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
http://wnyadaptivewatersports.org/wp/ - New York City Wheelchair Accessible Travel Guide
https://wheelchairtravel.org/new-york-city/ - Rochester Accessible Adventures
https://rochesteraccessibleadventures.org/ - New York State Dept. of Environmental Conservation Accessible Recreation
http://www.dec.ny.gov/outdoor/34035.html - New York State’s Most Wheelchair Accessible Things to Do
https://www.iloveny.com/blog/post/new-york-states-most-wheelchair-accessible-things-to-do/ - Finger Lakes Wheelchair Accessible Vacation Rentals
https://www.tripadvisor.com/VacationRentals-g1480313-Reviews-zfn2-Finger_Lakes_New_York-Wheelchair_Accessible_Vacation_Rentals.html - ARISE at the Farm
ARISE at the Farm – ARISE (ariseinc.org) - Adaptive Baseball
Little League Baseball and Softball
Education
Advocacy Agencies
- Disability Right New York
725 Broadway, Suite 450
Albany, NY 12207
518-432-7862
518-512-3448 TTY
800-998-9892
Website
E-Mail: mail@DRNY.org
Contact information - New York State Commission on Quality of Care
Marcel Chaine, Director Advocacy Services Bureau
401 State Street
Schenectady, NY 12305-2397
518-388-2892
800-624-4143
Website
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
518-474-2714
Website
Contact information
Early Intervention Services (Infant and toddler)
- Early Intervention Program
State Department of Health
Empire State Plaza, Corning Tower, Room 287
Albany, NY 12237
518-473-7016
518-473-8673 FAX
Website
E-Mail: bei@health.ny.gov
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
518-474-2084
518-474-2219
Website
Contact information
PTI (Parent Training and Information Centers)
- Starbridge (Statewide except NYC)
1650 South Avenue, Suite 200
Rochester, NY 14620
585-546-1700
585-546-7069 FAX
800-650-4967
Website
Contact information - Advocates for Children of NY (Five boroughs of NYC)
151 West 30th Street, 5th Floor
New York, NY 10001
212-947-9779
212-947-9790 FAX
Website
E-Mail: aespada@advocatesforchildren.org - Resources for Children with Special Needs, Inc. (Serving NYC)
116 East 16th St., 5th Floor
New York, NY 10003
212-677-4650
212-254-4070 FAX
Website
E-Mail: info@resourcesnyc.org - Sinergia / Metropolitan Parent Center (NYC and Long Island)
134 W 29th St, 4th Floor
New York, NY 10023
212-643-2840
212-643-2871 FAX
866-867-9665
Website
Contact information
College Scholarships
- 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).
http://www.lepfoundation.org/applications
Vocational Rehabilitation
- Acces-VR
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.
Acces-VR
Health and Well Being
Insurance
- 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
Financial Aid
- 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.
www.thebeamerhughesfoundation.com
Care
- 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.
Syracuse, NY
Website
