March 29, 2022
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The Problem
Self-Determination is a model of care that empowers a person to be involved in their own life decisions. It is also known as self-direction. This is quite different from nursing homes or group homes. People in those care settings often lose most of their choice over their own lives. Most people who use self-determination are able to live in their homes and choose the people who provide care. They have more freedom and are happier than people in group homes or other congregate care settings.
But self-determination isn’t accessible to all who need it.
Join Michael and Holly as they talk with Judy Mark, President of Disability Voices United (DVU). They cover the basics of self-determination. Judy also discusses what led her to co-found DVU. Finally, they discuss the progress that has been made in California.
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: Learn About Home- and Community-Based Services (HCBS)
HCBS allows people to receive services in their own home or community rather than institutions or other isolated settings. In 2014, 53% of all Medicaid long term care spending was on home & community based services. But, as of March 2021, more than 850,000 people nationwide are on waiting lists to enroll in HCBS programs.
Step 2: Advocate for Self-Determination in Your State
HCBS Medicaid waivers are what enable self-determination programs to be available in a state. Some states offer many waivers, and some have only a few. This interactive map outlines each state and what programs are offered there.
Once you know what is offered where you live, we encourage you to contact your representatives in Congress. Ask them to support legislation that expands HCBS funding. And especially encourage them to support self-determination programs in your state.
Step 3: Support Disability Voices United (DVU)
Disability Voices United was co-founded by Judy Mark in California. They are working to ensure that everyone who needs self-determination can access it. DVU also works to hold regional centers and schools accountable for providing choice.
Boom. You’ve made a difference.
Judy’s Story
Judy Mark is the co-founder and President of Disability Voices United. She has trained thousands of individuals and families about Self-Determination. Judy also has testified before California’s legislature. She was vital in getting the Self-Determination Law in California passed.
In addition, Judy serves as a faculty member at UCLA. There, she teaches undergraduate courses on autism in the Disability Studies Program. She led the Autism Media Lab, which produced seven documentaries on the inclusion of people with non-speaking autism. Prior to DVU, she spent 30 years leading communication and development efforts for national policy organizations.
Get More Information on Self-Determination
History of Self-Determination
- Applied Self-Direction – Get a download on what self-direction is from an expert group of people with lived experience.
- Medicaid.gov – A full explanation of what self-directed services are.
- Applied Self-Direction – This U.S. map shows what self-direction programs are offered in each state.
- HHAx – A guide to self-direction, and what is fueling it’s growth.
Self-Determination in the News
- Home Health Care News – Use of self-direction jumped 20% in 2020.
- The National Law Review – This article discusses the government’s effort to protect caregiver’s wages.
The Caregiver Shortage Crisis
- UDS Foundation – Solving the in-home caregiver shortage.
- Global Coalition on Aging – This link has various reports, initiatives, and more about the home care industry.