irs program accomplishments · form 990 part iii · fy2024
What they reported doing
- #1 primary $11.60MRESIDENTIAL SERVICES - ENABLE INDIVIDUALS WITH DEVELOPMENTAL DISABILITIES OR OTHER NEUROLOGICAL DISORDERS TO EXPERIENCE THE INDEPENDENCE AND SELF-ESTEEM THAT COMES WITH HAVING A HOME OF THEIR OWN. APPROXIMATELY 70 INDIVIDUALS SERVED IN 2024.
- #2 $2.07MDAY PROGRAMS - HELPS INDIVIDUALS ACHIEVE PERSONAL GROWTH AND ESTABLISH RELATIONSHIPS WITHIN THEIR COMMUNITY THROUGH VARIOUS SOCIAL AND SKILL BUILDING ACTIVITIES. APPROXIMATELY 50 INDIVIDUALS SERVED IN 2024.
named programs · 5 · from sources
What they call their work
Brain Injury Services
Provides specialized support through TBI and NHTD Waiver programs, including counseling, training, and personalized recovery services for adults with acquired brain injuries.
Day Programs
Offers social and skill-building activities to support personal growth and community integration for individuals with developmental disabilities and neurological conditions.
Epilepsy Services
Delivers epilepsy-specific education, training in seizure first aid, advocacy, and support programs including Camp EAGR for children with epilepsy and their siblings.
Residential Services
Provides individuals with developmental disabilities or neurological disorders the opportunity to live independently in community-based homes, promoting self-esteem and autonomy.
Self-Direction Services
Enables individuals with developmental disabilities to manage their own budgets and services, including hiring personal staff and choosing community-based supports such as therapy, classes, and technology.
activities · 11 groups
What they do
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Healthcare Compliance and Ethics Programs 1 activity
- Compliance and internal policy developmentEstablished internal policies and procedures to ensure compliance with billing, claims submission, and Medicaid requirements, prevent waste, fraud, and abuse, and promote a culture of open communication where staff can report concerns without fear of retaliation.
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Day Habilitation Services 1 activity
- Day habilitation and day programs for skill-building and community integrationOperates day programs focused on personal growth, social development, and community integration through structured activities, serving approximately 50 individuals annually. Includes the Day Habilitation Without Walls (WOW) program and other skill-building initiatives.
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Organizational DEI Capacity Building 1 activity
- Diversity, equity, and inclusion capacity buildingConducted an agency-wide diversity assessment in 2020, developed an action plan in 2021, and established ongoing learning and feedback mechanisms to advance diversity and inclusion across all organizational levels.
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Neurological Disability Support & Advocacy 1 activity
- Epilepsy-specific support and seizure first aid trainingProvides expert support, counseling, and personalized programs for children and adults with epilepsy and seizure disorders. Trains 6,000 people annually in seizure first aid and delivers comprehensive epilepsy-specific services across Upstate New York.
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Charity Event Organization 1 activity
- Funding epilepsy programs through annual Chocolate Ball proceedsFunds epilepsy programs that support thousands of children and adults in Upstate and Central New York through proceeds raised by the annual Chocolate Ball event.
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Respite Care for Developmental Disabilities 1 activity
- In-home and community respite care for individuals with epilepsyProvides in-home and community-based respite care for individuals of all ages with epilepsy, including trained staff capable of administering epi-pens. Operates an after-school respite program at 1650 South Avenue following the Monroe County School District calendar.
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Specialized Summer Camps for Disabilities 1 activity
- Recreational and camp programs for individuals with epilepsy and developmental disabilitiesOffers free to low-cost recreational events and operates specialized camps including Camp EAGR (a sleepaway summer camp for children with epilepsy and siblings), Camp Coast (for young adults with epilepsy and developmental disabilities), and other community outings such as museum visits, hikes, and theater performances.
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Residential Support for Developmental Disabilities 1 activity
- Residential services for individuals with developmental disabilities and neurological disordersProvides community-based residential services enabling individuals with developmental disabilities or neurological disorders to live independently, operating 12 residential locations and specific programs such as the Supportive Apartment Program and Individual Residential Alternative (IRA) homes. Served approximately 70 individuals in 2023–2024 and 68 in 2021.
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Disability Rights Advocacy & Self-Advocacy Empowerment 1 activity
- Self-Advocate group facilitationFacilitated the creation of a Self-Advocate group to promote self-representation and empowerment among individuals with disabilities.
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Brain Injury Support & Rehabilitation 1 activity
- Support services for individuals with brain injury and cerebral palsyProvides personalized counseling, training, and care programs for adults with traumatic and acquired brain injuries (including stroke) and individuals with cerebral palsy, supporting 63,700 hours of brain injury care annually and promoting self-directed, independent living.
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Uncategorized 1 activity
- Self-Direction Services for individuals with developmental disabilitiesProvides Self-Direction Services across Finger Lakes, Western and Central New York, and Southern Tier regions, supporting 780 individuals annually. Acts as Employer of Record, reviews invoices and timesheets for compliance, offers HR support for hiring, and provides access to eVero for documentation and communication. Served 689 clients in 2020.
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financials · form 990 · fy2024
revenue
Total revenue$54.16M
Contributions & grants$5.58M10%
Program service revenue$48.05M89%
Investment income$419K1%
Other revenue$112K
expenses
Total expenses$47.84M
Program expenses94%
Admin / overhead6%
Fundraising1%
Salaries & benefits$34.95M
Grants paid out$173K
Largest expense lineCompensation
balance sheet
Total assets$29.03M
Cash$3.15M
Investments$6.52M
Liabilities$10.39M
Net assets$18.65M
Liquid reserves2.4 mo
4 years on record · 2020–2024 · YoY revenue +35.4%
leadership · form 990 part vii · fy2024
Who runs it
paid leadership · 7
| Name | Title | Hours/wk | Compensation |
|---|---|---|---|
| JEFF SINSEBOX | PRESIDENT | 40 | $298K |
| KIMBERLI JOHNSTON | CFO | 35 | $182K |
| JOSEPH ABBOTT | COO | 40 | $182K |
| ESTHER NEAL | VP HUMAN RESOURCES | 40 | $165K |
| LORENA DELANCEY | VP ADVANCEMENT | 40 | $141K |
| YVETTE HANSEN | VP QUALITY & CCO | 40 | $122K |
| KENNETH SIMPSON | DIRECTOR OF INFORMATION TECHNOLOGY | 40 | $110K |
board members · 13
- ALLAN A ULRICH — VICE CHAIR
- BEN JACOBS — BOARD MEMBER
- CHETNA CHANDRAKALA — BOARD MEMBER
- COLIN DESROSIERS — BOARD MEMBER
- DAVID S AUERBACH — BOARD MEMBER
- DEANA BONNO — BOARD MEMBER
- INNA HUGHES — BOARD MEMBER
- MARY E SHEPARD — SECRETARY
- MICHAEL BURNS — BOARD MEMBER
- MOLLY WANZENRIED — CHAIR
- RENEE MADATHIL — BOARD MEMBER
- ROBERT TOSCANO — BOARD MEMBER
- SABRINA MCLEOD — TREASURER
relationships · 11
Who they work with
- Al Sigl Network — EPI has been a member agency of Al Sigl for 40 years.
- Al Sigl Center Partner — Member agency relationship established in 1986
- EPI Partner — Provides services to individuals with epilepsy, developmental disabilities, brain injuries, and chronic health conditions in New York.
- Epilepsy Alliance America Network — Founding member since 2018, part of national network of epilepsy service providers
- Monroe County School Districts Partner — Aligns After-School Respite program calendar with Monroe County School Districts.
- New York State Office of People With Developmental Disabilities Government — Funder and regulatory body for EPI's developmental disability services
- New York State Office of People With Developmental Disabilities Government — Primary funder of EPI's services for people with developmental disabilities.
- OPWDD Government — State agency determining eligibility and approving budgets for Self-Direction services
- Rochester-Monroe Anti-Poverty Initiative (RMAPI) Coalition — Member of a multi-sector collaborative initiative addressing economic inequities in the community.
- UR Medicine Epilepsy Center Partner — Refers individuals to Camp EAGR, a program operated by EPI.
- United Way of Rochester Partner — Participated as a challenge partner in the United Way of Rochester’s 21-Day Equity Challenge.
strategies · 2
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.
- Culturally Informed and Community-Engaged Programmingmethodology: culturally_informed_programmingBy designing programs with cultural awareness and involving community stakeholders in development, the organization ensures inclusivity and relevance of services because culturally responsive models increase trust, access, and participation among diverse populations.
- Person-Centered Care and Self-Direction Modelmethodology: person-centered_careBy enabling individuals with developmental disabilities, epilepsy, or brain injury to direct their own care and tailor support services, the organization improves health, well-being, independence, and social inclusion because autonomy and personal choice are central to dignity and sustained engagement.