ASAN condemns the Centers for Medicare & Medicaid Services for their continued delay of the HCBS Settings Rule. The Home and Community-Based Services Settings Rule, or HCBS Settings Rule for short, would help people with disabilities exercise our right to live in the community. This rule, which was originally released in 2014 and set to go into effect in 2019, was already delayed by CMS for 3 years, with a new start date in 2022. Now, CMS is using the circumstances surrounding COVID-19 to justify delaying the rule yet another year, until 2023. People with disabilities need our rights protected now more than ever. It is time for CMS to take its obligation to community living more seriously, not less.
People with disabilities have been denied our rights and forced to live in congregate settings for decades. The HCBS Settings Rule is a huge step towards helping us live truly in the community. It clearly defines what settings count as living in the community, and makes sure funding for services in the community only goes to settings that meet this definition. It gives people with disabilities the right to live in our own homes and be in charge of our own lives. Right now, people with disabilities don’t always have a key to our own homes, or a bedroom door that locks. We might not be able to eat when we are hungry, choose who lives with us, or set our own schedules. Too often, we are not treated with dignity and respect. 30 years after the Americans with Disabilities Act, and 21 years after the Olmstead decision, the promise of community integration still has not been fulfilled. The settings rule would help to change all of this–but CMS has decided we need to wait even longer for these rights.
CMS and state Medicaid programs have already had ample time to plan for the HCBS Settings Rule. It is unacceptable to further delay the Rule under any circumstances, let alone during a pandemic. We know firsthand how dangerous congregate settings are for people with disabilities, especially during a crisis like COVID-19. The best way to protect the health and well-being of people with disabilities is to ensure that all of us can live in the community. The HCBS Settings Rule would help make that possible, but only if CMS commits to a timely implementation of the Rule. We will continue to push back against this delay and similar policies until our community finally gets the rights we have been promised.
The Autistic Self Advocacy Network is a 501(c)(3) nonprofit organization run by and for autistic people. ASAN was created to serve as a national grassroots disability rights organization for the autistic community run by and for autistic Americans, advocating for systems change and ensuring that the voices of autistic people are heard in policy debates and the halls of power. Our staff work to educate communities, support self-advocacy in all its forms, and improve public perceptions of autism. ASAN’s members and supporters include autistic adults and youth, cross-disability advocates, and non-autistic family members, professionals, educators, and friends.