Resources for Families of Children with Newborn Screening Conditions or Birth Defects

Click on the name of an organization below for more information.  For other resources available to Indiana families, please call the Indiana State Department of Health's Indiana Family Helpline at (800) 433 - 0746. 

Indiana State Department of Health Resources

Children's Special Health Care Services

Children's Special Health Care Services provides supplemental medical coverage to help families of children with certain medical conditions.  Families must meet financial and medical requirements in order to receive coverage from Children’s Special Health Care Services.  Fact sheets and brochures are available on this website.

Click here for information on care coordination services provided by Children's Special Health Care Services.

Indiana Family Helpline

Communication Specialists provide information, referrals, and education to callers.  Information is given about early prenatal and child health care (including for children with special health care needs); finding Medicaid and WIC providers; assistance for emergency housing, food pantries, or help with paying utility bills; and literacy, vocational, and GED programs.

Financial Resources

Hoosier Healthwise

Hoosier Healthwise is a health insurance plan for Indiana children, pregnant women, & low-income families.  Enrolled families can choose the doctor they use.  Other health needs (prescription medicines, dental care, eye care, family planning, & mental health services) are also available as part of Hoosier Healthwise.

Other Indiana Resources for Families

About Special Kids 

A place for families & professionals in Indiana to "ASK" questions about children with special needs, to access information and resources, and to connect to family support.

Connect 2 Help

Connect 2 Help is a free, confidential telephone assistance service where families in need can get information about help with clothing, employment, food, health care, housing, legal aid, support groups, and more.  Connect 2 Help is available 24 hours a day, 7 days a week.

Early Childhood Meeting Place

The Early Childhood Meeting Place provides a central location where professionals & families can find information about resources and upcoming events.  Fact sheets are available for families in English and Spanish. 

First Steps of Indiana

Indiana's First Steps is a family-centered system that provides early intervention services for children with disabilities.  Families that are eligible for First Steps have children (from birth to 3 years old) with developmental delays and/or a diagnosed condition that may cause developmental delays.  First Steps offers 16 services, such as physical therapy, speech therapy, nutrition services, family education and counseling, and social work services.


IN*Source (also called the Indiana Resource Center for Families with Special Needs) is a parent organization that gives families information and training necessary to make sure that children with special needs in Indiana receive appropriate education and other services. IN*Source works with children from birth through young adulthood.

Indiana Protection & Advocacy Services

Indiana Protection and Advocacy Services (IPAS) is an organization that works to protect the rights of people with disabilities.  IPAS staff members include disability rights advocates and attorneys who are able to take legal action on behalf of Indiana citizens with disabilities.

Mental Health America - Indiana

Mental Health America of Indiana (also called MHAI) connects people with support groups for mental health disorders, such as depression, anxiety, and schizophrenia. 

National Resources

Kansas University Medical Center 

A website with educational information and information about disorders.

Kids Health 

A place for parents, teens, and kids to find information about health topics.

March of Dimes

March of Dimes contains information about pregnancy, caring for a baby, advocacy, and information for healthcare professionals.

National Center on Birth Defects and Developmental Disabilities (NCBDDD) 

The NCBDDD is part of the Centers for Disease Control & Prevention (CDC) and focuses on protecting people who are especially vulnerable to health risks (such as babies, children, and people with disabilities).

National Library of Medicine Genetics Home Reference 

The NLM's Genetics Home Reference can be used to look up information about specific genetic conditions, genes, chromosomes, and resources.