The dignity of risk: Empowering support for people with disabilities

Risk is inherently part of the human experience. We learn, grow, and build resilience by taking risks. But how much risk is acceptable? When we seek a level of tolerable risk, we balance the potential for harm with the potential for benefit in our lives.

For people with disabilities, tolerable risk is one consideration when determining the support they need. Too often, well-meaning caregivers and clinical professionals focus on eliminating risk. While this likely comes from wanting to protect people with disabilities from harm, eliminating risk completely can be detrimental to their quality of life and sense of self.

At its essence, the “dignity of risk” framework promotes self-determination and the right to take reasonable risks as essential for a person’s autonomy and self-esteem. These reasonable risks can vary but are focused on specific aspects of one’s health and wellbeing, such as the ability to perform daily tasks or engage in certain social activities. Not everyone with a disability automatically needs to live in an institutional setting or a structured living environment, which may not align with personal goals or preferences. With the right supports and some tolerance for risk, there are opportunities to live at home or in a community-based setting.

As states review, rethink, and reimagine their long-term services and supports (LTSS) programs, the dignity of risk must be a significant consideration to ensure the needs and preferences of people with disabilities seeking services are placed front and center. 

Accounting for dignity of risk in assessments

States can address barriers by implementing assessment frameworks that recognize the dignity of risk and evaluate how each need affects a person’s ability to transition to community-based settings, even if some risk is involved.

States should incorporate assessment tools with a standard method for identifying needs by level of risk and determine how effectively that risk can be mitigated. This consistent, person-centered approach allows for more targeted and realistic planning for transitions to community-based settings with the appropriate risk-mitigation strategies in place.

Opportunities for states

As states seek to strengthen community integration within their LTSS programs, they establish best practices for incorporating the dignity of risk into assessment and planning processes.

One state faced the challenge of meeting goals related to the rights of people with disabilities to receive state-funded supports and services in the community rather than institutions. As the assessment provider, we identified areas where expectations created unnecessary barriers and proposed adding the dignity of risk framework to our assessments. Collaborating with the state and the court monitor responsible for making recommendations for how the state could meet these goals, we adopted this framework and improved the overall process.

Another state implemented a multi-year reform of its LTSS programs for older adults to serve more individuals aged 60 and older in the community. After conducting level of care and needs assessments, we provided options counseling services to help them understand their choices. Through person-centered assessments and options counseling, we discovered what matters most to each person and what services and supports align best with their goals, including a well-informed assumption of a reasonable level of risk.

Shift to implementation

A person-centered approach to assessments helps identify an acceptable level of risk that empowers individuals with disabilities to lead meaningful and self-directed lives.

Doing so allows for more individualized, realistic plans that put people in the best position to succeed with greater independence, dignity, and quality of life.

States that strive for greater community integration should recognize the dignity of risk and make it a core component of their LTSS programs.