irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $3.95MHEALTH HOMES: REUNITES FAMILIES WITH THEIR CHILDREN AGES 21 AND UNDER WHO ARE MEDICALLY FRAGILE BY HELPING PUT IN-HOME CARE IN PLACE. APPROXIMATELY 500 KIDS WERE SERVED DURING FISCAL 2025.
named programs · 5 · from sources
What they call their work
Care at Home (CAH)
Provides in-home care coordination for medically fragile children up to age 18, enabling them to live with their families instead of in facilities
Fair Hearing Representation
Advocates for families at Fair Hearings when services are denied, ensuring compliance with Medicaid rules and regulatory procedures
Health Homes
Reunites families with medically fragile children ages 21 and under by arranging in-home care and support services to prevent institutionalization
Medicaid Service Coordination (MSC)
Offers case management and advocacy services for children and adults with developmental disabilities to access necessary health and social services
Support Services
Provides case management and advocacy for children and adults with developmental disabilities, including care planning and system navigation
activities · 3 groups
What they do
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Disability Rights Advocacy & Self-Advocacy Empowerment 1 activity
- Advocacy for access to services and systemic reformAdvocates for families of medically fragile and developmentally disabled children by challenging government agencies that violate Medicaid rules or deny services, representing families at Fair Hearings, monitoring system changes, and participating in policy work groups to improve access to care. Provides advance notification to families about program changes and monitors healthcare systems to protect service continuity.
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Home Care Services for Elderly and Disabled 1 activity
- In-home care and service coordination for medically fragile childrenProvides in-home care services to medically fragile children and young adults aged 21 and under, reuniting them with their families. The organization serves approximately 500–671 children annually, based on recent fiscal year data, and supports transitions from hospital to home, including the first such transition in New York State for a child on life support.
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Residential Support for Developmental Disabilities 1 activity
- Medicaid service coordination and case management for children with developmental disabilitiesProvides Medicaid service coordination, case management, and advocacy for children and adults with developmental disabilities. Over 150 case managers support 5,000 children annually across New York State, developing individualized Plans of Care using Protected Health Information and coordinating with medical and social service providers to secure necessary services.
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financials · form 990 · fy2024
revenue
Total revenue$9.74M
Contributions & grants$957K10%
Program service revenue$8.63M89%
Investment income$142K1%
Other revenue$4K
expenses
Total expenses$9.33M
Program expenses76%
Admin / overhead24%
Fundraising0%
Salaries & benefits$6.49M
Grants paid out$0
Largest expense lineCompensation
balance sheet
Total assets$14.33M
Cash$1.33M
Investments$4.21M
Liabilities$8.40M
Net assets$5.93M
Liquid reserves7.1 mo
5 years on record · 2019–2024 · YoY revenue -7.0%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 2
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| MARGARET MIKOL | EXECUTIVE DIRECTOR | 38 | $341K |
| ELENA BOERUM | VP HUMAN RESOURCES | 38 | $211K |
board members · 7
- AMY PUTMAN — BOARD MEMBER
- DEIRDRE IMUS — BOARD MEMBER
- GERARD J IGEL MD — VICE PRESIDENT
- KATHY TOMPKINS — TREASURER
- PHILIP LAWRENCE — PRESIDENT
- TIMO BURBIDGE — BOARD MEMBER
- YVES MIKOL — SECRETARY
relationships · 26
Who they work with
- Buffalo Government — Operates an office in Buffalo, NY as part of statewide service delivery
- Buffalo Partner — Operates a service office in Buffalo, indicating regional coordination in Western New York.
- Centers for Disease Control (CDC) Government — Cites CDC data on developmental disabilities, birth defects, and autism in New York State.
- Guardian Dental Partner — Insurance carrier providing dental and life insurance services to eligible employees in NYC and upstate offices.
- NYS Department of Health Government — Receives Protected Health Information for billing and payment of services, including Medicaid reimbursement.
- NYS Office of Mental Retardation and Developmental Disabilities Government — Receives Protected Health Information for billing, payment, and determination of program eligibility.
- New York City Government — Operates offices in New York City as part of statewide service delivery
- New York City Partner — Operates a service office in New York City, indicating local coordination or presence.
- New York State Government — Operates within New York State and leverages cost comparisons between hospital and home care to demonstrate public savings.
- New York State Academy of Medicine Government — State medical institution with which SKIP or its co-founder has been affiliated through policy committees.
- New York State Assembly Committee on Home Care Government — State legislative committee with which SKIP or its co-founder has been affiliated through policy committees.
- New York State Consumer Health Care Council Government — State advisory body with which SKIP or its co-founder has been affiliated through policy committees.
- New York State Department of Health Government — State agency with which SKIP or its co-founder has been affiliated through policy committees.
- New York State Physically Handicapped Children’s Program Government — State program with which SKIP or its co-founder has been affiliated through policy committees.
- New York State Planning Council Government — State planning body with which SKIP or its co-founder has been affiliated through policy committees.
- New York’s Office for People with Developmental Disabilities Government — State agency that rates SKIP’s performance and authorizes programs.
- Rochester Government — Operates an office in Rochester, NY as part of statewide service delivery
- Rochester Partner — Operates a service office in Rochester, indicating regional coordination in Upstate New York.
- U.S. Commission on Civil Rights for Persons with Disabilities Government — Federal body with which SKIP or its co-founder has been affiliated through policy committees.
- U.S. Department of Health & Human Services Government — Awarded SKIP the first Federal SPRANS grant to a grassroots family organization.
- U.S. Department of Health & Human Services Government — Federal agency with which SKIP or its co-founder has been affiliated through policy committees.
- U.S. Food & Drug Administration Government — Federal agency with which SKIP or its co-founder has been affiliated through policy committees.
- United Healthcare Partner — Insurance carrier providing medical and dental services to eligible employees in the NYC office.
- Univera Healthcare Partner — Insurance carrier providing health services to eligible employees in upstate offices located in Rochester and Buffalo.
- non-profit provider agencies Partner — Works with non-profit provider agencies to secure services for children with special needs.
- state agencies Partner — Navigates and collaborates with state agencies to secure services for children with special needs.
strategies · 5
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.
- Family-Centered Care Coordination 69 orgsmethodology: family_centered_careBy integrating families as central partners in care planning and delivery, we improve health outcomes and community integration, because family involvement enhances emotional well-being, continuity of care, and long-term success in home-based settings.shared approach: Direct Financial Relief →
- Universal Access with Persistent Advocacy 69 orgsmethodology: universal_access_with_advocacyBy guaranteeing access to services regardless of diagnosis, complexity, or ability to pay—and treating initial denials as challenges to overcome—we ensure equitable care for all medically fragile children, because systemic barriers should not determine health outcomes.shared approach: Direct Financial Relief →
- Collaborative Systems Reform 45 orgsmethodology: systems_reform_advocacyBy engaging in multi-stakeholder policy reform and regulatory advocacy, we expand access to equitable services for vulnerable children, because systemic change is necessary to remove structural barriers to home-based and family-centered care.shared approach: Advocacy Through Empowered Communities →
- Home-Based Care Model 30 orgsmethodology: home_based_careBy enabling medically fragile children to receive care at home instead of in hospitals or institutions, we improve developmental and health outcomes while reducing overall healthcare costs, because family-centered home environments are more conducive to healing and long-term well-being.
- Low-Caseload, Advocate-Based Navigationmethodology: advocate_based_navigationBy assigning dedicated Enrollment Coordinators with lower-than-average caseloads to act as family advocates, we increase access to critical services and system navigation success, because personalized, sustained support builds trust and overcomes systemic complexity.