Local, Regional, and National Resources for CYSHCN and their Families

Before navigating through these resources, we suggest you download this helpful guide on how to determine if the information from a website is accurate.

Louisiana Professional Organizations and Agencies

Agenda For Children Program - Provides information on resources and publications on child health, development, and care, as well as family well-being.

Autism Society Greater New Orleans

Brain Injury Association of Louisiana

Conquering Congenital Heart Disease Louisiana Chapter  

Council for Exceptional Children Louisiana Chapter - Information on special education.

Louisiana Lighthouse for the Blind - Serving the blind and visually impaired community by providing products, services, and opportunities for independence.

Louisiana Chapter of National Cystic Fibrosis Foundation

Louisiana Chapter of the March of Dimes

Louisiana Chapter of the National Mulitple Sclerosis

Louisiana Citizen for Action Now

Louisiana Developmental Disabilities Council

Louisiana Human Development Center

National Professional Organizations and Agencies

American Academy of Pediatrics - Links to the Healthy Children webpage that offers information on child health, care, and development from infancy through young adulthood.

American Cleft Palate - Craniofacial Association

Amputee Coalition of America

American Diabetes Association

Arthritis Foundation

Children's Disabilities and Special Needs - Group forums, list servs, and discussion groups.

Easter Seals - Services, education, outreach, and advocacy.

Epilepsy Foundation

Institute for Community Inclusion - Training, clinical, and employment services, conducts research, and provides assistance to organizations to promote inclusion of people with disabilities in school, work, and community activities.

Institute for Educational Leadership - Resource on education issues.

Maternal and Child Health Knowledge Base and Library

Muscular Dystrophy Association - Provides healthcare and support services, advocacy, and education.

National Institute of Neurological Disorders and Stroke

National Kidney Foundation

National Scoliosis Foundation

National Spinal Cord Injury Association

National Survey of CSHCN - Survey findings as it relates to care coordination.

Spina Bifida Association of America 

The Global Gastroschisis Foundation

United Cerebral Palsy Association

Worldwide Education and Awareness for Movement Disorders

Programs and Services for Children, Youth, and Adults with Disabilities

The Advocacy Center - Louisiana's protection and advocacy system. Federal law requires that a protection and advocacy system operate in every state to protect the rights of persons with mental or physical disabilities.

The ARC - For people with intellectual and developmental disabilities.

Early Steps - Provides services to families with infants and toddlers aged birth to three years (36 months) who have a medical condition likely to result in a developmental delay, or who have developmental delays.

Louisiana Rehabilitation Services - Assists persons with disabilities to obtain or maintain employment and/or achieve independence in their communities.

Office for Citizens with Developmental Disabilities - Services and supports, information, and opportunities for people of Louisiana with developmental disabilities and their families.

Special Needs Alliance

CSHS Transportation Assistance Program


Exceptional Children's Assistance Center - Information and links for parents on academic environments for their child.

Louisiana Department of Education - School Services for Children with Special Health Care Needs.

Parent Advocacy Coalition for Educational Rights

Scholarships and Resources for Children with Disabilities

Resources for College Students with Speech and Language Disorders - Guide prepared by Speech Pathology Master's Programs that highlights helpful resources students with speech or language disorders may find on campus or online, and how they can use these services. It also provides links to resources for students with specific disorders/conditions such as stuttering, aphasia, autism, and more.

Families Helping Families

Southeast Louisiana Families Helping Families - Serves Orleans, Plaquemines, and St. Bernard Parishes

Families Helping Families of Greater New Orleans (FHFofGNO) - Serves Jefferson Parish and the Greater New Orleans area

Families Helping Families of Greater Baton Rouge -Serves West and East Baton Rouge, West and East Feliciana, Iberville, Pointe Coupe, and Ascension Parishes

Bayouland Families Helping Families -Serves St. James, St. John, St. Charles, St. Mary, Assumption, Lafourche, and Terrebonne Parishes

Families Helping Families of Acadiana - Serves Evangeline, St. Landry, Acadia, Lafayette, St. Martin, Iberia, and Vermillion Parishes

Families Helping Families of Southwest Louisiana - Serves Beauregard, Allen, Calcasieu, Jefferson Davis, and Cameron Parishes

Families Helping Families at the Crossroads of Louisiana - Serves Winn, Grant, La Salle, Concordia, Catahoula, Avoyelles, Rapides, and Vernon Parishes

Families Helping Families - Serves Caddo, De Soto Sabine, Natchitoches, Red River, Bienville, Bossier, Webster, and Claiborne Parishes

Families Helping Families of Northeast Louisiana - Serves Lincoln, Jackson, Union, Caldwell, Ouachita, Morehouse, Richland, Franklin, Tensas, Madison, and East and West Carroll

Northshore Families Helping Families  - Serves St. Tammany, Washington, Tangipahoa, St. Helena and Livingston Parishes

Family Voices - Advocacy organization for families of children with special health care needs.

Family to Family Health Information Centers nationwide - Provides a list of Family to Family Health Information Centers by state.

Family to Family Health Information Center (F2FHIC)

Family Support Organizations

Down Syndrome Association of Greater New Orleans

Grandparents Raising Grandchildren

Hands and Voices Louisiana

Louisiana Disability Talk - Families of people with disabilities share information, resources, and support.

People First of Louisiana

Spina Bifida Association of Greater New Orleans

Healthcare Notebooks

Building your Care Notebook - A tool to help families to become the experts on their child's care. It is also a way to maintain the lines of communication between the many providers and services that help care for a child and their family.

My Spina Bifida Book

Hospitals (Pediatric) in Louisiana

Children's Hospital New Orleans

Ochsner Medical Center for Children - Healthcare services for children.

Our Lady of the Lake Hospital for Children

Shriners Hospital for Children - Provides pediatric specialty care for children up to age 18 with orthopedic conditions, burns, spinal cord injuries, and cleft lip and palate are eligible for care and receive all services regardless of the patients' ability to pay.

Tulane Hospital for Children - Healthcare for children.

Magazines On-Line

Exceptional Parents Magazine - Advice and educational information for families of children and adults with disabilities and special healthcare needs, as well as to the professionals.

Medicaid/Medicare/Social Security/Insurance

Bayou Health - Louisiana Medicaid and LaCHIP program is called BAYOU HEALTH. In BAYOU HEALTH, you choose a Health Plan and doctor for each member of your family who has Medicaid or LaCHIP.

Supplemental Security Income - A Federal income supplement program to help aged, blind, and disabled people, who have little or no income; and, provide cash to meet basic needs for food, clothing, and shelter.

Medicaid Resource Guide - A resource to help find out what Medicaid can offer you.

Social Security Administration - Benefits For Children With Disabilities.

Health Insurance -Explore your coverage and pricing options - Find out which private insurance plans, public programs, and community services are available to you.

Insurance Fact Sheet - Especially made for Louisiana's Families with Children and/or Youth with Special Health Care Needs

Servicio Especial de Salud para Niños Informacion de Seguro

Healthcare.gov- find healthcare coverage that meets your needs and budget.