SEPTA Chat - is an informal group where you can come to have some coffee, meet with other Garden City parents, share information and get support from others who may have similar concerns. To be included, contact president@gcsepta.org.
A Guide for Grandparents: A Resource Provided by the National Autism Association Answers to Common Questions & Concerns Relating to Autism Spectrum Disorders Grandparents_NAA Toolkit_1017_hi res with links
Band of Angels As a comprehensive support group directory, Band of Angels is dedicated to creating greater understanding of the full and rich lives of people with differences by helping parents, educators, persons with disabilities and medical professionals recognize the true potential of all people.
Family Center - Nassau (for parents & guardians raising a child with a mental health diagnosis)
Hofstra Counseling and Mental Health Professions Clinic This group will not focus specifically on any one disability, but will provide support and information of a broad nature. Hofstra University, 131 Hofstra University, The Joan and Arnold Saltzman Community Services Center, Hempstead, NY 11549. Call today to register, 516-463-5234.
NAMI - National Alliance on Mental Illness
Nassau/Suffolk Autism Society NSASA is a volunteer organization of parents who have children and adults with autism spectrum disorders. Though not a service provider, their fundraisers provide monies that enable them to assist families with support groups as well as social, recreational and educational opportunities. All of the funds they raise go right into Long Island community-based programs.
NDSS - National Down Syndrome Society The mission of the National Down Syndrome Society is to be the national advocate for the value, acceptance and inclusion of people with Down syndrome.
The New York State Office for People With Developmental Disabilities (OPWDD) is responsible for coordinating services for more than 128,000 New Yorkers with developmental disabilities, including intellectual disabilities, cerebral palsy, Down syndrome, autism spectrum disorders, and other neurological impairments. It provides services directly and through a network of approximately 750 nonprofit service providing agencies, with about 80 percent of services provided by the private nonprofits and 20 percent provided by state-run services.
OPWDD’s Information Line is designed to help people get answers to questions about supports and services for individuals with developmental disabilities in New York State. It is also used to take complaints of alleged misconduct, fraud, waste and abuse in our service system. Download a copy of our Information Line brochure. Call OPWDD’s Toll Free Information Line at 1-866-946-9733
Long Island Developmental Disabilities Service Office Service Coordinators List
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Access Coordination Services - Assist with the initial OPWDD (Office for People with Developmental Disabilities) Eligibility Determination process. Connect eligible individuals and their families to Medicaid Service Coordinators, Care Coordinator and Family Support Brokers. Support families in navigating the system and expediting their HCBS (Home and Community Based) Medicaid Waiver process. Assist families in identifying and hiring OPWDD funded staff, (community habilitation workers, job coaches, respite workers and more), etc.
Long Island Family Support Services Advisory Council Family Support Services Grant Programs The Grant List is comprised of agencies that provide Family Support Services to individuals eligible for OPWDD services who do not necessarily have Medicaid. It lists Non-Medicaid Service Coordinators. This is a comprehensive listing of all Family Support Grants in Nassau and Suffolk Counties. Services are funded by the New York State Office for People with Developmental Disabilities (OPWDD) through the local Long Island Office.
Parent to Parent Long Island office (Located within the offices of OPWDD) 415-A Oser Avenue, Hauppauge, NY Parent to Parent runs an informal monthly support group for parents navigating their child's special needs. Working with peer facilitators/mentors, this informal group offers a gathering space for sharing the journey of parenting child with special needs. The group will talk about concerns that span all age groups and to create community and inspire, empower or just listen. Space is limited. To RSVP call or email Valerie Colavecchio-Reid at 631-434-6196 ext 13 or vreid@ptopnys.org or visit www.ptopnys.org for more information.
Parent to Parent of NYS - Free Webinars these are a great way to get important information right from your home. Click here for the current list of Webinars.
List of 40 + Facebook Groups for Special Needs Families
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Respite Workers and other Caregivers
https://joshin.com Find background checked caregivers with specialized experience near you.
https://www.supportal.org Thousands of DSPs, Therapists, Respite Workers and other Caregivers available on Supportal.
http://www.issny.org Independent Support Services, Inc. (ISS) facilitates and delivers Self-Directed and individualized supports to people with developmental disabilities.
Sibling Support
Family Support TookKit from Autism Speaks
CONNECTIONS: A PROGRAM FOR CHILDREN WITH AUTISM AND THEIR SIBLINGS Connections is a supportive bond-building program for children with autism and their siblings. The Program provides social, communication and leisure skill instruction for children with autism, support for siblings and inclusive sibling interaction opportunities. Instruction is provided by faculty and graduate students from multiple departments from the LIU Post, including Counseling & Development, Psychology, Communication Sciences & Disorders, Special Education & Literacy, and Health, Physical Education & Movement Science. This program is made possible by a grant from the Doug Flutie Jr. Foundation for Autism and Autism Speaks.
The Family Center for Autism Sibling Support Group Life's WORC Family Center for Autism's Sibling Support Groups are FREE programs that focus on this overlooked dynamic through age-appropriate themed play. Through the theme, the facilitator will address many topics that siblings will often times never express: anger, resentment, loneliness, having more responsibility, difficulty with their sibling or even playing with their sibling. Sibling Support Groups are held on Tuesday evenings from 5:30-6:30 p.m. at The Family Center for Autism in Garden City.
SIBS Club - a program for children with autism and their families. During each 10 week program, children with autism and their typically developing siblings attend 2 hour sessions each week. They focus on meeting the individual needs of each child and also fostering a relationship between the siblings. For the first hour children with autism receive individualized instruction focused on skills necessary for successful interactions with their siblings. At the same time siblings participate in their own group focused on their own needs. During the second hour, all the children come together for a supported inclusive recreational time in which we support sibling interactions during fun gross motor activities including stretches, relay races, and freeze dance! For details click here.
Sibshops - Workshops for Siblings of Children with Special Needs Sibshops are best described as opportunities for brothers and sisters of children with special health and developmental needs to obtain peer support and education within a recreational context. For more information visit www.siblingsupport.org