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IDD MLTSS Workgroup Response To CMS Request For Information

The Centers for Medicare & Medicaid Services (CMS) released a request for public feedback in September 2020, in an effort to improve 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.”

The IDD MLTSS Workgroup, sponsored by CQL | The Council on Quality and Leadership, The Institute on Public Policy For People with Disabilities, and Mosaic – and comprising of dozens of thought leaders in the human services field – drafted the following letter to CMS. Carli Friedman, Co-chair of the IDD MLTSS Workgroup and Director of Research for CQL, submitted this letter which details the workgroup’s recommendations for Medicaid-funded HCBS measure set.

Dear Centers for Medicare & Medicaid Services,

We would like to commend the Centers for Medicare & Medicaid Services (CMS) on their efforts to modernize and improve Home and Community-Based Services (HCBS), particularly by emphasizing quality outcomes.

We represent a national Workgroup on Managed Long-Term Services and Supports (MLTSS) for people with intellectual and developmental disabilities (IDD), comprised of more than 40 thought-leaders representing people with disabilities, family members of people with disabilities, human service providers, industry associations, national managed care organizations (MCOs), researchers, national disability organizations, and other key leaders. Our workgroup is designed to develop a common understanding of value-based quality measures for people with IDD to ensure that as the industry moves to managed care the quality metrics utilized are meaningful for people with IDD.

We support the Request for Information’s (RFI’s) goals to promote outcome measures and agree that evidenced-based standards and guidelines about HCBS are more critical than ever. However, we believe there are opportunities to strengthen the emphasis on community integration and person-centeredness within the recommended measures and larger process.

Compliance is the Floor, Not the Ceiling

While compliance and attention to regulations are important, they are not, in and of themselves, indicators of quality. Setting a clear regulatory floor is crucial, but quality measures should aim higher, with a focus on valued outcomes. While health and safety are foundational building blocks on which everything else is built, they alone do not represent quality – it is important to ensure HCBS recipients have meaningful lives.

For quality services and supports, attention should be paid towards social measures, such as social determinants of health which contribute to health and safety (e.g., social support, access to opportunities, choice, technology, etc.). Findings from our peer-reviewed data analyses of over 100 service agencies who support approximately 11,000 people with IDD have revealed that while traditional measures of health are important, many other factors play a role in quality services and supports, and quality of life (Friedman, 2018, 2019a, 2020a, 2020b, 2020c, 2020d, 2020e, in press; Friedman & Rizzolo, 2020). As indicated by our findings, community integration, respect, meaningful days, staff training, and many more social determinants have an impact on hospitalizations, injuries, medication errors, and behavioral issues – the health and quality of life of people with IDD.

We do not believe the current recommended measures reflect the nature of the HCBS services provided to people with disabilities or a person-centered approach; they also do not uphold the standards set forth by the HCBS Final Settings Rule. Many of the measures are medical or clinical in nature and process-based, and there is less emphasis on community settings, community integration, and person-centered services. Community integration is a critical part of quality. Community integration means people with IDD not only develop social ties and relationships that result in natural supports, but also are integral community members themselves.

“It is important that quality metrics are not utilized simply because they are easy to measure.”

It is important that quality metrics are not utilized simply because they are easy to measure. In addition, whenever possible, it is important to avoid utilizing process-based assessments and metrics. We believe that quality assurance metrics should incorporate metrics that capture the extent to which person-centered practices are infused throughout provider, case management agencies, and state systems. Person-centered supports not only recognize each person’s unique individuality, systems and organizations promote dignity and respect when they incorporate elements of the person’s life in the provision of services and supports.

We need a system that starts by defining quality and then determines the measures to get there. The most successful path forward is one that starts with quality at the center of its goals. Doing so demands moving beyond clinical and/or process measures to examining outcomes. As such, our workgroup and others have called for person-centered quality outcomes for managed LTSS for people with IDD (American Network of Community Options and Resources, 2019; Friedman, 2019b; Tallant & Dembner, 2019). We believe the move towards quality needs to be evidence-based and data driven.

Meaningfully Include People with Disabilities and Their Families

The ultimate goal of HCBS outcome measures should be to ensure that HCBS recipients are living quality lives. As such, to ensure outcome measures are adequately assessing the quality of HCBS, people with disabilities must be included in the measure set process in a meaningful way. As self-advocates say, “Nothing About Us, Without Us!” As different HCBS populations have unique needs and services, all HCBS populations should be represented. HCBS recipients and their families should be members of the committee who directs the recommended measure set and their participation must not be tokenized. In addition, CMS should also be conducting focus groups and additional research with HCBS recipients to determine what is really important to HCBS recipients and what quality HCBS means to them, and utilizing this research to determine which measures are recommended for the measure set. This work needs to be done before measures can be selected, narrowed down, or assigned priorities as base and extended sets. Any future RFI or information about the measure set also needs to have a companion accessible plain language version to ensure that people with disabilities and their families can review the RFI and provide feedback.

Implementation Should be Incremental

In addition, it is important when selecting and implementing measure sets that progress be incremental. Quality frameworks require a cultural change to person-centered services, not only in systems but in practice, something that although necessary, can hardly be accomplished overnight. We would caution that this process should start slow and should be seen as a continuum which has an end goal of quality. The goal should be to help states and providers make progress, not overwhelm them. There are simply too many measures currently recommended in the measure set. We would recommend that only a few measures be selected to begin with. These measures should be ones that HCBS recipients recommend in the focus groups described above. From there, the measures should be piloted, and their success examined thereafter.

“The measures should be efficient to implement and the data should be easy to access – the data access cannot be proprietary.”

When selecting the paired down measures, in addition to guidance from HCBS recipients, it is important that tools and data be easy to access for providers and MCOs. It matters less if the measures are proprietary or public; what is more important is that the best tools are used to collect the richest outcome data about what matters to HCBS recipients. In addition, the measures should be efficient to implement and the data should be easy to access – the data access cannot be proprietary.

Measures Should Exist for All Population Levels

It is also necessary to have measures that collect at different levels – state, provider, and individual. Yet, the recommended measures in the set are oriented towards state-level data. For example, while the National Core Indicators (NCI) and National Core Indicators-Aging and Disabilities (NCI-AD) are widely used, there are data access/sharing issues (e.g., MCOs do not have access to the data), and they are state level measures. While state level data can be helpful for advocacy and to determine where the system needs to go, it is not going to determine quality at an individual or provider/MCO level. Instead, data needs to be collected at all levels (state, provider/MCO, individual). Doing so will not only increase transparency but will also allow us to determine the quality of providers and help them work towards quality improvement. Doing so would also allow people with disabilities and their families to compare providers/MCOs to determine which would is the best service provider for them.

Our Work Related to HCBS Outcome Measurement

Our workgroup has been working for years to develop a common understanding of value-based quality measures for people with IDD to ensure that quality metrics utilized are meaningful for, and to, people with IDD. In doing so, we have created a number of reports which may be helpful in CMS’ measure set efforts.

Building the Framework for IDD Quality Measures

'Building The Framework for IDD Quality Measures Guide

Guidance In The Move to Managed Care for IDD Services

'Move To Managed Care' Guide

Alternative Funding Models for People with IDD

IDD MLTSS Outcomes and Metrics Report Cover

Quality is an investment and a journey. We wish you much success as you modernize and improve 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. While our workgroup is committed to continuing this work to help create a roadmap towards quality services and supports for people with IDD, regardless of how we get there, it is critical that services maximize people with disabilities’ quality of life.


Carli Friedman, PhD
Co-chair, IDD MLTSS Workgroup
CQL Director of Research


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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.