Parent & Family
Network Specialists

Self Advocacy

S-E-L-F Secure Empowering Life Forever

This Fact Sheet was developed to assist individuals with disabilities with self advocacy skills to ensure they receive services and supports to maintain independence in their meaningful lives.

Self-advocacy means:

  • Making choices for yourself including where you live, what services you want, who you want to live with, where you work.
  • Having healthy relationships like anyone else
  • Speaking up for yourself and your wishes
  • Making changes in your life
  • Having your voice known
  • Expressing your wishes and desires
  • Your right to refuse to participate in treatment or refuse medications
  • Finding your own doctor and making medical decisions
  • Being a part of your treatment team

How can you make these things happen?

  • Attend your meetings and speak your mind
  • Take a friend or relative with you to assist you when needed
  • Stand up for your rights
  • Have your decisions written on your treatment or medical plan
  • Put in writing any disagreements you have
  • Say what you think and why
  • Ask your doctor to explain health options

Know your rights:

  • You have the right to disagree
  • Work as part of your team to negotiate your medical and treatment needs and desires and to tell them why it is important
  • If you find you are not getting what you need you can:
    1. File your disagreement with the agency or provider for which you disagree
    2. If you do not get it fixed you can file a complaint or appeal to the director of the agency or the provider of the services
    3. If the issue is still not resolved you can file a complaint/appeal with the state agency, insurance provider, Medicaid, Medicare, etc.
    4. The final steps to resolution are to seek an advocate to assist, a pro bono attorney, or other professional to help you through this process.

The West Virginia Family to Family Health Information Center is funded by the Maternal and Child Health Bureau, Health Resources and Services Administration, U.S. Department of Health and Human Services under grant number H84MC12898