Fall Family Fun! by Candee Candler
Our guess is that when you think of some of the area’s best special events, from rib heaven to a cheer-filled Christmas parade, Victorian Square in Sparks comes to mind. In other words, when Sparks puts on a festival, it really puts on a festival. Within this charming tree-lined neighborhood bursting with restaurants, pubs, and quaint shops is Sparks’ next big family-friendly special event: PumpkinPalooza. And as its name promises, it’s a pumpkin lover’s delight. We’re talking non-electronic-get-off-the-couch-and-interact-with-your-family-and-loveit kind of fun that memories are made of. A real PumpkinPalooza, which Food Network Magazine named as one of the Top 10 Things to Do In the Fall in 2014. If you’ve never joined the thousands of families who have attended PumpkinPalooza, you might be curious as to exactly what this event has to offer. Well the answer is, plenty. PumpkinPalooza gives you perhaps your first opportunity for trying out that hard-sought Halloween costume at the annual Family Costume Parade, led by TV’s Zomboo. Take this as a dress rehearsal for your masks, capes, wigs and ghoulish makeup. Ever heard of a Pumpkin Beauty Pageant? Bring down your most beautifully decorated pumpkin, or create a competitor on-site, and take part to see if your pumpkin has what it takes to take the crown. Or how about a Pumpkin Seed Spitting Contest? While your great aunt may have told you that spitting is ill-mannered, for the sake of competition, we think it’s just fine! Wet that whistle and test your distance spitting skills in this festive, admittedly sort of icky, Pumpkin Seed Spitting Contest. For messy eaters with big appetites, PumpkinPalooza is hosting a traditional Pumpkin Pie Eating Contest. This no-hands, no-holds-barred contest takes place throughout the day, and even little tummies can compete because it’s not just about tonnage of pie filling consumed in this challenge – the judge in this contest is the audience, where the biggest applause recipient takes all. The ambiance of PumpkinPalooza is made complete by live entertainment performed by several local bands at the Great Basin Brewery stage, including the Note-Ables, and Reno Rock Camp, a local summer camp where kids learn how to play music. If you’re more interested in shopping and eating, the 60 vendors and food trucks at PumpkinPalooza are sure to have something you’ll like. Parents will be happy to learn that admission is free, making this an affordable day out, and the event benefits the Northern Nevada Center for Independent Living (NNCIL), which aims to help Northern Nevadans with disabilities live independently. According to Francine Burge, Special Events Manager for the City of Sparks, the City has invested in this event because the planners see the potential of its growth. And growing it is. From just over 1,200 attendees its first year to nearly 10,000 in 2015, PumpkinPalooza is growing, and for a reason. Find out for yourself why PumpkinPalooza is making waves and mark your calendar to have your family attend on Sunday, October 23. You won’t be disappointed, and you just might walk away with a custom pumpkin for your porch.
Independent Living emphasis on living 2016-2017
Insert made possible by
Nevada Governorâ€™s Council on Developmental 1 Disabilities
For more information, please visit
www.nncil.org or call 353-3599
Hortencia is able to stay in her garden longer as she can now clearly hear the sound of her adaptive telephone, so her daughter doesn’t have to worry about her.
It takes a village to build a community by Cindie Geddes
I didn’t know what to expect when I went to Northern Nevada Center for Independent Living (NNCIL) to learn about services for adults with disabilities. I’d just been told it was the place to go first. I was told this by more than one person for more than one reason. By the time I arrived in the parking lot, I expected a massive campus where people in suits (or at least capes and tights) busied about solving problems in a single bound. What I found was a small white building with slightly worn chairs, inspiring handwritten messages on posterboard, boxes of brightly colored bags and prizes, and wheeled pumpkins straight out of fairy tales and Tim Burton movies. I’d arrived in the middle of PumpkinPalooza season. And while there was a decided lack of capes, there was a stoked staff and volunteers working their hardest to bring under one roof all the best the community has to offer. In the world of independent living, the NNCIL is epicenter, matching people with community. Even the office dog seemed pretty jazzed to be there.
To give a little context, according to www.disabled-world.com, a clearinghouse for up-to-date national information on disabilities and the people living with them, more than 8 percent of our neighbors are dealing with a world undoubtedly designed and implemented by and for people without disabilities. Nationwide, people with disabilities make up the largest minority group—and one that any of us could become a part of.
Juan has been doing such a great job for Damon Industries’ Fruitful Juice Products, that he was selected as Employee of the Year. As our population ages and medical advancements help better manage long-term medical conditions, more and more of us will find ourselves with a disability. In fact, while the rate of disability for people from birth to 5 years of age was less than 1 percent (according to 2014 Disability Statistics Annual Report produced by the Rehabilitation Research and Training Center on Disability and Demographics), that number increased with age until it jumped to as much as 36.6 percent for people 65 and older. As Scott Harrington, Ph.D., BCBA-D, a licensed behavior analyst with Sierra Behavioral Solutions, puts it, “I continue to learn each day that disabilities are a natural part of life. As we age, it is just a matter of time before we acquire a disability, whether it is age-related or acquired by an accident or genetics. The fact is, we are all just ‘temporarily-abled.’” While disability may be part of all our lives eventually, people with disabilities are hit particularly hard during their working years. In 2013 (again according to the Disability Statistics Annual Report), employment rates for people ages 18 to 64 with disabilities were as low as 33.9 percent (compared to as much as 83 percent for the rest of the population). Average earning rate for people over the age of 16 with disabilities was only $20,785, about two-thirds that of their counterparts without disabilities. I didn’t know any of this, despite having family members with disabilities. Nor did I learn it directly from NNCIL. Meeting with Lisa Bonie, executive director, we talked about people, not numbers. Bonie told me about how living independently allows individuals to have jobs, pay taxes and contribute to society. The numbers back her up. Nevada is on the high end of median pay for people with disabilities, at $22,283 to $30,208 in 2013 (despite our being on the low end of pay for those without disabilities at $27,705 to $30,337). Conversely, we are on the low end for the percentage of people with disabilities living in poverty, though that number is still startling at 16.7 to 24.6 percent. The range for people without disability is 12.9 to 15.1 percent, showing our community is doing a good job at not leaving people with disabilities out in the cold (literally and metaphorically). Maybe the reason NNCIL is so good at matching people’s problems with solutions is that 51 percent of the staff, as well as 51 percent of the board are people with disabilities. Bonie and her staff work with people where they are. They see a problem, and they can make a sustainable solution, be it in the form of programs or partnerships or simple connection. She says, “People will come in and say, ‘I only need a cane,’ or ‘I only need a walker,’ and we sit down with them and go over their options because they probably need other things they don’t even know about. Often, our home visits take us from ‘I’m doing OK,’ to ‘I had no idea that solution was out there.’” Bonie’s central tenant is that there is always a way to help someone solve their challenges.
Whole person, whole life by Cindie Geddes
Northern Nevada has a variety of services available to people with disabilities. The Nevada Governor’s Council on Developmental Disabilities advocates and works at system changes and building activities for people with disabilities throughout the state. The Nevada Department of Employment Training and Rehabilitation offers services in vocational rehabilitation. Path to Independence offers college classes on campus to students with intellectual and developmental disabilities. Care Chest of Sierra Nevada provides critical healthcare resources for Nevadans in need. Note-Able Music Therapy Services brings people of all abilities together through music. N4 (Neighbor Network of Northern Nevada) connects people through time exchanges, social activities and volunteer work. NNCIL brings all these groups (and more) together in service of people with any type of disability. “We connect people with services,” says Executive Director Lisa Bonie. “Someone comes in and talks to us, and, say, they have a housing issue. We can assess what other issues might also come up and tell them all that is available to them, be that state agencies or private organizations. This is the first stop they make on the journey to independence.” An important part of that journey is listening to people so they can achieve the level of independence they want. Not what anyone else wants or thinks they need. Bonie says, “Sadly, there is a certain segment of the population where their desires and goals aren’t valued in the decision-making process.” But she and her staff are trying to change that. “We like to start with really basic self-advocacy. Sometimes, that just means sitting with them while they make phone calls. Just knowing there is someone there who can prompt you if you lose your train of thought, etc. When you own the process, you own the outcomes more.” Independent Living is one of the three legs to the stool, according to Scott Harrington, Ph.D., BCBA-D, a licensed behavior analyst. The two others are integrated employment (i.e., earning at least minimum wage) and inclusive social/recreational activities. People with disabilities need to be living, working and playing in our community. Harrington points out what should be obvious: “Persons with disabilities want what everyone else wants: to be included, loved, and engaged in something meaningful, whether it is volunteerism, work, or participating in the community.” Dora Ulchel, 40, works two-part time jobs: As a student worker at the Nevada Assistive Technology Resource Center (NATRC), and as an assistive technology trainer for Perkins School for the Blind. She will graduate in May 2017 with a Bachelor of Social Work degree and will then pursue a master’s degree. “It’s important to everyone to have a sense of belonging. We as humans are supposedly the smart mammal so let’s do the smart thing and care for each other,” she says. “I am a native Palauan. Growing up in a developing country, no one knew anything about Braille or screen readers, so I relied heavily on family members to read to me. My challenges have become part of my daily life and they have taught me to fight for what is right and to create a better life for everyone regardless of ability.” Kelleen Preston, rehabilitation supervisor at DETR, who has a physical disability herself, shares, “This is probably the hardest part of living with a disability – people’s perception and the issues they face. I do believe the misunderstandings are getting better as people with disabilities are in included in the community – the community sees the disabled community as they see themselves – striving for the same quality of life as anyone else. 4 The more inclusion, the more the biases are defunct.”
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It starts with self-esteem by Cindie Geddes
Long gone are the days when disability meant institutionalization, or different meant inferior. Today, most of us recognize that, as Kelleen Preston, rehabilitation supervisor at DETR, says, “Quality of life should absolutely be accessible to all and living independently allows for individuals to live with the basic civil rights that should be afforded to everyone.” But if you need reasons beyond basic human dignity: 1. Independent living saves money. State and federal funding is freed up for other uses as we all come together to support our neighbors. 2. Not only can people with disabilities contribute to the communities in which they live, they want to. 3. Diversity matters. The more people of different abilities come together, the better to practice empathy. It starts with self-esteem. In order to do something, most of us at least need an inkling that we are capable. And selfesteem can come from just about anywhere. Be it something as seemingly simple as music therapy or as complex as public speaking. Jodi McLaren, Music Therapist and Program Coordinator at Note-Able Music Therapy Services has seen that anyone who responds to music through listening, playing, dancing or singing is capable of benefiting from music therapy. She has watched people’s lives open up as they find a safe place to express themselves and explore their capabilities. Russell Lehmann speaking at the National AssociRussell Lehmann, an autistic poet has gone from barely functioning to working three jobs—all of which give back to ation of Councils on Developmental Disabilities in the community. He says, “Individuals with disabilities, particularly young individuals, oftentimes have low self-esteem. Washington D.C. I used to not have much confidence in myself at all. Now, however, I have all the confidence in the world and truly believe I can accomplish anything I set my mind to, and that I am unstoppable. How did I get here? My support system. My family’s love and support. The acceptance and accommodations I received when I attended a school for kids with special needs. These people believed in me, and I very soon came to believe in myself.”
A beautiful harmony: music & autism Story and photo by Nate Eng
Michael Lahnala is like many 25-year-olds: he looks forward to graduating from college, has a full-time job, is passionate for politics, loves music and the Internet. By many standards, Lahnala is a successful and productive member of society. However, when he was 2 years old, he was diagnosed with a disability that carried the stigma he would never become a functioning adult. He was diagnosed with autism. Lahnala grew up in a world where he was “oblivious to everybody,” says his mother, Beth Varney. He describes his own personality at a young age as an “absence” of one. He met kids in his middle school music class where he was first chair saxophonist, but he never actually hung out with any of them. The one constant in Lahnala’s life was music. One of the biggest positive changing points in his life happened when he was 17. That’s when he joined Note-Able Music Therapy Services, where he volunteered teaching saxophone lessons and participating in the Exploring Music classes. Now eight years later he plays bass and sings in the Note-Ables band. He cannot pinpoint specifically how, but he told his mother once, “I feel like I don’t have a disability there.” Through music, Lahnala has become self-actualized. He has found so much of himself that he was never aware existed his own independence, sense of humor, belonging, confidence, expression, happiness, and so much more. What the NoteAbles have done for Lahnala – and for the more than 100 children and adults per week the non-profit sees – is given him an opportunity to tap into his own identity and express himself through music. Michael is now living on his own and is graduating from college this spring with an associate degree in applied science with emphasis in networking. “I am very proud of him, always have been,” says Varney as she turns to look him in the eye. “What I see in you is someone who never spoke, never offered an opinion, never spoke up to defend himself, and all of a sudden you’re doing all of that.” 5
Raising the bar by Jackie Shelton
As part of NNCIL’s mission, the organization collaborates with the Department of Employment, Training & Rehabilitation (DETR) to provide assistance to job seekers with disabilities who need additional services to become qualified for employment. As Lead Job Developer, Kristen Darnielle is responsible for helping people with disabilities find work in fulfilling jobs that match up with their talents and contributions. She shares the story of Kaycee Respecio, who suffered brain damage at the age of 22. Though she faces many challenges, she was anxious to get back to work. “Her vocational goal is art, she wants to be surrounded by creativity,” Darnielle explains. “We talked to Matt Polley, the owner of The Jungle and he was very receptive to talking to her about a job, even though he was in the middle of a huge remodel.” Early last year, Respecio went to work for The Jungle as a barista assistant, making $8.25 an hour. Polley says she’s one of the best employees he’s ever had. “Kaycee has been an excellent employee, she takes great direction and she fits in very well with the rest of my crew,” he says. “She’s one of the best employees I have. She definitely raises the bar.” “The Jungle is in the heart of Artown, giving her access to a good job surrounded by creativity,” Darnielle says. “She’s looking forward to displaying some of her own artwork there at some point.” Respecio’s is only one success story, but NNCIL has plenty of others and they’re working on more. “It does take a lot of effort, but it’s so worth it when we make these matches,” Darnielle says. “Our clients are happier doing work they enjoy and the businesses are getting employees who are truly happy to be there.” Polley says he was hesitant to get involved with the program because he had a lot going on, including a major remodel and a new baby. “The program has actually been really easy to work with,” he says. “Kristen was really on top of it. She made a great match for us.” NNCIL has potential employees, but they’re looking for more employers who are interested in partnering on job development. If you’re interested in learning more, contact Darnielle at (775) 353-3599 or Kristen@nncil.org.
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The Jungle owner Matt Polley says Kaycee is one of the best employees he’s ever had. He is now working with other employers, encouraging them to 6 participate in the program.
Etiquette, communication and being human by Cindie Geddes
It’s not unusual for people to have a hard time knowing what to say or what to do with someone they feel is different than them. But those differences often come down to perception. Here are just some of the ways we can bridge the gap between those without disabilities and those with them. Spoiler, it mostly comes down to the Golden Rule: treat others as you would have others treat you. 1. Assumptions are a big no-no. Just as no one knows better than you what you can and cannot do, it’s the same for people with disabilities. 2. Just ask. Not sure if someone needs help? Not sure how to term someone’s disability? Ask. 3. Don’t treat people as if they are invisible. Don’t address comments or questions to nearby companions (or, worse, strangers). 4. Don’t wrap yourself around the axles of terminology. People-first terminology (“person with a disability” versus “disabled” or—yikes—“crippled”) is a good default, but don’t get bent out of shaped if an individual prefers something different. (See #1). 5. Personal space is personal space. Don’t grab a wheelchair without the owner’s permission or reach down to pet a service animal (consider the animal an extension of personal space) or take someone’s arm to help him or her cross the street. Don’t touch people or their things without permission. (See #2). 6. Don’t assume that if you can’t see a disability it isn’t there. Mobility needs, mental illness, breathing limitations, hearing impairment, limited use of upper extremities—all of these may be invisible to you. That doesn’t mean they aren’t there. 7. Empathy is your friend. Think about which directions work if you can’t see, what verbal cues you might need if you couldn’t hear, whether or not you would want to be grilled every time you use a “handicapped” spot. Communication is always a two-way street. Russell Lehmann, an autistic poet who prefers the term “autistic” over “person with autism” (See #2), sums it up nicely: “Both sides of this issue are still trying to understand each other, and as long as we all continue to try to understand, that’s really all we can ask of one another.” NNCIL partners with RTC to provide transportation training to its clients, like Sierra, allowing her the freedom to move about the city.
Path to Indepedence • Our free programs provide:
• • •
Medical Equipment & Supplies Diabetic Supplies Independent Living
• • •
Prescription Assistance Medical Nutrition Wellness Education
www.carechest.org | 775-829-CARE (2273)
UNR college experience for students with intellectual/developmental disabilities Comprehensive Transition Program (CTP) with Academic, Social, Employment and Independent Living skills
UNR Center for Excellence in Disabilities 775.682.9057 | pathtoindependencenv.com
Serving people of all ages and abilities with: • • •
Music therapy Adaptive music classes and lessons Contract services note-ables.org | 775-324-5521
The Council engages in advocacy, system’s change and capacity building activities for people with developmental disabilities and their families in order to promote equal opportunity, self-determination, and community inclusion. Please visit our website for more information on how we can help: www.nevadaddcouncil.org
Please scan or visit www.nevadaddcouncil.org/2016/06/02/ watch-our-video to watch: Let’s Build a World for Us All!
MAKING A GENUINE DIFFERENCE THE BEST MEDICINE We’re proud to support the Northern Nevada Center for Independent Living and everything they do to help those with disabilities in our community live healthy, active, fulfilling lives.
Pumpkins on Wheels by Candee Candler
You’re probably dying to know what the Pumpkin Derby is all about, and we can’t blame you. It sounds pretty awesome – because it is. This whimsical activity takes pumpkins and pairs them with your creativity to allow you to transform a typical gourd into the Ferrari of Victorian Square as it toboggans down a uniquely-crafted racetrack created by ProtoFab specifically for pumpkin racers. Channel your inner Dale Gordon as you pilot your pumpkin across the finish line to the cheers of family, friends and standers-by. Entrants of the Pumpkin Derby pay $10 to compete in the Open Championship for the ultimate prize: the Grand Championship Trophy, and major bragging rights. Participants can enter as an individual or team, creating the opportunity for friendly family feuds and allowing your crew to pull together for this epic race. A helpful tip: pick an innovative theme for your pumpkin racer - wacky is good and creativity counts. Participants may build their racers either in advance or at PumpkinPalooza the day of the event with the plethora of pumpkin-decorating supplies available (be sure to begin construction before noon). Pumpkin Racer kits are available for $15 – including the pumpkin – and you get your $15 back if you return the wheels and axles, leaving you with arguably the world’s coolest pumpkin to keep, designed by your family. Talk about adding some porch pride this October! Outside of taking a solemn oath to make the race fun, there are a few simple rules that participants will want to follow. They aren’t difficult, and visiting the PumpkinPalooza website (pumpkinpalooza.org) to read the complete rules, including the bit about excluding explosives as part of your racer, brings some interesting imagery to mind. Leave the TNT at home, and bring out your imagination for this fun, competitive event.
Schedule of Events Subject to change.
10:30: Race Registration Opens 10:30: Pumpkin Patch Garage and Custom Shop Open 10:30-12:00: Test & Tune NOON: ALL RACERS MUST BE REGISTERED 12:00-1:00: Racing Heats 1:00-1:20: Racing stops for Family Costume Parade 1:20-3:00: Racing Heats 3:00: Championship Races 3:30: Derby Trophy Presentations
12-12:40: Note-Ables 12:40-1:00: Reed Varsity Cheer - “Time Warp” 1:00-1:40: Reno Rock Camp/We Rock 1:40-2:00: Art in Motion 2:00-2:40: Rebekah Chase Band 2:40-3:00: Reed Varsity Cheer - “Thriller” 3:00-3:40: Reno Rock Camp/We Rock 3:40-4:00: Art in Motion 4:00-4:40/5:00: Revival Special thanks to: Kat Wilson, Entertainment Coordinator Great Basin Brewery, Stage Mark Simon, Sound System Nelsound Audio, Backline Amps Len Campanaro, Drums
10:30: Contest Sign-Ups Begin 11:00: Pumpkin Seed-Spitting Contest 11:15: Team Mummy-Wrapping (3 person teams) 11:30: Pumpkin Pie-Eating Contest 11:45: Huff and Puff Cup Race 12:00: Pumpkin Seed-Spitting Contest 12:15: Team Mummy-Wrapping (3 person teams) 12:30: Pumpkin Pie-Eating Contest 12:45: Huff and Puff Cup Race 1:00: Seed-Spitting Contest 1:15: Contest Sign-Ups 2:00: Pumpkin Seed-Spitting Contest 2:15: Team Mummy-Wrapping (3 person teams) 2:30: Pumpkin Pie-Eating Contest 2:45: Huff and Puff Cup Race 3:00: Seed-Spitting Contest 3:15: Team Mummy-Wrapping (3 person teams) 3:30: Pumpkin Pie-Eating Contest 3:45: Huff and Puff Cup Race 4:00: Pumpkin Seed-Spitting Contest 4:15: Team Mummy-Wrapping (3 person teams) 4:30: Pumpkin Pie-Eating Contest 4:45: Huff and Puff Cup Race
This event does not happen without the amazing support of our sponsors. Please join us in thanking them.