It may be hard for you as a parent to imagine that your child with complex medical needs or disabilities can ever gain the skills needed to manage their own healthcare as a young adult. As with all the other skills you have taught your child over the years to help them succeed and become more independent, managing their healthcare needs is a step step-by-step process over time, and it can’t happen without your guidance and support.

Becoming responsible and making informed choices is lot of work, and your young person may feel more comfortable continuing to let you and others make all the decisions. But as a parent you won’t always be around. In Massachusetts, unless you are a court appointed legal guardian for your child, providers are prohibited by law to share patient information with you once your child is 18 years old.

Openly communicating with your child about their disability, complex medical needs and how to care for themselves should begin at a very early age. Young adults who have been prepared to advocate for their needs and make their own decisions have more control over their quality of life.

The links above are only some of the sites that can provide you with tools and support to communicate with youth and young adults about their disabilities or complex health needs and how to support them as they learn to make developmentally appropriate health decisions. Many of these sites also have specific information for youth and healthcare providers that you may want to share with them.

Whenever you are using the internet it is important to know if the information is accurate. The links that we provide are accurate and can be trusted, but you may also be looking at other sites for information. The following site can help you assess the accuracy of health information on the internet.


This information is provided by the Division for Children & Youth with Special Health Needs within the Department of Public Health.