As 28-year-old Carley of Polson says, "'No' can be challenged." She speaks from long experience. Carley is quadriplegic and uses a wheelchair for mobility and a computer for speech. Throughout her young life, experts have told Carley and her mom, Corinne, what she can't do because of their perceived impact of her disability. Time after time, she has proven them wrong.
Employment as a Transition Goal
When the concept of Carley working for pay in the community was first introduced to her IEP team (she was 16), several of the team members balked, thinking this was not possible, realistic, or feasible. Carley's family had always set high expectations for her and supported her to be as independent as possible at home; to them, employment seemed like the next logical step in her preparation for transition from school to adulthood.
The impact of Carley's disability can distract people from thinking in terms of what she can bring to an employer and a job. It is easy to focus on what she can't physically do and the daily activities with which she needs support. At school she had always had a one-to-one support person with her. There wasn't an expectation for her to be as independent as possible or to participate in events and classes with nondisabled peers, much less become an employed adult and tax payer upon graduation.
With two years left in high school, Carley started participating in a transition project through the Rural Institute. This project focused on customizing employment for young adults with significant support needs. Carley's team began discovering information about her strengths, interests, ideal working environments, necessary supports, and connections by spending time with her, observing and letting her show them what she could do. Corinne guided the team with her 16+ years of experience implementing strategies to enable Carley to participate fully and do things for herself.
During high school, Carley participated in two different community-based work experiences and a variety of in-school jobs. As she was given the opportunity to demonstrate what her interests and capabilities were, her strong work ethic became very evident. She strived to be independent on each job and was highly motivated by earning paychecks. Carley's team learned she is great at showing people how to get places, she knows where things are and she has an excellent memory. She is also a very social young woman.
As they gathered more information about Carley, the picture of her ideal employment situation emerged. The job development team, consisting of her teacher, her paraprofessional and Corinne, met with the manager of Wal-Mart and shared their clear vision of what Carley could contribute to his store. Carley was hired to stock the end-cap displays (the shelves on the end of each aisle that are used to highlight particular products for sale), the check-out candy and the clip strips located in various departments throughout the store. She also did merchandise returns for Customer Services. Eventually Carley chose to leave her job at Wal-Mart and pursue other challenges, but not before proving she was capable of working in her community alongside people without disabilities.
Carley has been actively involved in her geographic community and in the disability community for years. She owns a home-based card and calendar business, Carley's Workshop. While in high school, she was selected as "Student of the Year" for the Salish and Kootenai Tribes and the Polson High School District. She attended four proms. She served on the board of directors for the American Indian Disability Technical Assistance Center and on the advisory board for the Montana Transition Training, Information and Resource Center, both through the Rural Institute. Carley travelled to Washington, DC, and spoke with members of Congress; she has presented on nationwide webinars for the Rural Institute; and she has given talks in four different school districts. Recently, Carley advocated about accessibility issues in the local parks to the Polson City Council.
"Independence Means Taking on Challenges Early in Life"
Carley started learning to direct her personal care program at a very young age. She first told her mom she wanted to live on her own after high school when she was only ten, so Corinne taught Carley how to make her own choices...how to ask for what she wanted and needed. As Carley explains, "You need to learn the jobs that you can do so you are ready to live on your own, with supports in place. For example, my Personal Care Assistant (PCA) gets the laundry to my table tray. I put the laundry into the washing machine. I take the wet laundry out and put it into the basket. My PCA puts the wet laundry into the dryer. I help fold the flat items. I do laundry with support from my PCA." Corinne adds, "Every night you need to practice for living on your own. From now on, getting ready for bed means more than putting on your PJs."
Having the proper assistive devices is critical. According to Carley, "My wheelchair is very well-fitted for my needs. I can reach to the ceiling. I can get into my closet for dishes. I can open the refrigerator and freezer. I have an elevator lift, right and left leg lifts, and tilt on my wheelchair." Agency supports are key, too. Carley receives SSI, Medicaid, Developmental Disabilities (DD) Program services, food stamps, and energy assistance. Her family supports Carley to make medical and financial management decisions.
"Others Could Not Have Faith in Her Ability to Live Safely"
Carley dreamed for years of living in her own home. She and her mom worked diligently from the time Carley was little to prepare her for independent living. But when the time came to "leave the nest," agencies charged with providing services and protection to people with disabilities said she wasn't capable, that she wouldn't be safe living alone. They saw only her disability and repeatedly asked Carley to prove herself. She was referred to Adult Protective Services (APS) and Tribal APS required her to have a variety of assessments completed, including a psychological test and speech, occupational and physical therapy assessments. They said she needed to prove she could live on her own. It was a very stressful time for Carley and her mom. Even though they already had numerous supports in place to keep Carley safe, they were required to compromise and modify Carley's independent living plan before Tribal Human Services would approve it.
Carley's home is next door to her mom's. Her current supports include:
- Emergency Alert
- High-powered intercom (on at all times) between Carley's house and her mom's
- Emergency fire exit window (large sliding window with easily removable screen beside Carley's bed)
- Signs to indicate to emergency responders that Carley needs assistance to exit her house
- Record at Fire Department of where Carley lives and that she would need assistance in the event of an emergency
- Fire alarms throughout the house
- Emergency table (the following items are velcroed onto a medical table that slides over Carley's bed and is within reach at all times: Emergency Alert, cell phone, phone, augmentative communication device, remote controls)
- Intercom (right next to bed)
- Large computer surge protectors (requested by the Fire Marshal)
With the skills she started learning at an early age, assistive technology, and the support of her PCA and her mom, Carley is living independently...and safely.
The Sky is the Limit
In her free time, Carley hangs out with her sister, nieces and friends; shops; watches movies; listens to CDs; watches DVDs; or plays on her computer. Free time is limited, though, because Carley is hitting the books so she can pass the TABE test and enroll in classes at Salish Kootenai College. She doesn't attend a habilitation facility where she would have to fit into a group. Instead, Corinne was approved as a Developmental Disabilities provider nearly three years ago and she tailors Carley's daily home-based habilitation program to help her achieve her goals. Right now, for example, Carley is studying subtraction, multiplication, reading, and sentence writing in preparation for the TABE. Carley and her mom believe this individualized, sculpted program is a more appropriate way to use Carley's DD funds.
Advice to Others
Carley loves living on her own...seeing her friends, making her own choices, shopping for herself. For other young people who want to live independently, Carley advises:
- Make a plan early
- Get the supports you need to live safely
- Learn problem-solving skills
- Learn to make choices (parents, be sure to give your kids the chance to make choices!)
Corinne adds, "Agencies want to guarantee health and safety to the maximum degree, but it can't be done. We must allow people with disabilities to take the chances we all take. People have a right to take risks. We've had to fight for Carley to have this right."