The concept of “self-determination” (sometimes referred to as self-direction) in the intellectual/developmental disabilities (I/DD) field has been around for a while. However, with the growing focus on consumerism in the health and human service field, incorporating this concept into services for consumers with disabilities is receiving new attention. What exactly is self-determination? The concept is 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).
In practice, this means that consumers (or their representatives) have the right to manage the services they receive based on their needs and preferences. This can happen in two ways. Under the first, employer authority allows consumers to hire, manage, and fire the individuals who provide their home- and community-based services (HCBS). Under the second, budget authority allows consumers to decide how their HCBS funding or budget amount is spent for a given year (For more see More Community-Based Care + Consumer Empowerment = Self-Directed Care).
The challenge for many provider organizations is how to tell if the services they provide really embody the principles of self-determination and, if not, how to incorporate those principles into existing and soon-to-be-developed services. Each state Medicaid agency (SMA) is responsible for monitoring the performance measures and individual outcome measures for self-directed services—provider organizations need to check each funder for what those quality requirements are, as they vary (see Medicaid Self-Directed Services).
Even if your state doesn’t allow the use of a traditional self-direction model, you can incorporate some of the principles of self-direction—such as person-centered planning, fairly assessing needs, and ensuring transparency in service delivery—into your service model. If your programs and services don’t score highly in this area, the question is how to incorporate those principles. That was the focus of the session, Self-Determination In The I/DD Market: Incorporating Consumer Self-Direction Into Your Program Model at The 2018 OPEN MINDS Managed Best Practices Institute. The session featured Christy Shaver, Vice President of Operations at Monarch NC; Lori Clarke, Chief Program Officer at SDSU Social Policy Institute; and Patricia Kreil, Lifesharing Unit Director and Rayann Rohrer, Regional Director at Resources for Human Development (RHD).
Their advice—train staff to build different relationships with consumers and families, be creative about the models, and consider the use of technology to encourage independent living.
Train staff to build different relationships with consumers and families—A self-determination model demands new staff competencies, a new mindset from your team, and a culture shift from your organization. One of the hardest aspects of a self-direction model is training staff to not “over-serve” people. The focus of the training is to ensure that the principles of self-determination are understood and integrated throughout your programs. Staff should work from the assumption that an individual is competent and understand that there is inherently a certain level of risk associated with this model. Ms. Kriel and Ms. Rohrer also noted that staff need to be given materials to help family members or guardians transition into their new role. Often parents have the hardest time letting go and need to be coached through this process.
Be creative about the models used—Self-determination is about giving consumers control over their services. That means that your model can’t rely on only prescribed models and established plans. Each consumers’ goals and priorities will be different, and their plans need to reflect those variations. It’s important that provider organization managers operating self-direction programs don’t make broad assumptions, like “everyone wants to live 100% independently in their own apartment or house.” While for some individuals, this may be the goal, others might want to live in a life-sharing arrangement (living in a private family home), a group home, or with their family. Both RHD and Monarch NC offer a full continuum of housing options or linkages to housing options that allow the member to choose the option that works best for them. Ms. Shaver also suggested using Design Thinking to come up with desirable, feasible, and viable solutions (for more see Design Thinking, Explained).
Consider the use of technology—Ms. Clarke talked about how important it is to use technology for both consumer-facing programs, and “back office” administrative functions, when running a program with self-direction. For consumers living in the community, there are a host of digital support tools that can enable greater freedom and reduce in-person supports. Remote monitoring, text-based communications, mobile medication reminders; these tools enable direct service professionals to increase the value of the care they provide with fewer resources (see Building A Technology Infrastructure For Value-Based Care: Tech To Optimize The Value Of Consumer Care). Ms. Shaver also discussed how Monarch NC is exploring the use of smart home technology to reduce the number of supports an individual needs (for more on this see Tech-Enabled Care For The Complex Consumer Population – An Interview With Peggy Terhune, Ph.D. Of Monarch).
Many executives of provider organizations often ask about why their organization should invest more in the principles of self-determination. First, self-determination can serve as another important building block in the “whole person” approach to health care. Consumers who have more control over their support services are more likely to live independently, find employment, and have a higher quality of life (see Self-Determination and People with Intellectual and Developmental Disabilities: What Does The Research Tell Us?). Consumers who don’t have any decisionmaking authority in determining their housing and services will be less engaged in their care and more likely to report dissatisfaction with support services. Second, state Medicaid programs want a more community-based, self-directed approach to care for consumers with disabilities. As payers look for methods for improving quality of life and increasing consumer engagement, self-determination is on the docket as an important tool for this approach (see For I/DD, The Question Isn’t Managed Care Or Not-It’s Residential Care Or Not).
For more on self-direction, be sure to check out:
- The Case For Medicaid Self-Direction: A White Paper On Research, Practice & Policy Opportunities
- More Community-Based Care + Consumer Empowerment = Self-Directed Care
- Self-Determination Interventions Linked To Better Post-Graduation Outcomes For Students With Disabilities
- Self-Determination & Community-Based Service Shaping The IDD Landscape In California
- What Is Self-Directed Care & How Does It Affect The Delivery Of HCBS?: An OPEN MINDS Market Intelligence Report
- Implementing Comprehensive Person-Centered Care Models: Wrapping In Human Services (Coffee Break Case Study)
- ‘Person-Centered’ Health Care Records Take Center Stage
- CMS Recommendations Emphasize Person-Centered Planning For HCBS Consumers Prone To Wandering
- CMS Approves First Three State Plans For New HCBS Person-Centered Settings – Kentucky, Ohio & Tennessee
- CMS Plans To Require Person-Centered Hospital & Post-Acute Care Discharge Planning
For even more, join us at The 2018 Technology & Innovation Institute in Philadelphia on October 23, 2018 for the session “The Digital Substitution Effect: A Guide To Supporting Consumers In The Community Through Technology” featuring Gina Armitage, LPC, Director of Quality and Compliance at Comprehensive Mental Health Services, Inc.