April 7, 2020 Advocacy Focus: COVID-19 and Home/Community Based Services


April 8, 2020 | by Amber Smock

4/7 Advocacy Focus: COVID-19 and Home/Community Based Services

Dear Access Living friends and allies,

Today, we want to focus on COVID-19 and HCBS, also known as home and community based services. People with disabilities, families, and workers who provide HCBS have been in great distress during the COVID-19 pandemic because literally millions of us can only survive through in-person supports, such as personal care and homemaker services. Those who are not familiar with the full range of HCBS may not be thinking about:

  • People with disabilities who rely on someone coming to their home to get them out of bed, showered, clothed and fed
  • Those who provide direct support or personal care, but may also be juggling their own families and multiple consumers/clients
  • People with disabilities in group homes who get food by having their direct support professional take them to the grocery store, or who depend on other daily routines outside the home that are now disrupted
  • People with disabilities who have spent a lot of time investing in training one or a few support staff, and who may suddenly find themselves without support they trust, or with whom they can communicate effectively
  • Lack of stability caused by possible lost wages when HCBS workers are sick or cannot otherwise perform their jobs

Unfortunately, the COVID-19 stimulus bills passed by Congress so far do not address stimulus funds or emergency situations for people with disabilities who require HCBS. In Illinois, this is a major problem for the over 100,000 seniors who use homemaker services funded by the Illinois Department of Aging’s Community Care Program. It is a major problem for the over 25,000 people with disabilities who participate in the DHS-DRS Home Services Program. It is a problem for the over 8,000 people with intellectual/developmental disabilities who rely on the DHS-DDD Home Based Services and Supports Program. It is a problem for the over 11,000 people who live in Illinois Community Integrated Living Arrangements (CILAs, or group homes which may get HCBS funds). There are also more than 29,000 persons with disabilities who rely on Permanent Supportive Housing. (These numbers are rough estimates, based on data from state agencies and provider associations.)

Across the U.S., anxiety about access to HCBS in this pandemic is rising.

We need your help to make sure Congress understands this problem. Over the coming days, you will see calls to action to ask Congress to include funding for HCBS in the next COVID-19 stimulus package.

Here are a few tips to get and stay engaged:

  • #WeAreEssential is the hashtag for an online social media campaign by disability advocates nationwide. If you are active on Twitter, please use this hashtag to reach out to Congress and tell them why HCBS matters to you.
  • This is the link from Access Living to send an email to your members of Congress about funding for HCBS.
  • Check out this link from the Center for Public Representation, which explains what the COVID-19 federal bills do that have been passed so far, and what else we need to help keep working on.

Please keep an eye out for continued advocacy on HCBS. This is one of the biggest disability priorities nationwide.