ASAN IACC Meeting Comments for April 4, 2023

a pen on a notebook

The Autistic Self Advocacy Network appreciates the opportunity to submit comments for the April 4th, 2023 IACC meeting. In our last comments to the IACC, ASAN supported research on communication access and different forms of augmentative and alternative communication for autistic people. We recommended that the IACC support HHS’ implementation of the Home and Community Based Services Final Regulation when it goes into effect in March 2023. We updated the IACC on legislation banning the use of electric skin shock for behavior modification to “treat” aggression or self-injury.  We asked the IACC to pressure the FDA to pass a new ban without delay. 

 We now recommend that the IACC advise HHS on its implementation of the Home and Community Based Services Final Regulation (HCBS Settings Rule).  The HCBS Settings Rule lays out the minimum standards for home and community based services providers. The HCBS Settings Rule is in effect. We also recommend that the IACC advise HHS to protect HCBS funding and funding for Medicaid. HCBS and other services provided by Medicaid are vitally important for millions of people. There have been calls in Congress to freeze and remove Medicaid funding. Finally, we urge the IACC to notify the public about, and share accessible resources describing, the end of the COVID-19 public health emergency (PHE). Many government programs protecting the most marginalized individuals will end after the PHE is declared to be over.  These individuals  will need information and guidance on what to do to protect themselves and their rights, as well as how to obtain replacement funding for any services they lose. 

Promotion of Full Compliance with HCBS Settings Rule

The Home and Community Based Services Final Regulation (herein referred to as the HCBS Settings Rule or the Rule) went into effect on March 17, 2023. The HCBS Settings Rule sets minimum standards for what a setting must do to be considered truly home and community based and not just an institution by any other name. We urge the IACC to promote full compliance with the HCBS Settings Rule.

The HCBS Settings Rule will have a marked impact on the lives of many autistic people who receive HCBS, as well as people with disabilities who receive HCBS more generally. The Rule sets basic standards for what kinds of protections and rights service providers must provide to their clients with disabilities. For instance, people who receive HCBS in residential settings (such as group homes or assisted living facilities) must have basic privacy rights, such as: controlling who can come into their bedroom or living space, having a key to their bedroom or living space, and being able to lock the door to their bedroom or living space. All people who receive HCBS have the right to respect and privacy, and the right to be free of restraint and seclusion. These are basic rights that most people without disabilities take for granted. These are basic rights that are currently being denied to many people with disabilities who receive HCBS.  

States and service providers have had nine years to come into compliance with the Rule. There were multiple postponements of the Rule going into effect.  HHS also included allowances for states to not implement all the parts of the Rule right away, so long as they have filed a Corrective Action Plan with the Centers for Medicare and Medicaid Services (CMS).  Nine years is more than enough time for states and service providers to come into compliance with the Rule. We therefore recommend that the IACC advise HHS to pursue strong enforcement and oversight of the Rule’s provisions.  

Protecting Home and Community Based Services and Medicaid Funding

In his second State of the Union address, President Biden called for protecting Medicare in Social Security, but not Medicaid. Medicaid funding is vital for many autistic people, as well as people with other disabilities, to receive health care services. ASAN is concerned that multiple legislators have mentioned potential cuts to Medicaid.  We call on the IACC to advise HHS to support full funding for Medicaid. 

While Medicaid is a state run program, the federal government can still prioritize Medicaid access. Medicaid funding goes to support workers who provide people with disabilities home and community based services (HCBS).  The IACC’s recommendations for autism research on which services and supports are most effective will be empty recommendations if federal funding for those services and supports is limited. ASAN urges the IACC to advise HHS to support robust Medicaid funding. 

Research has shown that Medicaid, and especially HCBS, improve health outcomes and reduce health disparities in autistic people. Improving health outcomes and reducing disparities are both core goals of the research IACC directs. IACC itself has highlighted research on the impact of LTSS (likely, Medicaid-funded LTSS) on autistic people in the past. An expanded coverage gap could have devastating consequences for individuals who need HCBS and would slow the pace of innovation in autism research. We call upon the IACC to communicate the importance of Medicaid funding for HCBS to HHS. 

COVID-19 Public Health Emergency (PHE) Unwinding

The Biden Administration announced on January 30, 2023 that it would end the public health emergency declaration on May 11, 2023. The emergency declaration which has been in place for over 3 years, gave the federal government flexibility to waive or modify certain requirements in a range of areas, including in the Medicare, Medicaid, and CHIP programs, and in private health insurance, as well as to allow for the authorization of medical countermeasures and to provide liability immunity to providers who administer services, among other things. 

Congress, in turn, passed several pieces of legislation—including the Families First Coronavirus Response Act (FFCRA), the Coronavirus Aid, Relief, and Economic Security (CARES) Act , the American Rescue Plan Act (ARPA), the Inflation Reduction Act (IRA), and the Consolidated Appropriations Act, 2023 (CAA)—that provided additional flexibilities tied to the public health emergency and/or the national emergency declarations emergency declarations. These flexibilities are set to expire when the emergency declarations are over. The IACC can support people with disabilities by sharing information on the end of the PHE. 

Some of these changes include higher costs for COVID tests, the end of government funding for COVID vaccines, tests, or treatments (if Congress does not make more funding available, and the end to continuous enrollment for Medicaid enrollees on March 31, 2023 – this means that some states can begin disenrolling people from Medicaid as early as April 1, 2023. We recommend that the IACC communicate these changes both to the broader public and to autistic people and our families. The  IACC could use its website, which acts as a central repository and directory for both the IACC’s work and autism research, to share one-pagers and technical assistance on the end of the PHE to the public, as it does on other subjects related to autism. We additionally encourage the IACC to prioritize the impacts of the PHE unwinding on autistic individuals in future study and closely monitor the impacts the unwinding has on access to services and supports for members of our community.

We again thank the IACC for inviting interested stakeholders to comment and help the IACC direct the future of autism research. For more information on ASAN and the autistic community’s research priorities, please contact Larkin Taylor-Parker, our Legal Director, at