Posted on January 24, 2023

By Carli Friedman, CQL Director of Research

CQL | The Council on Quality and Leadership’s Personal Outcome Measures® (POM) are used to identify people’s quality of life outcomes, plan supports, and gather information and data about individual outcomes. We conduct Personal Outcome Measures® interviews to demonstrate the linkage between personally defined quality of life and excellence in person-centered services and the importance of data in planning and making change. Personal Outcome Measures® interviews can be used to guide person-centered planning and to guide individualized supports. When aggregated, Personal Outcome Measures® interviews can also help guide organizations, managed care organizations, states, and the field more broadly.

As a data driven organization, CQL continuously reexamines the data to reflect the real-world changes in quality of life for people who receive human services and supports, as well as ever changing service systems. This Capstone and the Personal Outcome Measures® Benchmarks: 2022 report summarize the 2022 adult Personal Outcome Measures® data from the PORTAL Data System conducted by Certified Interviewers.

Health and Safety are Prevalent but Have Room for Improvement

In 2022, People Are Safe (64.9%) and People Have the Best Possible Health (53.6%) continued to be two of the most frequently present outcomes in people’s lives, in large part because of a presence of individualized organizational supports to facilitate these outcomes. While health and safety are important, focusing exclusively on health and safety will not promote quality of life.

In fact, many factors contribute to people with disabilities’ health and quality of life, called social determinants of health. In 2022, people with disabilities had an average of only 36.6% of Social Determinants of Health Index outcomes present. From our previous research, we know that when people have fewer outcomes present on the Index, they tend to visit the emergency room more often. In addition, while these two outcome areas were present most often in comparison to other outcomes, only slightly more than half of people with disabilities actually had these outcomes present in their lives. This indicates that there is still room for improvement in 2023 when it comes to health and safety.

Rights and Respect Continue to be Critically Important

As part of the annual benchmarks, I do something called outcome correlations. Correlations help show the relationships between outcomes; when outcomes have larger correlations it indicates they are better predictors of total outcomes. In 2022, the outcomes with the highest correlations were People Exercise Rights, People Are Respected, and People Are Treated Fairly. This finding means that people with these outcomes present were the most likely to have a high quality of life; our past research indicates this as well!

Yet, in 2022, only 33.9% of people with disabilities exercised their rights, 37.7% were treated fairly, and 40.7% were respected. Individualized organizational supports can be significantly beneficial to increase the presence of these outcomes and, by extension, improve people with disabilities’ quality of life. In fact, when organizational supports are in place, the odds of people with disabilities exercising their rights increases by a whopping 2,600%!

Person-Centered Practices are Lacking as We Near the Settings Rule Deadline

March of 2023 marks the deadline of the HCBS Settings Rule, which aims to promote community integration and person-centered practices. In the 2022 benchmark data, People Realize Personal Goals (58.4%) and People Choose Personal Goals (45.6%) were two of the more frequently present outcomes. However, fewer people chose their goals in 2022 (45.6%) than 2021 (59.6%).

In addition, People Choose Where And With Whom They Live (25.0%) and People Choose Services (17.9%) – both important aspects of the HCBS Settings Rule and person centered-practices more broadly – were only in place for a fraction of people with disabilities in 2022. People with disabilities infrequently received supports to promote these outcomes as well. Not only do person-centered practices put people with disabilities in control of their own lives, they also improve quality of life.

The Pandemic Continues to Have an Impact, Especially on Relationships and Community

Despite many people ‘going back to normal,’ the COVID-19 pandemic continues to hit the disability community hard. This is also evidenced in the 2022 benchmarks, where a number of areas, especially related to relationships and community integration, were lacking and present significantly less often than they were prior to the pandemic in 2019. For example, only 23.1% of people with disabilities performed different social roles, 26.6% had friends, and 26.9% participated in the life of the community.

Relationships and community integration significantly improve people’s quality of life. Targeted supports would be particularly beneficial to ensure people with disabilities are able to connect with others and participate in the life of the community, especially in creative ways as the pandemic continues. In 2022, people only had one-third of outcomes present on the Social Capital Index, so reviewing our tips for Increasing the Social Capital of People with Disabilities may be a great place to start!

Using the Benchmarks at Your Organization

The benchmark data helps show us how we’re doing as a field – what quality of life areas are lacking for people with disabilities, as well as where we have made significant gains. Benchmark data can also be extremely helpful to compare with your organization’s data to determine where you are excelling as well as where there are opportunities for improvement. When comparing this data against your own it is important to recognize that the data in the 2022 Benchmarks are from Certified Interviewers only. We often find interviewers who are not certified overestimate the presence of outcomes and supports; therefore, if your organization’s data includes data from interviewers who are not certified, your numbers may be inflated and seem better than the benchmark values for this reason.

At CQL, we believe in data informed decisions. The Personal Outcome Measures® Benchmarks: 2022 report should be used to not only inform our knowledge, but also to help change our behavior to improve the quality of life of people with disabilities!