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.

Managed Care Links This site provides links to health care information from state agencies, Medicaid agencies, technology sites, publications, managed care plans and consumer information.

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.