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Other Resources

This page offers various helpful resources in support of families with special needs children. Research has shown that families who are informed about their child's diagnosis and condition are better able to actively participate in the Medical Home team, ensuring that their child receives the best care possible.
Links to national organizations are included in the body of this page while links to state organizations are included at the bottom of the page under "Resources".

Advocacy

  • Pacer Center
    A parent advocacy site covering a wide variety of topics including education; community support; training for parents; and teen transition to employment for special needs kids.
  • National Association for Home Care
    Provides current news about homecare-related legislation; also includes a homecare agency locator. 202-547-7424
  • Family Caregiver Alliance
    Provides information, education, services, research, and advocacy to support family caregivers.
  • Technical Assistance Alliance for Parent Centers
    Links to local Parent Centers which serve as resources for education and training for parents of children with disabilities; provide local conferences; provide support groups; provide autism information; assist parents in advocacy and finding school and other local services; and more. Funded by OSEP.
  • Parent to Parent USA
    A national non-profit organization that provides support to state Parent to Parent organizations; provides links to state organizations; provides a Matching Listserv to help organizations connect families to each other for support; and provides links to other organizations that serve families.
  • National Federation of Families for Children's Mental Health
    A national family-run organization that provides support for local chapters; provides information for policy-makers and agencies that develop and provide services; provides training to parents and professionals to foster partnerships; and provides conferences to help improve practice.
  • State Government Links
    Hosted by the federal government, this web site provides links to official web sites of states and territories of the United States.

Emergency Medical Information

Estate Planning/Guardianship

  • American Bar Association Commission on Mental and Physical Disability Law
    Provides information on all aspects of the Americans with Disabilities Act, the Family and Medical Leave Act, and related legislation, including caregiver rights.
  • Arc of the United States
    Works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community.
  • Special Needs Trust
    A comprehensive discussion of special needs trusts from the National Institute on Life Planning for Persons with Disabilities.
  • Special Needs Trustee Selection (PDF Document)
    Provides information about special needs trusts including trustees and oversight.
  • Estate Planning
    Information on estate planning and the disabled from the University of Pittsburgh School of Law.
  • National Guardianship Association
    The website is an excellent source of information on the rights and responsibilities of the incapacitated individual, as well as the guardian. The site also has resources and provides educational training and network opportunities for guardians.

Family Supports

  • American Academy of Pediatrics
    Provides information for pediatric providers including health information; practice guidelines; publications including the journal "Pediatrics"; professional education resources; advocacy information; and links to local chapters. Also includes a Parenting Corner for families.
  • Arc of the United States
    Works to include all children and adults with cognitive, intellectual, and developmental disabilities in every community.
  • Easter Seals
    Community and family support, respite programs, and current legislative action for people with disabilities.
  • Caregiver Media Group
    Site includes "Today's Caregiver" magazine, conference information, newsletters, discussion lists, chat room, and more.
  • KidsHealth.org
    KidsHealth is the largest and most visited site on the Web providing doctor-approved health information about children from before birth through adolescence. This site offers numerous easy-to-read articles on kids' health, written for parents, teens and kids.
  • Respite Locator
    Website provides detailed information on local respite programs nearest you.
  • Sibshops: workshops for siblings of children with special needs
    The home website of Sibshops, a program to address the needs of siblings.
  • Uniquely Gifted
    This site focuses on "twice exceptional" children, that is, intellectually gifted children with special needs such as ADHD, learning disabilities, Asperger Syndrome, etc., who have a hard time of it in our education system.

Financial Support

  • SSI Benefits for Children with Disabilities
    This booklet is for the parents, caregivers or representatives of children under age 18 who have disabilities that might make them eligible for Supplemental Security Income (SSI) payments.
  • SSI Beneficios Para Niños con Incapacidades
    Este folleto es para los padres, cuidadores o representantes de niños con incapacidades menores de 18 años, que podrían tener derecho a recibir pagos de Seguridad de Ingreso Suplementario (SSI, sus siglas en inglés).
  • State Children's Health Insurance Program (SCHIP)
    This is the official U.S. government site for SCHIP services; information includes eligibility, enrollment and general information about health insurance for kids.

Managing and Coordinating Care

  • American Association for Home Care
    Provides information about home care, legislation, news, and events; contains a directory of members.
  • Center for Children with Special Health Care Needs
    Focuses on improving systems of care for children with special needs through education, research and evaluation. Our work impacts policy, quality of care, education and family partnerships in health care. Offers organization tools, health education and injury prevention resources and a medical home toolkit.
  • Family Caregiver Alliance
    Provides information, education, services, research, and advocacy to support family caregivers.
  • Empowering Caregivers
    Provides information, support, and links for caregivers.
  • Caregiver Media Group
    Site includes "Today's Caregiver" magazine, conference information, newsletters, discussion lists, chat room, and more.

Medical Information Sites

  • American Academy of Pediatrics
    Provides information for pediatric providers including health information; practice guidelines; publications including the journal "Pediatrics"; professional education resources; advocacy information; and links to local chapters. Also includes a Parenting Corner for families.
  • American Academy of Family Physicians
    Provides information for family practice providers and residents including health information; practice guidelines; publications including the journal "American Family Physician"; professional education resources; advocacy information; news; and links to local chapters. Also includes sections for patients.
  • Children's Hospital Boston
    To learn more about many pediatric conditions and the treatment options, visit the Children's Hospital Boston home page and click on 'Child's Health A-Z' for user-friendly information.
  • GeneTests.org Glossary
    Offers definitions, further links, and some case examples for most genetic terms. Aimed at health professionals, but may be very helpful for families also. Glossary for NF1 related terms.
  • Genetics Home Reference Glossary
    An extensive list of genetic terms with definitions, compiled from other sources. Site is sponsored by the National Library of Medicine.
  • Center for Health and Health Care in Schools
    Offers reports on policies, politics, and financing of health programs in schools, including specific questions on HIPAA-related issues.
  • U.S. Department of Health & Human Services
    Official government website. Offers detailed information on health, safety and well-being.
  • HIPAA Frequently Asked Questions
    Search for information about HIPAA on the U.S. Department Health and Human Services site.
  • healthfinder.gov
    This is an award-winning Federal Web site for consumers, developed by the U.S. Department of Health and Human Services together with other Federal agencies. Enter your term in the search box for easy to use definitions and current information.
  • Health On the Net Foundation (HONcode)
    is the website for an organization that certifies web sites that comply with their Code of Conduct aimed at standardizing reliability of health information on the web. Sites that meet the criteria and have been certified will display the HONcode symbol.
  • Medical Abbreviations Dictionary
    From MediLexicon, provides information about abbreviations in the healthcare, medical, pharmaceutical, and biotech fields.
  • National Organization of Rare Disorders (NORD)
    Provides information about many uncommon conditions, including rare "orphan" diseases, and links to organizations that provide services to individuals with rare diseases.
  • Nemours
    This site provides information and articles on kids' health, written for physicians, parents, teens and kids.
  • Online Medical Dictionary
    From the CancerWEB Project, this dictionary includes terms related to biochemistry, cell biology, medicine, molecular biology, and other medical-related sciences.
  • Quackwatch
    provides quackery-related information in an effort to improve the quality of health information on the Internet.
  • Virginia Polytechnic Institute and State University
    offers a section on Research Skills as well as portals to full-text electronic journals.
  • Let's Talk About Brochures
    Over 150 downloadable brochures on topics of child health and safety: examples - storing breastmilk; Nissen fundoplication; cerebral palsy.

Fact Sheets for Families

Information, tips, and national resources from the Utah Family Voices Health Information & Support center.

Resources

Information & Support

For Parents and Patients

Association for Utah Community Health (AUCH)
A grassroots action center providing resource tools and a database for advocates.

Legislative Coalition for People with Disabilities (LCPD)
Advocates for public policy affecting all people in the State of Utah who have disabilities.

Utah Parent Center
This statewide non-profit organization, founded in 1984, provides training, information, referral and assistance to parents of children and youth with all disabilities, including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities. The Center provides information on support and advocacy for families of children with special health care needs.

Utah State Legislature
Read about the progress of bills, laws and other legislative issues.

Utah Parent Center
This statewide non-profit organization, founded in 1984, provides training, information, referral and assistance to parents of children and youth with all disabilities, including physical, mental, hearing, vision, learning, behavioral, and emotional. Staff consists primarily of parents of children and youth with disabilities. The Center provides information on support and advocacy for families of children with special health care needs.

Mountain Plains Regional Resource Center
The Parent Training and Information Centers (PTIs) are part of a nationwide network of nonprofit organizations funded by the U.S. Dept of Educ. Services may include resource libraries, parent-to-parent support opportunities, newsletters, conferences, and workshops.

Special Education Services in Utah
Utah State Office of Education provides links to national and state organizations, instructional links, Utah's Behavior Initiative, School Districts, a Special Education Directors List, and more.

Disability Law Center
A private non-profit organization designated by the Governor to protect the rights of people with disabilities in Utah. Mission: To enforce and strengthen laws that protect the opportunities, choices and legal rights of people with disabilities in Utah.

Guardianship for Adults in Utah (PDF Document 160 KB)
This document from the Disability Law Center provides information about types of guardianship, procedures, alternatives, and Utah resources for families considering guardianship for youth.

Guardianship Associates of Utah
Provides information and referral service for guardianship issues. Written materials, kits, and presentations are available; can help families obtain guardianship on an incapacitated family member; may be able to act as a legal guardian for incapacitated persons who have no family able to do so.

Office of Public Guardian, Utah
Provides public guardianship and conservatorship services to incapacitated adults. 801-538-8255.

Utah County Resources for Infants and Children (PDF Document 162 KB)
This handout lists selected community services in Utah County with a focus on infants and young children.

Family Support Information and Organizations, Utah (PDF Document 33 KB)
A list of National and Utah organizations that provide support, informaiton, and resources to families of children with special health care needs.

Salt Lake County Child Abuse Resource Directory 2008 (PDF Document 168 KB)
Compiled by the Salt Lake County Chilren's Justic Center, the directory provides information and numbers for reporting child abuse and accessing services including child protective services, legal services, domestic violence resources, teen pregnancy resources, mental health resources, protective order resources, hotlines, and more.

A Guide to Pediatric Audiologists in Utah 2006 (PDF Document 185 KB)
A Guide to Pediatric Audiologists in Utah provides information from a statewide survey of licensed audiologists in May 2006. It should not be viewed as a complete resource directory or as an endorsement of any specific agency. Provider services were self-reported and not verified by the Utah Department of Health.

National Alliance for Drug Endangered Children
Provides information and resources to help professionals help children of parents or caregivers who make or use drugs.

Utah Alliance for Drug Endangered Children
State chapter that provides information and resources to help professionals help children of parents or caregivers who make or use drugs. Site includes medical protocols for doctors.

Helpful Articles

Publications

Michelle Emmert.
I'm the Big Sister Now.
Morton Grove, IL: Albert Whitman & Company; 1989. 0807534587 http://www.amazon.com/Big-Sister-Now-Michelle-Emmert/dp/0807534587
Nine-year-old Michelle describes the joys, loving times, difficulties, and other special situations involved in living with her older sister Amy Emmert, who was born with cerebral palsy.

Mary Thompson.
My Brother, Matthew.
Bethesda, MD: Woodbine House; 1992. 0933149476 http://www.amazon.com/My-Brother-Matthew-Mary-Thompson/dp/0933149476/r...
Though David knows frustration and resentment at times, he feels he understands his little brother with a disability even better than his parents; and together the two boys experience a great deal of joy.

Galvin M.
Otto Learns About His Medicine: A Story About Medication for Children With ADHD.
3rd ed. Washington DC: Magination Press; 2001. 1557987726 http://www.maginationpress.com/4417726.html
Otto, a fidgety young car, has trouble paying attention in school, has trouble remembering important information, and is unable to listen long enough to learn how to drive. Otto and his parents visit a special mechanic who explains about "car medicine" that can help him control his behavior. This delightful story addresses the concerns felt by children who have been prescribed drugs to reduce hyperactive behavior.

Kim Carlisle.
The Special Raccoon: Helping Children Learn about Handicaps and Love.
Far Hills, NJ: New Horizon Press; 1995. 0882820966 http://www.newhorizonpressbooks.com/sm_teaching/specialracoon.php3
This is a story that will help the reader gain an understanding of what it means to be physically and mentally challenged.

Cindy Meyers.
Rolling Along with Goldilocks and the Three Bears.
Bethesda: Woodbine House; 1999. 1890627127 http://www.woodbinehouse.com/main.asp_Q_product_id_E_1-890627-12-7_A_....
In this updated version of a familiar folktale, baby bear gets around in a wheelchair and has a motorized bed which fascinate Goldilocks when she becomes friends with him after her surprise visit to the three bears' house.

Stephanie Stuve-Bodeen.
We'll Paint the Octopus Red.
Bethesda: Woodbine House; 1998. 1890627062 http://www.woodbinehouse.com/synopsis.asp?product_id=1-890627-06-2
Emma and her father discuss what they will do when the new baby arrives, but they adjust their expectations when he is born with Down syndrome.

Authors

Authors: Gina Pola-Money, 12/2003
Chuck Norlin MD, 12/2003
Reviewing Author: Alfred Romeo RN, PhD, 9/2008
Content Last Updated: 9/2008