Children with Special
Health Care Needs
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Advocacy

This page offers information about becoming an advocate for your child or yourself; taking a respite break to take care of yourself; taking a more active role in making a difference in your community and country; and finding community organizations that can help you find new resources and services. Sometimes youth are unable to advocate for themselves and need their parents to continue to be their advocates by establishing guardianship before the youth becomes an emancipated adult at age 18.

Advocacy: Articles

    Everyone Can Bloom from the Disability Law Center.
  • Self-Determination: What Is It? Why Is It Beneficial? How Is It Best Taught? (pdf)
    This article, mainly for providers and educators, discusses self-determination and research showing higher income, better mental health, and greater academic success for those with more self-determination. It includes tips for adults and students, from the Center for Educational Networking in Michigan.
  • Becoming a Self-Advocate
    This page on the Medical Home Portal provides an introduction to self-advocacy for youth, young adults, families, and Medical Homes. It includes links to youth-friendly web sites.
  • Advocating for Your Child
    This page on the Medical Home Portal provides an introduction to advocacy for parents.
  • Wisconsin Statewide Transition Initiative
    This page contains a variety of fact sheets including ones that discuss self-advocacy and self-determination.

Guardianship

    Mural.
  • General Guardianship Information
    Your child's school staff or benefits caseworker may or may not ask you about your plans for guardianship. Please learn more before your child turns 18, even if you do not think you will need guardianship. Courts usually grant a limited guardianship (medical, financial, etc.) unless a full guardianship is determined by the court to be necessary. Even if parents think that it is obvious that their child will not be able to make legal decisions, guardianship is required for parents to make those decisions after the child turns 18 years old.
  • Guardianship and Estate Planning
    Learn about the importance of exploring guardianship for children who are unable to make their own legal decisions before they turn 18-years-old and parents lose the legal ability to make those decisions. This page on the Medical Home Portal discusses special needs trusts, offers sample guardianship letters for doctors, and has links to more information.
  • Utah Office of Public Guardian
    This is the state agency responsible for providing public guardianship and conservatorship to incapacitated adults and offers assessments for guardianship, informaiton about alternatives to guardianship, information about petitioning the court for guardianship, and more. The site provides information, publications, links to events, and links to related organizations.

Crisis/Emergency Respite: Articles and Links

  • Crisis Intervention Team of Utah
    These police officers have been trained to respond to situations involving a person experiencing a mental health crisis. Partnerships are established between law enforcement agencies and mental health resources.
  • Respite Care
    This page on the Medical Home Portal provides an introduction to respite care and links to national web sites to find services in your area.
  • Services on the Medical Home Portal
    Sometimes parents need a break from providing 24-hour-a-day care for their youth or young adult. Crisis and emergency respite care is usually available through public or private providers. To find these providers that serve individuals with special health care needs, scroll down the Serivces list to "Child Care and Respite" and see "Crisis/Emergency Respite."

Social Responsibility: Articles and Links

    Everyone Can Be President from the Disability Law Center.
  • Voting
    • Determined to Vote
      See the "Determined to Vote" section for informaiton about voting for people with disabilities including hints for getting involved, how to ask for accomodations, and your rights.
    • Voter Registration Information
      Find out how to vote, when to register, requirements, and more from this official State of Utah website.
    • My Voice, My Vote
      Information about voting in Minnesota and other states; links to other websites about voting. See the My Voice, My Vote video on YouTube.
  • Selective Service Registration
    Once young men reach their 18th birthday, they are required to register for the Selective Service.
  • Power in You, Disabilities
    A non-profit organization chaired by Utah's First Lady Mary Kaye Huntsman that aims to give teens hope by providing them with inspirational stories from young adults. Read the stories or get involved to help others.

Community Organizations and Services

    Utah Capitol.
  • Bridge to the Future
    An online training that covers many topics including education, employment, disability services, self-advocacy, and more.
  • Disability Law Center
    Protection and advocacy for persons with disabilities; legislative advocacy; Everyone Can Project; and more.
  • Family Voices of Utah
    Families with CYSHCN can find other families and network to share helpful hints and resources. This page, on the national Family Voices site, also lists more community resources for families. Also see the Utah site for Fact Sheets on a variety of issues including air travel, depression, genetics, Medicaid D, obesity, oral health, and more.
  • Family Support and Information Organizations
    A list of National and Utah organizations that provide support, informaiton, and resources to families of children and youth with special health care needs.
  • Medical Home Portal
    Provides an extensive list of community services including 211 services, non-profit services, medical providers, and dentists.
  • Rape Recovery Center
    Empowers people victimized by sexual violence; offers advocacy, crisis intervention, therapy, community education, and related links.
  • Utah Developmental Disabilities Council
    Advocacy organization for people with disabilities; provides a calendar of events, People First information, newsletters, Determined to Vote, and more.
  • Utah Parent Center
    Provides information for parents, From 'NO' Where to 'KNOW' Where transition training, E-Connections newsletters, and Family Links conference information.

Thank you to the BLT Project for reviewing and improving these pages.

Page last updated

44 N Mario Capecchi Dr * PO Box 144610 * Salt Lake City UT 84114-4610
Monday through Friday, 8 AM - 5 PM