Resource Directory
Resource Directory
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Applied Behavior Analysis
- ADHD & Autism Psychological Services and Advocacy - ADHD & Autism Psychological Services and Advocacy specializes in assessment and treatment of neurodevelopmental disorders including ADHD and Autism. Based in Utica and Syracuse
- Association for science in autism treatment - Online Resource Directory, Association office located in New Jersey
- Autism Learning Partners - Autism Learning Partners have 2 locations in Rochester.
- Center for Autism and Related Disorders - Located in Fairport, NY. Local office of the CARD national organization
- Institute for Child Development - Located at Binghamton University
- The Kelberman Center - ABA services for families in Utica and Syracuse
- New York State Association for Behavior Analysis - Statewide
- Operation Autism Fort Drum (This is only for military families.)
- Proud Moments - Providing ABA therapy to families in the Rochester, NY region
- The Summit Center - Located in Buffalo, the Summit Center provides an early intervention ABA program
- Upstate Golisano Children's Hospital - Severe Behavior Program, Located in Syracuse
Families should contact their insurer to determine if this is a covered service and for recommendations for providers.
Advocacy
- Empire Justice Center - The Empire Justice Center's mission is to protect and strengthen the legal rights of people in New York State who are disabled, poor, or disenfranchised through high quality individual and systems change advocacy.
- Finger Lakes Parent Network - A parent-governed organization, focused on the needs of children and youth with emotional, behavioral, developmental, or mental disorders and their families. Their mission is to support and empower families so that they can improve the quality of their lives and help their child to achieve his or her full potential within the community.
- New Directions Youth and Family Services - A family support coordinator (FSC) works with families of children having an emotional, behavioral, or socially handicapping condition. The FSC oversees the provision of three support groups for parents and provides support, advocacy, educational resources, and information regarding special education services. This program is funded by the New York State and Niagara County Offices of Mental Health.
- New York Yellow Pages for Kids with Disabilities - A resource directory assisting with finding educational consultants, psychologists, educational diagnosticians, and health care providers among others.
- Parent to Parent New York State
- Starbridge, Inc. - The goal of Starbridge is to deliver consumer-driven services including information sharing, individual advocacy support, service coordination, and educational workshops to support people with disabilities and their families.
- Families Together in New York State: Western Region Family Services Directory - A resource directory assisting families with finding services, advocacy, and information.
- Youth Advocacy Program - A program of the Legal Aid Society of Rochester. The purpose of the Youth Advocacy Program is to provide legal representation, educational advocacy, advice, and counsel to youth and their families in education related cases. Cases can involve issues of access to school, residency, special education and long-term suspension.
- Family Voices - Provides advocacy for families of children with disabilities.
Education and Learning
- Back to school transition tool for Fall 2020 - For many, the transition back to school may be complicated by COVID-19. The “Student Snapshot” can be used to capture important information about a student that can be shared with the new school team. The pdfs are fillable or can be printed out. It is suggested that the Snapshot is completed with input from the student, if possible. An English and Spanish version are provided. English Version | Spanish Version
- Daystar for Medically Fragile Children
New York State’s only pediatric day-respite program designed specifically to meet the needs of families with children as young as six months through age five who are coping with serious medical conditions and developmental complexities. - Early Childhood Direction Center (Binghamton)
- Early Childhood Direction Center (Rochester)
- Early Childhood Direction Center (Syracuse)
- EnCompass Resources for Learning
A not-for-profit organization that provides innovative educational services to students who struggle to learn and to the families, schools and professionals that support them. These services are matched to each student's unique learning style in order to achieve success and enhance lifelong learning. - Gallaudet University
Provides information on education and interventions for children with deafness. - Nazareth College Wellness and Rehabilitation Institute
Offers physical therapy, speech-language therapy, occupational therapy, art therapy, kids clubs, a language and literacy clinic, and music therapy. Services are provided by Nazareth students and low cost to families. - NYS Department of Education
Has info on IEPs, accessing services, and how special education works. - NYS Early Intervention Program
- NYSED School List
Displays a comprehensive list of schools devoted to various disabilities in New York State. Can be sorted by region or alphabetically. - Starbridge Inc.
Helps children and adults with learning disabilities, attention deficit disorder (ADD/ADHD), and other developmental disabilities seek personal success in school, work, relationships, and independent living. - Wisconsin Public Instruction (WPI)
Provides information on addressing health care needs in educational settings.
Financial Planning
- Future Care Planning
A local agency that assists families with planning for the legal and financial needs of loved ones with a disability. - New York State Office for People With Developmental Disabilities (OPWDD)
Responsible for coordinating services for New Yorkers with developmental disabilities, providing services including service coordination, family support services, employment supports, residential supports and services, and clinical services. - Planning Now: A futures and Estate Planning guide for Parents of Children and Adults with Developmental Disabilities
- Social Security Administration
Supplemental Security Income (SSI) and other financial support programs for children with disabilities, including a publication listing benefits for children with disabilities. - US News: How to financially plan for raising a child with special needs
General Information on Disabilities
- American Academy of Pediatrics
Has resources on a number of topics including early education, child care, and numerous health topics. - Family Voices
Provides advocacy for families of children with disabilities. - Golisano Children's Hospital Family Resource Library General Information on Disabilities
Has a number of resources including websites and books, curated by our Family Resource Library Staff. - Healthy Children
Parent resource on general child health issues developed by the American Academy of Pediatrics. - National Center on Birth Defects and Developmental Disabilities
- National Dissemination Center for Children with Disabilities
A central source of information on: disabilities in infants, toddlers, children, and youth, IDEA, which is the law authorizing special education, No Child Left Behind (as it relates to children with disabilities), and research-based information on effective educational practices. - National Institutes of Neurological Disorders and Stroke (NINDS)
Has resources and information on neurological issues. - National Organization on Disability
A private, non-profit organization that promotes the full participation of America’s 56 million people with disabilities in all aspects of life. - New York Deaf-Blind Collaborative (NYDBC) - The New York Deaf-Blind Collaborative (NYDBC) is a federally funded project (10/1/2018 – 9/30/2023) that provides technical assistance to improve services for children and youth who are deaf-blind between the ages 0-21.
- New York State Office for People With Developmental Disabilities (OPWDD)
Responsible for coordinating services for New Yorkers with developmental disabilities, providing services including service coordination, family support services, employment supports, residential supports and services, and clinical services.- One Page Guide - English PDF, Spanish PDF
- Roadmap for Self-Direction - English PDF, Spanish PDF
- Recommended Books on Disabilities
- The Arc of the United States
Provides advocacy and services across the United States via regional branches. - Yellow Pages for Children with Disabilities in New York State
An A - Z geographical guide to statewide resources for children.
Health
- Academy of Nutrition and Dietetics
- Adapted Driving Program, Rochester
Provides driving instruction to people with disabilities. - American Academy of Pediatrics (AAP): Vaccine Safety
Provides fact sheets and patient-education materials about the general safety of vaccines, thimerosal and vaccines, and concerns about the measles-mumps-rubella vaccine and autism. In addition, the AAP website offers an overview of the immunization process. - An Introduction to Practical Oral Care for People With Developmental Disabilities
- Autism and Medication: Safe and Careful use tool kit
A free publication providing strategies and resources for parents of children with autism who use medicines to help treat their child’s challenging behavior or manage emotional issues. The tool kit author is Lynn Cole, Director of Clinical Services for Developmental and Behavioral Pediatrics. Lynn Cole wrote a blog post on the development of the toolkit being inspired by the needs and desires of families. - Autism Speaks Transition Tool Kit
Created to serve as a guide to assist families on the journey from adolescence to adulthood. It has information that can be helpful to families of children with ASD and other developmental disabilities. - Blood Draw Toolkit
From Autism Speaks. Helps families prepare their child for the blood draw process. - Body Changes and Hygiene Information Sheet - Spring 2016
- Centers for Disease Control and Prevention (CDC): Vaccines and Autism
Presents information about the research CDC and other federal agencies are doing related to vaccines and ASD. - Dental Toolkit
From Autism Speaks. Was created to help with oral health. - Exploring Feeding Behavior in Autism: A toolkit for families
- Family Connect
Provides resources and support for parents of children with visual impairments. - Girl‘s Health
Information for women with disabilities. - Golisano Children's Hospital Family Resource Library Health and Development
Information on topics including general health services, social, emotional, and identity development. As well as books curated by our Family Resource Library Staff. - Kids Health
Provides information for parents, teens, and kids (tiene traducción al español). - National Center for Complementary and Alternative Medicine (NIH)
- North Shore-Long Island Jewish Health System: Your next patient has autism
A guide for health care providers and families to help children with ASD during medical visits. - Office of Dietary Supplements (NIH)
- Potty Training Children with Special Needs
Provides a brief overview of choosing the right potty chair, coaching techniques that may be helpful and also strategies to problem solve any difficulties you may encounter. - Developmental Disabilities & Oral Health
- Puberty and Adolescents on the Autism Spectrum
By the Autism Society of America. Strategies for helping children with all types of developmental disabilities understand pubertal changes and learn to manage personal hygiene and appropriate social interactions. Includes a list of books and other resources. - Recommended Books on Health
- Sleep Toolkit
From Autism Speak. Was created to help with sleep. - Social and Emotional Development in Children and Adolescents Knowledge Path
- Spina Bifida Association
Offers advice/resources on obesity prevention and weight reduction for teens with physical disabilities. - Talk on Feeding and Nutrition, by Dr. Kim Brown and Brianne Schmidt
- The Medication Decision Aid
Developed for Autism Speaks by The University of Rochester and Developmental and Behavioral Pediatrics in collaboration with Oregon Health and Science University and Texas Children’s Hospital to assist families in the medication decision process. - Toe-Walking Guide Dealing With Stretches and Exercising
- Toe-Walking Quick Reference Visual Chart
- Toilet Training Tips and Tactics
Written by Kent Moreno who is a behavioral analyst and father of a child with Down syndrome. - USDA Choose My Plate
- Video About Constipation and Stool Leaking
Developed by Becky Kendall, N.P., from Children's Hospital Colorado.
Parent and Family Support
- Ability Path
Provides support for parents of children with disabilities. - Autism Up
Seeks to provide parents, guardians and families who have members with an autism spectrum disorder, with information and resources including family support and other services for individuals with developmental disabilities, Information regarding medical practitioners and interventions and many other services. - Chapters of the ARC of New York
Promotes and protects the human rights of people with intellectual and developmental disabilities and actively supports their full inclusion and participation in the community throughout their lifetimes. - Continuing Developmental Services
Has a sibling and parent support group. Email Program Coordinator Jackie Blake, or call her at (585) 347-1031. - David's Refuge
Provides respite, resources and support to parents and guardians of children with special needs or life threatening medical conditions where they will be refreshed, restored and renewed in their role as caregivers. - Daystar for Medically Fragile Children
New York State’s only pediatric day-respite program designed specifically to meet the needs of families with children as young as six months through age five who are coping with serious medical conditions and developmental complexities. - Family Autism Connection
Provides traditional family experiences for families dealing with autism spectrum disorder and other developmental delays. - Flower City Down Syndrome Network
- Happiness House
Provides autism resources for families and professionals in Ontario, Seneca, Yates and Wayne Counties. Resources include an autism family support and training group, early childhood education services, and evaluation services. - Managing Autism Together Today (MATT)
A local organization that is dedicated to assisting families that have children with an autism spectrum disorder. - National Alliance on Mental Illness
Has an array of support and education programs including resource centers, discussion groups, and local support. - National Council on Alcoholism and Drug Dependence-Rochester Area Parents Network Support Group
- New York State Parent Network
Supports families of people who are deaf-blind, or visually impaired and Hard of Hearing throughout New York State. - New York State Regional Center for Autism Spectrum Disorders
- Organization for Autism Research Sibling Support Initiative
- Parent Network of Western New York
Their goal is to help families successfully advocate for their children with special needs. - Parent to Parent of New York
Parents of children with disabilities can find support. A unique feature of this organization is the Parent Matching Program where volunteer Support Parents provide one on one assistance and support. Check their website to find the Parent to Parent office in your area. - The Sensory Nook, LLC
Located in Watertown, offers classes, an Academy, Stay N Play, and Drop N Shop programs. - Sibling Leadership Network
- Southern Tier Independence Center
- Square Pegs
A support group for adults with Asperger syndrome. - The ARC Siblings Support Program
- Trisomy.org
Recreation
- AbilitYoga
Was started by a team of two experienced occupational therapists to provide unique adaptive yoga therapy for children with special needs, either developmental disabilities or special healthcare needs, in the metropolitan Rochester, NY, area. - AutismUp
Has a series of family gatherings on trail walks around Rochester to promote the health and wellbeing of families. - Camp Good Days and Special Times, Inc.
A 501(c)3 not-for-profit organization dedicated to improving the quality of life for children, adults and families whose lives have been touched by cancer and other life challenges through summer camping experiences and year-round events and activities. - Camp Puzzle Peace
Provides camping recreation opportunities for families. - Cape Ability Outrigger Ohana, Inc.
Aims to provide the opportunity for individuals with disabilities to gain confidence and dignity through participation in paddle sports, recreation, and related educational programs. - CDS Monarch
Offers person-centered recreation and leisure activities to individuals ages 5 to adulthood living at home with their families. Services are provided by partnering with community-based programs to deliver specialized programming to fit individual needs. - CP Rochester
Offers recreation programming that helps to develop an individual’s skills and interests. Individuals are provided with community-based opportunities that encourage group interaction and provide instruction and personal development. Specific programs include athletic, youth, and fine arts programs. - Empire State Games
Offers competition in a variety of adapted sports, plus fitness for young people with physical challenges. The program is free to athletes and spectators through the New York State Office of Parks, Recreation and Historic Preservation and supported by local volunteers. Open to ages from 5-21 years with many different divisions available. - Gliding Stars of Rochester
Gives individuals with disabilities the chance to increase their physical abilities and self-determination through development of ice skating skills. Participants are involved in a regular program of instruction and practice within their local community. An end of season public performance is part of the program. - Heritage Christian Stables
Offers an accredited therapeutic riding program for children and adults. Participants receive support from highly skilled riding instructors and physical therapists. - Music Education Center (MEC)
Located in Penfield, MEC has an array of musical enrichment programs and breaks down musical tasks into basic components to make things easy for students. Their programs are ideal for students with developmental challenges. - Nazareth Music Therapy Clinic
- New York State Inclusive Recreation Resource Center
Promotes and sustains participation by people with disabilities in inclusive recreation activities and resources. - New York State Parks Access Pass
Permits residents of New York State with disabilities, as defined in the application, free or discounted use of state parks, historic sites, and recreational facilities operated by the New York State Office of Parks, Recreation and Historic Preservation, and the New York State Department of Environmental Conservation. - Pieters Family Life Center
A recreation center that offers educational, social, and wellness support that is inclusive to all people. - Purple Pony
A therapeutic horsemanship program located near Rochester, NY. They provide equine opportunities to persons with disabilities and diverse needs. - Rochester Accessible Adventures
RAA partners with the community to train recreation businesses to operate inclusively whenever their doors are open so that individuals with and without disabilities can participate together; supports adaptive sports teams; and operates as a Regional Resource Network to connect families to the resources they need. - Rochester Ice Cats
Members of Special Hockey International - a division of USA Hockey. Rochester Ice Cats is an organization that specializes in providing training in the game of ice hockey for individuals with developmental disabilities. - Rochester Kids Out and About
Provides details of child appropriate events in the Rochester, NY, area. - Rochester Museum and Science Center
Houses exhibits and a planetarium and offers a wide range of family and child experiences. - Rochester Rookies
A junior wheelchair sports program dedicated to enhancing the quality of children's lives by teaching athletic skills, fostering independence, building character and helping families realize their child's full potential through programs, advocacy and services. Featured sports include track and field, swimming, archery, and table tennis. - Shared Ski Adventures (SSA)
An adaptive learn to ski program that helps people with disabilities to learn to become independent skiers. SSA is a recreational program of CP Rochester that takes place at Swain Resort in Western New York. SSA is the largest adaptive ski program in the greater Rochester area. - Special Olympics
Aims to provide year-round sports training and athletic competition in a variety of Olympic-style sports for all children and adults with intellectual disabilities. Through their participation in Special Olympics New York athletes gain confidence and build a positive self-image. - SportsNet
Provides inclusive sports and recreation opportunities for people with physical challenges. Working with area organizations, sports clubs, recreational facilities, and sports professionals, the goal of the program is to create a great sports experience for people of all abilities. - The EquiCenter
Located in Honeoye Falls, NY. Offers therapeutic riding, hippotherapy (health professionals assist a client and horse), vaulting, and horsemanship sessions. The center is committed to providing a safe, appropriate, and enjoyable group atmosphere where all participants can work toward their individual goals. - The Family Autism Connection
Home to Camp Puzzle Piece, the center provides traditional family experiences to families dealing with ASD and other developmental delays. They provide arts, recreation, skill-building, and social opportunities, and are skilled in working with children who have significant communication and behavioral difficulties. - The National Center on Physical Activity and Disability
Provides many different resources specific to physical activity, research and general information on different conditions. - Together Including Every Student (TIES)
Promotes the participation of students with developmental disabilities in extracurricular and community activities by creating effective natural support provided by trained student volunteers. TIES is supported in various school districts. Visit the TIES website to find the coordinator in your district. - United Cerebral Palsy Association (UCP)
Provides links to information on sports and activities that one with cerebral palsy may participate in along with the necessary additions such as equipment to make participating in these activities possible. - Upstate Music Therapy Center
- Webster Central School District/SEPTA Sports
With SEPTA, sponsors sports programs for children with special needs-ages 5 - 21. Provides a list of various sports opportunities with the appropriate contact information. - YMCA of Greater Rochester
As a community organization, the YMCA is focused on youth development, healthy living, and social responsibility.
Safety
- Autism at-a-Glance: Internet Safety in Adolescents with ASD
- Autism Society of Maine
- Autism Speaks: Safety Plans Tool Kit
- Interactive Autism Network (IAN): Preliminary Report on Elopement
- Kidpower
- National Autism Association (NAA)
Offers information about wandering. The NAA also provides The Big Red Safety Toolkit which addresses many safety concerns for parents of children with autism - Parents for Megan's Law
A comprehensive listing of different aspects of child sexual abuse and what to look out for. - Project Lifesaver International
An initiative to provide training to law enforcement and other public safety agencies on the use of specialized electronic search and rescue equipment, technology and procedures, as well as teaching rescuers how to communicate with people afflicted with cognitive conditions. - Water Awareness in Residential Neighborhoods (W.A.R.N.)
Serves as a resource for water safety and drowning awareness. This website provides prevention and safety tools.
Transition to Adulthood
- Center for Disability and Education - A University of Rochester program that works to improve the quality of life for people with developmental disabilities and their families as they transition from school age to adulthood.
- Center on Youth Voice, Youth Choice - The Center on Youth Voice, Youth Choice is for youth with disabilities and their families and supporters. They do research, advocacy, and teaching about alternatives to guardianship.
- Higher Education for Students with Disabilities - A guidebook by the Community for Accredited Online Schools including information on schools, financial aid, scholarships, and government resources for students with disabilities.
- Guardianship Alternatives and Transfer-of-Rights (GATOR) explores the relationship between special educators’ transfer-of-rights and guardianship discussions and key predictors of transition outcomes for students with intellectual and developmental disabilities (IDD). GATOR is dedicated to informing education professionals, families and supporters of youth with IDD about transfer-of-rights.
- Information and Resources for Online Colleges
- Niagara Wellness Connection Center
- Resources for Students with Disabilities
- Scholarships for Students with Disabilities
- Transition Toolkit
- URMC Complex Care Center
Wandering
- Wandering Prevention and Safety Information for Caregivers