Learn more about the Resource Directory

Welcome to the St. Mary’s Healthcare System Resource Directory

This resource directory is for families/caregivers of children who have medically complex needs or long-lasting conditions that require extra health care and support services.

The information in this directory is provided to help you find resources to assist you with finding help for your child and family. The range of care/disability/health issues varies amongst children so the information may or may not pertain to your child.

What you'll find

After a family learns that their child is ill parents/caregivers typically begin to think about how they can best care for their child. The resources in this directory include agencies, service providers, advocacy organizations, and other resources to assist with providing a quality life for children with medically complex needs.

To find a resource enter your area of interest in the search box on the side bar and the location in the box located on the top of the screen. The directory is intended to assist you with being the best advocate for your child. Although we attempt to keep the directory current resources change constantly.

Got it!

Category: Advocacy Organizations

  1. Brain Injury Association NYS- The Family Advocacy Counseling and Training Services Program (FACTS) bianys.org

    If you or a member of your family sustained a brain injury prior to the age of 22 and you live in New York State, a FACTS Coordinator can help you!

    Contact Information

    Carmen Garcia - Email
    Counties: Nassau & Suffolk
    (631) 423-1058

    Ellie Bibawy, CBIS - Email
    Counties: NYC Region (Bronx & Queens)
    (718) 234-3586

    Jan Wollney, CBIS - Email
    Counties: NYC Region (Brooklyn & Staten Island)
    (718) 356-2851

  2. Center for Independence for the Disabled-NY cidny.org

    Provide a variety of services for people with disabilities.  Benefit counselors can help with housing, health benefits, transportation, youth services, SSDI, SSI, food stamps. Brooklyn Parent Center provides outreach, information and referrals to parents, grandparents and caregivers of children ages 3-21 with disabilities.

    Contact Information

    Brooklyn Center for Independence of the Disabled (BCID):  718-998-3000, TTY: 718-998-7406

    Brooklyn Parent Center: 718-998-3000

    Bronx Independent Living Services, Inc:  718-515-2800 ext. 116   TTY: 718-515-2803

    Queens Center for Independence of the Disabled:  646-442-1520   718-886-0427    TTY: 886-948-1064

    Address

    Brooklyn Center for Independence of the Disabled (BCID): 27 Smith St., ste 200, Brooklyn, NY 12201 Brooklyn Parent Center: 27 Smith St., 2nd floor, Brooklyn, NY 12201 Bronx Independent Living Services, Inc: 4419 Third Avenue, Ste 2C, Bronx, NY 10457 Queens Center for Independence of the Disabled:80-02 Kew Gardens Rd, #107, Kew Gardens, NY 11415

  3. Children’s Aid Society childrensaidsociety.org

    Today, Children’s Aid serves New York’s neediest children and their families at more than 40 locations in the five boroughs and Westchester County. Our caring begins even before birth, through prenatal counseling and assistance, and continues through the high school years with college and job preparatory training programs. All aspects of a child’s development are addressed as he or she grows, from health care to academics to sports and the arts. And because stable children live in stable families, a host of services are available to parents, including housing assistance, domestic violence counseling and health care access

    Contact Information

    CAS switchboard: (212) 949-4800

    Address

    The Children's Aid Society 105 East 22nd Street New York, NY 10010

  4. Disability.gov disability.gov

    The U.S. federal government website for information on disability programs and services nationwide.
    The site connects people with disabilities, their families and caregivers to helpful resources on topics such as how to apply for disability benefits, find a job, get health care or pay for accessible housing. You can also find organizations in your community to help you get the support you need.

  5. Family Voices familyvoices.org

    Helps families who have children with special health care needs through national parent to parent networks. Provides family’s tools to make informed decisions, advocate for improved public and private policies, build partnerships among professionals and families, and serve as a trusted resource on health care.

    Contact Information

    National (505)872-4774 or (888)835-5669
    Parent to Parent NYS (518)359-3006
    Toll Free (800)305-8817

  6. Genetic Alliance geneticalliance.org

    An organization devoted to promoting optimum healthcare for people suffering from genetic disorders.  Network of 1000 disease-specific advocacy organizations.  Resources include online genetic testing database, provides information about support groups, clinical descriptions, treatments, research, insurance issues.

    Contact Information

    www.diseaseinfosearch.org

  7. Law Help NY lawhelpny.org

    Helping low-income New Yorkers solve legal problems: immigration, disability discrimination, public benefits, health, housing

    Contact Information

    Email - info@NYLawHelp.org

    Address

    LawHelpNY c/o City Bar Justice Center 42 West 44th Street New York, NY 10036

  8. National Organization for Rare Diseases (NORD) rarediseases.org

    Helps people (all ages) with rare orphan diseases through information, programs of education, advocacy, research, and service.

    Contact Information

    203-744-0100                  800-999-6673

    Address

    55 Kenosia Avenue, Danbury, CT 06810

  9. New York Commission on Human Rights nyc.gov

    The NYC Human Rights Law protects individuals with disabilities from discrimination. People with disabilities have a right to participate fully in all areas of life — including in employment, housing, and public accommodations. With the Commission’s Law Enforcement Bureau,

    Contact Information

    City Commission on Human Rights Service Center Phone Numbers
    Manhattan 212-306-5070
    Brooklyn 718-722-3130
    Bronx 718-579-6900
    Queens 718-657-2465
    Staten island 718-390-8506

    If you have an accessibility issue where you live or work or at a public accommodation such as a restaurant, theater, or medical office, please call 311 or (212) NEW-YORK or see Commission publication

  10. New York Lawyers for Public Interest NYPLI.org

    Serves the legal needs of underserved, underrepresented New Yorkers and their communities. Links low income clients and organizations with attorneys willing to volunteer pro bono legal services.  Disability Law Center works towards protecting rights of people with disabilities: children with disabilities trying to secure appropriate integrated special education, fights for equal access to transportation, housing, medical care and equipment.  Health Justice Program works with communities to ensure access to quality health care, including those who base barriers due to limited English or racial and/or ethnic discrimination.

    Contact Information

    212-244-4664                 TTY:  212-244-3692

    Address

    151 West 30 Street, 11th Floor, New York, NY 10001