Advocating for People with I/DD and Their Families
Learn why and how to advocate for people with intellectual and developmental disabilities (I/DD).
People diagnosed with intellectual and developmental disabilities (I/DD) who receive Care Coordination services must have the same rights, responsibilities and opportunities as all others.
Care Coordination services are highly personalized and support people with I/DD and their families, whose lives are always changing. Helping with everything from basic needs and rights of our members to making sure life-altering health care and services are received requires well-trained and caring Care Coordinators who focus first and always on what’s best for our members.
What are we advocating for?
Everyone connected to Person Centered Services can have an important role in our advocacy efforts to gain the support of Federal and State elected officials for necessary funding.
Receiving the Cost-of-Living Adjustment (COLA) in the 2026 New York State budget for Care Coordination Organizations is critically important so our Care Coordinators can address the increasingly complex needs of people with intellectual and developmental disabilities, who are among the most vulnerable population in our communities.
And yet, when our Care Coordinators are fully supported themselves, they fulfill our mission to connect our members to the care, support and opportunities that maximize their quality of life, as proven by those on our 2025 Person Centered Services All-Star team.
Why is advocating necessary?
New York State’s Care Coordination Organizations (CCOs) are the foundation of the care system for people with intellectual and/or developmental disabilities (I/DD).
For individuals and families navigating complex Medicaid and service delivery systems, Care Coordinators — provided through CCOs — are their primary point of contact. Care Coordinators connect individuals and families to healthcare, behavioral health services, housing, employment services, and long-term supports.
Only people with I/DD who are granted eligibility by the Office for People with Developmental Disabilities and who have Medicaid can receive Care Coordination services.
While these changes present challenges, they also make our advocacy efforts necessary to ensure the best possible support for our service delivery system and the people with I/DD we support.
How do you advocate? Contact your elected officials …
Contacting elected officials who represent you about the importance of supporting Care Coordination Organizations who support people with I/DD can make the difference.
To search for your New York State elected official and their contact information, go online here.
Tell them:
“1. Restore Care Coordination to the Targeted Inflationary Increase in the proposed NYS FY 2026-2027 Budget.
2. Support legislation to expand medication administration by trained direct support professionals (DSPs) (A.7284 McMahon / S.6334 Fahy).
3. Support legislation to expand Medicaid coverage for family caregiver services by authorizing reimbursement for eligible family caregivers of children with intellectual and developmental disabilities who provide specified in-home services.”
Click here to use a quick advocacy tool, and send an email message to your representative.
… and share your story
Sharing stories of how Care Coordination Services have improved the health and lives of people with intellectual and developmental disabilities and their families is another great way to advocate.
If you have a story to share, you can do that here.
Want to learn more about advocating?
Person Centered Services is proud to partner with the following:
Developmental Disabilities Alliance of Western New York (DDAWNY)
The Care Management Alliance of New York:
– Watch a video and view PowerPoint slides from the recent online event hosted by CMANY called Shared Stories – A Panel Discussion with Disability Advocates.
– View recordings of the “NYS Budget Process: An Overview and Potential Impacts to I/DD Services in 2026” and the “2026 NYS Budget: The Legislative Agenda and What’s at Stake for I/DD Services.”
– Explore core talking points from CMANY’s 2025 visit to speak with New York State legislators in Albany.
– Find a list of recommendations from self-advocates through the Coalition for Whole Person Supports.
We encourage you to rely on resources from these sources to better advocate for people with intellectual and developmental disabilities.
What is Person Centered Services?
Person Centered Services is a Care Coordination Organization that provides health home care management by coordinating available medical, social, and other services to improve overall health and wellness for people with intellectual and developmental disabilities so they may maximize their quality of life.
Person Centered Services provides Care Coordination services for more than 18,000 people with intellectual and developmental disabilities in 18 counties throughout Western New York, the Finger Lakes, and Southern Tier regions.
Person Centered Services Advocacy Resources
If your self-advocacy group is interested in what our Member Relations Team can offer, please reach out to us at memberrelations@personcenteredservices.com.