Michael S. Porter
Eric C. Nordby
The Brain Injury Association of New York State is a statewide nonprofit that has been serving families affected by brain injuries since 1982. While BIANYS serves people with all types of brain injuries, from concussions to strokes to traumatic injuries; their services fully apply to children with birth-related brain injuries, including hypoxic-ischemic encephalopathy (HIE), neonatal encephalopathy, and perinatal brain injury.
BIANYS stands out for its free, comprehensive care coordination through regional specialists who help families navigate the complex maze of medical, educational, and social services. Their FACTS Program assigns you a dedicated Certified Brain Injury Specialist who knows your county’s resources and can actively help you access early intervention services, secure school accommodations, and connect with rehabilitation providers. Beyond care coordination, BIANYS offers peer support groups, educational advocacy resources, and a modest emergency financial assistance fund.
Best for: New York families raising children with brain injuries who need an experienced guide to help them navigate medical systems, school special education processes, and community resources, particularly valuable once you’ve left the hospital and are figuring out long-term care and support.
Strengths & Limitations
| Strengths | Limitations |
|---|---|
| Statewide coverage with local experts: FACTS coordinators in every region of New York provide personalized support no matter where you live, with specialists who know your county’s specific resources and services. | Not birth injury-specific: BIANYS serves all brain injuries across all ages, so support groups and resources aren’t exclusively focused on birth injury experiences, though all services fully apply to your child. |
| Free professional care coordination: Certified Brain Injury Specialists actively help you navigate systems, not just hand you a list of phone numbers. They’ll help you access early intervention, understand IEP processes, and connect with rehabilitation services at no cost. | No immediate NICU support: The organization typically connects with families after hospital discharge during rehabilitation or community reintegration, not at bedside during the crisis period right after birth. |
| Strong school advocacy support: Project LEARNet resources, IEP/504 guidance, and educational advocacy specifically designed for traumatic brain injury in school settings help you get appropriate services for your child. | No direct therapy or medical services: BIANYS doesn’t provide physical therapy, occupational therapy, speech therapy, or medical treatment, they connect you to providers who do. |
| Established track record: 43 years of operation, official state affiliate of the Brain Injury Association of America, and integrated partnerships with New York State agencies mean proven expertise and reliable service. | Limited financial help: The Family Fund provides up to $400 annually for emergency needs, which is helpful for immediate crisis situations but modest compared to the full costs of equipment and care. |
| Peer support and community: Monthly parent support groups facilitated by people who understand what you’re going through, plus statewide and regional virtual options. | No legal services: BIANYS doesn’t provide legal representation or advice for medical malpractice claims. You’ll need to seek separate legal counsel if pursuing a birth injury lawsuit. |
Services & Support
Care Coordination
- Dedicated FACTS Program coordinator assigned to your region
- Help navigating early intervention systems
- Connection to rehabilitation services (PT, OT, speech therapy)
- Medicaid waiver application assistance
- Ongoing support as your child’s needs change
Educational Support
- IEP and 504 plan advocacy and guidance
- Project LEARNet online educational planning resources
- School system navigation for special education services
- Educational advocacy guides specific to brain injury
- Educator training programs (helps your child’s teachers understand their needs)
Peer Support & Community
- Monthly virtual parent support group for parents raising children with brain injuries under 18
- Statewide and regional support groups (virtual and in-person)
- Connection to other families navigating similar challenges
Information & Resources
- Toll-free helpline with trained staff (1-800-444-6443)
- Publications on children’s brain injury
- Resource library and lending materials
- Website guides and materials
- Professional referral network
Financial Assistance
- Family Fund grants up to $400 per year for emergency needs
- Priority given to crisis situations
- Can help with quality-of-life enhancements when other funding exhausted
Advocacy
- State and federal policy involvement affecting brain injury services
- Personal advocacy support for accessing services
- Disability rights advocacy
Professional Development
- Annual conferences and symposiums
- Training programs for professionals working with brain injury
- COPE concussion education for schools and communities
Locations & Contact
Main Office:
Brain Injury Association of New York State
5 Pine West Plaza, Suite 506
Albany, NY 12205
Phone: (518) 459-7911
Family Helpline (Toll-Free): 1-800-444-6443
Email: info@bianys.org
Website: www.bianys.org
Regional FACTS Coordinators work remotely and serve families by appointment. When you contact BIANYS, you’ll be connected to the coordinator covering your county. Coverage includes:
- Albany and Capital Region: Diana Erno (518-757-1021)
- Western NY (Buffalo/Rochester area): Alexis Rutty (716-229-8036)
- New York City (Brooklyn, Manhattan, Queens, Staten Island): Jan Wollney (718-734-2225)
- Southern Tier (Binghamton area): Jessica Morley (607-278-3097)
- Central NY (Syracuse/Utica area): Kelly Hindes (607-283-2163)
- Long Island (Nassau/Suffolk): ToniAnn Tumminaro (516-231-4090)
All coordinators conduct home visits and community meetings as needed throughout their regions.
Who Can Access Services
Geographic Area: All 62 counties in New York State. You must be a legal New York State resident.
Age Range: All ages, from newborns through adults. The FACTS Program specifically serves children injured before age 22, while the Continuum of Care Program serves adults injured at age 22 or older.
Cost: Free for core services including the helpline, FACTS coordination, support groups, educational resources, and advocacy. Optional membership is available ($5-$650 depending on type) but not required to access services. Family Fund emergency grants provide up to $400 per year with no repayment required.
Requirements: No income requirements for most services. Family Fund requires demonstrated financial hardship and that you’ve exhausted other funding sources first. Medical documentation of brain injury may be needed for FACTS enrollment.
Accessibility: Albany headquarters is wheelchair accessible. Virtual services available statewide including online support groups, remote coordination meetings, and telehealth consultations. Language and ASL interpretation services may be available upon request.
How to Get Started
- Call the Family Helpline at 1-800-444-6443 or the main office at (518) 459-7911, or email info@bianys.org to make initial contact.
- Describe your situation to BIANYS staff: your child’s brain injury, when it occurred, current age, and where you live in New York.
- Get connected to your regional FACTS coordinator if your child was injured before age 22. Staff will match you with the coordinator serving your county.
- Contact your assigned coordinator directly by phone or email to schedule your first meeting. Meetings can happen virtually, by phone, or in person.
- Complete an initial assessment where your coordinator will discuss your family’s needs, challenges, and goals, then develop a plan together.
- Begin receiving support through ongoing coordination, referrals to services, educational advocacy, support group connections, and resource navigation.
- For financial help, download the Family Fund application from the website and submit it to BIANYS marked “Attention BIANYS Family Fund Committee.” Your FACTS coordinator can also help with this application.
Bottom Line
BIANYS is best suited for New York families who have left the hospital and are navigating the long-term journey of raising a child with a brain injury from birth. If you’re feeling lost in the maze of early intervention programs, overwhelmed by IEP meetings, or struggling to figure out what services exist and how to access them, the free FACTS Program coordinators provide exactly the expert guidance you need. The organization’s 43-year track record, statewide coverage, and strong integration with New York’s developmental disability service system make it a reliable resource. However, understand that BIANYS serves all types of brain injuries (not exclusively birth injuries), doesn’t provide bedside NICU support or direct therapies, and can’t offer legal help with medical malpractice claims or substantial financial assistance. Consider BIANYS as an essential navigation partner and advocacy resource for the post-acute phase of your child’s care, a knowledgeable guide who can open doors to services and help you advocate effectively within complex systems.