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!All Resources
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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 -
New York State Department of Health Resource Directory For Children and Young Adults with Special health Care Needs health.ny.gov
Provides resources for families of children and young adults who have serious illness or long lasting conditions for which they need extra health care and support services. Availabile in English, Spanish, French, Russian and Chinese. For copies vicsit www.health.ny.gov Resource Directory for Children with Special Health care Needs. Or ask the patient navigator or social worker for a copy.
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Parent Center of New York – United We Stand (UWS) of New York uwsofny.org
Resource center serving culturally diverse families who have children with disabilities in Brooklyn, and Queens. Staffed by parents who have children with disabilities. Provide information and supports to underserved families whose disability-related needs are complicated by poverty and cultural and linguistic diversity.
Address
98 Moore St Brooklyn, NY 11206
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Resources for Children with Special Needs (RCSN) resourcesnyc.org
Founded by 3 NY mothers RCSN is a nonprofit organization that works for families and children with all special needs across all boroughs, to understand, navigate and access services.
Contact Information
Phone 212 766 4650
Fax 212 677 4070
Email info@resourcesnyc.orgAddress
116 East 16th Street, 5th Floor New York, NY 10003
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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
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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
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The Legal Aid Society legal-aid.org
Provides free legal services for clients who cannot afford to pay for counsel. Represents low-income families and individuals in legal matters involving housing, benefits, domestic violence, disability, family issues, health, employment, immigration, HIV/AIDS, prisoners’ rights, and elder law.
Contact Information
Queens: 718-286-2450
Brooklyn: 718-645-3111
Bronx: 718-579-3000
Address
Queens: 12-46 Queens Blvd, Kew Gardens, NY 11415 Brooklyn: 111 Livingston Street, 7th floor, Brooklyn, NY 11201 Bronx: 260 East 161st Street, Bronx, NY 10451
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Epilepsy Foundation of Metropolitan New York efmny.org
Provides a wide variety of services and supports to persons with epilepsy, their families and the community. Respite services, service coordination, information and referral services, socialization programs and educational presentations.
Contact Information
212-677-8550
Address
65 Broadway, ste 505, New York, NY 10006
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National Institutes of Health (NIH) nih.gov
Nation’s leading medical research agency. Has different institutes for specific disease areas.
Clinical Trials: database of research studies for new therapies, to test new ways of using known treatments or to find out more about a disorder. To learn about clinical trials or to find a clinical trial that your child might be able to participate in, visit: www.ClinicalTrials.gov
National Institute of Neurological Disease (NINDS): leading supporter of biomedical research on disorders of the brain and nervous system. www.ninds.nih.gov
Office of Rare Diseases (NORD): provides information on specific rare diseases, patient advocacy groups, research studies. www.raredisease.info.nih.gov
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New York State Genetic Services Program wadsworth.org
Program ensures that individuals with genetic disorders have access to genetic services (i.e diagnostic, counseling and preventive services). All services are available whether or not the patient is able to pay for them.
Contact Information
518-474-7148