National HCBS Call to Action; Federal Update on HCBS Settings Rule


July 17, 2020 | by Amber Smock

National Home and Community Based Services Call to Action; Federal Update on HCBS Settings Rule

Access Living friends and allies,

We have an action alert and a key policy update for you today…read on.

First up, please send letters to your U.S. Senators today to let them know how important it is to fund Home and Community Based Services (HCBS)!

You can send a letter to your Senators at this link. If you have a personal story on why HCBS is important to you or a loved one, please take a few minutes to write your story. Our U.S. Senators need to hear real life examples on why HCBS funding is crucial to the independence of people with disabilities.

In late May, the U.S. House of Representatives passed the Heroes Act (H.R. 6400). This bill included additional funding for HCBS to ensure consumer and personal assistant safety and well-being during the COVID pandemic. However, it is expected that the Senate will not base its next stimulus bill on the Heroes Act. This is why your voice is important; the Senate needs to see why it is critical to include HCBS funding in their bill.

The U.S. Senate is expected to negotiate a new Covid-19 stimulus bill as soon as they return to session on July 20th. This means the time to act is now. We need to tell our Senators about why quality HCBS are essential to people with disabilities to remain in their own homes. If people with disabilities do not receive the HCBS they need, they could be at risk of ending up in a nursing home or another congregate care setting. Congregate settings have proven to be very unsafe places to live, especially during the Covid-19 pandemic, with over 50% of Covid-19 deaths in Illinois taking place in congregate settings. At least 40% of Covid-19 deaths nationwide are linked to nursing homes, which is just one kind of congregate setting.

More Ways to Take Action

The Center for Public Representation (CPR) has a great page with multiple options to contact the Senate. Check it out at this link. The options include emailing, calling with a call script, and social media tools/tips. The hashtag is #WhatWeNeed. The Association of University Centers on Disability (AUCD) also has a great page on how to share your story with Congress, with a focus on this week’s fight for HCBS. It includes a template for a story. View the page at this link.

We cannot assume that the Senate will include funding for HCBS in its stimulus bill. Your Senators need to hear from you TODAY about including essential HCBS funding!

Second Key Update:

Yesterday, the U.S. Department of Health and Human Services (HHS) delayed the implementation of the Home and Community Based Settings Rule by one year, to March of 2023. Disability advocates see this as a setback. The Rule governs which Medicaid-funding disability settings are community integrated, and which ones have institutional qualities. The Rule itself came about because of the initial advocacy of self-advocates with intellectual/developmental disabilities who wanted institutions to stop masquerading as community settings. Delaying the Rule’s implementation is particularly horrifying given the Covid-19 pandemic’s exposure of high rates of infections in institutions. This development follows a 3 year extension announced early in the Trump Administration.

The HCBS Advocacy Coalition, a group of more than 20 national disability and aging organizations, issued this statement opposing the delay, particularly in light of the increased importance of strengthening HCBS due to the risk of Covid-19 in institutional and congregate settings. Access Living is a member of the National Council on Independent Living (NCIL), which signed on to the statement. Here in Illinois, our State is not yet in full compliance with the Rule, and we support efforts to implement the Rule as fast as reasonably possible, regardless of the federal delay.

Please share this alert with concerned disability advocates. Thank you.