In September 2020, The Centers for Medicare & Medicaid Services (CMS) distributed a request for public feedback concerning quality measures for home and community-based services (HCBS).
In the summary of the request, CMS detailed “This request for information (RFI) seeks public input on a draft set of recommended quality measures for Medicaid-funded home and community-based services (HCBS). This RFI seeks feedback on the potential benefits of and challenges that could result from a nationally available set of recommended quality measures for voluntary use by states, managed care organizations, and other entities engaged in the administration and/or delivery of HCBS. CMS is also requesting stakeholder comment on the purpose and organization of the recommended measure set, the criteria used to select measures, and a preliminary draft set of measures for assessing the quality and outcomes of Medicaid-funded HCBS.”
In response to this request Mary Kay Rizzolo, President and CEO of CQL | The Council on Quality and Leadership, submitted the following letter to CMS. It describes CQL’s recommendations for quality measures that will impact people with disabilities who receive home and community-based services.
Dear Centers for Medicare & Medicaid Services,
We would like to commend the Centers for Medicare & Medicaid Services (CMS) on their efforts to improve quality outcomes for recipients of Home and Community-Based Services (HCBS).
For the past 50 years, CQL has been a leader in helping to shape human services policy and practice across the national, state, and local levels. CQL emerged from national efforts to improve conditions in public institutions in the late 1960s. CQL established the first and subsequent sets of standards and performance indicators for children and adults that were later adapted for use as Federal Standards by HCFA (now CMS). CQL’s standards were incorporated in the historic Wyatt v. Stickney decision and the federal courts later incorporated CQL’s standards into legal settlements in Texas, North Dakota, California, Alaska, and West Virginia. CQL has collaborated with state systems for over five decades to design and deliver statewide quality management models that are person-centered, integrated, and evidence based. CQL models have been shown to empower states to build capacity and utilize data to hold systems accountable while targeting limited resources.
CQL is primarily a human services provider accreditation body which emphasizes self-direction and choice across service populations while using reliable and standardized tools to collect information for decision-making and quality monitoring and improvement. Currently, CQL accredits roughly 400 service organizations ranging in size from very small agencies to multi-state, very large agencies. Our commitment across agencies – regardless of size – is that people receiving services are respected, are integrated, are provided choice, and have control in their lives and services. This mantra has helped the human services field move past the medical, deficit-based model, to a more progressive, person-centered approach.
Although CQL accredits human services agencies across populations – including individuals with intellectual and developmental disabilities (IDD), mental health, and aging – our focus has long been specialized in the IDD population. Regardless of population, our work in accreditation goes beyond simply reviewing organization’s policies and procedures for awarding accreditation; our accreditation approach is a multi-year, in-depth partnership with organizations to measure that not only are best practice policies in place, but that practice indicates policies are being followed and outcomes for individuals are being monitored. To accomplish this, CQL utilizes two primary tools, described below:
Personal Outcome Measures®
Since 1997, this ground-breaking instrument, method and values-based quality of life system has been widely recognized as CQL’s signature contribution and innovation. The Personal Outcome Measures® has been a hallmark of CQL’s work for the last 30 years and has been a powerful data set for the valid and reliable measurement of individual quality of life. Instead of looking at the quality of how the services are being delivered, the Personal Outcome Measures® approach looks at whether the services and supports are having the desired results or outcomes that matter to the person. The Personal Outcome Measures® manual is available for free on our website. In 2019, 6,300+ attendees participated in CQL’s Personal Outcome Measures® training and professional development offerings. Participants spanned all 50 states along with involvement outside of the United States, including human service providers in Canada, Ireland, New Zealand, Spain, India, and Australia.
The Basic Assurances® is an organizational/provider assessment tool that looks at the provision of safeguards from the person’s perspective, and are essential, fundamental, and non-negotiable requirements for all service and support providers. Published in 2005, CQL’s Basic Assurances® tool contains ten (10) factors and 46 indicators, and are a balance between concerns for individual Health, Safety and Security, and the necessity of social constructs such as Respect, Natural Supports, and Social Networks to ensure sustainable outcomes for people. Each indicator is evaluated on two dimensions – System and Practice – and both must be present for the overall indicator to be considered present.
These tools have a proven track record of providing rich data, and as such, should be incorporated into the extended measure sets. For example, the Personal Outcome Measures® incorporates many domains, such as person-centered planning, choice and control, freedom from abuse and neglect, privacy, rights, and others.
Quality Measures Should be Outcome-Based
We strongly support the RFI’s goals to promote outcome measures as opposed to process measures. Outcome measures are one of the only ways to truly examine quality. The strength of HCBS is its focus on social determinants of health related-outcomes – wrap around services greatly increase HCBS recipients’ quality of life. For example, our peer-reviewed data analyses of Personal Outcome Measures® and Basic Assurances® data from over 100 service agencies who support approximately 11,000 people with IDD have shown that while traditional measures of health are important, numerous other factors (e.g., community integration, respect, meaningful days, staff training) play an important role in quality services and supports, and quality of life (Friedman, 2018, 2019a, 2020a, 2020b, 2020c, 2020d, 2020e, in press; Friedman & Rizzolo, 2020). Here are just a few examples:
- The annual number of emergency department visits was 90% lower when people with IDD participated in the life of the community (Friedman, 2020c);
- The annual number of injuries was 57% lower when organizations implemented an ongoing staff development program (Friedman, 2020b);
- The annual number of ‘challenging’ behavior events people with IDD exhibited was 61% lower when support staff were trained to promote dignity and respect, and to recognize each person as a unique individual (Friedman, 2020d);
- The annual number of abuse and neglect incidents was 68% higher when people with IDD experienced DSP turnover (Friedman, 2019a).
It is critical that the measure set does not focus exclusively on compliance with health and safety. While compliance with regulations and minimal standards is important, it will not necessarily result in quality services nor individual quality of life. Health and safety metrics are foundational yet will not result in HCBS beneficiaries having meaningful lives. Unfortunately, many of the currently proposed metrics are clinical in nature and/or process measures. For all those receiving services, but for people with IDD in particular, it is necessary to place more emphasis on access to community opportunities, meaningful days, dignity and respect, privacy, and choice.
Measures Must Reflect the Nature of HCBS
It is crucial that the proposed measures reflect the nature of home and community-based services for HCBS recipients; this includes mirroring the values put forth by the HCBS Settings Rule, such as person-centered services, choice, and outcomes. In fact, our research has found the more HCBS Settings Rule related outcomes (Melda & Smith, 2014) people with IDD had present in their lives, the fewer injuries, incidents of abuse and neglect, and emergency room visits they experienced (Friedman, 2020a). If implemented with fidelity, the HCBS Settings Rule will improve HCBS recipients’ health, safety, and quality of life. However, measurement is necessary to ensure the LTSS service system is truly person-centered, and outcome oriented. As such, we must ensure the metrics used in the measure set uphold the values set forth by the HCBS Settings Rule – they must be outcome-oriented, person-centered, and truly quality-based.
Rather than selecting measures simply because they are easy to measure, we need a system that starts by defining quality and then determines the necessary measures to get there. The most successful path forward is one that starts with quality at the center of its goals. In doing so, it is critical that HCBS recipients, and the organizations who provide HCBS services, have a voice in selecting the most meaningful quality measures, and play a role in piloting studies to determine if the measures truly capture quality services and improved quality of life. Only an understanding of what quality services look like to the people receiving these supports will lead to an effective and person-centered support system. Furthermore, the RFI and measure set information must be in accessible and easy to understand language or the feedback received will not be truly representative.
For True Quality, Measures Cannot Only Measure State Level Performance
It is also necessary to have measures that collect quality data at different levels – state, provider, and individual. While state level data can be helpful for advocacy efforts and to determine where systems may need to provide additional training or technical assistance, it is not going to determine quality at an individual or provider/MCO level. The quality of support providers can significantly impact people with disabilities’ health, quality of life, and community integration, including those with more complex support needs. For example, research has found that people with dual diagnosis (IDD and psychiatric disabilities) are 36 times more likely to participate in the life of the community when an organizational provides supports to do so (Friedman, 2019b). As a result of the impact providers and their staff can have on the provision of services and people with IDD’s quality of life, there must be a robust process for determining that providers are qualified via measurement metrics. Again, data must be available at the individual HCBS service recipient level, the provider level, and regional/network/state level to be useful.
In addition, we would also recommend CMS consider accreditation as a metric for the measure set. This is particularly important as the currently recommended metrics only provide a glimpse at a specific point in time of where the state stands. Future sustainability of HCBS requires understanding what consumers want, what payers (and their health plans) will pay for, and what ‘value’ is. One such way to help set baseline standards is accreditation. Accreditation ensures accountabilities for fundamental and nonnegotiable requirements for all service and support providers. In fact, in recognition of the value of accreditation for quality, the Tennessee Department of Intellectual & Developmental Disabilities, and TennCare are designating CQL accredited organizations as preferred providers and will be providing additional incentives in the future (See: Tennessee Division of TennCare & Tennessee Department of Intellectual and Developmental Disabilities, 2020).
Buy-In: Measures Selection, Access, and Burden
It is important when selecting and implementing measure sets that progress be incremental. Quality assurance and improvement models require cultural change and only succeed when people receiving supports and service providers feel listened to, involved, and demonstrate buy-in. Only through a true participatory design will this buy-in be achieved, and a meaningful number of organizations will volunteer to participate. The proposed set of measures, if released as presented, will undoubtedly be viewed as an unrealistic unfunded mandate during a time of unprecedented strain on the service system due to the pandemic.
We understand that the data collection burden must not be such that no organizations or states will participate in the voluntary effort. For this reason, we believe it would be more beneficial to the service system to collect a handful of meaningful evidence-based measures as opposed to a lengthy list of measures not related to true quality of life.
Once the limited data set is agreed upon, it must be readily accessible to providers and MCOs. While the tools may be either proprietary or public, it is essential that the resulting data set MUST be public. HCBS recipients must be able to access the data to choose providers, providers must be able to access the data to compare their progress to peers or regions, and MCOs must be able to access the data to select providers in their network or identify specific organizations for preferred status or other incentives.
We wish you much success as you actively work to promote quality services and quality of life for people receiving HCBS. Please do not hesitate to reach out if you have any questions, would like further clarification, or if we can be of assistance in any way.
Mary Kay Rizzolo, PhD, FAAIDD
President & CEO
CQL | The Council on Quality and Leadership
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Since 1969, CQL | The Council on Quality and Leadership has been a leader in working with human service organizations and systems to continuously define, measure, and improve quality of life and quality of services for youth, adults, and older adults with intellectual and developmental disabilities, and psychiatric disabilities. CQL offers accreditation, training, certification, research, and consultation services to agencies that share our vision of dignity, opportunity, and community for all people.