Sue Ellen's Story: It's Never Too Late

July 31st, 2013

Nearly all of Sue Ellen?s 67 years have been spent in institutions, the last 28 in a nursing home. Although that lifestyle was all she had known, those around her believe she also knew that life had more to offer. Last year, at the age of 66, she found out just what that was when she moved into a community setting for the first time.

?I like my room and my TV,? says Sue Ellen, a game show enthusiast.

Sue Ellen?s speech is limited and can be difficult to decipher, but she communicates well in other ways. The smile on her face as she explores her new independence speaks volumes.

?She laughs a lot. She likes to be happy,? shares Elena Riggs, a Valley Residential Services program manager. ?She wants to enjoy everything and not miss out on anything. She is happy living the life...?

Sue Ellen and three roommates live in a Walla Walla home owned by Blue Mountain Action Council and supported by Valley Residential Services. She has her own room and a full social calendar. She goes to movies, plays, outings to the farmers market and special community events, monthly cooking classes and weekly coffee hours.

She also visits a couple of local bowling alleys twice a week ? once to socialize and once to try her luck on the lanes. Leaning forward in her wheelchair, she lets go of the ball, allowing it to roll down a ramp. A smile lights up her face, and she claps her hands and pumps her fist in the air as the pins topple.

Even simple, everyday moments seem to be exciting for Sue Ellen. Her staff helps her get situated on the wheelchair lift of the agency?s van idling outside the bowling alley. She throws her head back, squeezes her eyes shut and grins as if the lift is a carnival ride.

In addition to her social schedule, Sue Ellen is active at the local St. Vincent de Paul store, where she has been volunteering for almost 20 years. She spends four hours a week straightening and stacking used plastic bags to be re-used in the store.

In the backroom of the store, she weaves her wheelchair through piles of the most recent donations. And, one after another, store employees call out, ?Hi, Susie!?

Jeanette Delaney, a Lillie Rice Center job coach, says Sue Ellen loves to interact with the St. Vincent employees, always saying hello as she starts her shift and goodbye as she clocks out.

?It has made a difference in her life because of the social aspect of it,? Jeanette says. ?And she likes to be helpful to the community.?

Last October, Sue Ellen traveled outside her community for a vacation that she can?t stop talking about. She and a group of other Valley Residential Services clients and staff went to Long Beach, Washington. Sue Ellen watched wildlife, looked for lighthouses and let the waves of cold saltwater wash over her feet. It was her first time seeing the ocean, and it was love at first sight.

This year, she vacationed in Seattle. Her itinerary included stops at the Seattle Aquarium and Woodland Park Zoo, and her hotel room had a waterfront view, much to her delight.

Experiences like these were a long time coming. Cerebral palsy and a list of other health concerns had limited Sue Ellen to residency in boarding homes, nursing homes and hospitals. But even in those circumstances, her adventurous personality and willingness to try new things shone through to people who know her, including case managers Sara Smart and Kristina Rasmussen.

?When a person?s needs are being met and they are relatively happy and content where they?re at, we don?t try to move them,? Kristina says. ?Sue Ellen had never said she wanted to leave or that she didn?t like it at the nursing home, but she was always looking for something more. If something came along that would give her a better quality of life, she would be open to that.?

As it turns out, the Roads to Community Living program came along. With funding coming down the pipeline, the case managers spoke with the nursing home social worker about who might want to move into the community. Sue Ellen came to mind.

?As soon as we had an opportunity to help her move, Sue Ellen had enough courage to try it,? Kristina says. ?Not very many people do that at her age.?

However, with the number of years Sue Ellen had spent in institutions, there were concerns about how well she would handle the move. She had grown accustomed to living with a large number of people in a place where the lights were always on, Kristina says.

?In her case, Sue Ellen could explain clearly enough that she would be okay moving into a small house and with it being dark at night, and I believed her,? Kristina says.

Not only was she okay, the move into the community sparked a ?tremendous transformation? in her, according to Margaret Ogilvie, owner of The Place. Margaret helps adults with developmental disabilities with community access and employment, and has known Sue Ellen for more than a decade. She says Sue Ellen had ?always looked sad? in the nursing home, but the opportunity to have her own room, 24-hour staff and an expansive menu of activities perked her up.

?It changed her whole outlook on life,? Margaret reports, adding that it has been exciting to see the changes in Sue Ellen. ?She is upbeat and more verbal?.She is a whole new person.?

Elena agrees, ?It?s like the sun has come up in her life.?

As the sun rises on each new day, Sue Ellen works toward the goal of making the most of her new freedom and experiencing as much as possible in life, with a return trip to the beach at the top of her wish list.

July 2013 Newsletter

July 31st, 2013

Nearly all of Sue Ellen?s 67 years have been spent in institutions, the last 28 in a nursing home. Although that lifestyle was all she had known, those around her believe she also knew that life had more to offer. Last year, at the age of 66, she found out just what that was when she moved into a community setting for the first time.

In this issue of the Community Inclusion Newsletter you will meet Sue Ellen, whose move last year into a community setting proves that it is never too late to make life changes that increase inclusion.

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Meet Denise Keller

June 30th, 2013

Denise KellerWriter Denise Keller is excited to be a contributor to the Community Inclusion Newsletter. Denise has had the pleasure of meeting new people and telling their stories for the last 14 years. After graduating from Central Washington University in 1999 with a degree in broadcast journalism, Denise worked as a television news reporter, covering agriculture, women's issues and breaking news.

After several years in TV, Denise began transitioning to print media, taking a job as the communication specialist for an insurance marketing company. For the last decade, she has been writing for various magazines, newspapers and businesses. She writes about everything from the bridal business to potato farming.

Denise and her husband keep busy with their two young daughters. Denise enjoys spending time with family, scrapbooking, traveling, baking and bargain hunting.

May 2013 Newsletter

July 1st, 2013

Bob?s story is one of great heartache and great celebration. Through it all, he has persevered and prospered. He struggles through setbacks and never quits - he is just too stubborn to give up! Bob has Downs Syndrome and several other significant medical issues, but that doesn?t stop him from being an ornery, cantankerous, and very joyous man.

Hot Tips for Community Inclusion

Calling All Writers!!! Have something to say? We?re looking for more people to contribute to the Community Inclusion Newsletter! We would very much love to hear from people with developmental disabilities about their experiences living in their communities. What is the best thing about your community? What are your favorite ways of being involved? What were the barriers you faced - or still do face - in pursuing your goals?

Community Inclusion Award: The Community Inclusion Award was created to honor caregivers, family members, teachers and community members who have excelled at promoting inclusion for people with disabilities. The concept of the award is one of the recommendations that grew out of the 2011 Community In- clusion Conferences as a means to continue the learning and innovative ideas generated at the conference.

Download the newsletter to read more!

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Bob?s Story: Dancing Through Life

July 1st, 2013
Bob?s Story: Dancing Through Life

Bob?s story is one of great heartache and great celebration. Through it all, he has persevered and prospered. He has struggled through setback after setback and never quits - he is just too stubborn to give up! Bob has Downs Syndrome and several other significant medical issues, but that doesn?t stop him from being an ornery, cantankerous, and very joyous man. For instance, Bob does not like to leave community events until he has experienced every second of enjoyment he can. He once stayed for several hours after a ball game until the fireworks celebration had ended and the crowd had dispersed. He simply does not want to miss out on anything- Bob wants to live life to the fullest!

I met Bob and Marion at Pacific Lanes bowling alley in Tacoma WA, where he bowls weekly with a large group of people, most of whom are persons with disabilities. Marion has worked with Bob for about 5 years. This was one of the first times Bob had been bowling since he had been released from the hospital due to pneumonia in late February - a recurring issue, caused by swallowing problems. ?He just keeps bouncing back [after hospital visits],? says Marion, with a smile. ?I think that is the reason this story is being told.?

Bob was tired on this day, but when Marion asked him if he wanted to bowl, he simply pointed towards the lane. Of course he wanted to bowl! I helped Marion pick Bob and his wheelchair up, placing them both onto the parquet wood of the lane, after he repeatedly refused to stand up so we could move the chair more easily. Bob patiently waited for his turn to come around and then demanded that I participate with him. I handed him a ball to place on top of the bowling ramp. When the ball rolled down and struck 9 pins, almost a strike, Bob?s excitement was palpable and his smile was infectious. I tried giving him a high five, but he just looked at me and held up his fist. He wanted a fist bump instead. I came to learn that with Bob, it is HIS way or not at all. ?Bob is pretty much the boss,? Marion explained.

While we were bowling, I had the opportunity to meet a few of Bob?s friends. One of his friends, Diana Parson, asked Bob to attend the Greater Lakewood Activities for the Developmentally Disabled (GLADD) dance with her, held the 3rd Friday of the month each month. ?I remember when I met him right here at the bowling alley,? says Diana. ?He had a nice smile.? (For more information on the GLADD dance (http://www.tacoma.com/greater-lakewood-activities-for-the-developmentally-disabled-gladd/). According to Mike Stickell, a former staff/caregiver for Bob, he has always enjoyed dancing and even with his mobility limited for the past few years, he always gets out of his wheelchair to dance.

Bob?s love for sports goes beyond his weekly bowling. He occasionally attends Tacoma Rainiers baseball games with his roommates. Participating in sporting events illustrates how active Bob remains, even though it is difficult to plan around his health problems and mobility challenges. Bob?s room-mate Greg is a season ticket holder for the Seahawks. This summer, Bob will be watching a Mariners game from a luxury suite. Bob is choosing to use some inheritance money to pay for the suite. ?He is a high roller,? says Marion with a smile.

Bob doesn?t miss a meal. In the summertime, Bob and his roommates often invite a bunch of friends over and BBQ in the back yard. Bob truly enjoys these social gatherings. One of Bob?s roommates, Greg, noted, ?I like when he helps me with snacks and ice.? He also loves going out for hamburgers. ?I think Bob has a gift card to every fast food burger place within 50 miles of this place!? Marion remarks. Bob loves participating in his community and values his independence.

Last year, Bob worked with his caregivers to plan traveling on a cruise. He leafed through various cruise ship pamphlets, and selected a Disney theme cruise. Marion went along with him and she explained to me that she had serious reservations about the cruise. During the cruise, Bob was like a kid in a candy store and his positive attitude during the cruise made the specialized planning and care all worthwhile. ?The kids on the Disneyland cruise loved his magnetic personality,? Marion recalls. He really enjoyed all the activities on the cruise, but the themed character plays each evening were his favorite, as pictures of him with various Disney characters from the cruise throughout the house illustrate.

Fifteen years ago, Bob moved from California to Washington to live with his brother, Michael and his family. Although they all tried very hard to make it work, increasingly dangerous breathing problems, more frequent seizures, and violent outbursts led to the difficult decision that Bob needed professional 24-hour care- more than Michael and his family could provide.

Eventually, Bob came to Aacres under the care of Mike Stickell. It took time and patience to work out all the issues, but persistent medical follow-up and working with Bob on his goals for living in the community began to pay off. The seizures became more controllable and the angry outbursts began to fade. Michael?s letter to us stated, ?It is like he is really getting to enjoy the last years of his life as I and his other brothers and sisters would never have thought possible.? At one point Michael asked Bob if he wanted to come back and live with him, but Bob responded, ?Nope, I like where I live now!?

When Bob heard me talking to Marion about his brother, Michael, he uttered the 3 most discernible words he said all day, ?I love him.? Bob has 12 brothers and sisters: Pamela, Michael, Pat, Rachel, Cindy, Chris, Connie, Dorothy, Susan, Barbara, George, and John. He has relationships with all of his siblings, and has attended several family reunions back in California.

Michael is grateful that Aacres was able to stabilize Bob?s medications for his seizures, which decreased his violence and allowed him to return to the good-natured Bob of his youth. ?You have given him his own life to live, pretty much as he has chosen?I am just so glad he?s happy. He deserves to be happy.?