Building a Life

A transition guide for Kansans

Things to Consider

  • Make sure your youth/young adult feels comfortable talking with medical providers
  • Teach your young adult how to be organized for their doctor’s visit, take notes and ask important questions

Advocating in a Medical Home

Sometimes healthcare advocacy is a bit harder, especially when it comes to advocating for your young adult or teaching them to advocate for themselves. Patient-centered care is becoming more of a standard in health care, but sometimes we still need to advocate for young adults to be kept in the driver’s seat. As a parent or a member of the Circle of Support, you can also help your young adult learn how to advocate for their health needs.

The following “tips” are some basic guidelines for advocacy that may be specific to health care or a medical home.

  • Learn about Medical Home: Do some research and find out what all is included in a medical home. What services should a medical home provide? What supports are available within a medical home? What can patients expect out of a medical home? Does your doctor consider himself or herself a medical home?
  • Identify Key Players: Who are the people that will be involved with your young adult’s health care? Which ones are decision makers? Who might need to be educated about the young adult’s health needs? Who might be in charge of authorizing needed health services? Some key players might include: Circle of Support members, doctors, care coordinators, insurance companies, etc.
  • Learn to Navigate the System: Disability services can be quite complex, that’s why this website seeks to help you understand them. Health systems are not any easier. Learning to navigate the system can mean anything from learning the right vocabulary to when to call the insurance company before medical care is received. This can also be as simple as knowing who in the doctor’s office to call for specific needs or information.

Tips on Partnerships

The patient is the key to successful partnership in the medical home. Therefore, if your young adult is able to direct their own health care, they will serve as the most valuable resource to a health provider. If not, the Circle of Support can step in and serve as that resource. It’s important that we are all actively engaged and participate in our health care. This is no different for young adults with disabilities. In fact, the best way for young adults to build a partnership is to be actively engaged in their health care. Regardless of their ability to “direct” their health care they can still be actively engaged. Some other ways for young adults to build partnerships include:

  • Communicate: Communicating with doctors or medical providers can sometimes be intimidating. By sharing thoughts, opinions, concerns and requests, a stronger partnership can be built. Make sure the doctor knows what is going on and what help you need.  
  • Know the Ropes: Talk with the doctor’s office about what they expect out of their patients. This opens the door for more effective communication. The other part of this is for the young adult to also share their expectations of their doctors. When everyone is on the same page, partnerships are much easier.
  • Be Thankful: Being courteous and gracious can go a long way. If someone has been particularly helpful or has listened to your needs, thank them and let them know you appreciate them. Partnership is about mutual trust and respect.
  • Ask Questions: Coming to appointments prepared is something doctors really appreciate. But even more than making the doctor happy, it supports a strong partnership. Go to your appointments with a plan and tell the doctor what that plan is. Ask questions to get the answers you need. Don't leave that appointment without getting an answer that you can understand that will help you follow through with your plans.

Supporting Health Independence

Supporting young adults to be independent is not just about making sure they get a solid education, assisting them to find safe, affordable housing, learning how to interact with others in the community and striving for employment. It’s also about making sure they can manage their own health, or have someone who can help them manage their health with as much independence as possible.

There are many things that young adults should know about their health before complete transition to adulthood. These include knowing about their disability or health needs, understanding healthy habits, knowing medications and equipment needs, being able to communicate with health professionals, having and knowing what to do in a health emergency and understanding what is needed in paying for medical care.

There are tools available that can help young adults learn about these components of health transition and can help them to learn these skills. Check out the tools under the Tools & Resources section for different checklists and assessments.