Disclaimer – I have a material and/or financial connection because I received a gift, sample of a product and/or compensation for consideration in preparing to write this content. All opinions stated within are my own.
When you’re the parent of a child with intellectual and developmental disabilities (IDD) there are a lot of fears that keep you up at night. Probably the biggest issue is what will happen to your child once you die. Where will they live? Who will care for them? What sort of life will they have?
I used to feel as if I had all the time in the world before I needed to worry about these things but in the blink of an eye my son is on the brink of being an adult – and it scares the crap out of me! For parents of neuro-typical kids the path is clear – either vocational school, college, a job or possibly enlisting in the military. From there they usually are launched to their independent future. This is far from the case for parents of children with Intellectual Disabilities. Here’s the reality – our kids will never have an independent future.
As their legal guardians, we need to plan and pray. The solutions can vary dramatically depending upon where you live, what supports you have and your child’s ability. The good news is that our children do have more options than previous generations. For many families a state institution used to be the only solution. There was no thought to where the person would live, how they would spend their time or even, quite frankly, their quality of life. Now, each person is considered as an individual and the focus is on person centered planning. This requires a team of people who care about your child to be involved helping map out a plan for his future. Most importantly, the child is involved in this process.
There are no easy answers however. Money is always an issue. Many people with IDD can’t find jobs. A vast majority of people with IDD can’t live on their own so a roommate situation is necessary and finding someone who’s compatible isn’t always easy. Location is also an issue. Most people with IDD can’t drive and need to rely on public transportation. Do you see why most of us lay awake at night?
As I said, the solution for every family is different. I feel lucky. My son has a strong support system, especially two sisters who understand they will be taking care of him and are happy to do so. He is able to care for himself and will probably only need an in-home aide for a few hours every day to help him. There are now home monitoring systems which will allow me to check in on him through video monitors, get alerts if he hasn’t come home and automatically shut down any appliance he may have left on.
I highly encourage any parent who has a child with IDD to start planning as soon as possible. It’s never too soon. Here are a few first steps to start planning for your child’s future living situation:
- Get involved with ARC , the largest national community-based organization advocating for and serving people with intellectual and developmental disabilities and their families.
- Learn more about the funding and services available in their state through DDS.
- Talk to other families in your community who have a loved one with IDD to learn about their solutions.
- Learn about tax savings through the ABLE Act.
What plans have you made for your child? What resources have you tapped into? Share your stories here. We all need to support each other.