Resources for Children & Youth with Special Health Needs and their Families

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, care and 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 with 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, listservs and discussion groups.
• Easter Seals: Services, education, outreach and advocacy.
• Epilepsy Foundation
• Institute for Educational Leadership: A resource on educational 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 Children and Youth with Special Health Care Needs: Survey findings related 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) with 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 
  • Children's Special Health Services Transportation Assistance Program

Education

• 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 highlighting helpful resources that students with speech or language disorders may find on campus or online. 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 families.
• My Spina Bifida Book
• Pediatric Hospitals 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 (Online)

• Exceptional Parents Magazine: Advice and educational information for families of children and adults with disabilities and special healthcare needs, as well as to 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: Find out which private insurance plans, public programs and community services are available to you.
  • Insurance Fact Sheet: Specially 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.