RTC/OM HCBS Outcome Measures

The University of Minnesota’s Research and Training Center on HCBS Outcome Measurement (RTC/OM) followed a multi-phased and iterative development and testing process to develop a set of two-tiered measures related to eight different domains of the National Quality Forum’s (NQF) Framework for Home and Community-Based Services (HCBS). All measures are intended to be used with adult HCBS recipients who exper-ience intellectual/developmental, physical, age-related, or psychiatric disabilities, as well as with people who have traumatic/acquired brain injury. The measures are person-centered and focus on assessment of the extent to which desired levels of outcomes have been achieved by people with disabilities receiving HCBS. RTC/OM measures coincide with individual domains and subdomains of the Revised National Quality Forum Framework (RTC/OM, 2016).

Fig. 1. RTC/OM Revised National Quality Forum HCBS Outcome Measurement Framework

Each of the outcome measures developed by the RTC/OM is modular in format. Measures can therefore be used independently or in conjunction with other measures as part of a structured interview. There are two tiers of items within each measure. The first tier (tier 1) includes global items designed to gain a broad understanding of each measurement domain/subdomain. The second tier (tier 2) includes specific items that are intended to elicit more detailed and actionable information regarding specific domains/subdomains. Tier 2 items can be used to gain more complete information for all or some participant responses to the global items.

It is important to note that a number of HCBS outcome measures are currently available and in use. However, many of these focus primarily on state level compliance with regulations set forth by the Center for Medicaid and Medicare Services (CMS) for programs eligible for funding under Home and Community-Based Services waivers. RTC/OM outcome measures are focused on the provider level and have the capacity to be used longitudinally (at multiple points across a specified time period) in order to assess when change has taken place in the outcomes HCBS recipients are experiencing.

A description of the purpose and structure of each outcome measure is provided below.

Choice and Control Domain Measures

The Choice and Control measures are designed to determine the extent to which recipients of HCBS make important decisions over their daily lives and services. One measure focuses on choice and control over daily living while the other centers on the choices people have and the control they exercise over the services and supports they receive. Each measure is designed to determine: (a) the level of personal control a person exercises, (b) the degree to which this is consistent with the level of control they desire to exercise, and (c) the level of importance they assign to having control over each area. There are three subscales within the measure: choice over personal and daily life, choice over services and supports, and self-direction. The self-direction scale is intended for HCBS recipients who utilize a self-directed waiver plan and determines their degree of control over the plan.

Total Number of Items: 46

Choice Over Personal and Daily Life: 21
- Tier 1 Items (Global): 3
- Tier 2 Items (Specific): 18
Choice Over Services and Supports Total Items: 20
- Tier 1 Items (Global): 5
- Tier 2 Items (Specific): 15
Self-Direction: 5

Consumer Leadership in System Development Measures

The Consumer Leadership in System Development domain measures include the Evidence of Meaningful Consumer Involvement and System Supports Meaningful Consumer Involvement measures. The Evidence of Meaningful Consumer Involvement measure focuses on the degree to which an HCBS recipient has assumed a leadership role in improving the organization that provides their services and the HCBS system as a whole. The System Supports Meaningful Consumer Involvement measure evaluates the extent to which the organization in questions is providing opportunities for leadership and supporting the HCBS recipient to be involved in the design and improvement of HCBS.

Total Number of Items (All Sub Measures):

Evidence of Meaningful Consumer Involvement: 11
- Tier 1 Items (Global): 5
- Tier 2 Items (Specific): 6
System supports meaningful consumer involvement: 10
- Tier 1 Items (Global): 3
- Tier 2 Items (Specific): 7

Freedom From Abuse and Neglect Domain Measure

The Freedom from Abuse and Neglect measure was developed to assess the extent to which HCBS recipients are free from and have access to the resources needed to be able to report abuse and neglect, and their perceptions of safety. The measure includes two indicators related to abuse and neglect. The first, Freedom from Abuse and Neglect focuses on a person’s actual experience of abuse and/or neglect, and the degree to which they feel safe The second, Abuse and Neglect Education focuses on the extent to which the individual’s support organization has provided training/instruction related to identifying instances of abuse and neglect, reporting these incidents in a safe way, and understanding the services and supports that can be used if one is victimized.

Total Number of Items: 26

Tier 1 Items (Global): 4
Tier 2 Items (Specific): 22

Employment Measures

The Employment measures developed include three components or sub-measures: Job Experiences, Experiences Seeking Employment, and Retirement. Both unemployed and employed HCBS recipients are administered the Experiences Seeking Employment sub measure and are asked about their desires related to work and previous attempts at getting work, along with barriers to finding employment. In addition, for employed HCBS recipients, the Job Experience section measures various aspects of their employment experience. Lastly, individuals are briefly asked about their retirement planning including if they are or did plan for their retirement and the extent of their planning.

Total Number of Items (All Sub Measures Combined): 31

Job Experiences: 14
- Tier 1 Items (Global): 3
- Tier 2 Items (Specific): 11
Experiences Seeking Employment: 13
- Tier 1 Items (Global): 3
- Tier 2 Items (Specific): 10
Retirement Planning: 4

Person-Centered Planning and Coordination Domain Measures

The Person-Centered Planning and Coordination measures cover multiple aspects of the provision of person-centered HCBS including Assessment, Planning, Coordination, and Life Outcomes Goal Attainment. The Person-Centered Assessment and Planning measures evaluate the extent to which the assessment and planning for the HCBS recipient’s needs is completed in a person-centered manner. The Coordination measure assesses several different aspects of the quality of person-centered service coordination and provision. The Life Outcomes Goal Attainment measure can be used for several purposes. These include identifying a person’s desired life goals, assessing the degree to which the HCBS recipient is making progress toward or has achieved personal goals, the barriers they have encountered along the way and any additional supports they believe are needed to support progress toward goals or goal attainment.

Total Number of Items: 77

Person-Centered Assessment: 12
- Tier 1 Items (Global): 2
- Tier 2 Items (Specific): 10
Person-Centered Planning: 17
- Tier 1 Items (Global): 3
- Tier 2 Items (Specific): 14
Person-Centered Coordination: 22
- Tier 1 Items (Global): 3
- Tier 2 Items (Specific): 19
Person-Centered Life Outcomes Goal Attainment Measure: 30

Meaningful Community-Based Activity

The Meaningful Activity measure includes items related to six general categories of meaningful activities: everyday life tasks, social activities, leisure/relaxing activities, physical exercise, educational, and professional activities. For each type of activity category the individual is asked: if the type of activity is meaningful to them; if they take part in this type of activity enough to meet their needs/desires; if they recently enjoyed engaging in this type of activity; and finally, if they receive enough support to take part in activities to the extent to which they desire.

Total Number of Items: 29

Tier 1 Items (Global): 3
Tier 2 Items (Specific): 26

The Social Connectedness measure currently has 15 items assessing participation in the community and relationships with family members and friends. Items address both the person’s connection with the community (i.e., if people in the community are friendly; do respondent feel connected to others in their community, social support (i.e., emotional, instrumental, informational, companionship) including areas in which social support is received when needed and opportunities to provide it to others (i.e., The reciprocity they experience in their personal lives). In addition, the measure assesses the extent to which services and supports are assisting HCBS recipients in being and staying socially connected.

Total Number of Items: 15

Tier 1 Items (Global): 3
Tier 2 Items (Specific): 12

Transportation

The Transportation measure is designed to determine the types of transportation a person most often uses, the quality of this transportation, the barriers to using the modes of transportation the person currently uses, and those modes they desire to use more frequently. In addition, items assess the HCBS recipient’s judgment of transportation affordability and accessibility and the extent to which the transportation support they have available is meeting their needs.

Total Number of Items: 17

Tier 1 Items (Global): 4
Tier 2 Items (Specific): 13