTION! is the District’s self-advocacy coalition that recently celebrated their 25th

anniversary. The group has supported the development of many advocacy leaders. Apostrophe is a fantastic resource for people with disabilities, family members and friends who want to stay current and abreast about what is happening in the world with and for people with disabilities. Phyllis Holton, Associate Director Quality Trust for Individuals with Disabilities and Project ACTION! Washington, D.C.

Apostrophe Summer 2014


Think About it

Training for independent life Independence is something that we all aspire to attain in one way or another. Most teenagers look forward to the independence that a driver’s license can afford or the independence of getting away from mom and dad and heading off to college. Many people strive for the independence that comes from owning their own business and being their own boss. As Americans, we have the privilege of living in a nation that treasures its independence. by TRACY TERRILL

Independence, the ability to function or operate without the assistance of someone or something else, is a multifaceted concept. It is not something that should be pursued or taken on haphazardly. In Appropriate Independence: Potential Realized, Psychologist Dr. Russ Kinkade writes, “Independence, like many other concepts, must be balanced with other values and limitations in order for it to be a profitable ideal.” 8

He points out that a proper understanding of authority, personal responsibility, and humility are all needed to balance the concept of independence. A life of independence that is not balanced by these other core values can easily become a reckless, selfabsorbed existence. Many individuals with disability have a strong desire to experience a higher level of independence.

Their focus may involve personal care, ambulation, employment, their residential setting or any other aspect of life. The desire to live a self-directed life is an admirable one. Yet the pursuit of independence is something that requires great intentionality and in most cases a significant level of support and guidance – assistance that diminishes as skills and abilities are attained. Training for Independent Life is a new editorial series that will appear in each issue of Apostrophe. This series of articles will be written by various faculty and staff members of Shepherds

College in Union Grove, Wis., one of the nation’s premier postsecondary schools for individuals with intellectual/developmental disabilities. Shepherds College offers a holistic training program that has been developed around the guiding philosophy of Appropriate Independence™, which is predicated on the idea that independence is different for each individual. Many factors contribute to an individual’s Appropriate Independence – strengths, talents, abilities, as well as the degree of one’s limitations and/or disability. Shepherds College offers a holistic training program designed to impact students’ lives through relevant and experiential instruction that touches every facet of a student’s life in an attempt to prepare students for the lifelong pursuit of Appropriate Independence.™ The entire experience has been designed with the intent purpose of practical skill development in an effort to help students become trained for life and empowered to serve, the action steps to our philosophy of Appropriate Independence.™ With great success the faculty and staff of Shepherds College have implemented REAL instruction to facilitate training both in and out of the classroom. REAL instruction has been adapted from Thom and Joani Schultz’s

Sam and Sean experience relational learning in the college classroom. Shepherds College photo §

book The Dirt on Learning and it impacts every facet of our training program. Here are the components of REAL:

R – Relational: involves

setting aside time for learners to talk and work together, building relationships from authentic learning with fellow students and instructors. The relational component of REAL instruction emphasizes the importance of community and the value of shared experiences.

E – Experiential: fully

involves the learner and does not accommodate a passive observer. Interest in activities and ideas is ignited when students learn by using any or all of their senses (taste, touch, smell, hearing, seeing). Experiential instruction allows the students to make discoveries for themselves, and then share them with other students, resulting in relational learning.

Please join us as we share relevant and practical approaches validity and purpose to the in Training for Independent learning. When information is Life. Upcoming articles will applicable to the learner’s life, include topics such as: conflict he/she is motivated to learn the resolution, self-advocacy, information. All subject matter healthy relationships, transition, should serve a practical purpose community engagement, and/or promote an individual’s postsecondary education, daily growth, development and ultimate pursuit of independence. living skills and success in the workplace. Training must be applicable to life in order to truly be We look forward to meaningful. accompanying you in your Training for Independent Life. L– Learner-based: based on student’s interests, learning styles and attention span. It is not Tracy Terrill is the executive driven by a set curriculum or an director for Shepherds instructor’s preferences, but by College in Union Grove, the learner’s specific interests and Wis. For more information needs. Learner-based instruction about Shepherds College, results in increased motivation, an accredited, faith-based learning and achievement. REAL post-secondary school for instruction and the guiding young adults with intellectual philosophy of Appropriate disabilities, visit www. Independence™ are two cornerstones of the Shepherds College experience.

A – Applicable: provides

Apostrophe Summer 2014


Think About It

People who live independently need more support by TONY SAMPSON

I had the roughest winter since 1996 after my father died. His name was Napoleon Sampson. He called himself Nick when he came to Washington in 1963. He named me Nick Anthony Sampson, because he liked it, but you and my friends and family refer to me as Tony. During the winter of ’96, I was working at Ames Department Store in Waldorf, Md., and working at Spring Dell in the workshop during the day and on the work crew at night. I was making $5.15 at Ames; and working seven hours a day for a week. My Social Security was $190 a month. I had to use my day’s insurance money to pay rent. It was gone within two years. I struggled, which brings me to this topic: people who live in disability agencies want or expect to learn skills in the real world, but they do not — not even the most high-functioning people, not even those who have a full high school me! People who are in agencies are not there to succeed in the real world. They are treated like people with disabilities. How? By holding them back, by putting them in workshops and enclaves, and more important, in menial jobs. I’m talking about menial work like washing dishes in a restaurant or cleaning hotels. Moving on. There are independent self-directed programs run by federal and state governments. These programs don’t have 10

The one problem they face is how much money they can make on their job, which affects their eligibility for Social Security.

agencies or workshops or enclaves or work crews with sub-minimum wages! These programs allow people with disabilities to live the lifestyle they choose, to hire and even fire the staff and to pay for services with their funds and funds from the agency budget. Staff can help them manage to pay their bills like cable, utilities and even the rent (it will always come first!). They can be responsible and enjoy life. They can also help them on the job and help them look for jobs, and when they get a job (or a new one), they can train the person. And when that person gets good or better, they should fade away and see how well he or she does on their own. The one problem they face is how much money they make on their job, which affects their eligibility for benefits, like Social Security and Medicare. They make too much for that, and what is worse, people with disabilities don’t make enough for the American dream: renting a house, buying a car or raising a family. You’re too old for an allowance, too young for a credit card. For people with disabilities, life is different

” Tony Sampson

than for so-called normal people. Let me elaborate. “Normal” people have families and homes to go to, but people with disabilities have parents and counselors and group homes to go to. There is help, such as subsidized housing for lowincome people. I learned in one of my workshops about the Ticket to Work. It is for people 18 to 64 who have SSI or SSDI. It is free and voluntary. You can select time to go to work or work from home as an alternative to reach your goal or financial independence. Anyway, Old Man Winter is catching his flight to South America. Enjoy this season ahead. Self-advocate Tony Sampson is a graduate of Leaders in Disability Policy and a former member of the Maryland Disabilities Council. He has delivered many training sessions on inequality in the treatment of people with disabilities. He has worked at Home Depot for five years.

A matter of perception by DAVID MORSTAD

Do you ever look at someone and make assumptions about the kind of person they are? Of course you do. We all do. Chances are your assumptions are inaccurate; but then, so are the assumptions of others about you.

Here’s an exercise. Next time you are in an airport, take a short break from people-watching (one of my favorite activities), and briefly consider the reality that you are one of the people being watched. How well do the watchers know you? How accurate are their assumptions? How much do they know about the David Morstad extent of your love for family, the depth of your pain over the loss It turns out, people with intellectual of someone dear to you, or simply disabilities may or may not see the diversity of your interests? themselves as having a disability. In Obviously, not much. What they fact, it is far more likely that they think about you and what you know identify with people much younger about yourself are miles apart. than themselves — in other words, as children.

How people see themselves

As professionals in the disability field, this is a subtle but critically important consideration. Why? Because how we see people with intellectual and developmental disabilities and how they as unique individuals view themselves are probably also miles apart. In fact, people with developmental disabilities may not even see themselves as having a disability at all. In the last several years, there has been some research around the question of how adults with intellectual disabilities self-identify. If one’s professional interest is in things like advocacy or, more important, building self-advocacy skills, insight into this selfperception is vital.

A recent studyi (Weller 2014) looked at how adults with intellectual disabilities perceived themselves. Only 73 percent of the participants self-identified as more closely resembling adults, whereas the remaining 27 percent self-identified as more closely resembling children. Who could be surprised at this? Treating adults with disabilities as though they were children is a sadly ubiquitous practice in American culture and beyond. Self-perception of a disability, though, is a different matter altogether.

Building self-identity It turns out that the self-perception of people with disabilities is, to some extent, situational. On a field of competition, they identify as athletes; at work, they are fellow

Think About It

Treating adults with disabilities as though they were children is a sadly ubiquitous practice in American culture and beyond.

employees; in relationships, they see themselves as friends and lovers. In other words, they do not build an identity based on what they cannot do but on what they can do. Sound familiar? Probably, since that is precisely the way everyone else in the world defines themselves. Guided by this, professionals are better positioned to form mutual relationships, ask more questions, and listen more deeply to the answers. As writer Kathie Snowii has encouraged, we need to “presume competence.” In so doing, we come alongside people to discover a richer and more complex relationship; and perhaps along the way discover a little more about ourselves. iWeller, M.R. Self-Perception of Adults with

Intellectual and Developmental Disabilities. (2014) Advances in Applied Sociology 2014. iiSnow, K. Presume Competence. (2007)

Disability is Natural. Found at http://www.

David Morstad is executive director of The Bethesda Institute in Watertown, Wisc. Apostrophe Summer 2014 11

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People First

Think person before disability

“ To be an advocate is

totally about being part of society.

advocate for themselves. If they are not able to advocate for themselves, People First members advocate for that person.

Donna Spears

Donna Spears joined People First in Louisiana because she believes in its mission and vision statement. She believes people should come before their disabilities. by DONNA ANN SPEARS

I was an officer and a board member of People First from 2005 to 2007, but now I’m just a member. I would say there are about 25 to 30 members in our chapter. I get to meet other people with the same issues as mine. We come up with solutions, then we take those to the People First of Louisiana Board of Directors to see what advocacy actions we need to take. Sharon Hennessey is the adviser for the chapters. The value of People First to people with disabilities is extremely high. People First teaches members how to 14 14

To be an advocate is totally about being part of society. Educating legislators about issues we have in our communities. The “R” word is an ongoing campaign for People First of Louisiana. During the month of March, we set up information booths in the community. People First is also working on the ABLE Act, which means Achieving a Better Life Experience. Most of the People First chapters collect dues at monthly meetings. People First of Louisiana — at the state and local levels — is organizing a fundraiser for 2014. Here’s a little about myself. I was born Jan. 13, 1966, in Lake Charles, La., to Larry Lee Spears and Lorise Marie Deshotel Spears. I have two brothers and one sister. My brothers are Timothy Lee Spears and Johnathan Wayne Spears. My sister is Brooke Renae Spears Bergeaux. They all live in Louisiana. Timothy and his family live in Gotts Cove. Johnathan and his family live in Jennings. Brooke and her family live in Evangeline. I see Johnathan and Brooke every day.

I went to Hamilton Elementary, S. J. Welsh Junior High School, Northside Junior High School, then to Jennings High School. I attended college at Louisiana State University at Eunice and also McNeese State University. I did not graduate from high school but received my GED in 1992. I was employed by People First of Louisiana as a program mentor and then as an advocacy facilitator. I helped local chapters in the area. I attended stakeholder meetings, board meetings, conferences, etc. I really did enjoy my job, but due to lack of funding, I am currently unemployed. I first joined People First of Louisiana in 1999. I also belong to many other organizations in my home town and throughout the state. I live in my deceased parents’ home, and I pay the mortgage. I like talking to friends on the phone and in person. Meeting new people is interesting to me. I enjoy learning about different cultures. My favorite movie is Titanic. My favorite television show is NCIS. My all-time favorite is Mexican food. My friends say my best quality is the ability to listen and support others without judgment.


Are You A Self Advocate Entrepreneur? The Arc is looking for entrepreneurs with intellectual and developmental disabilities to promote their microbusiness enterprises at the 2014 National Convention in New Orleans this fall. Join us on site to be part of Entrepreneur Alley and showcase your business in person. Or, work with us to sell your merchandise for you...We offer highly reduced rates for people with I/DD!

Contact Sarah Kennedy for more details at or 202-534-3720 today! The Arc’s National Convention * September 30 – October 2, 2014 * New Orleans, LA Registration opens in May! Apostrophe Summer 2014 15

The Arc

The Arc launches Center for Criminal Justice and Disability Robert Ethan Saylor in Frederick, Md., who died earlier this year after three off-duty deputies attempted to remove him from a movie theater over a misunderstanding over a ticket.

Leigh Ann Davis by Leigh Ann Davis, M.S.S.W., M.P.A. Program Manager, Justice Initiatives

The Arc, the nation’s leading organization for people with intellectual and developmental disabilities (I/DD) has been awarded a twoyear grant for $400,000 by the U.S. Department of Justice, Bureau of Justice Assistance to develop a National Center on Criminal Justice and Disability, specifically focused on I/DD. This is the first national effort of its kind to bring together both victim and offender issues involving people with I/DD under one roof. According to the National Crime Victim Survey of 2010, the victimization rate is twice as high for individuals with disabilities as compared to those without disabilities. And we don’t have to look far for examples where law enforcement and people with I/DD could have benefited from this kind of work, including the tragic death of 16

The goal of this ambitious project is to create a national clearinghouse for research, information, evaluation, training and technical assistance for justice and disability professionals and other advocates that will build their capacity to better identify and meet the needs of people with I/DD, whose disability often goes unrecognized, and who are overrepresented in the nation’s criminal justice system — both as victims and offenders. “When individuals with I/DD become involved in the criminal justice system as suspects or victims, they often face miscommunication, fear, confusion and prejudice. This new center will play a critical role in improving first response and communication between people with I/DD and the justice system. No similar center

on this topic exists, nor are there sufficient resources to address the gap in expertise in the field, and so this effort is long overdue,” said Peter Berns, CEO of The Arc. The Arc is working closely with several other national partners within the criminal justice, legal and victim advocacy communities to research, analyze and replicate evidence-based solutions to the problems of injustice and victimization that have gone on for far too long within the I/DD community. For example, people with I/DD are often unable to report crimes or are not seen as credible witnesses. They are also vulnerable to becoming perpetrators of crime, including sex offenses, and used by other criminals to assist in law-breaking activities. And with many forms of mild I/DD not being easily identifiable, justice personnel may not recognize that someone has a disability or know how to work effectively with the individual. Although organized training is

People with I/DD are often unable to report crimes or are not seen as credible witnesses. They are vulnerable to becoming perpetrators of crime, including sex offenses and used by other criminals to assist in lawbreaking activities.

available for criminal justice professionals on mental illness, few resources on I/DD exist. Many law enforcement and other justice professionals do not know the difference between mental illness and I/DD and often think they are synonymous.

Talk to Your Doctor!

“When our chapters work with their local law enforcement agencies, they hear time and time again that training is provided for mental health issues, yet that doesn’t encompass millions of people with I/DD living in our communities. Through this grant, The Arc’s center will become a national focal point for the collection and dissemination of resources and serve as a bridge between the justice and disability communities,” said Berns. The center will consist of an online resource library, which will continually be updated as well as news and information about criminal justice issues as it relates to people with I/DD. In addition, the center offers monthly online educational sessions and is in the process of developing curriculum and trainings for law enforcement professionals. Find out more about the center’s activities at


Fetal Alcohol Spectrum Disorder (FASD) is the only 100% preventable intellectual and developmental disability. Yet, still many women think it is ok to drink during pregnancy. There is no safe amount. You can help prevent FASD and the lifelong, incurable problems it brings by spreading the word during Alcohol Awareness Month this April. Find out more about FASD at

1600 S. 3rd St. West | Missoula (406) 541-3663 | 7am to 10pm Every Day Apostrophe Summer 2014 17


Barb Balko-Rolf

with daughter, Katie Rolf

Join us for

The Arc’s National Convention September 30-October 2, 2014 New Orleans, LA Registration opens this spring. Details at

Moms are the best!

Apostrophe magazine has come to know a group of people who continually amaze us by their relentless dedication to their children, whether young or old.

Read their stories!

We call them Warrior Moms.

And we are proud to share their stories! (like Barb Rolf and her daughter Katie)

Sign up to read their inspiring's free! „

Sign up online at

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MetLife Center for Special Needs Planning SM

At MetLife, our focus on special needs planning is evolving with the families we serve. We recognize that caregivers and their dependents are of all ages and relationships. And while caregivers are aging, dependents are living longer as well. That’s why the MetLife Center for Special Needs Planning is eminently qualified to help you continue to financially protect your loved one—even when you may no longer be there for them. Let us show you how. Call MetLife at 877-638-3375 or visit us at

©2013 Metropolitan Life Insurance Company, New York, NY 10166. L1212295055[exp1214][All States][DC,PR] © 2013 PNT 1304-1072

Apostrophe Summer 2014 19


Financial Planning

Tips for planning for your grandchildren with special needs Grandparents want the best for their grandchildren and often give gifts while alive, or make provisions for their loved ones for after they are deceased. Grandparents who are in a position to leave money or assets often want to do something for their grandchild(ren) who has special needs. They often worry that their loved one may need additional assets or assistance to lead a quality life. Grandparents are sometimes told not to leave their grandchild(ren) with special needs anything because the grandchild(ren) may lose government benefits. People are often confused as to what to do or not to do. Grandparents can leave money to their grandchild(ren) with special needs. There are very

special ways to do it! Money has to be left in such a way so that government benefits are not lost. In most states, assets in excess of $2,000 will cause the loss of certain government benefits for a person with a disability. Money should not be left to the grandchild directly, but should be left to a special needs trust. The special needs trust was developed to manage resources


while maintaining the individual's eligibility for government benefits. The trust is maintained by a trustee on behalf of the person with special needs. The trustee has discretion to manage the money in the trust and decides how the money is used. The money must be used for supplemental purposes only. It should only supplement, or add to benefits (food, shelter or clothing) that the government already provides through Supplementary Security Income (SSI). It must not supplant or replace government

benefits. If properly structured by a knowledgeable special needs attorney, the special needs trust assets will not count towards the $2,000 SSI limits for an individual.

On the next page, find a brief summary of some Dos and Don’ts when planning for your loved one with special needs „

Dos: Consult with trained financial, legal and tax professionals with expertise in „ special needs estate planning.

Make provisions for your grandchild(ren) with special needs. Leave money „ to their special needs trust. When properly drafted, a special needs trust for your grandchild will not result in the loss of government benefits.

Coordinate all planning with your grandchild(ren)’s caregivers and other „ relatives. Notify the caregivers when you plan for grandchild(ren). Plan with others.

Leave life insurance and annuity death benefits to the individual’s „

special needs trust. The special needs trust can be named as the policy beneficiary. When the insured or annuitant dies, the death benefit is paid to the special needs trust. The special needs trust then has a lump sum of money to be used in caring for the grandchild(ren).

Don’ts: Don’t disinherit your grandchild(ren) who have a disability. Money can „

be left to a properly drawn special needs trust. It does not make sense to disinherit these grandchild(ren).

Don’t give money to your grandchild(ren) with a disability under UGMA „

or UTMA (Uniform Gift or Transfer To Minors Act). Money automatically belongs to the child(ren) upon reaching legal age. Government benefits can be lost!

Don’t leave money to a grandchild with special needs through a will. „

Money left will be a countable asset of the individual - and may cause the loss of government benefits.

Don’t leave money to a poorly set up trust. Money left in an improperly „ drafted trust can result in the loss of government benefits.

Don’t leave money to relatives to “keep or hold” for the individual with „

special needs. The money can be attached to a lawsuit, divorce, liability claim or other judgment against the relative. Due to the complexity of federal and state laws, you should confer with qualified legal and tax advisors and specially trained financial service professionals to help you plan for the future of persons your grandchild(ren) with special needs. MetLife Center for Special Needs PlanningSM. For more information about this and other related topics, visit our organization’s web site at or call 1-877-638-3375. Metropolitan Life Insurance Company, 200 Park Avenue, New York, NY 10166 L1112292122 [exp0214][All States][DC,PR]

Apostrophe Summer 2014 21


Barrier-Free Health Care by CINDY POWELL

People with disabilities are less likely to receive routine preventative health care than people without disabilities. The Americans with Disabilities Act (ADA) requires health care providers to give accessible services to patients who disclose disabilities. „ Health care professionals would benefit from training in serving individuals with disabilities throughout all public areas in a health care facility such as the cafeteria, emergency rooms, gift shop, inpatient facilities requiring overnight stay, longterm care/rehabilitation facilities, outpatient facilities with no overnight stay, pharmacies and surgical units. „ A patient with a disability cannot be denied service because it might take longer to examine them. Some examinations are simply lengthier than others. All patients, those with or without disabilities, must be provided with thorough medical examinations regardless of how much insurance reimbursement the health care provider will receive. „ A patient with a disability should not wait longer than a patient without a disability. A prudent scheduler should ask every patient requesting an appointment if they require assistance. The health care provider can then reserve a room with an accessible examination table whenever a patient discloses a mobility disability.


„ Accessibility requests should be documented in every patient’s chart, so health care providers are prepared to accommodate and assist all patients as required during every visit. It is also imperative that health care personnel receive training to safely transfer patients to and from mobility aids to medical equipment. „ When accessible medical equipment is acquired, staff should immediately learn how to operate it. Adjustable examination tables can be adjusted to the same level as a wheelchair: 17-19 inches above the floor. „ Examinations are more thorough when patients are lying on an examination table. Patients should not be examined while seated in their wheelchairs unless the examination does not require that a person lie down. When examinations are provided to patients while seated in their wheelchairs they do not receive equal medical services as required by the ADA. „ All patients, regardless of disability status, are entitled to go to medical appointments alone. Health care providers cannot require patients who have disabilities to bring companions or their personal care attendants to assist during medical examinations. However if the patient chooses to bring a friend, family member or assistant, before beginning an examination, the health care professional should ask the patient whether their companion can remain

Cindy Powell is a training and development specialist at Carmel Community Living Corporation and its nonprofit ACESO Foundation. She advises businesses, employers, government agencies and nonprofits about best practices for people with disabilities. §

in the room while discussing a diagnosis, test results or treatment. „ Health care personnel should talk directly to patients rather than companions. Providers should ask patients whether they require assistance, and if so, specifically how they may assist. Examples include, but are not limited to, assisting the patient with dressing and undressing and getting on and off and maintaining positioning on an examination table. „ Tenants and landlords are equally responsible for complying with the ADA. When leasing a space, the lease should specify who is responsible for some or all of the accessibility requirements. The tenant is frequently responsible for the space it uses, such as the examination and waiting rooms. The landlord is usually responsible for the common space used by more than one tenant, such as restrooms. Helpful links are specified below: People with Disabilities Often Miss Prevention, Wellness Care health/308229973/6/ Access to Medical Care for Individuals with Mobility Disabilities medcare_ta.htm

ANCOR Supports the Rights of People with Cognitive Disabilities to Technology and Information Access

Individuals and organizations, learn more and endorse the declaration here. In October, ANCOR and other disability organizations announced the declaration of The Rights of People with Cognitive Disabilities to Technology and Information Access. As the digital age continues to accelerate, access to technology and information is essential for community and social participation, employment, education, health and general communication. New technology has great potential to open doors for people with intellectual and developmental disabilities, so their unequal access is a significant loss to over 60% of the world’s population. The declaration puts forth the principle that all people have a right to inclusion and choice in relation to technology and access.

1880 Harrison Ave. 406-497-7000 Butte, Mt 59701

3701 Harrison Ave. 406-494-3900 Butte, Mt 59701

307 East Park Ave. 406-563-5203 Anaconda, Mt 59711 Apostrophe Summer 2014 23

Home & Garden

Curb appeal

SmartHome technology unlocks the outside world

Imagine! SmartHomes are living laboratories. They feature “SmartSupports” — assistive technologies that can be

used in family homes to keep people with developmental and cognitive disabilities living in their own homes, or their family homes, for as long as possible. Photo courtesy of Fred Hobbs, director of public relations for Imagine! §

by Judd Krasher Social Media Marketing Manager Living Resources Kevin Harding Director, Information Technology Imagine!

Most people with intellectual and development disabilities (I/DD) are locked out of many areas of technology. Many providers and ANCOR have committed themselves to unlocking those doors and ensuring that individuals with intellectual and developmental disabilities are fully participating members of this technological revolution. One innovative way providers are doing this is by building SmartHomes. Imagine!, a provider of services in 24

Today, most people use technology in a wide range of ways: enjoying access to entertainment, providing instant opportunities for mobile communications, and so on. Just when you think nothing more can be added to the list of how we can use technology, innovation surprises us. Colorado for people with I/DD and a member of ANCOR, opened its first SmartHome in 2009 (the Bob and Judy Charles SmartHome). It was designed with the goal of creating a space where people with disabilities could use technology to increase their independence and self-sufficiency. Since then, Imagine! received a HUD grant to help build a second

SmartHome, the Charles Family SmartHome. The SmartHomes project has received numerous awards, and the homes have hosted 1,500 visitors from 12 different countries. Residents at the Bob and Judy Charles and the Charles Family SmartHomes are connecting with their family, friends and members of

their support team via an accessible email system (Endeavor Email). Residents are also using a newly developed, easily accessible Facebook application with great excitement as they further connect with family, friends and co-workers. These tools have been developed by one of Imagine!’s main technology partners, AbleLink Technologies in Colorado Springs; and this partnership continues to evolve thanks to the input from residents and staff members. SmartHome residents are sharing their experiences through a variety of blogs. The technology being used in the SmartHomes was never meant to be permanent. As Imagine! discovers which tools and systems work, they are pushed out to other service areas of Imagine!, including day programs and other group residential settings. For example, a resident at Imagine!’s 19th Street group home is working with his DynaVox communication device to take the first steps toward independent decision-making.

Auditory cues The resident presses a switch with his head to interact with his device, and the speaker connected to the switch provides the resident with auditory cues based on his choices. Utilizing similar technology, an Imagine! Communication Class consisting of three non-verbal students who use communication devices, and one partially verbal student who does not use a communication device, are working on different objectives, such as letter recognition and device navigation. Imagine! staff members have developed a game of Hangman that allows students with very different levels of communication skills to achieve similar goals with this one classroom activity. Living Resources, a provider of services in New York for people with

“The house uses universal design to eliminate mobility barriers and 22,500 watts of solar collectors and solar heat storage to lower its carbon footprint.” I/DD and a member of ANCOR, has worked over the past five years to build the first Smart House in New York State. With $750,000 in public and private grants, Living Resources recently opened its SmartHome, exclusively serving people with intellectual and developmental disabilities and severe mobility issues, welcoming six individuals into their new state-of-the-art, 4,000 square-foot home. The technology encompassed within this SmartHouse is having a major, positive impact on the residents and the community at large. The house uses universal design to eliminate mobility barriers and 22,500 watts of solar collectors and solar heat storage to lower its carbon footprint. Programmable technologies were built into the construction design that allows all six residents to control their individual room environment: lighting, shades, fan, phone, TV and website access. Another crucial goal was to build spacious bedrooms so that each resident could invite friends and family to visit in the privacy of their own personal space. Located on a two-acre plot of land, Living Resources has plans to build outdoor recreational space and raised gardens over the summer months.

Thanks to a $50,000 kitchen design grant from Hannaford Supermarkets, the kitchen is set up to allow each person to safely participate in food preparation and cooking. All kitchen counters and appliances are ADA compliant. Each individual can safely use the stove; an induction stovetop designed so that it heats only the cookware without becoming hot to the touch and is programmed to shut off when not in use. With these technologies, SmartHome residents are able to fully negotiate their environment. ANCOR and community service providers like Living Resources across the U.S. believe that SmartHome designs create many opportunities for individuals with I/DD to exercise real choice, safely and independently, without limitations. Imagine!, Living Resources, and ANCOR operate on the philosophy that individuals with intellectual disabilities have much to offer their community. They believe technology offers people with intellectual and developmental disabilities more opportunities for greater independence. To this end, ANCOR collaborates with the University of Colorado’s Coleman Institute for Cognitive Disabilities in offering an annual Technology Summit held in October which is open to providers, people served and their families. Imagine! and Living Resources have long been active members in ANCOR, and Imagine!’s Chief Operating Officer and Director of Business Development, Greg Wellems, serves on ANCOR’s Board of Directors. Imagine!, Living Resources and ANCOR continue to believe the more services we can deliver using technologies that provide for lifelong learning and greater self-sufficiency the better the future will be.


Apostrophe Summer 2014 25

Taking a risk Sierra Lode’s personal story is about mental health therapy and depression, but it’s also about the success she’s achieved with love and support from people who value her contributions Sierra Blue Lode describes herself as non-verbal. That doesn’t mean she’s not talkative. And when it comes to helping teens with disabilities make the transition to adult life, Sierra, who is quadriplegic and has severe cerebral palsy, is never at a loss for words. “I present on various topics affecting youth with disabilities who are transitioning into the adult world,” she told Apostrophe in an email interview. “I have been there, and I have a lot of experience.” That’s an understatement. 26

‘Moments that take our breath away’ is the theme of the quote stenciled on the wall at the home of motivational speark Sierra Lode of Helena, Mont. Photos by Kenton Rowe §

Shortly after Sierra was born, a virus attacked her central nervous system and damaged her brain. “So the messages that my brain sends to my muscles get mixed up or don’t get there at all,” she said. “The part of my brain that thinks and learns is perfectly fine. I have to use other methods to communicate, like

using my communication computer to talk and to write.” A bright-eyed blonde with an alert gaze, Sierra started to put those communication tools to work when she was young but hit her stride in high school while preparing a presentation on cerebral palsy.

“I was asked by my health teacher if I would give my talk to all of the sophomore health classes,” she said. “I welcomed the chance to explain what CP is and dispel any myths about the disability. And I was somewhat motivated to get a good grade.” The presentation got her started on her life’s mission. “To my surprise, I was well received by the classes,” she said. “I felt like I had credible information to pass on to my peers, and I was ‘Eye-gaze’ technology allows Sierra Lode to communicate. The system consists of a inspired to develop other computer with several cameras that watch her eyes direct their focus to an on-screen keyboard. § topics involving the aspects of having a severe disability.” “It was there that I learned ‘cause “Sometimes my motor skills are Sierra developed her own IEP goals and effect’ on software called Catch right-on, and I can crank out lots of for her senior year to include doing the Cow,” she said. “By using a text, and sometimes it is laborious, two presentations at educational cheek switch, I trapped the cow fatiguing and frustrating. This conferences. The school district in a rectangle on the screen at the technology did get me through provided support staff and travel appropriate time by hitting my college, taking me six years to obtain expenses. She happily accomplished switch. I cannot control a joystick or an associate of arts degree.” her goals. switch with any part of my body, but my head has always been my reliable ‘A dear friend’ Motivating people resource for intentional use.” She used a “Light Talker” for several Sierra singled out another mentor. She’s out of school now and wants years by switch-scanning pictures to put her skills to work as a “Her name is Diane,” she said. that represented things she wanted motivational speaker and actually “Diane was my one-on-one to say with synthesized speech. get paid to do presentations. paraprofessional from the second “Once I learned how to spell, I grade all the way through two On her journey to adulthood, Sierra moved on to an Apple laptop with semesters of college. She is has been helped to by a number of ‘Speaking Dynamically’ software remarkable and is a special gift to people who love her and value her that had word prediction that I still me to this day although she lives contributions, starting with her operated with a cheek switch.” over 1,500 miles away now. Not only parents. is she my dear friend and supporter, Today she uses eye-gaze technology she continues to be a gift to all, “My mom and dad have been, — a system that consists of a especially to those individuals who and continue to be my rock and computer with several cameras that have disabilities.” foundation!” she said watch her eyes direct their focus to The daughter of Fred and Carol an on-screen keyboard. Sierra graduated from Capital Lode, Sierra was born in Cut Bank, High School in Helena in 2002 Mont., in September 1983. “This technology is extremely and completed an associate of When she was 3, a forward-thinking sophisticated, and though arts degree with an emphasis on pre-school teacher insisted on miraculous, my cerebral palsy is communication studies from having a computer in the classroom unpredictable in my success using Continued on the next page for her. it,” she said. Apostrophe Summer 2014 27

the University of Montana Missoula College of Technology in 2012. Because of her disabilities, she felt the need to prove to herself. “I felt that I had a better chance to do something meaningful with my life if I could prove to others that I had what it takes to be well educated,” she said. She also wants to be a example for others with disabilities. “I plan to be a more pro-active role model to those who have similar disabilities,” she said. To that end, she started a business as a motivational speaker, calling the venture “Speaking Out of the Box.”

Getting personal In her most poignant presentation she discusses her personal story about mental health therapy and depression. “I’ve had serious depression probably since middle school years,” said Sierra, who is 30. “Since I was not willing to share my secret, I did not seek help until after high school.” She took “the biggest risk of my life” by asking a female Dad and Mom (Fred and Carol Lode) are my “rock and foundation,” says Sierra Lode, psychologist if she would take who bought her own home in 2012 with her parents’ help. Photo by Kenton Rowe § her on as a client after she did “He’s the best,” Sierra said. and time – he comes to my house an assessment required as part of a In the part of her slide show because it is so much easier for me vocational rehabilitation application. presentation she calls the “Missing than going to his office.” Therapy,” she talks about depression. “She seemed like a person with Between sessions, the psychiatrist whom I could place my trust,” The presentation is geared toward encourages her to send him emails Sierra said. “Since then, I have been young people with disabilities, but on how medications he prescribed a client of a psychiatrist who goes are affecting her and how her moods Sierra has noticed that parents, above and beyond what you would teachers and other professionals in expect a doctor would do in this day are. 28

her audiences are keenly interested in the information she has to offer.

opportunities for lower-income people to live in affordable homes.

as well as being on the “Speakers Bureau.”

“When you can ‘come out’ with your own experience with depression,” she said, “it gives others the courage to do so also.”

“There is much involved in buying your own home, and I have relied on my parents’ knowledge about this huge step,” she said.

It should go without saying, but she emphasizes that she is the same inside as any other person her age.

To qualify for government financing, she took classes, including a 16hour “First-Time Homebuyers” course covering all of the topics involved with buying a home for the first time, such as qualifying for a mortgage, homeowner’s insurance, all aspects of the “buy-sell” legal document, property inspections, real estate agencies and Section 8 Home Choice Vouchers.

As for role models, she admires just about everyone who has a disability. Among the people who have had the greatest influence on her, she includes: June Hermanson, the founder of the Montana Youth Leadership Forum; Michael Beers, a peer advocate specialist for youth with disabilities “as well as a very funny stand-up comedian”; John Feught, a special education teacher who has quadriplegia and is also non-verbal (Feught is the founder of “Authentic Voices of America,” a camp at the University of Wisconsin-Madison for young people who are non-speaking and use technology to communicate; and Geri Jewell, an actress who has cerebral palsy.

“I just don’t look the same on the outside,” she said. “You can actually see my disabilities. They are mostly physical, but I am intelligent, have a good sense of humor and I like meeting new people and I don’t like being alone. I like to travel and visit large cities like Chicago and Washington D.C., and I would love to go to New York City in the near future. In her free time Sierra enjoys books, movies — especially musicals — and the theater.

Romantic comedies “I like romantic comedies as well as the classics like Little Women and Pride and Prejudice” she said. “Les Miserables is my new favorite.” She has never ever gotten tired of mac’n cheese and her dad’s homemade pancakes, she said, “are to die for.” Like other young adults her age, Sierra lives in her own home, a tidy two-bedroom affair with a deck and spacious backyard in a quiet neighborhood in Helena. She shares her home with another young woman, Beth, whom she describes as “the best housemate and friend ever!” Sierra bought the home last year with the help of AWARE Inc., a service provider in Montana, and NeighborWorks, which creates

“The Section 8 component was really involved,” Sierra said. “I was also required to take a 16-hour class on money management to qualify for some additional funds that were put towards my mortgage. Both the class and the additional mortgage money were simply invaluable.” She also had to save a certain amount of money to be matched by another program. “I have been extremely fortunate to have these various government programs that made it possible for me to be a happy homeowner,” she said

Youth Leadership Forum

‘I admire them all’ “She, too, is a stand-up comedian and professional motivational speaker,” Sierra said. “There are a lot more individuals who are so influential in my life. I admire them all, and I am so grateful for knowing them.” Sierra is “a very active” member of the Montana Independent Living Project Peer Advocates Committee and the University of Montana Rural Institute on Disabilities Advisory Council.

As if buying and keeping up a home and operating a fledgling business didn’t keep her busy enough, she is also active in the Montana Youth Leadership Forum and has been since 2000, when she was just 16.

“Our focus is on transitioning youth with disabilities into the adult world,” she said.

“Attending the forum changed my life drastically,” she said. “I found my worth and my potential as a young person with severe disabilities through this forum that I actively promoted for the next 10 years

Story by Jim Tracy, Apostrophe editor.

Sierra’s own transition is an excellent example to follow.

Apostrophe Summer 2014 29

{we focus on the positive} Shepherds College is the country's leading three-year post-secondary educational program for individuals with intellectual disabilities. • The only accredited post-secondary program of its kind in the nation. • Customized curriculum in culinary arts and horticulture • On-campus residential living develops independence • Functional academics, life skills, relationship skills and career opportunities • A faith-based path to higher learning 30

“Your program, from my very, very thorough research of programs for Daniela, is the most complete, by far, in providing everything to make each student reach the highest quality of life and independence for them. We are more and more certain that Shepherds College is where we want Daniela to go. I think she would gain tremendously in so many areas of her life.” ~ Christina Goldstone

Join us for preview days

To gain a full understanding of the groundbreaking work of Shepherds College, attend one of the following Preview Days: • April 4, 2014 • May 9, 2014 • September 12, 2014 • October 10, 2014

• November 7, 2014 • March 13, 2015 • April 17, 2015

Experience the small town warmth of Union Grove, WI. Meet with faculty, staff and students. Hear about financial aid options, including scholarships, to help cover the cost of this three-year program. Tour the dorms, homes and apartments. Eat lunch prepared especially for you by our Culinary Arts students. Learn from the students as they present knowledge gained in their specialty majors. Fill your mind with hope and possibilities!

Register today!

To register call Chris Wright, Director of Admissions, at 262-878-6351. Guest housing is available on campus.

262.878.6365 Apostrophe Summer 2014 31

Book Marks

A History and Sociology of the Willowbrook State School David Goode Darryl B. Hill Jean Reiss William Bronston AAIDD (2013) The Willowbrook State School is often regarded as the “ground zero” of the disabilities civil rights movement, and it is a significant part of the history of disabilities in the United States. A History and Sociology of the Willowbrook State School documents in great detail what life was like for people who lived and worked at Willowbrook during the period from its founding in 1948 until immediately before Geraldo Rivera’s sensational 1972 television expose about the conditions at Willowbrook. Authors David Goode, Darryl Hill, Jean Reiss, and William Bronston collaborated on the contents of this book. At least two of these authors had first-hand experience at Willowbrook. The result is a multifaceted sociological and historical analysis of the notoriously infamous Willowbrook, an institution for intellectually and physically disabled children and adults. Historically, Willowbrook was not so different from similar state institutions of its time. The period before the 1970s was a time when disabilities were increasingly “medicalized.” This situation became 32

the impetus for the creation of largescale institutions like Willowbrook, where the intellectually and physically disabled were often warehoused either because their families did not want to care for them or because they had no other place to go. The horrific and deplorable particulars of Willowbrook are showcased against the backdrop of the idyllic rural setting of Staten Island, New York, where the community of Willowbrook residents tried to survive in the midst of endemic inhumane and disreputable living conditions. Diseases, physical and emotional neglect and abuse, and even malnutrition were rampant. Within this highly self-contained institutional “island” that was hermetically isolated from the surrounding countryside, most residents were treated without any semblance of humanity and with systematic neglect. Although there were a few exceptions, most of the Willowbrook residents were treated as automatons and as laboratory experiments, with their disabilities manipulated through medications that kept them silenced, calm and under the control of their caregivers. For their material, the authors conducted interviews with former Willowbrook patients and caregivers, providing as many different perspectives on the history of how the institution functioned as possible. They maintain that perspectives on Willowbrook were different for different people, depending on the social status of the individuals involved at the institution. Willowbrook illustrated what American sociologist Erving Goffman described as a “total institution,” one completely cut off from the main society and in which a small number of powerful people were in charge of a large number of powerless ones. Today, the College of Staten Island occupies the buildings and 200-acre grounds of the former Willowbrook State School, where two of the authors

teach. Willowbrook was shut down in 1987. While this book provides grim reading, it serves as a necessary reminder of the perils of large-scale institutions and the “medicalization” of disability. Finally, it offers welldocumented reasons for avoiding future inhumane facilities for the intellectually and physically disabled. By Dr. Henrietta Shirk, who teaches in the Technical and Professional Communication Department at Montana Tech of The University of Montana, Butte, Mont. Dr. Shirk is a member of Apostrophe’s editorial board.

Making Self-Employment Work for People with Disabilities, Second Edition Cary Griffin M.A. David Hammis Beth Keeton Molly Sullivan Brookes Publishing 2014

As self-employment becomes a viable option for more and more adults with significant disabilities, give them realistic, practical guidance and support with the new edition of this popular guidebook. Updated with a new and improved assessment approach, more selfemployment success stories and the latest on policy changes and online opportunities, this book is your stepby-step guide to helping adults with disabilities get a small business off to a strong start.

You’ll discover the nuts and bolts of person-centered business planning, and you’ll get concrete, step-bystep strategies for every aspect, from business plans to marketing to finances. A must-have resource for employment specialists, transition professionals and individuals with disabilities and their families, this book is the go-to guide for turning a small business into a big success. Support people with disabilities as they: • discover their “personal genius” with a new assessment approach; • build a thorough and professional business plan based on their goals and interests; • successfully finance their small business using multiple revenue sources; • market their business, from defining customers to advertising in a variety of media; • maintain their benefits while navigating financial and social security systems; and • make the most of valuable support from rehabilitation personnel, vocational counselors, school transition staff, and community programs.

Practical materials Photocopiable planning worksheets, case studies that clearly illustrate the “how” of successful self-employment, and an annotated list of websites with vital information for small business owners. What’s new in this edition? • New, field-tested “Discovering Personal Genius” assessment approach • Up-to-date ideas on using social media and technology to develop and market a business • Completely revised information on person-centered business planning • Updated information about online business opportunities


“ Pro of l wih thro ind Just Like Other Daughters For parents raising kids with special needs

Colleen Faulkner Kensington Publishing 2013

Alicia Richards loved her daughter from her veryCHAT first breath. Days later, TWEET whenBLOG tests confirmed Alicia TALK what RADIO already knew — that Chloe had Down syndrome — she didn’t falter. Her ex-husband wanted a child who would grow to be a scholar. For Alicia, it’s enough that Chloe just is. Now 25, Chloe is sweet, funny, and content. Alicia brings her to adult daycare while she teaches at a local college. One day Chloe arrives home thrumming with excitement and says the words Alicia never anticipated. BLOG TALK RADIO

For parents Suna- young Fri 9 E She has met someone — raising kids with named Thomas. WithinTWEET days,CHAT Chloe special needs Mon &Thurs 9 a.m. E

and Thomas, also mentally challenged, declare themselves in love.


Alicia strives to see past her misgivings to the new possibilities opening up for her daughter. Shouldn’t Chloe have the same right to love as anyone else?$

Subscribe today!

4 issues/ 19.99

But there is no way to prepare for the relationship unfolding, or for the moments of heartbreak and joy ahead. With grace and warmth, Colleen Faulkner tells an unflinching yet heartrending story of mothers and daughters, and of the risks we all take, both in loving and in letting go.


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Fashion & Style

Ellie 36


Fashion TIP! Be 'cool' in casual clothing Heading to college in the fall? Odds are you’ll be dressed in casual clothing and sitting in a classroom. But before tossing all your sweats, pajama bottoms and yoga pants in your suitcase, consider a few things first: 1. Make sure your clothing meets the dress code policy. 2. What's the climate like where your new school is located? You’ll pack differently if you’re heading to a place with warm or cold weather. 3. College students don’t have a lot of money for dry cleaning or space for hanging hand washables. Read care instructions and select practical items. 4. Given your specific disability and all of the snaps, buttons, hooks, and zippers, can you manage the clothing on your own?


5. Are you so comfortable in your clothing that you can forget you’re wearing it? If it's uncomfortable, over-the-top, or just doesn’t make you feel good wearing it, you’re going to be distracted (and maybe even distracting) in class. Wear clothes that help you stay focused! Apostrophe Summer 2014 37

Fashion TIP! Business savvy selections As your college years progress, you’ll be heading off to job fairs, internships and job interviews. Your college hoodie isn’t going to cut it! It’s time to break out the suit wrapped in dry cleaner’s plastic at the back of your closet. You don’t own one? Don’t worry! There are stores that sell gently used clothing at prices that won’t hurt your college budget. Check them out first before going to a full-priced department store. Now what should you pack? If you already own a nice suit or classic dress, pack it carefully. One of these should get you through the first year or two of college. If you already know that your major is going to involve an internship that will require more dress clothes, start haunting your neighborhood resale or consignment shop. Talk to the manager, and let her know what size and types of clothing you need. Most shops will contact you when this type of clothing arrives. It wouldn’t hurt to pack a nice belt, dress socks, and a pair of dress shoes (black is safe). They don’t take up much space! 38




Apostrophe Summer 2014 39




Fashion TIP! Belle, or Beau, of the Ball? What about your social life? There will be plenty of time to hang out with friends in your comfy clothes, but there’s also going to be special events that call for a little oomph and pizzazz, such as formal dances, banquets or elegant weddings. Think tuxedos, evening gowns and shoes that reflect like mirrors. It’s time to close that suitcase and lock it. Why? Because you don’t really need to pack formal wear. Ladies, once you get to campus, look for a local resale or consignment shop. Many women wear evening gowns once and then they give them away. You can pick up a designer dress for a price that will still allow you to pay tuition! Guys, get outfitted in a tux or formal suit for a reasonable fee at a store that rents clothing. The rental fee covers everything except your underwear! Save the big bucks for your education. Photos by Nate Peterson (fashion photos) Russ Kinkade, Angela Houk (behind the scene) Wardrobe by Burlington Menswear Chic & Unique Consignment Boutique


Ashley by Design Hair and Makeup by Gateway Cosmetology School Apostrophe Summer 2014 41

Behind the scenes

Frame by frame at the Shepherds College fashion shoot

Hair, makeup, school spirit

News, hoops, angels, pearls



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A one-year subscription to Apostrophe will help you stay up-to-date with the latest issues that affect your life. Read about advocates and entrepreneurs. Stay current with ADA, access, fashion, books, movies and recipes! And learn about health, home and garden and much more! Subscribe today! Apostrophe is $19.99 for a subscription. That is four issues per year. Each issue is packed with stories for and by people with disabilities living their lives well. Look for Apostrophe’s signature Exclamation Point! section, which highlights people who are athletes, entrepreneurs and artists, among others. Look for new ideas and outlooks on access by advocate Chris Clasby, avid outdoorsman.

Simply subscribe on line and enter the code “HUCKLEBERRY” – In less than two weeks you will receive a wonderful, deliciously sensual, Montana Wild Huckleberry Chocolate Bar and a box of Chocolate Cover Huckleberries complimnets of Montana Old West Gallery & Candy Store in Darby, Montana. We hope you will catch the vision and subscribe to Apostrophe.

Too often people with disabilities are told what they can’t do. Apostrophe emphasizes what they can do. Each article turns “can’t” and “shouldn’t” into “can” and “should.” Every story, column and section in the magazine encourages eliminating the apostrophes in peoples’ lives.

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Photos by Amanda Horton 44

If you can dream it The famous quote from Walt Disney, “If you can dream it, you can do it” applies to Tim Harris. Born in 1986 with Down syndrome, Tim has lived a life defined by exceeding expectations. Today he owns Tim’s Place, a popular restaurant in Albuquerque, N.M., where he serves hugs and a hopeful message: “People with disabilities can do anything they set their minds to.” Tim has been featured in People Magazine and on CBS’s On the Road with Tim Hartman. CNN Headline News picked up a story about Tim from KRQE New Mexico Works. He has also been featured on the KOAT Evening News and in Albuquerque The Magazine. A story about Tim and how he influences others, written by his brother Tommy, begins on page 46. Apostrophe Summer Apostrophe Spring 2014 45

‘Disabiity is a funny word’ by TOMMY HARRIS

My older brother Tim has Down syndrome. We come from a family of four boys. Dan, Tim, Tommy and John, in that order, all two years apart in age. All families that have a child with a disability have a fascinating story to tell, some of these start heavy-heartedly, but most often, they turn out absolutely wonderful. I want to tell you the story from a voice not often heard, the voice of a sibling.

What’s normal? From the outside looking in, some might think that because of Tim, our lives are not “normal.” I couldn’t begin to say how wrong they would be. Being two years younger than Tim, I don’t remember too much from the early years, he was just my brother, no different from the

others. We were all very close, and we did all the things brothers do: built forts, played video games and ran around in the backyard all day wrestling and wreaking havoc. Only when I started going to school did I notice that Tim was any different. My parents, like most others at that time, fought fiercely and moved a mountain to get him the education he deserved. He was in different classrooms than I was though, and people called him names just because they didn’t understand; just one silly thing that kids do to others who are outside the “circle.” That wouldn’t faze Tim though. By middle school, his infectious happiness started gaining him popularity, and people began to look past his shell that was different than theirs. When he got to high school, he was already well known, but after his Special Olympics team was introduced at the school’s sports assembly, he

was famous. He was so famous that in his senior year he was voted homecoming king, and by a staggering margin of votes I might add. I wasn’t ever in Tim’s shadow, but I was known through school as “Tim’s brother.” My friends would tell me how they saw Tim between classes, and maybe Tim told them they were his best friend, or that he gave them a piggy-back ride to their class, or some other way he made their day better. I later found that it wasn’t just my friends that had these experiences though, it was everyone.

Rare gifts Tim, like all people with Down syndrome, lives with laggard motor skills and cognitive processing. That certainly makes a lot of things difficult, but with that package also comes a rare set of gifts. One of Tim’s most marvelous gifts is a complete lack of prejudice. Most of us learn it at a very young age, and sometimes with a strong mind, it Before becoming proprietor of the ‘World’s Friendliest Restaurant’

Tim worked as a host at an eating establishment in Albuquerque and then studied food service in college. Today he greets customers at Tim’s Place with a smile and a hug. §


One not so usual thing on the menu though, is a free “Tim Hug.” A hug is one of the most sincerest gestures of affection, and Tim understands that better than anyone I know. He knows how to connect with people and make them feel truly welcome and appreciated, even if they aren’t comfortable with a hug.

Known as “Tim’s brother” in school, Tommy Harris (left) says his parents fought fiercely to get his older brother the education he deserved. §

can be suppressed, but in Tim it simply doesn’t exist. Because of his gifts, he was friends with everyone at school. The jocks, the nerds, the skaters, the Goths... name any group, they all called him friend. He went from being “out” of our proverbial circle to “in.” He did come across the occasional bully, people that claimed to be his friend but had malicious intentions, but they were vastly outnumbered by friends and the bullies never got the best of him. At school, I was terrified to meet people, I didn’t want anyone else to think I wasn’t cool, a selfconsciousness that quickly faded from being in close proximity to Tim. After high school, while I was back home slowly figuring myself out, Tim went off to college. He had worked as a host in a restaurant in Albuquerque where we live, and he discovered his passion for people and the restaurant business. That’s where the idea of “Tim’s

Place” sprouted, a restaurant that he would open where he would not only serve food, but give out free hugs as well. He went to college in Roswell, N.M., for four years and took many different programs including food service and Office Skills, as well as classes to help him manage his life. Things like paying the bills, practicing good hygiene, or managing a budget can be hard for someone like Tim, but with the help of these programs, he made notable progress in that regard. I remember thinking to myself how insane the idea was of Tim owning a restaurant, but as time went on and Tim came home from college, the idea went from a dream to reality, and my doubts were dissolved. In October of 2010, doors opened at a new restaurant in Albuquerque. “Tim’s Place – Breakfast, Lunch, and Hugs,” open seven days a week serving traditional New Mexican food as well as other standard breakfast and lunch items.

Tim really likes to give hugs, and when the restaurant first opened, we were worried that he would push people past their comfort zone. Our worries were pointless though, Tim has an acute awareness for that kind of thing and perfectly respects their boundaries.

Friendliest Restaurant His role in the restaurant doesn’t exactly include cooking, serving, or even managing, but rather he creates an environment that no other restaurant has. We call it “The World’s Friendliest Restaurant,” and Tim uses his gifts to make it just that. His staff is getting ever better at putting the prejudices aside and taking people for what they really are, and engaging them with that mindset, Tim’s mindset. The result is phenomenal, it’s something that I wish everyone could see with their own eyes. Looking to the future, my hope is that Tim’s Place will provide him self-sustainability for the rest of his life. One day, hopefully many years from now, my parents won’t be in the picture. I would do anything it takes to help him with whatever he needs when that time comes, but because of his restaurant, I just don’t think he’ll be needing my help.


Apostrophe Summer 2014 47

Be a backyard

l S l tar! i r G Make your burgers gourmet Spice it up! Add jalapenos, pepper jack cheese or salsa

Cool it down! Add avocado, tzatziki sauce or blue cheese

Ham it up!

Summer is the season for BBQs, and you can be the star of your own backyard. Follow the Backyard Burgers recipe, and they'll keep coming back for more! 48

Add hickorysmoked bacon with cheddar cheese

Slide it on!

Form mini burgers and serve with mini buns

In the Kitchen

Backyard Burgers

Prep and cook times 30 min

· Makes 4

Ingredients • 1lb ground beef

• 4 slices of onion

• 4 hamburger buns • 4 slices of tomato • 4 slices of cheese

• Salt and pepper

• 4 lettuce leaves

• Olive oil

You will need Gas grill, grill pan or charcoal grill (firing the coals will take an extra 30-45 minutes), metal spatula, sharp cutting knife and cutting board.

Make the perfect backyard burger! 1. For extra juicy

6. Brush the burgers

2. Divide meat into four equal portions and gently form patties.

7. Flip the burgers

3. Sprinkle salt and

pepper on both sides before putting the burgers on the grill.

8. Add cheese at about 3 minutes, cover the burgers with tin foil or a lid to melt the cheese.

4. Set your gas grill

9. Place burger

burgers, choose ground beef that is at least 18 percent fat.

to high or heat the charcoal until it is glowing bright orange with ash.

with oil and grill until golden brown and slightly charred. Cook three minutes. and cook until golden brown and slightly charred, four minutes for medium rare.

between two buns and serve immediately with preferred toppings. Apostrophe Summer 2014 49

autism NOW

THE FIRST STEP TOWARD ACCEPTANCE IS UNDERSTANDING. DURING NATIONAL AUTISM AWARENESS MONTH THIS APRIL, THE ARC AND AUTISM NOW INVITE YOU TO LEARN MORE ABOUT AUTISM SPECTRUM DISORDERS AND OTHER DEVELOPMENTAL DISABILITIES. Autism NOW is an initiative of The Arc, the nation’s leading and largest organization for people with intellectual and developmental disabilities and is funded by the Administration on Developmental Disabilities. Find out more about The Arc and consider joining or becoming a chapter at 50

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Apostrophe Summer 2014 51

Connect with your body, mind & soul Yoga is a physical, mental and spiritual practice or discipline that originated in ancient India. Yoga harmonizes the body with the mind and breath by using various breathing techniques, poses and meditation. To the right are basic moves that will help you get started with your yoga practice. While the photos and descriptions will give you an idea how to perform each pose, it's best to learn from a certified yoga instructor. Also, don't forget to consult your physician before starting any exercise program. Learn more online at:


Downward Dog

Warrior 1

Start on your hands and knees with hands and feet shoulders-width apart. Curl your toes under and press the balls of your feet to the floor. Press your hands to the floor with your fingers facing forward. Lift your hips to the ceiling to form an upside-down "V." Press your chest to your knees, focus your eyes on your toes and push your heels to the floor. Hold for two-three breaths.

Begin in the downward facing dog position. Move your left foot forward and place it between your hands. Turn your right heel in (with toes to the right). Press your feet into the floor, and lift your torso. Ensure the arch of your right foot is in line with the left heel. Gently square your hips by pressing your right hip back and your left hip forward. Lift your arms over your head and press your palms together. Raise your head and gaze at your hands. Stay in this position for five breaths. Return to the downward facing dog position. Repeat on the other side.

Tips: Your upper and lower body should be equally supported. Push the floor away with your upper body, and press your heels to the floor. Benefits: The downward facing dog stretches your spine, the back of your legs and your feet. It also strengthens your shoulders and wrists. The downward facing dog is a rest position between yoga poses and is considered a calming stretch.

Tips: Modify Warrior 1 by reducing the distance between the heels to decrease intensity. Benefits: Warrior 1 helps lengthen and strengthen muscles in the legs, hips, back, and shoulders. This pose helps build patience.


Health & Wellness


In yoga, breathing is performed while

Child Pose

Chair Pose

Start on your hands and knees. Untuck your toes and lower your buttocks back toward your heels, until you feel a stretch in your lower back and tailbone. With your knees about hip-width apart, stretch your body forward and rest your torso over your thighs. Lengthen your neck and rest your forehead on the ground. Position your arms in front of you with your hands on the ground. Hold the Child Pose for several slow breaths.

Begin by standing with your feet hip-width apart. Inhale and raise your hands above your head, palms facing each other. Exhale, lowering your buttocks and bending your knees like you are going to sit in a chair. Together your thighs and torso will form an approximate right angle. Shift your weight to your heels. Inhale and return to the starting position after holding the Chair Pose for about one minute.

Tips: Gently ease your buttocks to your heels lowering into a position that is most comfortable for you. Benefits: The Child Pose warms your thigh muscles, opens up the back, expands the hip flexors and helps improve the health of your organs. It is also a calming stretch used as a rest position between poses.

holding a pose. Yoga breathing is different for each person. It's best to practice first to get an idea about how to breathe while holding a pose. To breathe, slowly inhale through your nose expanding your chest with your lungs. Pause for one or two seconds. Then slowly exhale your breath through your nose. Six to eight breaths equals about 30 seconds. Also, remember to breathe (don't hold your breath) while moving from pose to pose.

Tips: When you look down, make sure you can see your toes. You are at risk for a knee injury if your knees are over the line of your toes. Shifting your weight to your heels will help with the proper knee position and help you avoid knee pain. Benefits: The Chair Pose strengthens your legs, hips, ankles and back. This position also stretches the chest and shoulders. This pose helps build patience.

Apostrophe Models, Russ Carstens (top) and Judy Armbruster, receive a yoga lesson from instructor Liana Schmidt at Goosetown Racketball & Health Club in Anaconda, Mont. Liana recommends using a chair or other props if you are a beginner or have issues with mobility. § Apostrophe Summer 2014 53

Dressed in full gear, Kyle Miller, with Boulevard Chief Ed Fisher and Captain Guy Quam stand in front of The Boulevard Volunteer Fired Department located in Butte, Mont. Photos by Blake Hempstead. §

Firefighting is in his blood by BLAKE HEMPSTEAD

As he navigates through a dark, cozy station hall tucked away adjacent to the I-90/Montana Street off-ramp in the Mining City of Butte, Mont., Kyle Miller makes his way to the equipment room as his Chief and mentor, Ed Fisher, hits the lights. The Boulevard Volunteer Fire Department has been located here for nearly 60 years, and Fisher, as a volunteer member, has been a member for 40. “Put it all on Kyle, just like you were in training,” Fisher instructs his 19-year-old protégé. Kyle obliges by putting on the yellow preventative clothing and 54

then practicing safety measures on his outfitting, no doubt learned from his mandatory firefighter training classes. Kyle will probably never engage in the dangerous undertaking of entering a burning structure to attack a fire, but Fisher and his 20-plus member crew stand in unison confirming their youngest volunteer is part of the family.

Hurdles becoming a firefighter With every step in his gear, it’s evident Kyle loves the aura of the station. Then again, it’s in his blood. His father, Jeff, is the Chief of the Butte-Silver Bow Fire Department and has been a

firefighter throughout his life. “He doesn’t know any different,” says Jeff, who, along with his father-in-law, have spent their adult lives in the danagerous profession. “He’s been raised around the guys and in the department. It’s what he knows.” The members of Boulevard feel the same bond with the Kyle. “He’s a great kid to have around; he raises everyone’s spirits when he’s here,” Fisher says.

Overcoming the odds Doctors never pinpointed Kyle’s disability but have narrowed it down to a disease in his metabolic chain at the cellular level.

Exclamation Point!

five miles west of Butte up to three days a week. Gary Deitz, a former member of Boulevard who manages the facility, offered the position to him. “I brought Kyle on to clean windows and bag ice, and he did a fantastic job,” Dietz said. “He’s been such a valued employee we’ve been able to give him more hours and responsibilities.”

Kyle dons the gear he wears when his fire department is called out on an emergency. §

“They are pretty convinced it’s a problem with his mitochondria,” Jeff explains. The problem causes Kyle fatigue and a handful of other setbacks. “He had seizures at a young age, so we think that’s part of the reason he’s has some learning and physical disabilities.” But love for his ancestry has propelled the kindhearted, soft-spoken Butte High Bulldog graduate to pursue his birthright. No disease will tell him otherwise. With his disability, Kyle is prone to heat exhaustion, yet he continues the pursuit to follow in his dad’s footsteps. He has been through the rigors of training just like all of the other Boulevard members, joining almost 150 others spread between 11 volunteer departments in Silver Bow County.

Finding his place Fisher keeps a special eye on his right-hand man at all times.

During fires, Kyle stays involved by helping firefighters keep their oxygen tanks refreshed and stays at the beck and call of his Chief. “They need us, don’t they Kyle? Without leadership it all turns to hell, right?” jokes the vet in what is obviously a common conversation between the pair. Kyle answers as he always does, with a nod, genuine smile and a one-word retort. “Yep.” The camaraderie found in the station — which comes hand in hand with their constant ribbing of Kyle being the son of a paid firefighter — is a time-honored tradition during Tuesday evening department meetings. “It’s comes with the territory,” laughs Jeff. “They take real good care of him there. I appreciate all they do for him.”

Paying the bills Because no member of Boulevard is compensated monetarily, Kyle works at Flying J Truck Stop

The full service convenience store and lounge for over-theroad drivers operated by Town Pump Inc., — a champion for organizations involved in serving people with developmental disabilities and Special Olympics of Montana — opened its arms to Kyle, and the business is reaping the benefits. Now tasked with the cleanliness of the truckers’ bathroom and shower facilities, including the stocking of toiletries and linens for the customers, Kyle is keeping some of the property's most important clientele happy as ever. “Our customers are very particular. Kyle does a fantastic job keeping them coming back,” Deitz said. Deitz also found hiring Kyle improved the overall morale of his workforce. “He puts a smile on everyone’s face when he’s here,” Deitz said. “He’s a joy to have around.” At every turn, Kyle is proving the barriers he’s been saddled with aren’t roadblocks at all. Instead, he uses them as fuel to fulfill a life of happiness for him and those lucky enough to be in his circle. “He’s such a responsible and loyal kid — he’s always been that way,” Jeff said. “You just can’t beat him.”

Apostrophe Summer 2014 55

Exclamation Points!

Audiences join the fun with Voices of the Village You don’t have to limit yourself to toe tapping or finger snapping when you hear a live performance of Voices of Village. The band provides a box of instruments for the audience to play along — tambourines, maracas and cowbells, for example. It makes the joyful music Voices of the Village plays all the more fun to listen to. You can even bring your instrument with you to the dance floor. Voices of the Village is a 27-member musical ensemble that performs throughout the Puget Sound region of Washington state and beyond.

instruments: drums, keyboards, accordions, banjos, saxophones and even an Australian didgeridoo. Dalgarn had already worked with adults with disabilities through Village Community Services residential and vocational assistance programs in Arlington. But participating in the band, he said, allows people to express their artistic spirit and joy of living. “It really changes their lives,” Dalgarn told The Arlington Reporter newspaper. “By being able to express themselves in this way, they learn a bit more about how to deal with the world, and the world learns how to deal with them. This is the best gig in the world, because there

is so much unmitigated joy in their performances. We hand microphones to people who, in many ways, didn’t have a voice, so that they can sing and hear other people clapping for them. It’s about way more than music. They have a real passion for it.” In addition to playing gigs through out the Northwest, Voices of the Village hosts weekly Friday Music Jam Sessions and the monthly Evening with the Arts dance in Arlington. The band’s influences include the Monkees, Beatles, Eagles and Steve Miller Band. They play “good country” (Elvis and Johnny Cash) and contemporary pop, show tunes, holiday music, Frank Sinatra and original compositions by Dalgarn.


The band consists of musicians and performers who have developmental disabilities plus guest musicians who sit in at jam sessions and shows. The audience at their annual concert is made up of people who have disabilities and their family, friends and caregivers. Musician Jon Dalgarn first organized the band about 10 years ago and still leads it. Adults with a wide ranges of abilities sing and play a variety of 5656

Voices of the Village from Arlington, Wash., hosts weekly Friday Music Jam Sessions and a monthy Evening with the Arts Dance. Photo courtesy of Vicki Adams §

‘When she paints she becomes very happy’

The 13-year-old daughter of Robert and Sandy Waters of Park Ridge, Ill., “Candy,” who is non-verbal and has severe autism, has had her artwork featured on the covers of two magazines. She has also been the focus of stories in The Chicago Tribune and Los Angeles Times.

UCIrvine m a g a z i n e

summer 2013

Artist Candace Waters, a bright-eyed redhead with a flair for color and design, has produced attention-grabbing works of art.

Candy’s “Ray of Hope” painting graces the newly constructed Dan Marino Foundation’s campus in downtown Fort Lauderdale, Fla.

Spotlight on autism: Helping families face the journey Tech support for caregivers Reaching children through dance

Plus: Campus welcomes new provost

“Even though Candy is unable to Mr. Sun by Illinois artist Candy communicate through words and Waters graces the cover of UC Irvine Magazine summer 2013 issue. § has trouble interacting with others, she expresses herself through her Her radiant style of paintings show paintings,” her father said. “Her art an uncommon understanding of how has inspired people and raised autism colors can blend and compliment. awareness around the world.”

Bright, happy world “Most importantly, her paintings give people hope,” Sandy Waters said. “We feel Candy is giving all of us a unique little glimpse into her world. “Her paintings allow us to see what she sees and feel what she feels. As you can see by her beautiful paintings, it must be a bright happy world.”

work hangs in Park Ridge City Hall, the Chicago office of state Senator Dan Kotowski Chicago office and the office of U.S. Rep. Jan Schakowsky’s, also in Chicago.

“When she paints she becomes very happy and laughs which is priceless,” her father said. “We are so proud that Candace is able to express herself through her art.” Several of Candy’s prints (the family keeps the originals for sentimental reasons) have sold for $300-$800. Her

Prints of her paintings are for sale through the Kind Tree-Autism Rocks Foundation and We Are Lions. Half of all proceeds from the sales of the prints go to help others on the autism spectrum fulfill their dreams of becoming artists. The UC Irvine Magazine (University of California) used Candy’s “Mr. Sun” painting for the cover of their summer 2013 issue that highlights the university’s efforts to help those affected by autism. Fox Chicago News & ABC 7 Chicago News have done special segments on on her and Autism Speaks recently did a blog on her art. Inspired by Candy, Robert and Sandy have created an Autism Awareness Radio Show, “The Candy Store,” on Blog Talk Radio.

Candy has been creating works of art since she was 6. A teacher sent her home with some materials and asked her parents if she could paint. “We didn’t think she could but she did, and sure enough, one of her first paintings sold for $100 in a local gallery,” Mr. Waters said.

Though non-verbal, Candy Waters expresses herself

through vivid paintings. §

“Our mission is to increase autism awareness and compassion for those with autism and to empower other parents with knowledge,” Candy’s parents said in an email. “We reach out to other parents who have a child with autism to let them know that they are not alone and to never give up Faith, Love & Hope. They also wrote a song for Candy titled “Faith, Love & Hope.”


Apostrophe Summer 2014 57

Adaptable tools for a little (or a lot) of summer fun by Chris Clasby

As the weather warms and days get longer, it's the time of year when we all start itching for summertime fun and recreation. It's also a great time to remember that many recreational activities and types of recreational equipment exist or have been adapted for individuals with disabilities to participate. Regardless of disability, we all like to play, so it's great to know that such a wide variety of recreation is possible. It's also been shown that benefits of recreation go far beyond simple enjoyment; those who recreate are more likely to succeed in such other life areas like education and employment. Below are just a few ideas for some disability-friendly recreational fun. 58

Cast a line Whether it's because so many of us love to fish or because those who do fish want to share the activity, many types of fishing equipment have been adapted to disability. The Van’s EZ cast, for example, is a device that enables someone with the use of only one arm or hand or limited hand function to independently cast a fishing pole and reel the line in. Mounted to the armrest of a wheelchair, lawn chair or other stable surface, this device holds the line in place as the user cocks the rod back and then releases it to cast at the perfect time as the user thrusts the rod forward. The line is thereby launched forward and can be retrieved by turning the reel handle with the same hand. Other


Access devices include the Elec-tra-mate motorized reel and others like it or various rod holders and even knottying devices for those with limited or no hand strength or function.

View nature through a lens Almost anyone with any level of function can find equipment to participate in wildlife viewing and/ or photography. From autofocus, fixed focus, image-stabilizing binoculars, monoculars, and spotting scopes to a wide variety of mounts, stands, and tripods, viewing equipment is versatile. Those with limited fine motor function can find off-the-shelf or adapted distance viewing devices within their full control. Anyone with limited strength and/or coordination can find some type of mount to hold viewing devices in position for use. Adaptations for photography exist to meet the limitations of many. Controls to take photos with remote, bite, and even sip & puff switches enable people with very limited or no hand or arm function to take photos. Some camera mounts offer motorized pan, tilt, zoom, and shutter release controls to enable their users to aim, focus, and take photos without touching the camera.

Aim for the big one Shooting sports and hunting equipment have been adapted to accommodate nearly any disability. BE Adaptive Equipment makes a variety of shooting devices , including gun and archery mounts that attach to wheelchairs. Some of their products make shooting sports possible for users with limited and even no arm or hand function. Other shooting adaptations enable users with various levels of function to aim, pull triggers, and/or simply support firearms or archery equipment. One device called a scope camera display combines viewing and photography with

shooting sports by connecting a firearm and a 2.5" LCD color monitor to display, video, or take photos of its target. The device can be used with any of the above adapted mounts.

Pedal the pass A cycling enthusiast might find that one specific model or style of cycle is more suitable to his or her specific disability than another. A three-wheeled cycle might provide more stability for those with limited balance while a recumbent cycle might be easier to mount and dismount for others. Differing handlebars, brake levers, and other accessories could be optimal for some users with upper extremity limitations. Even bicycle height and weight are factors to consider for strength-limiting disabilities. Various wheelchairs, walkers, crutches, trekking poles, and other mobility devices simply make recreational mobility easier than others for those with disabilities to get around for recreation.

Develop a green thumb For those with disabilities who enjoy domestic leisure time or simply being outside without doing specific activities, other types of equipment exist. Equipment for yard hobbies like tending to flowers or gardening

is available in various styles or with features to accommodate users with limitations. Some yard tool boxes on wheels can serve as mobile working seats and benches for those who can't stand long or have limited coordination while walking. From a wide lawn shears and trimmers to long-handled rakes and shovels, yard tools to accommodate various disabilities are available from providers like the Gardening with Ease website. Sometimes the same standard tool made by one company offers a specific design that makes it more usable by people with disabilities than others. Whether recreational equipment has been especially adapted to meet the needs of individuals with disabilities or a specific design just happens to work better for users with limitations, something exists to enable us all to play. This is a perfect time to explore those various types of equipment and our own interests to see how we can pursue activities of our choice. Disability should not deter us from joining many others who find summertime months the best time to play, so get out there and have some fun!


Chris Clasby lives in Missoula, Mont. He is an avid hunter and fisherman, and of his work has centered on helping people with disabilities access the outdoors. § Apostrophe Summer 2014 59

Assistive Tools & Devices


FiLIP is an award-winning wearable phone and smart locator for kids. Worn on the wrist and designed to be colorful, fun and easy to use, FiLIP combines cutting-edge location technology (GPS, Wi-Fi location and cell tower positioning) with cellular voice capability to keep parents and kids connected on any adventure. FiLIP is controlled from a native mobile app installed on the parent’s iPhone or Android smartphone. From the app, the parent can designate five trusted contacts that can communicate with the child, which makes it easy for the child to call a parent, grandparent or friend. It also ensures that your child doesn’t communicate with anyone you don’t approve. Using the app, parents can also view the location of up to five FiLIP watches, send short messages to a FiLIP watch and set virtual SafeZones (a/k/a geo-fences). There’s also an intelligent emergency procedure designed to quickly connect the child to a trusted contact if needed. FiLIP requires service from AT&T and is available online or in AT&T stores nationwide. See for details.

Rest Assured®

Rest Assured® is caring for people using remarkable technology to help people: • Improve the quality of their lives

Tek Robotic Mobilization Device Matia Robotics created the Tek Robotic Mobilization Device (TEK RMD) not as a wheelchair alternative but a brand new mobility platform that reimagines the way individuals with paraplegia and other walking disabilities are able to move. The ability to independently and safely sit, stand and navigate environments once inaccessible, is now possible. Since wheelchairs can only be front-mounted, the TEK RMD can be pulled easily by the user and boarded securely from its back. Mounting and dismounting can be done successfully in a much safer way since the user is doing so while in a seated position. The TEK RMD is the world’s smallest motorized standing movement device. It is only 15.6” wide and 29.5” long (39.5 cm X 75 cm). With these dimensions, it covers only one-third the space of a small wheelchair. Users can pass through narrow spaces they cannot pass through with a standard wheelchair. Learn more at

Elements apps

• Increase their independence and

• Maintain their privacy, health and safety.

Rest Assured® is a patented web-based system using wireless technology to bring trained caregivers into people’s homes virtually. You see and talk to them in real time. If you need them, they respond. They can also check sensors that measure everything from room temperature to carbon monoxide to doors and windows opening. Rest Assured services have been specifically designed to support adults who have cognitive, intellectual and developmental disabilities.

Rest Assured links a person in their home to offsite caregivers who provide support tailored to each individual’s specific needs. Rest Assured “Tele-Caregivers” are trained on each individual’s unique care requirements and can provide supportive prompts, cues and socialization to assure health and safety needs are met in the least restrictive setting. Technology is changing how individuals with disabilities receive support. It gives them the ability to live the most independent lives possible and lowers the cost of care. 60

Alexicom Tech has created more than 15 augmentative and alternative communication (AAC) apps for all ages. They are called Elements. Element apps provide a way for people to communicate when they no longer can speak or have difficulty communicating with others. Elements apps are used by beginning communicators to fluent communicators in need of another way to be understood. Elements apps help teach beginning communicators who cannot speak or be understood to learn how to use language to communicate with others. For people who cannot speak or be understood but have language, Elements provide them a way to socialize, to get basic wants and needs and to express themselves. Elements apps contain vocabulary for a variety of ages: ChildHome for children; TeenHome for teens; and AdultHome for adults. Based on research from adults who use AAC, Elements images and vocabulary are designed for the corresponding ages. Elements apps are affordable and easy to customize with vocabulary or phrases that the user wants to say. Alexicom Tech’s mission is to provide as many people as possible with a voice to be heard! Learn more at

If you have difficulty understanding words clearly over the phone,

Just fill out this form!

You may qualify for free assistive telephone equipment through the

 Yes, I want to learn more about MTAP!

Montana Telecommunications Access Program! The Montana Telecommunications Access Program (MTAP) provides FREE assistive telephone equipment to those who qualify, making it easier to use the phone to do business and keep in touch with family and friends.

Name: Address: City: State:

MTAP includes: • Equipment available through Amplified (louder) telephones • Captioned telephones • Loud bell ringers • TTYs (text telephones) • Artificial Larynxes Much, much more!



Return form to: MTAP P. O. Box 4210, Helena, MT 59604

For more information just mail us this form or call toll-free:1-800-833-8503

Safe Harbors

October 2013 MTAP Ad.indd 1

9/30/2013 10:51:01 AM

Providing residential and day services for adults with severe developmental disabilities Missoula, MT w w w. m d s c m t . o r g Apostrophe Summer 2014 61


Tess Langston is a fine arts/media arts student at the University of Montana. Her primary interests are comics, animation, mythology and music. Tess now has a webcomic called Anime Asylum at www.some-stories. com/anime-asylum. In January 2012, Apostrophe introduced Jigsaw, a cartoon strip featuring Tess’ characters ­— Fay and her friends and family.


Worth Watching

Laser Beak Man

10 min. / documentary 2010 / Australia

A child who was never expected to walk or speak overcomes incredible odds to become an accomplished visual artist with his animation series screening around the world. This is the story of Tim Sharp, an artist on the autism spectrum, who has overcome incredible odds to become an internationally recognized visual artist with his super-hero character Laser Beak Man. Nominated for the Young Queenslander of the Year Award in 2008 and 2009, Tim works tirelessly for autism groups around the world. The film reveals how a child who was never expected to walk or speak has defied the odds to become an ambassador for people with autism. Sharp is most famous for his bold and colorful works completed in crayon that all feature his superhero

Laser Beak Man is the story of Tim Sharp, an artist on the autism

spectrum §

Laser Beak Man. Many of these works interpret pop culture icons or current topics. Others represent Sharp’s literal understanding of language, a common trait of autism. Most of them reflect Sharp’s unique sense of humour and his often irreverent opinion of people and situations. Sharp’s art is in demand from collectors from around the

world. Preferring to exhibit in his home country of Australia, his shows are sellout successes and have attracted the attention of many prominent art collectors from Australia and around the world. The National Museum of Australia in Canberra exhibited Sharp’s story and his art in its Eternity gallery.

46 / 47

8 min. / Narrative 2011 / Germany

Daniel is different. He’s missing something. He only has 46 chromosomes where 47 should be. How does it feel to be “different”? People with Down syndrome stand out because of their physical features. 46/47 dares to show the world “from the other side”. A film about being different, 46 / 47 suggests a desperately needed

change of perspective (whether 46 or 47 chromosomes). The film plays with habitual stereotypes, tries to make “being different” an experience and asks the question “What is normal?” a little differently. §

Sproutflix has an ever-growing list of carefully selected films from around the world specifically related to the lives, performances and accomplishments of people with developmental disabilities.Visit

Everyone has Down syndrome. Those with only 46 chromosomes are considered disabled. People like Daniel. He is always immediately seen but rarely recognized. Everyday situations, like shopping for groceries or riding the bus are torture for him — from the perspective of the so-called “normals.” Apostrophe Summer 2014 63

Remote Monitoring for Behaviorally Intensive Individuals: A Case Study A provider agency for people with developmental disabilities in the Midwest was struggling to find the right support plan that would keep "Jane" safe and help her reach her goals. Jane had bounced around the system with short stays in group homes, her family home and state institutions prior to living with no roommates in her supported living apartment. Supported living was looking like it may not be an option for Jane because providers couldn't keep her safe with the limited support budget she received. Plus, there was frequent staff turnover because of Jane's intense behavioral challenges. The provider always had two staff in her home because of Jane's history of false accusations, self-injurious behaviors and suicide attempts. Jane was combative and unhappy with the constant staff presence. She wanted more independence and to stay in her apartment with no roommates or staff. The solution was telecare, web-based system where caregivers provide support using two-way video and audio communication. After a slow and carefully planned implementation, Jane was able to have alone time without staff physically present in her home but with support from her telegiver. Her customized care plan assured Jane's health and safety needs were met while increasing her independence. The provider gradually reduced staffing levels back to one on one, and a few months ago, Jane began spending overnights alone with support only from her telecaregiver. The provider has reported a reduction in cost of $43,431 per year, and an obvious "decrease in the drama." Please contact us or visit our website for the full list of ways this new service helps support people with disabilities so they can live as independently as possible in their own homes.

Dustin Wright, Executive Director

765-420-1432 Â&#x; 877-338-9193 x 348 (Toll free) 765-430-0053 (cell) Â&#x;

64 64


Creative Magnetic Artists is a project of Residential Support Services day program.

All of their jewelry, including bracelets, anklets, necklaces, and more is hand made by adults with developmental disabilities. Prices start at $7. They have a wonderful selection and will even work with you to create your own custom design. All of Creative Magnetic Artists’ jewelry comes with a lifetime guarantee. Visit the studio at 2110 Overland Ave. Suite 116A, Billings, MT 59102. 406-281-0904.

Creative Magnetic Artists is a service of Residential Support Services in Billings, MT – whose mission is to provide and advocate for the quality and choices of life in a home and community environment for adults with developmental disability, resulting in self advocacy and independence in the least restrictive setting.

Lissie’s Luv Yums Your pooch will be glad!

Help fight Fetal Alcohol Syndrome with each purchase of our Montana-made, all natural gourmet dog treats. Lissie’s Luv Yums uses flour and wheatberries exclusively from Wheat Montana Farms in Three Forks, Montana - NO CHEMICALS ADDED! If it’s not on the label, it’s not in the biscuit! Even you could eat these!

Poochie Snack Pack:

A vacuum-sealed pack of 9 small biscuits. Perfect to carry along on your dog outings. Also makes a great Christmas Stocking stuffer. $4.00 + S.H.

Dog Biscuits Montana Made: Made with wheatberries and flour

from Three Forks, Montana. Choose the 12 oz. pack with all small biscuits or a combination of large and small biscuits for $8.00 + S.H. 12 oz.

Fun to Fix Dog Biscuit Mix:

Lissie’s Luv Yums grinds their own wheatberries and soy beans. Includes recipe and a cutter. $7.50 + S.H. 16 oz.

With These Hands

By Audra Jewelry Designs With These Hands By Audra Jewelry Designs was co-founded in 2009 by Audra T. Nobles, Jewelry Designer, differently-abled self-advocate, and small business owner. She discovered her special talent for jewelry design through the encouragement and support of her mother and co-founder, Lucinda Nobles, and her dad, Duff y Nobles. Audra and her mother design and sell unique, award-winning jewelry using quality semi-precious stones, beads and globally-inspired jewelry elements — each piece reflecting Audra’s vision of beauty. Together they travel, purchasing quality semi-precious beads and stones from trusted jewelry wholesalers in New Mexico, Arizona, Vermont, California, North Carolina, and bead retailers in the Washington-Metropolitan area. Audra wants to continue to expand her business while encouraging other young people to consider researching programs and opportunities that will assist them in starting and growing their own businesses. Learn more about Audra on facebook: With These Hands by Audra

Apostrophe Summer 2014 65


The right services to the right people at the right time

AWARE’s new Center for Excellence supports children with complex emotional and developmental needs.


AWARE Inc. 406.563.8117

Consumer Notice: Scam Alert! Scammers are increasingly posing as utility companies and other “energy savers” to get your money and personal information for fraudulent purposes.

Please remember: NorthWestern Energy will never email a utility bill. We send hard copy bills in the mail. If you’ve arranged to get statements online, you will receive an email notification that your statement is available.

NorthWestern Energy will never call and demand payment via a prepaid debit card. If you are behind on payments, you will receive several written past-due notices in the mail.

NorthWestern Energy will never arrive unannounced on your doorstep offering a free inspection or evaluation of your home. Appointments must be pre-scheduled. In the case of an emergency, our employees and contractors carry and show identification.


888-467-2699 South Dakota/Nebraska


As a general rule, never respond to unexpected email messages from senders you don’t know. If you’re unsure if an email or notice is legitimate, call NorthWestern Energy. For further questions or concerns, call the Federal Trade Commission at 1-877-FTC-HELP.

Summer (April) 2014 Apostrophe magazine.  

The famous quote from Walt Disney, “If you can dream it, you can do it” applies to Tim Harris. Born in 1986 with Down syndrome, Tim has live...