Staying Informed, Staying Strong

posted on Thursday, February 6, 2025

As a nonpartisan organization, EPI is committed to advocating for the needs of our community. Whether it’s ensuring access to essential I/DD services or access to quality child care, we provide timely, accurate information - without the frenzy or scare tactics. We closely monitor policy changes to keep people informed and empowered to take action where it matters most.

With that in mind, we want to share an important article from our national trade association American Network of Community Options and Resources (ANCOR), addressing recent events that impact people with disabilities and the services that support them. Read below…

For 54 years ANCOR and its members have worked to support people with intellectual and developmental disabilities (I/DD) and Autism in the community. Inclusion is the foundation of our work.

It is for this reason that we are compelled to address the comments, actions, and revelations that shook the core of our community this week.

• Medicaid is the lifeline for people with disabilities and their families. The OMB memo directing a temporary freeze of certain federal funding programs was highly disruptive. The fragility of our nation’s system of community-based services cannot be overstated. After years of program closures exacerbated by the COVID-19 pandemic, community providers continue making decisions today about whether to shutter programs and terminate services based on the workforce crisis and the sustainability of Medicaid funding. We were relieved that action was taken to re-open the state Medicaid portals to permit the processing of Medicaid claims. However, any cessation of grant funding that supports community inclusion and rehabilitation, both at home and abroad, leaves us deeply concerned.

• Contrary to statements made during the confirmation hearings for the President's nomination for Secretary of Health & Human Services, Medicaid services are not fully funded by the federal government. Rather, they are delivered in partnership between states and the federal government. Each state determines the scope of and payment for services to be provided, while the federal government matches states’ investments. This combined funding is then used to pay for health care and other services, including reimbursement to community providers for the services they deliver to people with I/DD, and jobs for the people who provide those services.

• Vaccines do not cause Autism. The perpetration of this myth, and the absence of a complete and thorough repudiation of such misinformation, is profoundly irresponsible and causes great harm to people with Autism, their family members and loved ones.

• COVID-19 was far deadlier for people with I/DD than for those without. The study, “COVID-19 Mortality Burden and Comorbidity Patterns Among Decedents with and without Intellectual and Developmental Disability in the US,” looked at 2020 death certificate data to examine causes of death for people with or without I/DD. Researchers found that for those without I/DD, COVID-19 was the third leading cause of death, following heart disease and cancer. But for those with I/DD, COVID-19 was the number-one cause of death. It was for this reason that ANCOR advocated strenuously for people with I/DD to be prioritized for vaccination.

• The inclusion of people with I/DD in our nation's workforce has long been a nonpartisan goal of the federal government and every state government. Blaming Wednesday’s tragic aviation disaster on disability employment initiatives does an enormous disservice not only to people who were born with or have acquired a disability, but to all of us. One in four Americans will experience disability over the course of their lifetime. Disability is part of the human experience, not a scapegoat for catastrophic accidents.

• After this incredibly difficult week, a brighter light emerged with the Politico reporting that the President, “when asked about broader spending cuts in the Oval Office on Friday afternoon while signing executive orders, said we'll “love and cherish Social Security, Medicare and Medicaid”—the last of which insures more than 70 million Americans. “We're not going to do anything with that, unless we can find some abuse or waste,” Trump said. “The people won't be affected. It will only be more effective and better.”

Inclusion of people with disabilities enriches the fabric of our society, and advancing the future of supports and services for people with I/DD is why ANCOR exists. As a trusted conduit of resources for providers, policymakers and the public, it is our obligation to present the facts that may have been overlooked during this week’s events. We stand ready to move forward from the unfortunate events of this week and serve as a resource for this Administration and Congress as they fulfill their obligations to all Americans—including those with disabilities.