Building a Life

A transition guide for Kansans

Things to Consider

  • Involve your youth/young adult in selecting their new medical team as they move from pediatric to adult services

 Healthcare Decision-Making Options

You’ve probably already thought about financial planning for the future for your young adult with disabilities. But have you thought about who will be there to help them make their medical decisions? Have you talked with them about what they want or discussed their ability to be independent in this decision-making? Many times young adults with disabilities need help, but what is available?

Advance directives are legal documents that allow a person to inform others of their medical wishes. Many times these are developed when discussing end of life care, however they can also be used to designate a health proxy. There are two main options for advance directives: Living Wills and Durable Power of Attorney for Health Care. These two documents supplement each other, and it is helpful to do both.

A living will is the document that can help you express your wishes about medical decisions. This helps to clarify for others what decisions you would like to be made if you were unable to communicate them due to illness or injury.

A durable power of attorney for health care is the document in which a health care proxy is named. A health care proxy is someone you trust to be your voice and make any necessary health care decisions for you.

For assistance in choosing a health care proxy or determining what should go in a living will, check out the Consumer’s Tool Kit for Health Care Advance Planning developed by the American Bar Association Commission on Law and Aging in the Tools & Resources section.

Interviewing New Doctors

If your young adult has chronic health conditions or needs, it’s important that they are comfortable with their doctors: both primary and specialty care doctors. If your young adult is not comfortable with their doctor, building a partnership can become more difficult, resulting in lower quality care. Choosing a doctor can be difficult. But here are a few things that can help guide your decision:

  • Knowledge, Skill Level and Experience: Do they have the knowledge, skills or experience to effectively care for the young adult’s health needs? Are they willing to learn about these needs? Is specialty training necessary?
  • Respect and Connection: Are they approachable? Does the young adult feel comfortable with them? At times this may be more important than having the technical skills or knowledge. It just depends on the situation.
  • Don’t Expect Perfection: Don’t run at the first sign of a miscommunication or misunderstanding. Know that doctors are human, just like everyone else. They make mistakes. Communicate your concerns or feelings to see if things can be resolved.

Check out Questions to Ask When Choosing a Doctor. This may help as your young adult begins to search for their adult providers.