Winter 2014 Newsletter
During the past quarter, we have celebrated some new and exciting developments at the DLC. From acquiring new funds to grow and develop the states first Fair Housing Testing program to hosting the Community Justice Awards Gala in downtown Salt Lake City, this quarter has been a great one for us. Give our newsletter a read and let us know what you think!
In this issue:
- Sam’s Story
- The Object of Giving
- Ask the Advocate – Questions about Vocational Rehabilitation
- The Secret Shoppers of Fair Housing
- The Best January Has to Offer
- Book Review – “Crash Reel”
Moving On – Sam’s life after the institution
You should know about Sam. He’s a fan of cartoons and birds. He doesn’t speak much. His life has been a constant struggle to make himself understood. It was our good fortune to meet him, and we’d like to introduce you.
In Sam’s eighteenth year as a resident of the Utah State Development Center, he met a woman named Camille. She’s one of our advocates here at the DLC, and her job involves regular visits to monitor conditions in institutional settings. She was at the Woodland building when she ran across Sam.
She knew immediately that he didn’t need to be in such a high-intensity facility. “I knew that he was capable of living in the community, instead of being in a locked unit like a criminal,” she says. She talked to the USDC staff, but they all seemed to think that Sam was “too dangerous” to live in a community setting.
Undeterred, Camille and her team worked with Sam’s parents to fix the situation; the man had spent nearly twenty years in a locked ward. He hadn’t been allowed to leave the property for years. “To think that he had not even left the institution for several years because staff believed him to be ‘too dangerous’ to be out in the community, or even to get into a car – yet to see him now, eating out, enjoying a movie at a theater, going to the store, cooking his own meals – it’s amazing,” says Camille. But things like this don’t happen in a vacuum; it took a lot of effort and heartache to get through all of the red tape and secure Sam’s transfer to a group home.
Sam didn’t own much after twenty years in a facility. “Since he didn’t have hardly anything but clothes, and not much money, I spent the weekend shopping for bedding, towels, and food,” said his mother in a letter to the DLC not long after Sam moved. She also noted the dramatic changes in Sam’s life. “He has been very happy, going for walks, helping with yard work, going shopping, and enjoying just being there. The staff are great and are doing everything to make him comfortable.”
This change, this massive shift in circumstances, has an impact on more lives than just Sam’s. If you are in charge of the care of a family member, you are also the person that visits them, that worries about their happiness, that has to deal with the knowledge that strangers are caring for your loved one. Sam’s mother has found that the group home is a better situation in a lot of ways. “It’s so nice that it’s just a five minute drive to go see him,” she says.
The changes aren’t all so dramatic. Some of them are very simple, a matter of whether Sam lives in a place he can call home, or whether he lives in a place called a facility. “The home is very cozy,” says Sam’s mom. “It breaks my heart to realize that he had nothing but a bed and a broken dresser in his room at Woodland.”
It is clear a person’s surroundings have a big impact on their overall well-being. That includes the overall feel of a place, but also the amount of care that is taken with someone’s living space. When Sam moved out of his room at Woodland, they found feces under his bed.
Sam’s life today doesn’t look anything like it did a few months ago. His provider says he’s doing well. He’s been bowling, fed ducks at the park, hung out at the mall, and has a special love for the birds at Tracy Aviary. He’s discovered that he loves animated movies.
A recent e-mail from the staff that assist him now is full of glowing praise for his abilities and willingness to help. “He is showing awesome progress on talking with staff more and is answering more questions than he used to. He’s really opening up and making more decisions.”
People so often take for granted that we get to choose everything about our lives, from what to wear in the morning to what we’ll eat for dinner. Sam gets that chance now too, and he’s flourishing. “This is his house, and we want him to make as many choices here as possible,” says the staff at Sam’s new place.
“He is doing so well with helping staff do his laundry and keeping his room clean, as well as helping out around the house. He helps with shoveling snow and sweeping the kitchen. He loves to help cook and prepare his meals,” says the progress report. “He is doing better about learning his colors, likes to play games with staff, and is still going on daily walks.” Sam can almost write his name now, after six weeks in community living. He couldn’t do that after nearly twenty years in an institution.
Why the dramatic shift? “We have changed his schedule a bit,” says the staff at the home. Now Sam eats an early evening snack and a later dinner. At Woodlawn, dinner was at six, followed swiftly by bed. “Here, we want to show him that we enjoy his company, that he doesn’t need to be in bed for the majority of the day or feel that he needs to go to bed early…With this change of schedule, he is not waking up at five in the morning anymore, and wanting to go back to bed at 9AM.”
Sam’s new life seems to be entirely different than his old one. Now, after dinner, he’ll sometimes stay up watching cartoons with his roommates. He likes it when people read bedtime stories, and he’s made it through Huckleberry Finn and most of the staff’s Goosebumps collection. He wakes up in the mornings feeling more refreshed than he’s used to, with a whole day ahead of him. His days, now, are made up of interesting trips and things he can do to help. Anyone would pick this life over the daily monotony of life in an institution.
“I think that Sam’s success so far living in the community is proof that everyone, regardless of behaviors, aggression, reputation of being dangerous, etc., deserves to live in the least restrictive environment possible. Everyone can be successful given the right supports,” says Camille. “Because Sam has limited verbal communication, I believe he was trying to alert staff through aggression that he wanted to move. He wanted out of the institution.”
Sam’s story isn’t unique. It’s special, in the way that everyone’s stories are their own, but Sam is one of the lucky ones that got out. “[Seeing how well Sam is doing] makes me sad for the others who are still institutionalized and don’t have those same opportunities,” says Camille. “I would like to see Woodland bulldozed to the ground,” said Sam’s mother, speaking of the facility in which her son spent nearly twenty years. “Nobody should have to live like that.”
We have more work to do. We have more people to help, more resources to secure, more chances to make things a bit more right in the world. But sometimes, we get a small victory. We really love that. The DLC exists to give stories like this a happier ending. “I will never forget this,” says Sam’s mom. We would like to get it on record that we won’t either.
The Object of Giving
There is a nearly endless list of organizations that have more resources than the DLC does: the federal government, the Disney corporation, the local mall. So when we decide how to allocate our resources, we think it through. We have a lot of work to do, and we have to sort out how best to get it done. One of our favorite projects is the annual Community Justice Awards Gala.
The Gala is held to honor people that have made a positive impact for people with disabilities across Utah. In 2013, there were some remarkable projects coming out of Utah’s design and architecture professions. So we set the tone accordingly, establishing a theme of “innovation in accessibility.”
Our Innovation in Design Award went to Sean Thompson, Senior partner at VCBO Architecture
Sean designed the new University of Utah Law building to provide complete accessibility for individuals with disabilities
Our Innovation in Construction Award went to Lagoon Park. Lagoon Park continues its efforts to make the Park free of barriers and to continue to work to make the park more accessible for all guests. All of the rides provide wheelchair access. They have created this plan and design for accessibility through a cooperative effort involving a panel of park guests with disabilities
Our Innovation in Architecture Award went to Harold Woodruff who is an Architect from Salt Lake City and has dedicated his skills in designing innovative housing for people with disabilities and those who are low-income or homeless for over 25 years.
Our Community Leader Award went to Mayor Bruce Keeler and City Councilperson Karen Nelson of Castle Valley, UT. Despite some pushback from some of the town’s 317 residents, they ensured that the town invest in a building where every citizen could enter and participate in the variety of services provided there.
Finally, our Lifetime Accomplishment Award went to Roger Borgenicht, Executive Director of ASSIST, Inc. For the past 44 years, ASSIST Inc. has provided architectural design, community planning and development assistance to nonprofit and community groups, and housing repair and accessibility design assistance to low income households and to persons with disabilities.
Of course, there’s no way we could ever pull this off by ourselves, and we were overwhelmed this year with support! The individuals and organizations who sponsored the event deserve special recognition: Robert W Baird & Co., Harris & Amanda Simmons, DocuMart, Epic Brewing, and the Brock & Papulak Families.
Our keynote speaker for the gala, Stephen Goldsmith, Associate Professor at the U of U gave an inspiring speech about the “hinge”, whether real of metaphorical, and how we all play a part in the “hinges” construction. Stephen says he is inspired by empathy and a love for the places and people he works with which was evident in the words he spoke at the gala.
Our table sponsors were Leslie Francis & Jane Conor, Parsons Behle & Latimer, Assist Incorporated.
Then we have all of the staff, friends, clients, and local businesses who all donated to the auction to make the event a success: Cafe Shambala, Chris Serrano & Eileen Maloney, Adventure Park Moab, Park City Mountain Resort, The Natural History Museum of Utah at the Rio Tinto Center Patagonia Outlet, Jan Brock, Deer Valley Resort, Boondocks, Jackie Rendo, Beth Ellen Holimon, National Ability Center in Park City, Paul Newman, Caputto’s Market & Deli, Stampin’ Up!, Prana Yoga, Red Butte Garden, King’s English, Lagoon Park, Famous Dave’s (Evelyn), Rio Grande Cafe, Leslie Thomas, Mark Knudsen, Galina Perova, Mark Knuden, Marcie Hanson Collett, Leslie Thomas, Rosalie Winard, Galina Perova, National Ability Center, Right to the Core Studio, Trent Alvey, Chris Noble, Sara Sabiston, Faustina, Liliana Matasa, Matteo, Avenues Bistro on 3rd, Alta Club, Kelly Holt, Healing Mountain Massage School, Utah Chocolate Sensations, Utah Symphony & Opera.
That’s a lot of names, right? And those are just the listed donors! We would also like to thank anyone who had any part in helping make our Gala one of the best we’ve ever put on, down to the babysitters who stayed home with the kids so that all the adults could dance the candlelit night away.
But all that romance and revelry served a greater purpose: helping fund the DLC. We’ll use the money we raised from the 2013 Gala to fund the important work of the DLC this year.
We spent the year making sure that people can get places and do things. The work is vital, and we’re happy to do it. But every now and again, we really do enjoy putting on our dancing shoes and throwing a gala. We’d like to thank everyone who danced and everyone who’s more of a wallflower type. We’d like to thank everyone who helped with the flowers and the food and all of the other details that go into creating a gala.
Most of all, we’d like to thank everyone who gave. We really could not do this work without your help.
Help Wanted – Fair Housing Testers
Federal and state housing laws prohibit discriminatory practices in any business or transaction related to the housing industry. The DLC is charged with investigating certain types of housing discrimination complaints in Utah, and we need help. We’ve established a Fair Housing Testing Program, and we’re looking for people to serve as testers.
Sometimes, housing discrimination is blatant. More often, it’s subtle and hard to prove. Testing uncovers that quiet sort of discrimination, and it’s one of the most important tools that agencies, advocates, and others interested in fair housing have access to.
The fair housing tester is our way of following up on complaints. We create testing situations to uncover violations of the fair housing laws. We simulate housing transactions by having testers call or visit apartments. Based on their written reports, we can determine whether discrimination has occurred.
Testers will receive paid training, after which they’ll receive a stipend for each test they complete.
What we’re looking for:
- People who like to role play
- People of varied backgrounds and ages
- People belonging to a protected class (this includes race, color, national origin, religion, sex, familial status, and disability)
- People who can be reached by cell phone
- People who can travel to a variety of locations in the valley, whether in a car or by public transport
- People with varied availability or flexible schedules
If you’d like to help us make a difference, or you’re looking for your next worthy cause, fill out an application online at: http://disabilitylawcenter.org/job-posting-fair-housing-testers/
The Best Part of January
We know that everyone in Utah loves January because of skiing and Sundance. And those are awesome, but what’s really exciting is the 2014 legislative session! Seriously, come along with us on this one for a minute. We’ll prove it.
It’s actually looking like we might have some sort of Medicaid expansion! There’s a lot of new funding available this year, in fact. See? Exciting!
Of course, that money also goes to education. And the governor’s budget isn’t exactly heavy on health and human services priorities, many of which are crucial. Which is where you guys come in – we know that a lot of legislators are going to be focused on big-ticket stuff like Medicaid and marriage equality. But it’s going to be up to you to remind them that they can’t afford to forget about the day-to-day needs of Utahns with disabilities.
As we decide how to spend our money, it’s worth keeping in mind that how you spend your money says a lot about who you are. And it’s up to us to make sure that this year’s funding reflects the priorities of average Utahns.
So how can you tell people what matters to you? Easy. Call your senator and representative, now, today, and tell them which programs matter to you and why. Tell them about programs like
Children with Special Health Care Needs
Division of Services for People with Disabilities
Division of Substance Abuse and Mental Health
Department of Corrections
Community Mental Health Centers
We know that politicians listen when a lot of people get together and say the same thing. That’s why we’re supporting the Utah Developmental Disabilities Council (UDDC) in their efforts to recruit and train a group of individuals with disabilities, along with their families. Those folks will talk with their legislators, testify before committees, meet with the media, and fight for the funding that people statewide depend on every day.
If you can help, or if you’re just interested in learning more, contact Troy Justesen at the UDDC (801-656-8680 or email@example.com) or Andrew Riggle, Public Policy Advocate for the DLC (800-662-9080 or firstname.lastname@example.org)
CRASH REEL – Movie Review
An Advocate, On Snowboarding. Sort Of.
Snowboarding and advocacy? Really? Yeah, that’s a fair reaction.
I’m a backcountry skier, and I’ve spent many winters trying to avoid snowboarders. We’re both in a never ending pursuitof ‘The Greatest Snow on Earth’, which happens to be found right here in the Wasatch Mountains.
My quest, victorious though it often was, came at the cost of a life changing accident. I triggered an avalanche, which I was then trapped in, I landed in the hospital, and then did a fairly long stint in a rehab facility.
Drawn from my love of skiing and my injury, I found myself drawn to the documentary film Crash Reel. Not only does the story unfold right here in our own backyard, it also covers a wide range of issues that interested me. It’s about the risks associated with extreme sports, health insurance generally and the long process of rehabilitation. It tells the story of Kevin Pearce, a world-class snowboarder. Undeterred by traumatic brain injury, Kevin was determined to get right back in there and continue competing in the very sport that almost killed him.
In this film, Lucy Walker has filmed a refreshingly honest exploration of the traumatic brain injury experience. She does an outstanding job documenting the mishaps that come with extreme winter sports, without going over the top (although there are definitely some cringeworthy moments).
The film is compelling, intertwining an intimate portrait of a family dealing with the emotional upheaval that comes with the healing process with action-packed footage of the athletes themselves.
Whether or not you’re an extreme sports fan, you’ll find something to interest you in this movie. It’s packed with insights into the experience of traumatic brain injury and more than that, it’s a compelling look at the reality of sports played nationwide.