The last day of high school is a bittersweet one for most parents. But for those who have children with developmental disabilities, it can be terrifying as well.
From a young age, children with developmental disabilities have been cared for during the day in school, learning life and social skills. When high school ends, as it must by age 22, these young people often return to their homes and struggle to organize their days and plan for their future.
This is a time of angst, stress and high emotion for parents as they realize they no longer have the school safety net to help them. Fully 87 percent of individuals with developmental disabilities are unemployed. The high cost of care for day programs, caregivers or aides and the lack of any income for this population exacerbate an already difficult situation.
All too often, parents we deal with either quit their own jobs or get fired as a result of having to care for their adult child. That creates a double impact on the financial stability of the family.
The state gives waivers covering services to support individuals who want to live with their families or in other community living situations, but the waiting list is currently years long. As of this spring, there are more than 7,000 Georgians who have applied and are waiting for assistance. We expect that number to continue to climb.
We are one of several organizations that are working to create more opportunities and resources to help parents transition their teenagers and young adults out of high school. It is recommended that parents begin making a plan for their child’s transition as early as fourth grade, but no later than ninth grade. Most find they spend five or six years figuring it all out.
Those who wait until the child is 17 or 18 waste many years and much money finding a plan of care for their child. In some cases, all the social development the child learned in school is gone after many years of isolation and lack of socialization.
We recommend a focus on five specific areas for transition: independent living, post-secondary education, employment, social engagement and health care.
Independent Living – One of the important considerations for parents is to plan for independent living. Most young adults hope to live independent of their parents and students with disabilities are no exception.
Post-Secondary Education – Many students want to further their education, but while post-secondary opportunities are increasing in Georgia they still are very limited. Many jobs now require additional training or various types of degrees or educational certificates. Parents may consider and investigate post-secondary opportunities for their child.
Employment – Supported employment refers to the well-defined approach to helping people with disabilities participate in the competitive labor market. Individuals are matched with well-fitting jobs in their communities and supported with any needed coaching to ensure their success and the satisfaction of the employer. This process would be made easier if more employers offered internships to individuals with developmental disabilities during their later high school years.
Social Engagement – Dating, relationships, marriage and community participation are important, and all take more effort after school. Social engagement is an important part of having a quality life, but it means many different things to different people.
Health Care – Young adults often must transition within the health care system. There are different issues, resources and services needed as individuals become adults. Health care can mean leaving a pediatrician and moving to a different medical provider. Some people with developmental disabilities may face new health issues as they age, while others may see previous health problems improve.
Georgia ranks 49th in the nation in funding for programs and services for people with developmental disabilities. Our state relies on a disjointed system of services and support that cannot be sustained in the long term. We must encourage our elected officials to increase the funding to meet the needs of young people with developmental disabilities.
All About Developmental Disabilities (AADD) is an Atlanta-based nonprofit organization dedicated to creating lifelong support, education and opportunities for children, adults and families living with developmental disabilities. For more information, go to http://www.AADD.org or call us at (404) 881-9777.
Kathy Keeley is the executive director of All About Developmental Disabilities.