BY STACEY HERMAN, MS, CESP, AND MAUREEN VAN STONE, ESQ., MS
Not only do case managers assist with transitioning their clients from pediatric medical services to adult care, but they must also prepare the individual and their parent or guardian for the change from school-based services to employment services. Under federal law and regulations, transitional services mean a coordinated set of activities for children with a disability that is designed to be within a results-oriented process that is focused on improving the academic and functional achievement of the children with a disability to facilitate their movement from school to post-school activities, including postsecondary education, vocational education, integrated employment (including supported employment), continuing and adult education, adult services, independent living or community participation (34 CFR §300.43). Transitions services are based on the children’s needs, considering their strengths, preferences and interests and include community experiences and the development of employment and other post-school adult living objectives, among other things. Transitioning from secondary education can be a challenging and unpredictable experience for children with disabilities and their parents or guardians, despite the preparation and support provided by the local school system. However, the transition process does not have to produce fear and anxiety, but should be a time to celebrate accomplishments, prepare for the future and focus on a person-centered approach to prepare for adulthood.
As children with disabilities and their parents or guardians prepare for transition from school to adulthood, they need to educate themselves on the available state-funded services and supports, how to access those funds and when those funds are available. The transition process includes a shift from entitlement to services and supports through the local school system to an eligibility process. Children with disabilities and their parents or guardians need to learn and understand the eligibility process and begin the process as early as possible. They also need to work in collaboration with other key stakeholders including the children’s individualized education program (IEP) team, case managers and community providers to ensure a successful transition from school to adult services. Under the Individuals with Disabilities Education Act (IDEA), transition planning must begin when the child with a disability is 16 years old; however, in more than half of the states, it may begin as early as age 14. Children with disabilities and their parents or guardians should be actively engaged in the transition process and utilize federal and state resources to increase their knowledge of this complex process. As a result, they will make better and more informed decisions about their future.
Setting children with disabilities up for success includes a person-centered, team-centric approach that is individualized. Person-centered planning “is a process for selecting and organizing the services and supports that an older adult or person with a disability may need to live in the community” (Administration for Community Living). The most important part of this process is that the individual who will receive services directs it. Person-centered planning will focus on identifying an individual’s strength, desires and future goals.
Individuals with disabilities and their families should consider transition-to-work programs, like Project SEARCH. Project SEARCH is a 10-month, transition-to-work for individuals 18 through 24 years of age that provides hands-on job training through integrated worksite rotations, career exploration, innovative adaptations and mentoring from experienced staff. Project SEARCH was founded at the Cincinnati Children’s Hospital Medical Center in 1996. Since then, Project SEARCH has been replicated in hospitals and host business sites around the world. Kennedy Krieger Institute’s Project SEARCH program was established in 2018 to provide a meaningful work training experience to individuals with disabilities. Programs like Project SEARCH support the person-centered planning team through the transition from school to adulthood in a structured and supportive environment.
Individuals with more significant or complex intellectual and developmental disabilities may have a more challenging time making the transition from secondary education to adulthood and finding a program that will best meet their unique needs. However, these individuals can achieve personally meaningful, high-value and positive postsecondary outcomes while making the journey from school to adulthood. It is important to recognize that these individuals bring their own strengths and qualities into the transition process. Critical factors for future success include supporting self-determination in all living and learning contexts, providing quality work and/or job training experiences during the school years and building confidence and marketable, transferable skills.
In 2019–20, 7.3 million students, or 14% of all public school students, received services under the Individuals with Disabilities Education Act (IDEA). Individuals receiving special education and related services under IDEA are ages 3-21 years of age (National Center for Education Statistics). One day, these children with disabilities will become adults who need to find their places in our society as adults with a disability. Case managers may help their clients identify appropriate neurodiversity-at-work programs that will take a multi-faceted approach to hiring and retaining individuals of all abilities as part of the workforce. Kennedy Krieger’s Neurodiversity at Work is a collective-impact initiative designed to create and support gainful employment for individuals with disabilities, providing economic benefit for businesses and the larger community. The initiative is a person-centered collaborative designed to support individuals in all facets of life, across the lifespan. In addition, to ensure the needs of businesses are met, the goal is to match the right talent to an opportunity within a business.
Currently, 80% of individuals with disabilities are not part of the workforce, and the COVID-19 pandemic has also affected how individuals access services and supports to successfully obtain and maintain meaningful employment. Increasing employment outcomes for individuals takes a multi-faceted approach, including collaboration with the business community on inclusive hiring, retention and management strategies. The business community needs to be encouraged to take advantage of workforce trainings, management support and wrap-around support so they are best equipped to hire and retain individuals with disabilities as part of their workforce. Success breeds success and will increase employment outcomes for more individuals with disabilities. These individuals will be your neighbors, coworkers, friends and family, and they deserve the opportunity to have meaningful and productive adult lives.
Creating a successful transition from school to adulthood requires collaboration and a team of professionals to support the individual with a disability to the new chapter of their life. The team of professionals may include program managers, directors, admission and compliance specialists, community development specialists, employment specialists, behavior support and nursing staff. This team works in partnership with the individual with a disability and their family to develop a plan, meaningful goals, and daily activities so individuals can have an active role in their community. We can learn from success stories like Adam (whose named has been changed to maintain his privacy).
Adam participated in Project SEARCH at Kennedy Krieger Institute during his final year of school. Project SEARCH is a 10-month transition-to-work program for individuals with disabilities. It is a full workplace immersion with the goal of competitive, integrated employment. After successfully completing Project SEARCH, he then transitioned to CORE Foundations through Kennedy Krieger Institute’s employment services. CORE Foundations provides person-centered services that foster personal growth, promote meaningful relationships, and empower people with disabilities to achieve independence at their home, workplace and community. We develop a customized program in partnership with each individual to support their independence. CORE Foundations is a licensed Developmental Disabilities Administration adult service provider for the state of Maryland and a community-based program.
Adam participated in job development, which included a resume review, informational interviews, job search, application submission and interviews. With the support of CORE Foundations team members, Adam obtained a volunteer opportunity for an organization that supports cat adoption. After becoming a site lead for the adoption organization, his hard work was recognized by obtaining paid employment at a pet store. Adam has maintained his employment at a pet supply store for three years and has not only impressed his managers but the entire CORE Foundations team with his dedication and drive. Adam was furloughed for a short time during the pandemic but has returned to work eager to continue to help customers. He found a job he loves close to home, but most importantly, he has found his community.
Stacey Herman, MS Ed., CESP, is assistant vice president of neurodiversity and community workforce development at Kennedy Krieger Institute. Her role includes the creation and supervision of programs designed to support individuals with disabilities as they transition to the workforce and access their community. This role allows Stacey to interact directly with individuals while working with multiple departments inside Kennedy Krieger Institute and the business community to raise awareness, train and develop employment opportunities for individuals of all abilities. Stacey leads Kennedy Krieger Institute’s Neurodiversity at Work program, working with community leaders, business professionals and policy makers to realize the Institute’s long-term goal of improving employment outcomes for individuals with disabilities.
Maureen Van Stone, Esq., MS, is the director of the Maryland Center for Developmental Disabilities (MCDD) at Kennedy Krieger Institute and the founding director of Project HEAL (Health, Education, Advocacy, and Law), a MCDD community-based program. Project HEAL is Maryland’s only comprehensive medical-legal partnership, which provides advocacy and legal services to children with disabilities who receive services at Kennedy Krieger. Maureen is an associate faculty for the Department of Mental Health at the Johns Hopkins Bloomberg School of Public Health, affiliate faculty for the Wendy Klag Center for Autism and Developmental Disabilities and faculty for Kennedy Krieger’s Center for Innovation and Leadership in Special Education. She is former adjunct faculty at Towson University and The University of Baltimore School of Law. Maureen is a member of Kennedy Krieger’s ethics program.
Maureen earned a bachelor’s degree in psychology at the University of Southern California, a master’s degree in developmental psychology at The Johns Hopkins University, and a Juris Doctor at Whittier Law School, with a concentration on children’s legal issues.
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