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By Monica E. Oss

In the intellectual/developmental disabilities (I/DD) field, self-direction has become an increasingly preferred model for consumer-focused health care. Self-direction is the concept that consumers are “entitled to opportunities, respectful support, and the authority to exert control in their lives, to direct their services, and to act on their own behalf” (see Self-Determination and Self-Determination: Principles For Evaluating Your System).

To be more specific, self-direction models provide consumers with the opportunity to manage the services they receive based on their needs and preferences. There are two elements in self-determination – employer authority and budget authority. As an “employer authority” consumers can manage the professionals providing home- and community-based services (HCBS). As a “budget authority” consumers can decide how much is spent on their HCBS (see More Community-Based Care + Consumer Empowerment = Self-Directed Care and Keys To Incorporating ‘Self-Determination’ Into Your Services). The goal of the self-directed care movement is to allow consumers to have as much control over their care as possible and to allow consumers to live independently in integrated community settings (see More Community-Based Care + Consumer Empowerment = Self-Directed Care).

The challenge for managers of provider organizations is to adapt their service delivery operations to meet the goals of self-direction. A recent study (see I/DD Provider Organization Ability To Deliver Self-Directed Services Linked To Four Organizational Competencies) found that provider organizations that have the highest success in delivering self-directed services for consumers with I/DD share the following four characteristics:

  1. The organization’s policies in handbooks, written service plans, and goals were clear about how to support self-direction
  2. Staff received formal training about how to facilitate the self-directed services
  3. Staff received tools and support on how to help consumers with I/DD manage service budgets and spending, and how to help consumers with I/DD be truly in control of their services
  4. Consumers with I/DD were provided tools and support about how to manage service budgets and spending, and how to choose leisure activities
Raymond Wolfe

The common theme I see? Investments in the resources that support consumer engagement are a necessity. For more, I reached out to OPEN MINDS Senior Associate Raymond Wolfe, who noted that the opportunity and responsibility for provider organizations was in adopting and providing innovative service options for consumers. He noted:

I would imagine that the vast majority of I/DD practitioners would tell you that they strongly support the idea of self-direction. Assisting people to create the most meaningful life is a significant element of their values. The influences of fee-for-service (FFS), however, with its structured set of licenses codes and services, has been an insidious force in changing the ways we relate. Without really noticing, our treatment planning may have changed to be more focused on what we offer or what a governmental or insurance entity will approve. FFS is a set of blinders that forces us into siloed thinking, and the person served is often not at the center of that siloed focus.  

To break free of this, staff will need training to find ways to be inclusive, aggressively draw out ideas, and find ways to support the desires and specific unique needs of each person. Staff will need new skills and more information to help with budgeting and assisting people in prioritization. Despite the strong acceptance of the idea of self-direction, the change will be harder than we may think.

Additionally, with the speed of change in technology, the scope and boundaries of self-direction have expanded. New applications allow for homes to be safer, for communication when it previously was impossible, and for accessibility that increases options for work and pleasure. Our responsibility is not just to be open to and work collaboratively with the persons we serve to reach their goals, but to provide them innovative options to fulfill their needs.

Why should specialty provider organizations make these investments? There are many reasons, starting with better quality of life for the consumers they serve (see Self-Determination and People with Intellectual and Developmental Disabilities: What Does The Research Tell Us? and For I/DD, The Question Isn’t Managed Care Or Not-It’s Residential Care Or Not). There is also the potential for a decrease in spending (see The Case for Medicaid Self-Direction: A White Paper on Research, Practice, and Policy Opportunities).

The key, however, is consumer engagement. Payers and provider organizations are looking for new ways to engage and enable consumers as part of the care team, and self-directed consumers that are engaged are also empowered to lead their own recovery—increasing service retention and performance outcomes (see Is Consumer Engagement A Habit At Your Organization? and Less Consumer Education Demands More Consumer Engagement). For provider organizations, successful self-direction will mean finding a way to educate and prepare consumers to participate in the decision-making process.

Looking for more on self-directed services? Check out our market intelligence report on the state authorities to self-direct care: What Is Self-Directed Care & How Does It Affect The Delivery Of HCBS?: An OPEN MINDS Market Intelligence Report. And take a deep dive into these resources from the OPEN MINDS Industry Library:

  1. The Case For Medicaid Self-Direction: A White Paper On Research, Practice & Policy Opportunities
  2. More Community-Based Care + Consumer Empowerment = Self-Directed Care
  3. Self-Determination Interventions Linked To Better Post-Graduation Outcomes For Students With Disabilities
  4. Self-Determination & Community-Based Service Shaping The IDD Landscape In California
  5. What Is Self-Directed Care & How Does It Affect The Delivery Of HCBS?: An OPEN MINDS Market Intelligence Report
  6. Implementing Comprehensive Person-Centered Care Models: Wrapping In Human Services (Coffee Break Case Study)
  7. ‘Person-Centered’ Health Care Records Take Center Stage
  8. CMS Recommendations Emphasize Person-Centered Planning For HCBS Consumers Prone To Wandering
  9. CMS Approves First Three State Plans For New HCBS Person-Centered Settings – Kentucky, Ohio & Tennessee
  10. CMS Plans To Require Person-Centered Hospital & Post-Acute Care Discharge Planning

For even more, join me on June 4 at The 2019 OPEN MINDS Strategy & Innovation Institute for the session “Self-Determination In The I/DD Market: Keys To Incorporating Consumer-Directed Care Into Your Services,” featuring Ray Wolfe, J.D., Senior Associate, OPEN MINDS; Dan Ohler, Vice President, State Government Programs, Optum Behavioral Health; and Mollie Murphy, President, Applied Self-Direction.

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