Caring for an Adult Child with Disabilities
Cheryl Caira is a mom from Framingham, Massachusetts whose adult daughter, Jordan, has Down syndrome. She shares, “Don’t wait until your child is 22 to ask, ‘what do I do?’ With Jordan, we kept looking ahead at least a year out about what you want for them? We learned that your child does not have to mirror another child with a disability.” Discuss the future with your adult child sooner rather than later about what they want for themselves and start to brainstorm a plan for what the next phase of life looks like based on your specific situation.
Update forms to allow open communication and decision-making
The Health Insurance Portability and Accountability Act of 1995, commonly known as HIPAA, is a federal law that created national standards to protect sensitive patient health information from being disclosed without the patient’s consent or knowledge. As a result of this, when your child turns 18, you as their parent cannot access their medical records or speak to their doctors without their written permission.
It’s a good idea to have this conversation with your adult child and whether there’s a need for you to have a signed HIPAA release form on file especially if your child has medical, cognitive or mental health challenges that would require you to step in to help make decisions on their behalf. As you age, it’s important to plan for the future after you’re gone and determine who will step up in your absence should this still be a need for your adult child.
Become familiar with the Americans with Disabilities Act (ADA)
The Americans with Disabilities Act (ADA) is a federal civil rights law that prohibits discrimination against people with disabilities. Knowing your rights under the law is important not only for you but for your child if they are able to understand.