Advocating for Intellectual & Developmental Disabilities in the 2025 NYS Budget
Learn about the importance of Care Coordination Organizations like Person Centered Services and how you can advocate for their vital work.
As one of seven Care Coordination Organizations (CCOs) in New York State funded entirely by Medicaid, Person Centered Services must have the Legislature ensure the following is included the 2025 NYS budget to accurately reflect the rising costs of care:
– Cost-of-Living Adjustment (COLA) restored for CCOs and increased from 2.1% to 7.8%.
Last year in 2024 NYS budget, Person Centered Services and the other CCOs were excluded from the COLA afforded to other human services organizations.
In addition, the CCOs received a 4% Medicaid rate reduction in the 2024 NYS budget.
Currently, the proposed 2025 NYS budget again excludes CCOs from the COLA. Also, the current proposal includes only a 2.1% COLA for the other human services organizations.
Call to Action!
Through the one-click tool below, you can quickly and easily let your State elected officials know that you are advocating for CCOs to be included in this year’s COLA, and supporting the ask that the COLA be increased from 2.1% to 7.8% to keep up with rising costs.
Please complete the form below and click on the red button — “send email” — to see the pre-written letter. We invite you to personalize the letter with your own story! Personal stories are powerful tools for advocacy. They help lawmakers understand the real impact of policies and funding decisions on real people.
What is Care Coordination for people with intellectual and developmental disabilities?
Person Centered Services and the other CCOs are the only entities in NYS that address the comprehensive care needs of people with I/DD. We provide health home care management by coordinating available medical, social, and other services to improve overall health and wellness as a safety net for people with I/DD.
To do so, our Care Coordinators create and implement a comprehensive life plan for each of our members to address social determinants of health, such as transportation, family support, safety, job assistance, transitioning to new stages of life, overall wellness, and other social needs. Care Coordinators then identify, link, and refer to services, care, and resources to support their entire lives.
As the health home for our members, Person Centered Services also manages their medical care and services to help our members better understand and address all their physical and mental health or social service needs.
Our Care Coordination and Clinical teams, comprised of Care Coordinators, nurses, behavioral and social determinants of health specialists, and other clinicians work to improve outcomes and the quality of life for people with I/DD. For example, our teams:
– Review physical exams, develop health goals, provide educational resources, initiate prevention strategies, close gaps in care, and guide on-going health-related conversations.
– Monitor emergency room visits and hospital admissions to reduce preventable inpatient care and help ensure appropriate follow-up with providers.
– Serve as a communication bridge between our members and their health care providers.
Rising costs and number of people with I/DD in need of Care Coordination Services
Children and adults with I/DD are among the most vulnerable in our population with challenging lives requiring a holistic approach for all their social support and complex medical needs.
The demand for Care Coordination is rising, with 2,000 new enrollees annually with more than 21,000 people currently in the enrollment process for all seven CCOs — potentially increasing the number of people served by 20%.
Labor costs are also surging for CCOs. From 2022 to 2023, Care Coordinator/Manager salary and benefit costs grew by nearly $41 million (14%). Meanwhile, workers’ compensation costs rose by more than $1 million (66%).
There are nearly 130,000 children and adults in NYS with I/DD who have Office for People with Developmental Disabilities (OPWDD) eligibility. More than 18,000 people who live in 18 counties throughout Western New York, the Finger Lakes, and the Southern Tier regions receive care coordination services from Person Centered Services.
Most people (75%) with I/DD live with family or on their own. They need Care Coordination to stay healthy and connected to their communities.
Investments in Workforce, Technology, and Infrastructure
– To keep pace with the growing demand for services and rising labor costs, Person Centered Services and the other CCOs have made substantial investments in the system, expanding clinical teams, increasing salaries, and enhancing benefits.
– Since 2021, every CCO has increased care manager salaries and hiring. Some CCO/HHs have scaled their care management budgets by more than 30% to retain qualified care managers and prevent turnover.
– In addition, CCO/HHs have enhanced quality and compliance programs, invested in new technology, and bolstered staff training and education initiatives.
The Need for Qualified and Culturally Competent Care Coordinators and Managers
– CCOs must be adequately funded. Without restoring the COLA and increasing it to 7.8%, the industry risks losing the very people who make the system work — jeopardizing the quality and accessibility of care for those who need it most.
– Person Centered Services and the other CCO support members across diverse communities. We offer services in over 200 languages — requiring a set of cultural and linguistic competencies that are in high demand.
– Understanding the unique cultural practices of each community we serve is essential to ensuring accessibility, inclusivity, and efficacy of care. This will be challenging, and in some cases impossible, to sustain with a weakened workforce.
Failure to include Person Centered Services and the other CCOs in the COLA will directly impact the health and quality of life for people with I/DD by reducing our ability to effectively meet their diverse and increasing needs.
Additional information has been gathered by The Care Management Alliance of New York, Inc., a partnership of the State’s seven Care Coordination Organizations/Health Homes (CCO/HHs) that include: Advance Care Alliance, Care Design NY, LIFEPlan CCO, Person Centered Services, Prime Care Coordination, Southern Tier Connect and Tri-County Care:
– RESTORE CCO/HHs to the Rate Increase/COLA in SFY 2025-2026
– Talking points for self-advocates and families
ADVOCACY UPDATES & RESOURCES
DDAWNY – The Fight for Medicaid: What You Can Do To Help
CMANY – Effective Lobbying Techniques & Engaging Legislators Webinar
Stand Up for Medicaid: Protect Services for People with I/DD
Federal Budget – Where Things Stand Today (Update as of 2/24/25)