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
Cerebral Palsy of Louisiana - Provides direct services to persons with cerebral palsy throughout the state of Louisiana. These services are provided at no cost to the client.
Council for Exceptional Children Louisiana Chapter - Information on special education.
Lighthouse for the Blind-New Orleans - 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 Multiple Sclerosis Society
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
Children's Disabilities and Special Needs - Group forums, list servs, and discussion groups.
Easter Seals - Services, education, outreach, and advocacy.
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 Library at Georgetown University - Information resource.
Muscular Dystrophy Association - Provides healthcare and support services, advocacy, and education.
National Institute of Neurological Disorders and Stroke
National Spinal Cord Injury Association
National Survey of CSHCN - Survey findings as it relates to care coordination.
Spina Bifida Association of America - Serves adults and children with Spina Bifida.
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.
CSHS 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
U.S. Department of Education - An on-line directory of organizations that provide information and assistance on a broad range of education-related topics.
Washington Learning Systems - There are free parent education handouts.
Families Helping Families
Southeast Louisiana Families Helping Families - Serves Orleans, Plaquemines, and St. Bernard Parishes
Families Helping Families of Jefferson - Serves Jefferson Parish
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
Louisiana Disability Talk - Families of people with disabilities share information, resources, and support.
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.
Hospitals (Pediatric) in Louisiana
Children's Hospital New Orleans
Ochsner Medical Center for Children - Healthcare services 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.
The Medicaid Reference Desk - A tool to help people with intellectual and developmental disabilities find out what Medicaid can offer them.
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
Medical Home and Care Coordination
AAP Care Coordination Policy Statement - Care Coordination: Integrating Health and Related Systems of Care for Children with Special Health Care Needs.
The National Center on the Medical Home Initiative - Information on the medical home.
Medical Home Portal - This website provides family focused information on types of services most families will need as they work with providers to ensure that their children have all their medical, educational, and transition to independence needs met.
Mental Health
National Alliance on Mental Illness - Louisiana links
National Federation of Families for Children's Mental Health
Therapy and Assistive Technology
Louisiana Technology Network - Provides information on assistive technology.
New Orleans Speech and Hearing Center
Transition to Adult Healthcare, Work, and Independence
A Girl's Health and Well-Being Resource - Discusses Transition.
got transition? - Information exchange about health care transition.
Healthy and Ready to Work Initiative
National Center on Secondary Education and Transition - Technical assistance, and disseminates information related to secondary education and transition for youth with disabilities.
National Collaborative on Workforce and Disability
Transition - Customized learning plans provide an outline of next steps, and the accompanying teaching resources.
Transition Information and Resources
Health Transition Fact Sheet - Especially made for Louisiana's Youth with Special Health Care Needs
Website Directories & Search Engines for CYSHCN
Answers for Navigating Community Resources for People with Disabilities - Information about Louisiana's in-home and community-based services.
Children's Disability Information - Articles and resources for parents of children with disabilities and special needs.
Child Welfare Information Gateway - Adopting Children with Developmental Disabilities.
DBTAC Southwest ADA Center - Resource on the Americans with Disabilities Act and related disability rights laws.
Family Village - Disability related information.
HRSA Maternal and Child Health Bureau - Resource for health publications; information on programs; links to other resources; and statistical and financial data about the Maternal and Child Health, Title V Block Grants which include CSHS.
Kaiser Family Foundation - Health Information.
Learning Disabilities On-line - Information/resources on learning disabilities, and ADHD.
Medline Plus Health Information - A source for health information.
National Dissemination Center for Children with Disabilities
On-Line Resource for American's with Disabilities - Information network of disability-related programs, services, laws, and benefits.
Other
Diapers for Incontinence-Application to receive diapers
Making Wishes Come True for Louisiana Children
Special Olympics Louisiana - Provide year-round sports training and athletic competition in a variety of Olympic-type sports for all children and adults with intellectual disabilities.
Summer Camp - Free of charge, one week camp experience for Louisiana Children with Special Health Care Needs.
Children's Hospital of New Orleans Summer Camp and Resource Guide updated 2013
The Next Chapter Book Club - Provide adolescents and adults with disabilities an opportunity to read and socialize with friends. Contact your regional Families Helping Families office to find one near you.
