Transitioning into the Great Unknown: Adulthood

August 2, 2013
Navigating the path to adulthood can be at turns frustrating, overwhelming, and rewarding.

By: Allison Eatough and Kristina Rolfes

A graduate contemplates his futureWhen Damian Jackson was younger, his mother, Carla Dixon, worried about what life would be like for her son after he left the safe environment of Kennedy Krieger High School. The school provided Damian—who has autism—with structure, socialization, and extensive therapy services. But Dixon knew that when school ended, so would the school-based services.

Transitioning to adulthood can be full of uncertainty for anyone, but for parents of the more than half a million individuals with disabilities who “age out” of high school each year, the uncertainty can be overwhelming.

One in five U.S. families has a member touched by a disability, and the rate of autism alone is growing at an alarming rate. An increasing population of individuals with disabilities, combined with dwindling state budgets, leaves many families facing long waiting lists for limited adult services. Once a child reaches adulthood, it’s like falling off a cliff, some disability advocates have noted.

Disability can affect virtually every aspect of life—employment, healthcare, housing, transportation, socialization, recreation, emotional well-being, and financial security—and families must navigate the sea of fragmented adult service agencies, often by trial and error, to find support for their adult child.

But there are strategies that can make the journey easier and help adults with disabilities lead more productive, independent, and fulfilling lives. And there are many former students and patients of Kennedy Krieger Institute who have successfully transitioned to adulthood, having secured internships and jobs, earned college degrees, and achieved dreams many thought were not possible.

Start Early

Mother with her toddler“Families should start thinking about transition from the moment a child receives a diagnosis,” says Eric Levey, MD, a pediatrician and researcher at Kennedy Krieger. “Envisioning your child’s future as an adult can help identify goals, so you can then identify a path and the appropriate resources for getting there.”

Early on, families should also link to state agencies that can help children after they age out of school. In Maryland, these agencies include the Developmental Disabilities Administration (DDA), the Mental Hygiene Administration, and the Division of Rehabilitation Services (DORS).

“We encourage all families—as soon as there is a significant disability identified—to apply to the DDA, regardless of age” in order to increase the likelihood of having the support needed once school is over, says Chuck Durgin, Kennedy Krieger High School’s coordinator of adult and community services for students.

Partner with Your Child’s School

Transition planning is most successful when schools and families work together, so families are prepared to continue advocating for their loved ones once school is over, says Durgin, who worked with Damian and his family to develop transition goals. If families are not actively involved in the process, their child may be at a disadvantage.

“We use creative strategies to address the needs of all children, regardless of their level of disability and level of personal and family resources, so that people with more significant disabilities or financial hardships aren’t left behind,” says Durgin.

Kids on a swing

Durgin and the school team work with families, employers, and adult service agencies to identify post-school placements. They also assist families with filling out agency paperwork, defining anticipated support needs, coordinating visits to post-school placements, and following up with parents after graduation to see how graduates are adjusting to the community.

Involve Your Healthcare Providers

Healthcare providers should also be active participants in an adolescent’s transition plan. At Kennedy Krieger, clinicians integrate transition planning into their visits to educate parents about planning for their child’s future.

As part of a Center of Excellence grant from the Maryland Department of Health and Mental Hygiene, Dr. Levey and a team of Kennedy Krieger professionals designed formal transition planning guidelines for clinicians. These guidelines promote patients’ independence, understanding of their medical condition and treatment, educational and vocational development, and social adjustment. They also help families maintain continuity of resources into adulthood.

Unlike many organizations, Kennedy Krieger continues to treat individuals with certain disabilities like muscular dystrophy, spina bifida, cerebral palsy, and spinal cord injuries into adulthood, ensuring continuity of care. Kennedy Krieger also offers assistance in creating a portable health profile, which is a paper or electronic medical summary that can be shared with other healthcare providers, promoting collaboration that helps provide better care for patients, especially as they become adults.

Patient with physical therapistPatients at the Institute have access to social workers who can provide them with guidance, support, counseling, and advocacy. “We look at children and adolescents holistically, and try to consider all of their needs with respect to family, peers, recreation, independence, mobility, healthcare, and sexuality,” says Mary Snyder-Vogel, director of social work.

“There’s a lot of collaboration within the Institute to problem solve and find available resources for kids who need critical support services in order to be successful,” says Durgin, who frequently consults with families of patients at Kennedy Krieger.

Develop Work and Life Skills

A big part of preparing for adulthood is developing work readiness skills that allow adolescents to gain valuable experience before entering the employment world. Adolescents can begin to learn responsibility by doing chores around the house. Volunteer opportunities teach adolescents work and social skills and responsibility, in addition to helping them explore what types of jobs they enjoy. They can also lead to a reference, which can help with future employment.

Student in wheelchair and teacher play musicAt Kennedy Krieger School Programs, work-based learning is a mainstay in the curriculum. Students choose an industry “major” and work in student-run businesses. “If students are successful in their on-campus jobs, they can continue their work-based learning through off-campus internships,” says Derek Glaaser, educational director at Kennedy Krieger School Programs. In the past, students have completed internships at Sinai Hospital, Port Discovery, Cylburn Arboretum, the Baltimore County Department of Aging, and the Baltimore Museum of Industry. Kennedy Krieger continues to build business partnerships with other organizations to provide additional employment opportunities for students.

The curriculum at Kennedy Krieger School Programs also focuses on learning life skills to promote independence. Students go on community-based trips with staff members to practice communication, socialization, and other life skills through activities such as shopping and dining out. These types of activities help students develop independence, says Michael Delia, director of the school’s specialized autism education program.

Build Support Networks

For most of a child’s life, schools provide a social network. But once school is over, many children with disabilities lose social contacts and experience isolation and sometimes depression. Part of transition planning should include building strong support networks that will be in place after graduation.

These relationships can develop through social and recreational activities, summer camp programs, and social groups—all resulting in a positive support network after school is finished. Families should also build relationships with quality providers of mental health care and physical, occupational, and speech therapy so that these individuals continue to improve and don’t lose skills. Vocational networking with employers or agencies that provide employment support can help, as well.

Transitioning to adulthood is complex, but Kennedy Krieger sees more and more success stories every day. Through work-based learning, a high quality of special education intervention and health care over a long period of time, and building a network of community resources, adults with disabilities face a brighter tomorrow.

Resources and Training for Families of Adolescents with Disabilities

Kennedy Krieger’s Maryland Center for Developmental Disabilities offers resources, services, and trainings to help families understand and address transition-related issues.

Access Transition Resources

Transition Success Stories

Damian Jackson: With support and guidance from Kennedy Krieger School Programs, Damian now has his foot in the door as a rehabilitation technician and medical illustrator at a local hospital.

Melissa Silverman: Thanks in part to Kennedy Krieger’s Down syndrome mentoring program and parents who were constant advocates, Melissa went on to become a teacher’s assistant and an active disability advocate.

James Williams III: James is redefining his potential thanks to more than 15 years of services at Kennedy Krieger, and parents who actively sought out vocational, employment, and social opportunities in the community.

Liza Patchel: A lifetime of care at Kennedy Krieger, along with her mother’s no-pity approach to parenting, helped Liza on her path to earning a master’s degree and living independently.

Benjamin Range: Early guidance from the Center for Development and Learning helped Benjamin Range on the path to a master’s degree, despite autism.