Maclaen
INTRODUCTION
Maclaen graduated with honors from Polson High School in 2002. He was told he was ineligible for Developmental Disabilities Program (DDP) Community Supports funding because his needs were too high. Due to the impacts of his disability (Prader-Willi Syndrome), professionals doubted he could live on his own. Instead of becoming discouraged and giving up, Maclaen and his family set out to prove the experts wrong. Today Maclaen rents a trailer in Polson, works two jobs, enjoys time with friends and family, and finds all kinds of ways to relax and have fun when he isn't working.
EMPLOYMENT
It took years of dedication and hard work for Maclaen to get where he is today. In the spring of 2000, Maclaen's special education teacher (Don Dubuque) and Ellen Condon (Project Director) invited Maclaen to participate in Project WISER through the University of Montana's Rural Institute. WISER's mission was "to develop an innovative model of transition planning in the Bitterroot and Mission Valleys which promotes individualized customized employment for students with severe disabilities and ongoing support needs."
As part of WISER, a Vocational Profile was developed for Maclaen. The Profile identified characteristics of an ideal job...this information was initially used to create work experiences and later to negotiate paid jobs using a Representational Portfolio. During his participation in WISER, Maclaen worked at the Polson City Library, St. Joseph Assisted Living, Mainsail Video, Top 40 Video, Odyssey Glass, various offices in the county courthouse, and Linderman School, and he chose to volunteer at the local humane society to explore whether or not he would like to pursue this line of work and possibly start his own dog boarding business. In addition to giving Maclaen more information he could use to make career choices, all these experiences helped him make invaluable connections to people in his community.
Before Maclaen graduated, Mr. Dubuque developed a job for him based on his interests, contributions and support needs. Vocational Rehabilitation funded his initial wages while he learned the job, and a PASS Plan (Plan for Achieving Self-Support) was approved by Social Security to fund follow-along supports and transportation starting the day after graduation. (Maclaen had been referred to DDP for supported employment services but he was on the waiting list. Without follow-along supports from another source, it was feared that Maclaen would lose his job while he waited for his name to reach the top of the list.)
Maclaen was eventually approved for Developmental Disability (DD) services. He worked with two different provider agencies but was not satisfied with their services. He said the agencies were not very organized and gave him jobs he didn't like at all. They cut his wages even though he was focusing on the task at hand and accused him of things he hadn't done. Most critically, Maclaen said they weren't listening to his wants, needs, and interests but were just going with what was convenient in terms of finding him employment.
His parents decided they could provide better supports and in July 2009 started their own business, Zeda LLC. His mom and dad are his job coaches, charged with finding Maclaen more work and more hours. In addition, they have meetings scheduled with Maclaen's current employers to discuss essential supports that weren't built in when Maclaen was hired. Maclaen's mom Valerie explains that outside provider agencies often don't know the person they are representing well enough to adequately explain necessary supports to employers. Parents, on the other hand, have years and years of experience with what works and doesn't work for their child. She suggests that DD service providers make sure they establish and maintain good communication with the people who know their client best. Valerie has been able to talk one-on-one with employers and others in the community to alter their preconceived ideas about hiring people with disabilities. She has used Maclaen's Portfolio to tell people about his abilities and strengths...to portray him as an asset and not a liability.
Today Maclaen works ten hours per week as a Courtesy Clerk at Safeway and five hours per week as a Library Assistant at the Polson City Library. At Safeway, Maclaen bags groceries, does carry-outs and go-backs, completes price checks, corrals the carts, sweeps the walks, and picks up the floors to prevent injuries to customers or employees. As a Library Assistant, he shelves books and videos, sorts through the recycling paper to find pieces patrons can use for photocopies and scratch paper, organizes and puts away plastic bags and free materials (catalogues, puzzles, calendars, etc.), organizes and straightens the shelves to make them flush and neat, picks up garbage inside and outside to make the library look nice so patrons will want to come back, and runs errands (to City Hall, the post office, the print shop, etc.). At both his jobs, Maclaen says he works as a team with his outstanding bosses and coworkers. He is grateful that the work experiences he had in high school helped prepare him for work and for life as an adult.
HOUSING
Even in high school, Maclaen knew he would rent his own place after graduation. He wanted to be independent, to make his own choices, and to "live just like all adults." Maclaen feels strongly that "no one can expect to live for free or be dependent forever on other people."
When choosing his future housing situation, Maclaen had to consider two important factors. First, he didn't have much money. With only SSI (Supplemental Security Income) and limited wages, Maclaen couldn't afford most of the rentals in the Polson area. Second, he wanted to be near family members so they could help him with home maintenance chores, meal times, and other areas where he needed a hand. Maclaen's grandfather had the perfect option - an affordable trailer for rent three houses down from his parents and right next door to his aunts.
Maclaen's trailer has a big living room where he watches television, listens to music, plays on his Playstation II, types documents and plays games on his computer, and spends times with his two cats. He has a bedroom and a bathroom, as well as a porch where he can have picnics or just relax outside. In his kitchen, his refrigerator contains only cat food (to keep it fresh and cool), and meals if his parents are out of town. The rest of the time, Maclaen eats his meals with his parents. This is the strategy Maclaen and his family developed to deal with the disordered eating that is part of his disability.
For fun, Maclaen also likes to swim, go for walks, shop, read books (he participates in a reading program that offers prizes), go out to eat and spend time with friends, meet new people, attend sporting events, exercise, make picture collages, take trips (shopping or vacation trips), help with planting and harvesting food from the garden, and complete projects (both inside and outside).
Having his family close by is important to Maclaen. He can easily visit them (they enjoy getting together to play games) and give or receive assistance as needed. Maclaen has two phones at home...he likes to call and chat with friends but also has the phones in case of an emergency.
To live on his own, Maclaen had to learn many new skills including how to pay rent using his SSI check and wages, outfit his home with the basic necessities (smoke alarm, fire extinguisher, phone, dishes, microwave, bed clothes, etc.), take care of his belongings, and keep his trailer clean. His parents and school teacher taught him how to pay rent before he graduated; the other skills he learned both by people telling him what needed to be done and by observing other people in their homes to see how they furnished and cared for their places.
HELP ALONG THE WAY
Maclaen credits his family and his current Opportunity Resources Incorporated (ORI) DD Case Manager with helping him obtain the supports he needs to live and work in Polson. (He went through several years of constantly changing case managers and feels that the inconsistency made the case management service much less effective.) His case manager spends time with him and works with Zeda to help him find work, arrange transportation to and from work, and ensure he has fun things to do in his spare time. Zeda provides Maclaen with the following DDP-funded services: supported employment, supported living, day services, and transportation. Maclaen also receives natural support from coworkers and supervisors who are willing to help out and explain things as needed at his jobs.
Maclaen explains that it was critical to have people who believed in him and who believed he could live on his own. They looked at the things he couldn't do and figured out ways to get those things done. Maclaen says it wasn't very hard for him, but it was really hard work for his parents. They had to search for resources, try different agencies, ask others for ideas, and ultimately form their own DD provider agency. Valerie adds that she and Maclaen's dad also had to learn how to "let go" and treat Maclaen like their other children. They had to accept that he might sometimes fail...that's how we all learn and grow.
FUTURE PLANS
When asked about his future goals, Maclaen said he plans to keep his trailer in good care and condition. He hopes to live there as long as possible but is concerned that as his parents get older, he may need to move closer to his brother and sisters so they can provide the supports he needs. Maclaen also strives to be happy and healthy, and to try to find some more work and additional hobbies. His mom said they may write another PASS plan next year so Maclaen can start his own business. To achieve these goals, he will continue to work as a team with his case manager and the staff at Zeda (his parents). He wants to help his team members get to know him better...even his parents have something to learn because as Maclaen explains, the parent/child relationship changes once the child becomes an adult.
FINAL THOUGHTS
Maclaen has many words of wisdom to share with other young people who want to live on their own and work in the community, including: Believe in yourself and what you want to do. Never give up. Keep trying. Try new things. Anything is possible. Your dreams will most likely come true.
(Story excerpted from the 2009 Emerging Leader Showcase.)
