Self-direction (also referred to as consumer direction or participant direction) has become an increasingly popular option for individuals wanting more control over their healthcare. Since 2016, self-direction has grown at about twice the rate of traditional HCBS.

A boost in federal funding, combined with a shortage of traditional caregivers, may result in more and more individuals opting for self-direction in the years to come. According to a recent survey conducted by HHAeXchange, 35% of providers are planning to grow their agency by expanding to self-direction. The model offers numerous benefits for both participants and payers – from more choice, flexibility, and control over when, where, and how services are provided, to reduced hospitalizations and overall costs of care.

If you’re a provider just getting started with self-direction, or you’re simply curious about how it works, a well of assets exist to support your learning and access to experts and advocates. Our team of self-direction experts has compiled a list of some of the most helpful resources on the web, including ready-to-use reports, historical background, and ways to connect with communicators in the self-direction movement.

Federal Guidelines and Reports

Looking for guidelines and historical background on self-directed services? Through the Medicaid.gov website, CMS offers a history of the movement as well as an overview of the waiver options.

The Office of the Assistant Secretary for Planning and Evaluation (ASPE) has a number of articles about the contributions of self-direction, from publications on the feasibility of expanding services to people with serious mental illness, to presentations on increasing opportunities for choice and control.

Research and Resources

Applied Self-Direction (ASD) is a mission-driven organization with one goal: to advance self-direction. Their online resource library offers a host of white papers and case studies to help get you started, along with a complete inventory of self-direction programs across the United States.

Sign up for ASD’s mailing list to stay up-to-date on webinars, join their bi-annual conference, and receive their weekly email updates: https://www.appliedselfdirection.com/contact.

Add their twitter to your feed at: https://twitter.com/appliedsd.

Historical Publications

What do the game Candy Land and self-direction have in common? They can both trace their roots back to the polio epidemic.

For a look into the history of self-direction, check out the sources linked within the brief timeline below:

The Voice of Advocates

Hear directly from current writers, bloggers, and podcasters on the impact and importance of self-direction.

A recent article by Jeneva Stone titled Living the Life you Want : Self-Directed Services 101 offers a first-person account of young adults transitioning to adulthood with the support of self-directed services.

Rob Stone is an artist, poet, and advocate. Check out the online gallery of his framed prints and a video created by the Self-Directed Advocacy Network of Maryland featuring Rob and other advocates.

Founded by Keith Jones, an African American community activist and entrepreneur with cerebral palsy, SoulTouchin’ Experiences brings perspective to the issues of access inclusion and empowerment, which affect people with disabilities as well as other marginalized communities. He is featured on episode 6 of the Inclusion at Work Podcast by No Limits Media.

The Accessible Stall is a disability podcast hosted by Kyle Khachadurian and Emily Ladau that offers real and honest discussion on issues within the disability community. Because Kyle and Emily each have different disabilities and mobility levels, their podcast gives listeners a fresh insight into how differences in disability can color experiences and perspectives.

Emerging Initiatives

The goal of National Center on Advancing Person-Centered Practices and Systems (NCAPPS) is to promote systems change that makes person-centered principles not just an aspiration, but a reality for people who require services and supports across their lifespan. NCAPPS will assist states, tribes, and territories to transform their service and support systems to implement U.S. Department of Health and Human Services (HHS) policy on person-centered thinking, planning, and practices. It will support a range of person-centered thinking, planning, and practices, regardless of funding source.

Check out their resources and learning collaboratives. Additionally, in this new series of short videos, NCAPPS community members share their thoughts on how their racial and cultural identities shape their expectations and views of support systems.

Listen to the NCAPPS Spotify playlist for the songs that inspire the movement.

Technology

If your organization wants to build or expand a self-directed program, HHAeXchange provides robust software for HCBS providers, helping people who are aging or have disabilities thrive in their homes and communities. Our software supports over 80 programs of all sizes and models, across 40 states and counting. Learn more.