August 31, 2021
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Many people don’t know that there are options other than nursing homes or group homes for long-term care. But these options (such as Home and Community-Based Services) need more funding to be available to everyone. As of March 2021, more than 850,000 people nationwide are on waiting lists to enroll in these HCBS programs.
It doesn’t have to be that way. Waiting lists can be greatly reduced or eliminated with increased funding.
Join Michael and Holly as they talk with Judy Heumann, mother of the disability rights movement. We’ll discuss why it’s critical for people to have access to home and community-based services. And how having choice and control is important in the lives of everyone.
What We Can Do About It
It’s easy to get paralyzed by the feeling that we can’t make a difference. But helping out can be a lot simpler than we think.
Step 1: Talk to people you know about the facts behind personal assistance and self-direction
Most people end up in congregate settings because they didn’t know they had a choice. Help people understand their options.
Step 2: Contact your representative about ending the waiting list (2 minutes)
The Better Care Better Jobs Act will amend title 19 of the Social Security Act. The act will increase federal funding for HCBS by 10%. It will also add funding for other improvements, like increasing caregiver pay and protecting married couples so they can more easily qualify for Medicaid.
Use the Easter Seals link to send your representative a prewritten email. This email tells your representative how important it is to get HCBS more funding. Easter Seals has everything ready for you. You just need to hit send.
Step 3: Support Applied Self-Direction (3 minutes)
Supporting Applied Self-Direction will help make HCBS and personal assistance services accessible for more people. Applied Self-Direction is an advocacy organization made of experts on creating an authentically self-directed, person-centered environment.
Boom. You’ve made a difference in less than five minutes.
After contracting polio when she was 18 months old, Judy has since become an activist, best-selling author, and is one of the stars of the Oscar-nominated film Crip Camp. She has been a vital part of passing various legislation over the years, including the 2017 revision of Section 501. This revision means that all federal agencies must provide personal assistance services for their employees with certain disabilities.
Get More Information on Personal Assistance Services and HCBS
Advocacy and Learning Opportunties
- Easter Seals – Use a pre-filled form to email your State Representatives to support passing President Biden’s Home and Community-Based Services proposal.
- Common Cause – Enter your address to be given a list of your Federal and State elected officials to contact them on your own.
- Health Law – Read about one of the Home and Community-Based Services bills currently in Congress.
- KFF (Kaiser Family Foundation) – Get more information about what expanding funding for Home and Community-Based Services would mean for these services.
- US News – Read personal stories about people in favor of expanding Home and Community-Based Services funding.
What Are Personal Assistance Services?
- Medicaid.gov – Learn some of the basics of self-direction.
- Medicaid.gov – Get more information about Home and Community-Based Services.
- Equal Employment Opportunity Commission (EEOC) – Learn about the federal government’s requirement to provide personal assistance services to their employees.
- Phinational – Take a deep dive into the history of personal assistant services.
Studies and Stories About How HCBS Makes a Difference
- Nursing Research – A 2005 study of outcomes for individuals in Home and Community-Based care settings versus institutional-based care.
- National Center for Biotechnology Information – COVID-19 infection rates and outcomes study of community-based and institution-based Connecticut residents.
- Research Gate – Outcomes of a Home and Community-Based neurorehabilitation program.
- Europe PMC – A clinical study demonstrating the positive effect of social support on elderly patients with long-term care needs.
- DSQ – Personal Assistant Services perception and accessibility in the workplace study from 2007.
- World Institute on Disability – A 1992 publication of personal stories from those receiving care from personal assistants.