BY RACHEL EZEKIEL-FISHBEIN
Internships can pave the way for a more satisfying life with rich connections to community and meaningful experiences, and possibly employment.
“Good morning. It’s nice to see you. I have a delivery for you. Would you like a newspaper?” asks Annie Kramer-Golinkoff, using head switches to access her Dynavox augmentative communication device. Annie maneuvers the hallways of JEVS’ Human Services’ administrative offices in downtown Philadelphia expertly with her power wheelchair, stopping at each office with this greeting. Employees come out of their office to greet Annie like an old friend, and Annie beams each time one says yes and takes the morning paper.
Annie, 22, has worked at JEVS for two years, first as an intern and since her graduation from HMS School for Children with Cerebral Palsy last year, as a volunteer. According to Nancy Astor Fox, chief development officer at JEVS and Annie’s supervisor, the non-profit recently extended a part-time job offer to Annie.
Annie’s internship was an integral part of her transition from HMS, a day and residential school which serves students with complex, multiple disabilities, usually resulting from cerebral palsy, traumatic brain injury or other neurological impairment.
“The transition from school to adulthood is an extremely tough process,” explains Annie’s father, Michael Golinkoff. “During the school years, until age 21, there is infrastructure and a process you can navigate with your child, and funding. They say, ‘when you turn 21, you fall off a cliff.’ The structure and funding suddenly disappear.”
Without the continuous education, guaranteed interaction and therapies of school, life as a young adult with a complex disability can be lonely and tedious. Internships can pave the way for a more satisfying life with rich connections to community and meaningful experiences, and possibly employment. They build structure into the day and provide a public service – introducing people in the community to others who have different abilities from them.
Planning for transition – including the internship program – begins at age 14 at HMS. The team incrementally scaffolds to support students as they move from the school’s holistic program which combines therapies, assistive technology training, health services and personal care, education and socialization into their adult life.
Recent HMS graduate Anthony Casillas, 23, lives with a caregiver. He works at HMS once a week and volunteers at The Children’s Hospital of Philadelphia four days a week. The patients he works with are often curious about his wheelchair and other aspects of his disability. To Casillas, who hopes to be a parent one day, it’s a teachable moment. “If I ever have a kid, I would tell them to look at me as a person, not as the wheelchair.
“Parent will stop their kids from asking me why I’m in the chair, but I’d rather they just asked. The kids are cool with it, and I think maybe when they get older, they’ll remember they asked and then they’ll be wiser or maybe when they have kids, they’ll be more open about it and not tell their kids, ‘you can’t ask him.’ If a kid is intrigued by the chair, why not ask?
“By not asking, it’s like pretending it’s not there. Why not use the chance to learn about someone who might be a little different from you in this one way? I know I’m in the chair and they know it, so why pretend it’s not there?”
As a student, Casillas interned at the VA Hospital. He found patients easily opened up to him. “I think it was because I am in a wheelchair,” muses Cassilas, “It inspired them to feel that they could heal, because they watched how hard I worked.”
Ashley Overton, a highly social 17-year old student from New Jersey with quadriplegic cerebral palsy, interns at the Burlington County Library in her hometown every other Saturday. Ashley’s family wants her to remain living at home upon graduation from HMS in four years. Internships are helping her expand her community connections, the first step in filling her calendar with meaningful activities and interaction.
“Nobody wants to just sit at home all day,” says HMS director of education Christina Coia. “A primary goal of the IEP during transition is to be a productive member of the community. Internships provide social context for the students, and gives them opportunities to use their communication skills to interact and develop relationships in their community.”
Ashley greets visitors to the library using eye gaze technology to access her communication device, while her mother scans in their books. A few patrons have rolled their eyes or been impatient, but the majority have been as eager to get to know Ashley as she is them. Some regulars now plan their visits to the library around Ashley’s schedule.
“I discussed with Ashley that people in our town knew her, but not people from further away and we wanted them to start to get to know her,” says Ashley’s mother, Pam Overton. “I needed her to understand that people who were unfamiliar with her might not have a positive first reaction. Eventually she’ll have to transition out of HMS and I wanted to see how people handled dealing with her and seeing her, and how she handled being there.”
Hiring an intern with a complex disability was as much an education for the staff at the library as it was for Ashley. People often assume individuals with complex disabilities are incapable of any independence and of giving back. Getting to know Ashley dispelled that myth for her town’s librarians.
MAKING CONNECTIONS: Anthony Casillas, an HMS alumni and employee, visits with Mayor Kenney. Anthony works at HMS once a week and volunteers at The Children’s Hospital of Philadelphia four days a week.
“I let Ashley educate the librarians about her capabilities by encouraging them to converse freely with her,” explains Pam. “They’d ask me what to say, and I’d tell them to ask her anything they’d ask another 17-year-old girl. They learned her favorite color, what songs she likes and about the Justin Bieber concert we went to.”
As the staff at the library got to know and trust Ashley, they gave her more responsibility. She learned the library’s organizational system and began helping shelve the books. Young children visiting the library now ask to accompany Ashley as she’s putting away books.
Later this year, Ashley will increase her days at the library to three and add an internship at Virtua Memorial Hospital in Mt. Holly, another community institution near her family’s home. Her team at school will program her device so she can read to children in Virtua’s pediatric ward.
“This is the next step in Ashley’s transition,” says Pam. “By 21, she needs to decide which things she really likes out of all of the things she’s trying, so she can work as an adult and have a fulfilling life. We’re doing all of this now so that by graduation, Ashley will be enmeshed in the community, comfortable meeting all sorts of different people and having to present herself to them, and comfortable doing lots of different work.”
Planning an internship for a student with complex disabilities takes forethought and organization. Transportation must be arranged, the site must meet the student’s accessibility requirements, and the student’s communication device must be programmed to allow her to communicate with co-workers.
As young teens, HMS students begin to hone their workplace skills with jobs around the school, such as delivering the mail, shredding paper and taking care of school pets. After they have mastered several jobs, teachers and occupational therapists talk with the students about what they liked best, discussing their strengths, interests and capabilities and encouraging them to begin determining what kind of work they might enjoy. Together they develop a resume. Some students even produced video resumes.
As they approach the age of 17, students rehearse for interviews. In the classroom, they discuss how to manage workplace social situations. Once they secure an internship, students practice the specific tasks they will be expected to perform.
“The biggest roadblock to our internship program is finding receptive organizations to accept our students as volunteers,” laments Coia. “They don’t recognize what our students can bring to their operations.”
It takes a lot of education to help companies overcome their initial fears and understand how students with complex disabilities can be actively involved in their day to day operations, without costing them manpower.
A trained adult, either an aide, parent or nurse, accompanies each intern to work. This removes any responsibility for oversight from the organization. This adult also provides personal care.
Michael Golinkoff cautions parents not to get discouraged or angry during the internship search. “There are going to be a lot of no’s for good and bad reasons. Know that when someone says no to your child, it’s their loss. You don’t need to settle or ask your child to lower their aspirations just because they have a disability. You must believe that your child will have a positive impact and will make the places they are engaged with better for being there.”
JEVS Human Services, where Annie interns, is dedicated to helping individuals with physical, developmental and emotional challenges and those facing adverse socioeconomic conditions live lives of independence and dignity.
“Sometimes when you’re working in an administrative office, you lose sight of what you do and who you serve. Annie reminds us of that,” says Astor Fox. “It has been inspiring for our staff. Even the most reticent employees have been so engaged and kind with Annie. The impact she has had here is a gift to us.”
Astor Fox encourages parents seeking internships for their children to use their personal connections and social media contacts to reach out to those who already know their child and members of their community, from the manager of the local supermarket to the township manager. “Don’t be afraid to ask,” encourages Astor Fox.
HMS began placing students in internships 10 years ago. Cheryl Leask, M.Ed., HMS’s transitional support specialist, uses data from the internships for measurement and planning.
The adult who accompanies a student to her internship can evaluate and report upon how well the student can manage her communications device in a real-life setting, whether the phrases programmed into the device need adapting, whether important phrases such as, “I don’t understand” and “I need help” are accessible, and whether the student can navigate a crowded hallway and move quickly enough to complete her job in the time allotted.
There is often a learning curve when using assistive technology in a different setting. Learning to adapt is practice for ongoing adaptation that will be necessary in the wider world.
“Internships allow us to see how well our students can transfer the skills they learn here to a real-life setting, without the full support of our staff,” says Leask. “Our goal is adaptability for functionality, no matter what the setting.”
Every day HMS is reminded of the power of internships for its students. The school welcomes back alumni volunteers. Those volunteers who interned for other organizations return with a strong command of their role and why they’re there.
Annie Golinkoff-Kramer is one of those volunteers. Annie showed up to work at HMS her first day, and stated, “Hello, I’m here and I’m ready to work.” •
ABOUT THE AUTHOR:
Rachel Ezekiel-Fishbein is a writer and public relations professional in suburban Philadelphia. The mother of an adult child with Tourette Syndrome, she frequently represents schools for children with special needs. Rachel is also an adjunct communications professor at Temple University.
FITTING AN INTERN WITH THE RIGHT ORGANIZATION
FIVE HALLMARKS OF ORGANIZATIONS THAT ARE LIKELY TO HIRE INTERNS WITH COMPLEX DISABILITIES
1. A focus on helping others.
2. Physical accessibility.
3. Flexibility and the desire to invest in someone who doesn’t fit the traditional mold.
4. Experience with volunteers and interns.
5.A strong ethic of communication.
FIVE HALLMARKS OF A STUDENT WHO IS LIKELY TO BE A SUCCESSFUL INTERN
1. Finds fulfilment in helping.
2. Flexibility. A student who can be flexible.
3.Comfortable asking for help and being the center of attention.
4. The cognitive ability to understand the concept of a job.
5. Basic communication skills, whether those are verbal or require a device.
FIVE REASONS AN ORGANIZATION SHOULD HIRE AN INTERN WITH A COMPLEX DISABILITY
1. The opportunity to help someone with special needs grow.
2. To enhance employees, customers, patients, etc. understanding of individuals with special needs.
3. To learn what people with differences can bring to the table.
4. To lighten employees’ workload.
5. To brighten the climate of the workplace.