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


Advocacy Agencies

Department of Education

  • Office of Vocational & Educational Services for Individuals with Disabilities
    89 Washington, DC, Room 309EB
    Albany, NY 12234
    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
    518-473-8673 FAX

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
    Contact information

PTI (Parent Training and Information Centers)

  • Starbridge (Statewide except NYC)
    1650 South Avenue, Suite 200
    Rochester, NY 14620
    585-546-7069 FAX
    Contact information
  • Advocates for Children of NY (Five boroughs of NYC)
    151 West 30th Street, 5th Floor
    New York, NY 10001
    212-947-9790 FAX
  • Resources for Children with Special Needs, Inc. (Serving NYC)
    116 East 16th St., 5th Floor
    New York, NY 10003
    212-254-4070 FAX
  • Sinergia / Metropolitan Parent Center (NYC and Long Island)
    134 W 29th St, 4th Floor
    New York, NY 10023
    212-643-2871 FAX
    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).

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.

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

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.


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

What New York-specific resources would you like to add or update? Email