Online Resources
Advocating for Special Needs Children
Brain Injury
Chronic Illness
Developmental Disabilities
Early Education
Healthy Child Development
Hospitals
Palliative Care
Berevement
Parenting
Resources
Safety
Support Services
Speech Therapy
Brain Injury
Traumatic Brain Injury & Coma Recovery Program at St. Mary’s Hospital for Children
Brain Injury Association of America
The Perspective Network
Brain Injury Association of New York State
Association for Neurologically Impaired Brain Injured Children, Inc.
Chronic Illness
HIV/AIDS
AIDS Center of Queens County
Pediatric AIDS Foundation
Reachout Health Care America
Cerebral Palsy
Conductive Education Center of Long Island
United Cerebral Palsy of New York City
Asthma
The Children’s Asthma Education Centre
American Academy of Allergy, Asthma and Immunology
Cancer
Camp Adventure
American Cancer Society
Diabetes
Juvenile Diabetes Research Foundation
Developmental Disabilities
Queens Parent Resource Center
Interagency Council of Mental Retardation and Developmental Disabilities
Autism
Aspergers Disorder
Autism and PDD Network
Association for Metroarea Autistic Children, Inc
Autism Society of America- Queens Chapter
Autism Speaks
Pervasive Developmental Disorders (PDD)
Communication Disorders
National Institute on Deafness and Other Communication Disorders
Speech and Language Disorders
Early Education
New York City Department of Education web site
New York State Department of Education web site
Family Resources
The Children’s Health Fund
March of Dimes
National Heart, Blood, and Lung Institute
American Diabetes Association
FDNY
Con Edison
Department of Health
Healthy Child Development
What is Child Development?
Early Intervention at St. Mary’s Hospital for Children
Early Childhood Direction Center
Developmental Milestones – Information for Parents
Developmental Screenings – Information for Parents
National Parent Information Network
American Academy of Pediatrics
Kids Health
Hospitals and Healthcare Systems
American Hospital Association
New York – Presbyterian Healthcare System
Metropolitan Jewish Healthcare System
Palliative Care
St. Mary’s Palliative Care Program
Caring Connections
A program of the National Hospice and Palliative Care Organization (NHPCO), a national consumer and community engagement initiative to improve care at the end of life.
Berevement
Compassionate Friends
Offers support, friendship, and understanding to families who have experienced the death of a child.
Compassionate Friends Internet Sibling Resource
Sibling chat room available for adults and teens to share concerns and feelings about the loss of a sibling. Also offers pen pal program for bereaved siblings of any age to meet other bereaved siblings with similar interests.
Bereaved Parents of the USA
Designed to aid and support bereaved parents and their families who are struggling to survive their grief after the death of a child. Information and referrals, newsletter, phone support, conferences, support group meetings. Assistance in starting groups.
Alive Alone, Inc
Self-help network of parents who have lost an only child or all of their children. Provides education and publications to promote communication and healing, to assist in resolving grief and to develop means to reinvest lives for a positive future. Bi-monthly newsletter.
The M.I.S.S. Foundation
Offers emergency and ongoing support for families suffering from the loss of a child. Provides information, referrals, phone support, newsletter, pen pals, literature, advocacy, and online chat room support.
AGAST
Dedicated to assisting grandparents after the loss of a grandchild.
Parenting
How parents can help their child cope with a chronic illness?
Caring for a seriously ill child
Communicating with a critically ill child
Respite Care at St. Mary’s Hospital for Children
National Dissemination Center for Children with Disabilities
Resources
American Medical Association
Children’s literature
Healthcare Association of NY State
NYS Dept of Health Topics A-Z Page
Healthfinder – A variety of Health topics and information from the National Health Information Center
National Association for Home Care
Child Health Plus
The Marty Lyons Foundation
Spinal Cord Injury
Independent & Community Living
Brooklyn Center for the Independence of the Disabled, Inc
Vocational and Educational Services for Individuals with Disabilities
Institute for Community Living
LifeLine Support
A government program that offers qualified people a discount on their monthly local telephone bill. Each state has its own guidelines to qualify.
Suffolk Independent Living Organization
Child Welfare
NYC Administration for Children’s Services
NYS Department of Family Assistance
NYS Department of Child and Family Services
Adoption & Foster Care
Foster Care Information from the NYS Office of Children and Family Services
Association to Benefit Children
Medicaid
Supplemental Security Income (S.S.I.)
Social Security Supplemental Income Web Site
Monthly cash benefits to a low income family having a child with a disability. Not all children with disabilities will qualify. Get as much detailed medical and social/emotional documentation as possible before applying.
Safety
Support Services
Candle Lighters
Center for Family Support
Brave Kids
Bereavement and Loss Center of New York
Heartbridge Center for Loss and Transition
Compassionate Friends
Speech Therapy
American Speech-Language-Hearing Association
Flexible Endoscopic Evaluation of Swallowing with Sensory Testing
www.passy-muir.com
A website that provides information on the benefits, clinical resources and research on Tracheostomy & Ventilator Swallowing and Speaking Valves.
Advancing Human Expression and Learning
VitalStimTherapy
Information about VitalStimTherapy, the first proven treatment for dysphagia, which uses small electrical currents to stimulate the muscles responsible for swallowing. At the same time, trained specialists help patients “re-educate” their muscles through rehabilitation therapy.
Family Resources
Noor Sabah
Iraqi Girl Finds Hope at St. Mary’s
St. Mary’s opened our doors and hearts to a small child from Iraq who was born with a facial deformity, which if left untreated, would seriously affect her ability to eat and speak. Through the persistent efforts of Lt. Jesse Damsky, company commander in the Army Reserve, Noor and her mother arrived in New York where staff members at St. Mary’s quickly began care.
