Resources for Families
One goal of the CMR is to connect families with available resources.
New York State Department of Health Resources
- Child Health Plus
Child Health Plus is a health insurance plan for kids. Depending on your family's income, your child may be eligible to join either Children's Medicaid or Child Health Plus.
- Family Support Resources
The Children with Special Health Care Needs Program seeks to improve the system of care for children with special health care needs from birth to 21 years of age and their families.
- Resource Directory for Children and Young Adults with Special Health Care Needs
This resource directory, available multiple languages, is for the families of children and young adults who have a serious illness or long-lasting condition for which they need extra health care and support services.
- Early Intervention Program
The Early Intervention Program offers therapeutic and support services to eligible infants and toddlers with disabilities and their families.
- Newborn Screening Program
Because many disorders can be effectively treated with early diagnosis and treatment, this program screens newborn babies for more than 40 congenital disorders.
- Office for People With Developmental Disabilities
This office works to further the prevention and early detection of developmental disabilities. It is responsible for coordinating services for affected populations.
- Congenital Heart Defects and Children with Special Needs Resource Sheets
These two publications list resources to help families find information, services, support for children born with heart defects or other special needs.
Other New York Resources
- Easter Seals – New York
Easter Seals provides services, such as child development centers, physical rehabilitation and job training, for people with disabilities and their families in their local communities.
- Ferre Institute
Ferre Institute promotes the health of individuals and families by providing information and education about genetics, infertility, environmental exposures, and family history.
- Healthy Families New York
This program offers home-based services to expectant families and new parents, starting prenatally or shortly after the birth of the child. Qualified participants can receive long-term, in-home services until the child is in school or Head Start.
- March of Dimes – New York
March of Dimes provides information about pregnancy, caring for a baby, advocacy, and information for healthcare professionals.
- New York State Office of Alcoholism and Substance Abuse Services
This organization educates about the risk of alcohol use during pregnancy and Fetal Alcohol Spectrum Disorders, a leading known preventable cause of brain damage, developmental disabilities, and birth defects.
- New York State Genetic Counselors
This source provides information about genetic counseling, genetic counselors, and the families they serve.
- Parent to Parent of New York State
Parent to Parent is where families of individuals with special needs and the professionals who serve them can meet for support and to share information.
- Brave Kids
- Genetic Alliance Disease InfoSearch
- The Magic Foundation
- Makoa - Disability Information and Resources
- National Birth Defects Prevention Network
- National Organization for Rare Disorders
- Zero to Three - National Center for Infants, Toddlers and Families
Pregnancy Loss and Infant Death Resources
- Pregnancy Loss and Infant Death Alliance
- Compassionate Friends - Supporting Family After a Child Dies
- March of Dimes
- Perinatal Hospice Resources
- New York Hospice Listing
Specific Defect Resources
For information on defect-specific resources, please visit our Information on Specific Defects page.
Printable Materials for Families
- Congenital Heart Defects Resources
- Resources for Families of Children with Special Needs
- 10 Things You Should Know About Birth Defects
- 5 Things You Need to Know about Congenital Heart Defects
- What You Should Know About Folic Acid
Do you know of other available resources for families of children with birth defects? Email your suggestions to firstname.lastname@example.org.
- understand your perceived value of the materials mailed to your family; and
- gather suggestions from you on how we can improve the information content and delivery.
Participation in this survey is voluntary and anonymous; however, your responses will go a long way to improving our mode of operation.
If your child was born with a birth defect, your child's doctor may have discussed with you the specific aspects of your child's medical condition. However, there may be additional services and support available to you, your child, and your family.
Visit our Resources for Families page for a list of resources that may be useful. If you have any questions, please contact your doctor or our Growing Up Healthy Hotline at 1-800-522-5006.
If you are a health care professional or researcher, visit our Resources for Health Professionals & Researchers page.