When talking to parents that are caring for their disabled children you can hear in their voices and see on their faces the worry and motivation to find the best services and provide the highest level of care for their children.
Parents who have already spent years advocating for their child now take on these challenges independently of the school district when their child graduates and begins to transition out of high school at the age of 21. Once a disabled child graduates from their school, all services that they were entitled to no longer are available to them. At this point parents may find their roles have changed, not only do they need to continue to advocate for their child, but they may find themselves stepping into roles unfamiliar to them such as a social worker or financial planner for their children’s futures.
While their children are enrolled in school, they should choose a supports coordination agency to support them. These agencies can assist in securing funding for services and help find the services to support the child once they transition out of school. Securing a supports coordinator will help the caregiver with their child’s funding needs as well as day services or program needs or residential placement if they are ready for that step. Beginning this process several years prior to a child transitioning is important because funding is not always available and often times you will find a child is placed on a waiting list. It could take several months or years to secure funding depending on the needs of the child and situation. Also, depending on the funding, caregivers may find that their choices for services are limited and they need to be creative on how the funding is utilized. Even though your child may benefit from attending a day program or receiving specific services throughout the week, the funding amount may not allow for it.
Finding a program that is the best fit for their child after graduation is stressful for the caregiver and child. Finding a program that can meet all the child’s physical needs while fulfilling the interests, capabilities and growth of a child is a must for most caregivers. You will find that many caregivers begin this search for day services several years prior to their child’s graduation. In some instances, young adults begin transitioning while they are still attending high school, attending school for 3-4 days and their program or service for 1-2 days. If they begin this process early enough, they can expand the days they participate in the services and decrease the number of days in school.
The downside of a child transitioning and not attending school every day is that services like physical, occupational and speech therapy that prove to be beneficial to them decrease because they are not in school every day. Some parents limit the number of days a child transitions because they still want them to receive therapies while they can.
As children transition out of high school funding and services are available through county and state agencies. Services, supports and funding vary by your county and state. Caregivers that have disabled children can prepare themselves by researching how their school district handles transitioning out of high school and the funding opportunities that will be available for their children when the time comes. Securing a supports coordinator will help with this as well.
When talking with the caregivers that are going through this process with their child the top issues that concern them are: “the unknown” of their child’s future, trusting others with the care of their child, recognizing obstacles or surroundings that aren’t safe or good for their child, choosing the right services for their child which include supports coordination, supported employment, community participation supports, in home and community supports, respite services, transportation services and residential habilitation.
Graduating from high school should be a happy and exciting time for all students and parents. I believe for most caregivers of a disabled child it is bittersweet. In upcoming posts, we will focus on the services available to young adults transitioning out of high school and the challenges and accomplishments the parents and their child encounter throughout the process.