The following article was posted in Viewpoint’s Fall/Winter 2007 Newsletter about a client at Vagthol’s! It was an inspirational story we would like to share again.
In April 2005, just two years shy of celebrating her 60th birthday, Sylvia Lee moved out of Fairview Developmental Center, her residence of 45 years, into the Koch-Vagthol’s Metabolic Residential Center in Burbank.
Lee was born with PKU (Phenylketonuria), a rare, inherited metabolic disease that results in mental retardation and other neurological problems when treatment is not started within the first few weeks of life, and because newborn screening for PKU did not begin until the mid-1960s, she went undiagnosed and untreated. by the time she was 13, Lee was demonstrating a number of behaviors, and her mother felt she could no longer adequately care for her and placed her in the care of the local state hospital.
Ann Seisa, owner of Vagthol’s Residential Care Center, Inc. says, “When Sylvia moved in with us, she was on an array of medications, had significant behaviours associated with her PKU and her Obsessive Compulsive Disorder, and her phenylalanine levels had not been stabilized. So the team, headed up by Dr. Richard Koch, set to work on treating her PKU, and also started working with an interdisciplinary team at the Semel Institute for Neuroscience and Human Behavior at UCLA.” In addition, Lee has very limited speech and language abilities, however, her comprehension skills are much greater.
During her first year in the home, Lee adjusted well to living in the community and became independent with her personal care, learned to make her own bed, and started helping with other chores around the house from setting the table to bringing in the groceries and helping in the kitchen. She also attended Kaiser Adult Behavior Center in Burbank. Seisa adds, “At first, no one believed me that Sylvia could start doing these things, but I’m a dreamer and kept telling everyone, ‘Yes she can.'”
Lee used to do puzzles as a child, and to this day still enjoys doing them. She only used to be able to focus for a few minutes at a time, but the staff worked with her to increase her attention span and now she can complete entire puzzles in one sitting.
As time progressed, Lee’s behaviors diminished, she was weaned off of all but one medication, and she developed new skills, Seisa shares, “I started thinking to myself that Sylvia has a chance to work. Needless to say, everyone looked at me like I was nuts, but I kept thinking about how much Sylvia likes bringing order to things and realized there were a number of paying jobs that were a good match to her strengths and new found abilities.”
So last summer, Seisa approached Build Rehabilitation Industries with an idea-find a way to get Lee a job and earn her own paycheck. Sato Gharibian, vice president at Build, says, “We are all about giving opportunities to people, because if you don’t give them a chance, you’ll never know if it’s going to work out. The only issue we had was how we were going to supervise her since our 20 or so employees in the Burbank workshop operate independently with assistance. Eventually, we decided that she would temporarily be supported by someone from her home while we figured out a solution.”
And earlier this year, Lee started working at Build. Seisa says, “We were so excited. Here was someone who had lived in a state institution for 45 years, living in the community, working and earning a paycheck. It was unheard of and it made you stop and think about how many other people are out there like Sylvia, that we don’t give enough credit or opportunities to, or have high enough expectations of, but who with the proper support and encouragement from those of us providing services can live production and satisfying lives as contributing members of their communities.”
Lee does a variety of different work at Build-collating, folding, stuffing envelopes, and packaging products. Gharibian explains, “Because she’s obsessive-compulsive, Sylvia’s conditioned towards repetitive behaviors, so anything that repeats a task over and over she is able to do well. She just requires and then she’s off. She does from time to time need someone to help her stay focused and motivated, and redirect her attention when necessary.” Seisa adds, “In the time that Sylvia has been at Build she has continued to make progress. Her productivity compares with that of the other employees, and some of her behaviors have decreased further because of being part of a work environment and having the opportunity to socialize with her peers. We’re hoping that in the future Sylvia will be able to make the transition from a one-to-one aide to a higher ratio of one-to-three or one-to-four.”
Rowena Pangan, Lee’s service coordinator shares, “Given Sylvia’s background, we had to do a greater degree of creative case management, but in the end, the way the supports came together really made the difference for her, and it’s great, the changes that have taken place in her since she started working at Build. Her physical appearance, her outlook and her attitude have all changed for the better-she’s a much happier person now that she’s working. And what’s also really nice is that the other employees at Build have accepted and welcomed her.”
Seisa shares, “Sylvia’s story challenges us to change the way we think about individuals with significant developmental disabilities and serves as an inspiration to us all. We need to look beyond the three-plus strengths and what he or she can do. Look at Sylvia. Look at where she came from and where she is now. ‘How much further can she progress?’ Compared with the challenges facing Sylvia two years ago, her biggest challenge now is that she is not able to communicate her needs verbally, and we’re exploring assistive technology options to help with this.”
Build is in the process of developing a program that will make it possible for other individuals like Lee to be employed so they too can have the experience of working and earning a paycheck. If approved, this new program will offer support in a one-to-four ratio in the workshop environment. Gharibian shares, “I view the workshop environment as a stepping stone towards community employment. It allows individuals to come through and get the training and experience to grow and develop, not only their skills, but also emotionally and mentally. We have a job club at Build, and for those employees interested in community employment, we help them develop their resumes, practice interviewing, and role play different scenarios so they learn how to handle situations that may arise in their work environment and with their co-workers.”
So it’s quite possible, that one day, with the continued support from those that believe in her, Lee may very well be employed in the community.