As Our Kids Become Adults:  A Family’s Story

Transitions are hard. Changes for kids with disabilities and their parents can be very hard. Nathan’s parents are no exception. Nathan turned 18 earlier this month. He has a genetic disorder and fragile health. He uses a wheelchair and can’t talk.

Nathan is schooled at home with the help of a teacher from the local school district. He has many absences from school due to hospital stays and illnesses. He has received homebound services for years. Therapies are also delivered at home.

Nathan’s school said that he was set to graduate in 2018. His parents were surprised. How was that possible? Nathan’s campus coordinator insisted that he would complete his credits and was ready to “walk the stage.” Mom was doubtful.

She went to the special education office at their school district office to get help on Nathan’s school status. The official told her that per Nathan’s IEP, he is enrolled in the school’s transition program for kids aged 18 through 21. He must complete one of three other options relating to jobs, job readiness, and access to services. Nathan will graduate from school when he ages out.

At 18, Nathan’s health care services were changing. Moving from child to adult care providers. Therapists who had worked with him for years were no longer available to him. They only served pediatrics. The family had to find a new therapy agency. One that provided adult services. His family knew that soon Nathan would probably have to change all his doctors.

The biggest change for Nathan’s family was guardianship. At 18, Nathan is considered an adult. His parents couldn’t make decisions for him unless they were his legal guardians. Other alternative options would not work for Nathan. His needs leave him unable to make choices on school, health, money and daily living.

The family went through the stress of finding a lawyer. Doing the paperwork and getting doctor’s signatures. It was an expense the family didn’t plan. Another change among many changes as Nathan ages.

Know that as kids with disabilities get older, changes will come quickly. Prepare for all these changes before they are needed. Find the right solution for your child’s transitions into adulthood.

You can find more information about alternatives to guardianship and at Transition to Adulthood.