Community support
- Family Voices Local and national links for parent support groups and legislative news. The publication list has a number of helpful brochures.
- Family Education Network has everything you need to know about sending your child to school.
- The Individuals with Disability in Education Act (IDEA) addresses your child’s rights in school.
- PACER Parent Advocacy Coalition for Educational Rights will fill in where the previous two sites may have left off.
Financial resources
- The Child Health Insurance Program (CHIP) is a partnership between state and federal goverments to provide health insurance for children from working families with incomes too high too qualify for Medicaid but to low to afford private coverage.
- Health Hippo provides hundreds of links to policy and regulatory information related to health care.
- Center for Medicare & Medicaid Services (CMS) is the federal agency which manages Medicare, Medicaid and Child Health Insurance programs. Click on the information clearinghouse section for a list of HCFA publications.
- Social Security Administration online answers a lot of questions about benefits, who qualifies for benefits as well as local offices.
- Department Of Regulatory Agencies – Contact your state department for any additional information. For example Colorado offers the following: www.dora.state.co.us, a great online brochure “What Happens When Your Health Insurance Says No”.
- Family Voices Publication List “Managed Care for Children with SHCN” is a wonderful brochure explaining managed care as well as what kind of questions to ask about your insurance coverage.
Medical information
- National Medical Home Portal is one of the best organized sites with information on education about your child’s chronic condition.
- Rare Genetic Diseases in Children A well organized site with links on financial, educational, and medical resources for children with genetic disease.
- RxList is an online pharmacy database.
Resources for parents, siblings and patients
- Bandaids and Blackboards patients and siblings tell their stories about living with a chronic illness.
- Sibling Support Network is a site for the brothers and sisters to check out.
- Internet Resources for Special Children (IRSC) has a variety of links for everything from adaptive clothing to traveling with SHCN kids.
- MUMS is a parent networking site linking together parents of special needs kids who share the same or similar diagnosis.