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NEW YORK STATE INDEPENDENT LIVING COUNCIL INC

ALBANY, NY · EIN 141783039 · Form 990 · FY2024 · NTEE P80 · Human Services · Small ($100K-$1M) · nysilc.org
revenue
$455K
expenses
$445K
net assets
$167K
employees
3
program ratio
84%
mission · from form 990

RESPONSIBLE FOR THE JOINT DEVELOPMENT, MONITORING AND EVALUATION OF THE THREE YEAR NEW YORK STATEWIDE PLAN FOR INDEPENDENT LIVING.

profile · synthesized from sources

Statewide council responsible for developing, monitoring, and evaluating New York's three-year Statewide Independent Living Plan. Focuses on advancing independent living services and policies for people with disabilities across New York State. Operates as a coordinating and advisory body with a focus on systems advocacy and stakeholder engagement.

named programs · 2 · from sources

What they call their work

Consumer Action Network (CAN)
Facilitates a network for independent living centers and consumers to share information, coordinate advocacy efforts, and respond to policy changes affecting people with disabilities.
Statewide Independent Living Council Program
Oversees the development, implementation, and evaluation of the three-year New York State Statewide Independent Living Plan, including monitoring outcomes and recommending improvements.
activities · 5 groups

What they do

  • Disability Rights Advocacy & Self-Advocacy Empowerment 5 activities
    • Advocate for disability rights legislation and policy
      Advocates for the passage and protection of key disability rights laws and policies at both federal and state levels, including the Ticket to Work Act, Help America Vote Act, Medicaid Buy-In, Most-Integrated Setting Coordinating Council law, and Consumer Directed Personal Assistance program safeguards.
    • Conduct research and publish reports on disability issues
      Conducts surveys and publishes reports on critical issues affecting New Yorkers with disabilities, including transportation gaps and the housing crisis.
    • Develop and oversee Statewide Plan for Independent Living
      Jointly develops, monitors, and evaluates the three-year New York Statewide Plan for Independent Living (SPIL) in coordination with state partners to advance independent living for people with disabilities across New York State.
    • Integrate disability access into emergency planning
      Partners with FEMA and New York City agencies to ensure disability access is integrated into disaster response and emergency preparedness planning.
    • Provide public education and outreach programs
      Produces the annual Points of View cable access television program and conducts public quarterly council meetings in a hybrid format to promote awareness and engagement on disability issues.
  • Recognition and Awards Programs 1 activity
    • Administer NYS Disability Rights Hall of Fame
      Established and administers the NYS Disability Rights Hall of Fame to recognize individuals with lifelong achievements impacting people with disabilities; has inducted 25 individuals as of 2025 with five more planned.
  • Volunteer and Professional Training Programs 1 activity
    • Deliver training programs for institutions and service providers
      Develops and delivers sensitivity trainings for law enforcement, hospitals, domestic violence shelters, and schools to improve services and understanding for disabled and Deaf individuals.
  • Community Resource Navigation and Support Services 1 activity
    • Support self-directed home care services
      Operates a permanent peer mentoring program and a Consumer Resource Center to support individuals using self-directed home care services under New York’s Consumer Directed Personal Assistance program.
  • Uncategorized 1 activity
    • Enhance capacity of independent living network
      Builds capacity across the statewide network through initiatives such as distributing and training on Kindle 3 devices, developing an online Independent Living Philosophy and History tutorial, and forming a 501(c)(4) organization to expand grassroots advocacy.
financials · form 990 · fy2024
revenue
Total revenue$455K
Contributions & grants$454K100%
Program service revenue$00%
Investment income$8990%
Other revenue$0
expenses
Total expenses$445K
Program expenses84%
Admin / overhead16%
Fundraising0%
Salaries & benefits$243K
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$480K
Cash$23K
Investments$0
Liabilities$313K
Net assets$167K
Liquid reserves0.6 mo
6 years on record · 2019–2024 · YoY revenue +2.8%
leadership · form 990 part vii · fy2024

Who runs it

paid leadership · 1
NameTitleHours/wkCompensation
DENISE DI NOTO OUTGOING EXECUTIVE DI 40 $102K
board members · 24
  • BARBARA GOLDSTEIN — DIRECTOR
  • BEATA KARPINSKA-PREHN — SECRETARY
  • BRODIE ENOCH — DIRECTOR
  • CYNTHIA ALCOZER — DIRECTOR
  • ISABELLE ALEXANDER-KLABOE — DIRECTOR
  • JACKIE JOHN — DIRECTOR
  • JENNIFER SHIPPEE — DIRECTOR
  • JOHN ZICK — MEMBER AT LA
  • JOSEPH TEDESCO — ACCES-VR REP
  • KEITH GURGUI — DIRECTOR
  • LAURA CARDWELL — EXECUTIVE DI
  • LEANNA LEROY — DIRECTOR
  • LINDSAY A MILLER — VICE CHAIR
  • LISA ACKERMAN-TODT — DIRECTOR
  • LISA GESSON — DIRECTOR
  • LOU PANICCIOLI — DIRECTOR
  • MARCUS JOHNSON — DIRECTOR
  • MARIAH SEPULVEDA — DIRECTOR
  • MICHAEL GILBERG ESQ — DIRECTOR
  • MICHELE JUDA — DIRECTOR
  • NAOMI JONES — DIRECTOR
  • RASHETA BUNTING — DIRECTOR
  • SONAM BEN WILLOW — DIRECTOR
  • STEPHANIE WOODWARD — TREASURER
relationships · 13

Who they work with

  • Alliance to Protect Home Care Partner — Organization co-led by Bryan O'Malley to protect home care policies.
  • Centers for Independent Living Partner — Collaborates with the network of community-based Centers for Independent Living to promote independent living across New York State.
  • Consumer Directed Action of New York Partner — Organization co-led by Bryan O'Malley focused on consumer-directed care advocacy.
  • Consumer Directed Personal Assistance Association of New York State Partner — Organization led by Bryan O'Malley to expand access to consumer-directed personal assistance services.
  • FEMA Partner — Collaborated on disability access in disaster response planning.
  • Federal Centers for Independent Living Partner — State Plan partner in the development and implementation of the Statewide Plan for Independent Living (SPIL).
  • National Council on Independent Living Coalition — Member of national coalition advancing independent living for people with disabilities.
  • New York Association on Independent Living Partner — Partnering to host the NYS Disability Rights Hall of Fame as part of NYAIL's Statewide Conference.
  • New York City agencies Partner — Partnered to center disability access in emergency management and disaster response planning.
  • New York State Commission for the Blind Government — Served on commission to influence policy and services for blind and visually impaired individuals.
  • New York State Education Department/Office of Adult Career and Continuing Education Services-Vocational Rehabilitation Government — Designated state entity (DSE) partner in the Statewide Plan for Independent Living (SPIL).
  • New York State HIV Advisory Board Government — Served on advisory board to shape disability-inclusive health policy.
  • Western New York Independent Living (WNYIL) Partner — Cooperated with WNYIL to complete the accessible voting rights documentary.
strategies · 3

How they approach the work

Named approaches extracted from this org’s sources. Where others share an approach, follow it to see the full set of orgs running it.

  • Cross-System Integration for Equity
    methodology: cross_sector_integration
    By integrating disability access into mainstream systems like healthcare, education, and emergency preparedness, the organization advances equity because inclusion at the design stage prevents exclusion and ensures services are universally accessible.
  • Peer-Led Empowerment Model
    methodology: peer_based_model
    By centering programs and advocacy on leadership and participation of people with disabilities, the organization increases individual empowerment, advocacy skills, and systemic impact because lived experience drives authentic change and strengthens credibility within the movement.
  • Proactive Systems Change Through Coalition Advocacy
    methodology: proactive_policy_advocacy
    By building cross-sector coalitions and engaging in proactive policy advocacy, the organization influences state-level policy reforms because collective action amplifies marginalized voices and creates sustainable structural change in employment, home care, and disability rights.