Member Advocacy
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.
In The News:
Wage boost sought for caregivers of New York’s most vulnerable
“We all support giving our essential healthcare workers like DSPs and other professional caregivers more money, but a one-time bonus is not a long-term solution – we have to permanently raise wages,” said State Sen. John Mannion.
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.
Support the Work Without Worry Act!
The Work Without Worry Act would ensure that young adults with disabilities have the opportunity to work and see if they can sustain themselves without losing their suitability for DAC benefits.
Take Action Now: Help us Raise the DSP Wage!
Direct Support Professionals (DSPs) enable people with Intellectual and Developmental Disabilities (IDD) to live full, prosperous lives. They work in homes, in schools, and in the community as facilitators, mentors, and advocates who dedicate their time and talent to supporting individuals with disabilities. They often carry out healthcare tasks overseen by nurses and dietitians, administering medication, developing meal plans, assisting with transportation and mobility, while always being respectful of a person’s dignity and privacy.
It takes a lot to be a DSP. Despite the high demands of the job, DSPs currently earn only slightly more than the minimum wage. This low pay is forcing these essential workers to look for other jobs so they can afford food, shelter, and basic life necessities. As a result, currently 25% of these jobs are vacant, and people with IDD are left without the support they need. Without immediate action, the DSP workforce crisis will continue to force service reductions and program closures throughout the state, leaving individuals with IDD without their professional support assistance.
According to a recent survey conducted by New York Disability Advocates:
- 93% of providers saw a decrease in job applicants this past year
- Statewide vacancy rates increased 75% since pre-pandemic levels
- 25% of all DSP positions are currently vacant statewide
- 48% of providers were forced to close or reduce programs due to a lack of staff
- 39% of providers did not reopen programs due to staff shortages
New York State can begin to end the DSP workforce crisis by approving Governor Hochul’s proposed 5.4% COLA and converting her proposed $3,000 one-time bonus payment into a permanent wage increase of approximately 10%. This should be just the first step towards a multi-year plan to establish a permanently funded living wage that is set significantly above minimum wage.
A one-time bonus will, at best, only maintain the unacceptable status quo. One-time funding does not raise the base pay above minimum wage and so will not significantly help recruitment.
Use the One-Click platform below to tell Governor Hochul and your legislators to permanently raise DSP wages in the FY 2022-23 Executive Budget!
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
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.
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.
Act now to help fix the “family glitch”
Right now, people who do not have access to affordable health insurance through their jobs can get financial help to buy coverage in the Affordable Care Act marketplace.
But current rules only consider the cost of the insurance for the employee with the job and don’t take into account the cost of insurance for spouses, partners, dependents, or other family members.
This means that families who need insurance but can’t afford the cost for the whole family on the employee’s plan aren’t guaranteed an affordable option.
This “glitch” means that 5 million people, including adults and children with disabilities, don’t have access to affordable health coverage.
The Biden Administration has proposed new rules that would fix the “family glitch,” which left millions of families—including the families of many people with disabilities—ineligible for financial help through the health care marketplace.
We need your help to turn this proposal into reality so that all people can get affordable access to the health care they need!
Everyone should have access to care – and your story can help!
- Do you or a family member have a disability, and have you been unable to afford health coverage?
- Have you been unable to afford care for your children because of an expensive employer-based plan?
- Has your spouse or partner been left without coverage?
ANCOR Amplifier
The ANCOR Amplifier is your one-stop shop for taking action to support providers of services to people with intellectual and developmental disabilities. Check back regularly for opportunities to support your association’s federal advocacy efforts!
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.
Email: planning@opwdd.ny.gov
Postal Mail:
OPWDD
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.
Email: planning@opwdd.ny.gov
Postal Mail:
OPWDD
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.
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