Connecting with NY Families
Connect with New York Duchenne Families on Facebook through our Connect Program. You will need to request to be added to the group first.
Access and Recreation
- WNY Adaptive Water Sports
- New York City Wheelchair Accessible Travel Guide
- Rochester Accessible Adventures
- New York State Dept. of Environmental Conservation Accessible Recreation
- New York State’s Most Wheelchair Accessible Things to Do
- Finger Lakes Wheelchair Accessible Vacation Rentals
- ARISE at the Farm
ARISE at the Farm – ARISE (ariseinc.org)
- Adaptive Baseball
Little League Baseball and Softball
- Disability Right New York
725 Broadway, Suite 450
Albany, NY 12207
- New York State Commission on Quality of Care
Marcel Chaine, Director Advocacy Services Bureau
401 State Street
Schenectady, NY 12305-2397
Email: Chaine@cqcad.state.ny.us Gary.OBrien@cqcad.state.ny.us
Department of Education
- Office of Vocational & Educational Services for Individuals with Disabilities
89 Washington, DC, Room 309EB
Albany, NY 12234
Early Intervention Services (Infant and toddler)
- Early Intervention Program
State Department of Health
Empire State Plaza, Corning Tower, Room 287
Albany, NY 12237
Early Intervention Services (Ages 3 to 5)
- State Education Department
Office of Vocational and Education Services for Individuals with Disabilities
Candace Shyer, 619 Coordinator
1 Commerce Plaza, Room 1624
Albany, NY 12234
PTI (Parent Training and Information Centers)
- Starbridge (Statewide except NYC)
1650 South Avenue, Suite 200
Rochester, NY 14620
- Advocates for Children of NY (Five boroughs of NYC)
151 West 30th Street, 5th Floor
New York, NY 10001
- Resources for Children with Special Needs, Inc. (Serving NYC)
116 East 16th St., 5th Floor
New York, NY 10003
- Sinergia / Metropolitan Parent Center (NYC and Long Island)
134 W 29th St, 4th Floor
New York, NY 10023
- The John Lepping Memorial Scholarship
Scholarship designed by the Lep Foundation for Youth Education (a public charity that provides financial assistance to Tri-State students seeking to further their education).
This agency provides adult career and continuing education services to people with disabilities. Families and students should begin discussing transition services before a student graduates high school. Arrangements may be made with a school guidance counselor or as part of and IEP transition plan to contact a case manager from Access VR to determine appropriate services.
Health and Well Being
- Child Health Plus Children’s Health Insurance Program
This program provides health insurance to eligible children who do not have insurance and are under age 19 based on family size and income. Some families are required to pay a monthly premium based on family size and income.
Child Health Plus information
- Long Term Home Health Care Program
These programs provide Home and Community Based Services to eligible people who have disabilities that meet Nursing Facility Level of Care criteria and the cost of providing the services does not exceed nursing facility costs. Eligibility is based on income and resources. Services include regular Medicaid Services and case management, home improvements for accessibility and respite services based as appropriate. Each county determines eligibility and individuals may obtain more information from the county where they live.
Long Term Home Health Care information
Local Departments of Social Services contact information
- Medicaid Waiver Information
The Office for People with Developmental Disabilities coordinates programs for qualifying individuals. Service coordination assists people with developmental disabilities and their families in gaining access to services and supports appropriate to their needs. Services include Medicaid insurance and Home and Community Based Services.
Service Coordination Information
- The Beamer Hughes Foundation
The Foundation’s mission is to help people in the greater Rochester/Finger Lakes region who are affected by muscular dystrophy secure necessary equipment and services.
- David’s Refuge
To provide 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.
David’s Refuge | Caring for the Caregiver | Caring for the Caregiver (davidsrefuge.org)
Equipment Donation and Loaner Programs
- ARISE Medical Equipment Loan Closet
DME Loan Closet
ARISE loans manual wheelchairs and shower/commode chairs for short periods while individuals wait for their equipment arrives. They also have a ramp building program based on need and income.