Member Advocacy

Your voice is crucial in our efforts to defend the health, services, and wellbeing of the people we support.

Advocate Today

Southern Tier Connect’s members with intellectual and development disabilities and their families rely on Medicaid, a service system in dire need of updating. People are stuck on waiting lists, the direct care workforce is underpaid resulting in system-wide staff shortages, and too often, unpaid family caregivers fill in the gaps. The COVID-19 pandemic magnified these problems and exposed cracks in the OPWDD infrastructure that supports people with disabilities.

Recent changes in funding, advocacy, and legislative activity in Albany and Washington DC are heading in a positive direction. Learn more about these new opportunities for members and families below.


A Unified Effort

The seven CCOs/HHs have unified our efforts for advocacy by founding the Care Management Alliance of New York. Please sign up for CMANY alerts on their website to stay informed of future CCO advocacy issues.

Federal Advocacy

Social Security Act

Social Security and SSI play a vital role in helping people with disabilities to live independently in the community and meet their basic needs. Many people with disabilities rely on benefits for much of their income. Discussions about Social Security, however, often focus on retirement and seldom address potential effects on people with disabilities in the retirement, disability, and survivor’s programs.

Contact your local representative and ask them to support SSI Restoration Act H.R.3824 

Click here to take action now. 

HCBS Access Act

“The America Rescue Package made important investments in home and community-based care. But Congress must do more. It must do much more. We must make HCBS a mandatory benefit in Medicaid and expand Medicare to cover more at home, long-term care services.” HCBS are often essential services for people with disabilities on Medicaid to live well in their homes. Yet, there are long waiting lists for services and each state administers HCBS differently. Access was already suboptimal before the pandemic and was worsened dramatically this past year. (D. Dingell and B. Casey, et al)

Tell Congress to Pass the Better Care Better Jobs Act, a Historic Investment in Disability Services.

Click here to take action now. 

American Jobs Act (Direct Support Professionals)

The American Jobs Act plan aims to allocate $400 billion toward expanding access to quality and affordable home care for elderly and disabled Americans. Specifically, through the creation of new, competitive home-care jobs with stronger wages and benefits, the plan seeks to dramatically expand caliber care to the hundreds of thousands of Americans left out by the previous system. On its face, thepPlan’s investment in home-care garners bipartisan support and from employers and employees alike. Click here for more information.

Click here to advocate now.

OPWDD Advocacy

Federal Medical Assistance Percentage (FMAP) Funding

The federal government implemented the American Rescue Plan in 2021 which sets aside funding for home and community-based services through Medicaid’s Federal Medical Assistance Percentage (FMAP) funding. This is being delivered in the form of a 10% one-time rise in the federal government’s share of spending on the Medicaid program starting April 2021 and extending through March 2022.

OPWDD is seeking feedback from the community of people we support and their family members, advocates, and providers to determine how the funding can best be used to support people. Visit OPWDD’s page on FMAP funding for more information.

Take Action Now: Contact OPWDD and submit your written testimony.


Postal Mail:
Attn: Communications Office 
44 Holland Avenue, 3rd Floor 
Albany, NY 12229 

5.07 Five-Year State Plan

(Drafted July 1, Review Period, Finalized Nov 1)

OPWDD urges self-advocates, family members of people with developmental disabilities, advocates, and other interested parties to take part. We ask that each person take part in only one forum so that we can hear from as many people as possible. You may choose to provide spoken testimony at the event, submit written testimony, or simply listen. Visit OPWDD’s webpage about the Statewide Comprehensive 5.07 Plan for more information. 

Take Action Now: Contact OPWDD and submit your written testimony.


Postal Mail:
Attn: Communications Office 
44 Holland Avenue, 3rd Floor 
Albany, NY 12229 

HCBS Waiver Amendment

The HCBS Waiver is the Medicaid program that provides opportunities for adults and children with intellectual and developmental disabilities to receive services in their own home or community. 

The July 1, 2021 Amendment to the waiver includes the option for providers to permanently adopt multiple service delivery modalities that were used during the pandemic. Read more here in a message from the Commissioner in this bulletin.

Take Action:  Contact your Care Manager to ensure services are person-centered.

New York State Legislature Advocacy

Tuition Parity Bill

The Tuition Parity Bill [S.6516-A (Mannion)/A.8013-A (Benedetto)] is an act which amends the education law, in relation to providing an annual growth amount for tuition and regional rate reimbursement for approved school-age and preschool special education programs. This bill is important because it allocates funding to ensure the continuity and growth of special education schools and programs, such as The School at Springbrook.

Reach out to Governor Kathy Hochul to tell her to sign the Tuition Parity Bill into law and take this necessary step to invest in the I/DD education community. Visit Springbrook’s advocacy page to learn more and find a customizable letter.

21+ High School (COVID Class) Bill A8021

This bill provides that a student enrolled in an individualized education plan during certain school years may continue to receive educational services until the student completes the services pursuant to the individualized education plan or turns twenty-three years of age, whichever is sooner;  and provides for the repeal of such provisions upon the expiration thereof. “Assemblymen Abinanti has specifically requested that the Governor sign A8021 immediately so services can be provided to students over the summer. We do not know when the bill will be sent but we are asking advocates to request the Governor to sign this bill as well. Attached is a sample letter for those interested.”

Good news. The Governor signed A8021-the bill for compensatory services for special ed students over 21. Thanks to Assemblyman Abinanti and NYS PTA Director Kyle Belokopitsky and Commissioner Rosa for all your dedication to the students of NYS.

Take Action: Follow up with your district today. Make sure to include the June 2021 NYSED Guidelines as well!

Additional Resources: 

ABA Therapy: Bill S1662

From Senator Mannion’s office, “Although the ABA legislation was not in his committee, that is a great addition as well. None of the bills have been delivered to the Governor yet. Once they are delivered, the Governor will have ten days to chapter or veto the legislation.”

Take Action: Complete this form to support the bill. 

Additional Resources: 

Housing: Bill S4469

Support proposed legislation to make Housing Navigation Services (S4469) a NYS waiver program. Details: To assist individuals in finding appropriate housing that meets their specific housing goals and develop individualized housing action plans.

Take Action: Complete this form to support the bill.

Additional Resources: 

Key Talking Points

When writing your letter, be sure to:

  • Use your full name
  • Say where you live
  • Make it known if you are a voter in their district
  • Explain what you want your legislator to do 
  • Explain why this issue is important to you, giving real-world, compelling examples of how these services are vital to you or your loved one


Advocacy Tools

Find and Contact Your Elected Officials

Additional Contacts

John W. Mannion | NYS Senate
Developmental Disabilities Committee Chair

Aileen Gunther | Assemblywoman
Assembly District 100
Chair of the Assembly Committee on Mental Health

Thomas J. Abinanti | Assemblyman
Assembly District 92
Chair of the Assembly Committee on Disabilities

Thank you.

We are thrilled to report that the proposed 23% funding cut to Care Coordination Organizations/Health Homes was restored in the NYS FY 2021-22 final budget!

We are so grateful to all our members and families, our Family Advisory Board, and to the collaborating CCOs who advocated for the critical work we do to assist people with intellectual and/or developmental disabilities (I/DD) and their families so that they may live a quality life. Thank you.

Over the past ten weeks, all the CCOs across New York State aligned under the Care Management Alliance of New York (CMANY). Together, we rallied in one strong and consistent voice, denouncing the proposed funding cut by OPWDD that would have significantly weakened the care coordination services we provide to the I/DD community. You helped alert our assembly members, senators, and Governor Cuomo that I/DD Care Management services were in jeopardy.

You helped to educate your elected officials on the essential role of Care Managers in connecting loved ones with I/DD to preventative and specialized healthcare, behavioral health, dental, and community-based services so they can live well-rounded lives. Advocates across New York State told the Governor and legislators that it would be unconscionable and devastating to dismantle the CCO/HH model of care created in 2018 to protect the State’s vulnerable I/DD population.

We could not have had this outcome without you.

To all the people who have supported us in these advocacy efforts, your efforts mean so much. You have brought great awareness to the important work of Southern Tier Connect. Thank you for your testimonials and support.

Please join us in celebrating this hard-fought victory to keep the CCO/HH model of care strong and vital for the 110,000+ individuals with I/DD in New York State! We are proud to connect our members with the supports they need and are eternally grateful for your advocacy.

New York State Outline

Your Support Helps Protect Our Loved Ones. 

Because of your help with our advocacy efforts, individuals with intellectual and developmental disabilities are now included as first priority for receiving the Covid-19 vaccine. This is wonderful news and will help our efforts in keeping our community safe and healthy.

If you or your loved one is a member of Southern Tier Connect and you are interested in receiving the vaccine, please contact your Care Coordination Manager. They will follow up with you as it becomes available and will help you schedule an appointment.

header photo / cliff booth 2020

capital photo / david renken 2020