For Monica, the impending conclusion of her son John’s high school education at Kennedy Krieger Institute was “like looking into the abyss. I didn’t know what to expect.”
When you have a young child with a disability, she says, “you know legally he’s going to school, so that’s a given.” But after graduation “you have no idea what’s coming next.” Monica wondered and worried about her son’s future. “Is he going to be sitting around and wasting away? What is he going to be doing?” Looking ahead “was frightening to say the very least,” she says.
“Transition for families and individuals with disabilities can be a scary word,” says Stacey Herman, director of post-secondary services at Kennedy Krieger Institute. “One fear that we usually hear from families is the fear of leaving school — a safe place — and the impact that change will have on their loved one and their family.”
These fears are well-founded. Nearly 80 percent of people with disabilities are not in the workforce, according to the Bureau of Labor Statistics. But the good news is that picture is changing rapidly.
Ten years ago, unemployment statistics for people with disabilities hovered in the mid-teens. In May and June, these statistics hit historic lows of 6.7 percent. Technological factors that impact workplace flexibility, such working remotely, and advances in assistive technology foretell “substantial potential for job growth among people with disabilities in well-paying occupations over the coming decade,” according to a 2018 report from the Department of Labor’s Economic Picture of the Disability Community Project.
It’s not just technology that’s changing the job market. Disability advocacy has made strides in resetting employers’ mindsets about ability and diversity. There’s been a “huge movement” in the disability community toward “person-centered planning,” says Kathy Rogers, executive director of Penn-Mar Human Services, which can help a new adult find and “create a life driven by purpose.” With the right support, a child’s transition from childhood to adulthood doesn’t have to keep parents awake at night.
Assemble the Team
The key to a successful, anxiety-free transition, says Herman, is building a relationship with “open and honest communication between the school, families and the individual. Both families and the individual need support during the transition.”
Herman says the DDA-sponsored CORE Foundations program at Kennedy Krieger Institute helps individuals transitioning from a school setting to adult life. It brings together the transition team, the school team, the family, the individual and anyone else the individual chooses to help gather information and support the transition process.
During meetings, questions will center on family and friends, health and wellness, education, recreation and leisure, daily living and employment to create each individual’s “person-centered plan.” The stronger the relationships, “the smoother the transition process will be for all.”
John’s dream job would be at a car dealership, Monica says, adding that “he loves cars.” Right now, he’s getting work experience at Kennedy Krieger Institute, his former high school and where he interned during his final year of school there.
“He worked in different areas, and when his internship was done, we found out he was going to be hired,” Monica says. John is “extremely excited to be productive,” she says, and he comes home tired, a sure sign that he is working hard.
Monica says staff helped her family navigate this new life for John. “I work 50 hours a week. My schedule is jam-packed,” she explains. On top of her time crunch, finding the right government programs and services was confusing. Without the school’s support, “I would’ve been completely lost,” she says.
“Each individual is unique with their own needs, likes, dislikes and goals. The questions asked should be specific to individuals’ personal goals,” Herman says.
Parents should start asking questions about transition as early as they’d like, Herman says. “And asking questions as they arise is important at any age.” But families should start formal transition planning when their child turns 14.
Herman recommends parents ready themselves and their teen for transition by asking the following of their school’s transition team:
• How can we access transition support services?
• How do we access services from the Department of Rehabilitation Services, the Developmental Disabilities Administration and the Maryland Transit Administration — and request resources and/or meetings related to benefits counseling?
• What steps should we take to visit, apply and choose an adult service provider?
• What training or workshops, courses or resources are available to support understanding of service eligibility and services provided under the Individual with Disabilities Education Act?
• How can we ensure our child receives an individual-centered plan?
• How can we find a program that offers options based on the individual’s abilities?
• What happens during a person-centered planning session and who should be included?
Connect with a Community Program
Even if your child cannot enter the workforce full time without assistance, there are organizations that can help your child find their community and help them create a life driven by purpose. Maryland is an employment-first state, which means, Rogers says, that anyone who wants to get a job can get a job.
Penn-Mar Human Services provides employment “discovery and exploration” services. This gives clients opportunities to experience different work environments.
“A lot of times they don’t know what’s even available until you start showing them,” Rogers says.
Herman says when parents and teens look to pair with an adult community provider, that organization should be committed to “best practices, increasing employment outcomes, increasing community engagement, providing education and training to the community and businesses and developing meaningful, trusted relationships with all.”
It’s important to view this process as a collaborative effort with the individual at the center, she says.
Sometimes it can take a while for the right opportunity to come along, Rogers says. To keep busy learning and upskilling during the job search, clients work with Our Daily Bread, volunteer at pet shelters and do “all kinds of cool stuff,” she says. Clients can also take skill-specific classes.
“We have a day learning center where you can take woodworking, computer classes, you name it,” she says.
Penn-Mar works with people with intellectual disabilities and with a diverse client base. “We have people who are nonverbal and employed,” Rogers says. She recalls one client, Regina, who was combative. Someone could have written her off as unemployable, she says, but Penn-Mar worked with her for months and discovered Regina loved to shred paper. Regina now works for paper shredding company and is a “different person,” Rogers says. Instead of demonstrating anger, she is proud of herself and her work.
Rogers advises parents to keep an open mind as a child plans his or her postsecondary future.
“There are so many things out there,” she says. “The world is opening up to people with disabilities.”
• Developmental Disabilities Administration, dda.health.maryland.gov
• Department of Rehabilitation Services, dors.maryland.gov
• CORE Foundations at Kennedy Krieger Institute, kennedykrieger.org
• Project SEARCH National, projectsearch.us
• EAD Center, leadcenter.org
• Workforce Innovation Technical Assistance Center, leadcenter.org
• Penn-Mar Human Services, penn-mar.org