Note: Additional information on measures cited can be found in Appendix III.
Table A.V.1a. Tested Functioning Measures
I. Change in Daily Activity Function
Measure | Source | Notes |
---|---|---|
Percentage of patients whose ability to transfer in/out of bed, etc., improves or stays the same between start/resumption of care and discharge (from home health care). Companion measures include improvements in bathing, ambulation, and management of oral medications. | Outcome Assessment and Information Set (OASIS) | These measures were designed for postacute home health care and may not be appropriate for HCBS populations. |
Failure to improve: six measures: bladder incontinence; skin ulcers; Activities of Daily Living (ADLs); locomotion in home; cognitive function; difficulty in communication | Minimum Data Set (MDS)—Home Care | Focus of MDS home care measures is more on postacute care; relevance to many HCBS populations may be limited. |
Perceived improvement (in daily problems, social situations, symptoms, accomplishing activities) | ECHO 3.0 (all adult versions), based on four items. ECHO is the Experience of Care and Health Outcomes Survey. | Adult mental/behavioral health consumers; parallel proxy questions developed for children |
Percentage of adult mental health consumers and families of child/adolescent mental health recipients reporting positive outcomes from care (multiple dimensions of functioning) | Substance Abuse and Mental Health Services Administration (SAMHSA) National Outcome Measures | Data collected for mental health consumers, including those served via Medicaid, but likely not HCBS |
Mean change score in physical functional health status of patients receiving physical rehabilitation | Focus On Therapeutic Outcomes, Inc. (FOTO). | Focus is on postacute care; only a subset of HCBS participants receive physical rehabilitation services. |
Improvement on waiver: clients who can do more for themselves now | Participant Experience Survey, Acquired Brain Injury version | Adults with acquired brain injuries |
Percentage of new service recipients whose ADL or Instrumental ADL (IADL) assessment score has maintained or improved | Florida Aging (from Center for Health Systems Research and Analysis report) | This measure was not identified by the State but appeared in a summary report. |
Degree to which consumers experience an increased level of functioning | Commission on Accreditation of Rehabilitation Facilities | Tested with multiple disabilities populations |
Improved ability to function (socially, etc.) as a direct result of services received | Mental Health Statistics Improvement Program, Adult Consumer Survey | Mental health population, additional functioning items added for the Uniform Reporting System |
Functional abilities (multiple dimensions, including cognitive and physical) | Mayo-Portland Adaptability Inventory—4 | Adults with acquired brain injuries. Tool has been shown to be effective in discerning changes in functional ability over time. One known State using; may be others. |
Impact of pain/health on selected functional tasks (walking, ADLs, carrying groceries, etc.) | Medical Outcomes Study HIV Health Survey (MOS-HIV) | Adults with HIV. Tool could be used to assess changes in functioning over time—has not been tested for this. |
Problems with performing daily activities | Quality of Life Assessment Schedule | Individuals with Alzheimer's—longitudinal use could reflect changes in ability over time. Constructs are individual—respondents identify important dimensions of quality of life (QOL) in each domain. |
II. Availability of Assistance With Everyday Activities When Needed
Measure | Source | Notes |
---|---|---|
Access to services | National Core Indicators Consumer Survey | Individuals with intellectual disabilities |
Unmet need in ADLs/IADLs (11 measures total) | Participant Experience Survey | Item present in all three versions (elderly/disabled, mental retardation/developmental disabilities, and acquired brain injury); additional money management item in brain injury tool |
ADL and IADL unmet need items | Mathematica Waiver Evaluation Consumer Survey | Elderly/disabled waiver participants. Item wording is very similar to the Participant Experience Survey. |
Self-report of unmet need (scale based on six items) | Adequacy of Paraprofessional Home Care instruments | Frail elderly |
Adequacy and reliability of grocery service, home-delivered meals, homemaker and aide services (several relevant items for each) | Home Care Satisfaction Measure | Older adults receiving home care services. Items can be used individually or as part of a scale assessing overall satisfaction. |
Are you ever left sitting or lying in the same position so long that it hurts? | CAHPS® Nursing Home Survey: long-stay resident. CAHPS® is the Consumer Assessment of Healthcare Providers and Systems. | Developed and tested for nursing home settings |
Do you/does the client need more help with personal care than s/he is currently receiving? | Cash and Counseling Baseline Instrument | Individuals with disabilities participating in the demonstration project |
Do you/does the client need more help with transportation than s/he is currently receiving? | Cash and Counseling Baseline Instrument | Individuals with disabilities participating in the demonstration project |
Unmet need for assistance with: personal care; household activities; transportation | Cash and Counseling Demonstration Expansion: Performance Indicators | |
Inability to complete a personal care task due to lack of personal assistance. | Maine Consumer Experience Survey | Nonelderly adults with physical disabilities who direct their own services. Survey derived in part from Participant Experience Survey. |
III. Employment
Measure | Source | Notes |
---|---|---|
People choose where they work | Council on Quality and Leadership Personal Outcomes Measures | Individuals with intellectual or developmental disabilities and people with mental illness |
Current employment status and change over time | ECHO 3.0, supplemental items | Tool tested and developed for adult recipients of managed mental health services |
Community Integrated Employment: 6 measures from consumer survey related to community employment | National Core Indicators Consumer Survey | Developed and tested with intellectually disabled/developmentally disabled (ID/DD) population only |
The proportion of all individuals who receive daytime supports of any type who are engaged in community integrated employment. | National Core Indicators system measure | Developed for ID/DD population only |
Rate of adult mental health consumers competitively employed | SAMHSA National Outcome Measures | Mental health consumers |
Satisfaction and choice in current job/daily activity (2 measures) | Participant Experience Survey | Item supported by all three survey versions; applies to nonelderly adults only |
Unmet demand for employment, day program, or volunteer work | Participant Experience Survey | Item supported by all three survey versions; applies to nonelderly adults only, day program, and volunteer mental retardation/developmental disabilities (MRDD) only |
Proportion of people who are satisfied with their job or day program | National Core Indicators Consumer Survey | Individuals with intellectual disabilities |
The proportion of individuals age 18 and over who are supported in community integrated employment compared to the total number of adults who receive day services | National Core Indicators Basic Profile Report | Individuals with intellectual disabilities |
People have meaningful work and activity choices | Council on Quality and Leadership Basic Assurances | Individuals with intellectual or developmental disabilities and people with mental illness |
Supported employment for individuals with severe and persistent mental illness | National Association of State Mental Health Directors | Individuals with severe and persistent mental illness |
Degree of employment retention and average monthly income of consumers who are employed | Commission on Accreditation of Rehabilitation Facilities | Tested with multiple disabilities populations |
Current employment status | SAMHSA National Outcome Measures | Developed and tested with mental health populations |
Proportion of people who participate in inclusive work activities | Quality Indicators for Medicaid Services to People With Developmental Disabilities | Individuals with intellectual disabilities |
Experience with work and school (subjective and objective dimensions, including current employment status) | Lehman Quality of Life Scale | Nonelderly adults with severe mental illness |
Paid employment status | Mayo-Portland Adaptability Inventory—4 | Adults with acquired brain injuries. Tool has been shown to be effective in discerning changes in functional ability over time. One known State using; may be others. |
Current employment status/demand for employment | Mathematica Waiver Evaluation Consumer Survey | Elderly/disabled populations |
Current employment status and satisfaction | Sustained employment of people who have psychiatric conditions | Adult mental health consumers who are currently working—not designed or tested for those who are not working |
Current employment status and unmet need for employment | Peer Outcomes Protocol | Adult mental health consumers |
Employment status, choice, and satisfaction (some comparable items for volunteer activity) | Personal Assistance Services (PAS) Impact Survey: Consumer Survey | Adults with spinal cord injuries |
Competence/productivity scale | Schalock Quality of Life Questionnaire | Adults with intellectual disabilities. This scale assesses experience and satisfaction with current employment, not whether participants are working. |
IV. Friendships
Measure | Source | Notes |
---|---|---|
Ability to see friends when client wants | Participant Experience Survey, MRDD and acquired brain injury versions | Similar item appears on both survey versions |
People have friends and relationships (4 measures) | National Core Indicators Consumer Survey | Individuals with intellectual disabilities |
People have intimate relationships; people have friends. | Council on Quality and Leadership Personal Outcome Measures | Individuals with intellectual or developmental disabilities and people with mental illness |
Degree to which people express satisfaction with relationships | Commission on Accreditation of Rehabilitation Facilities | Tested with multiple disabilities populations |
Satisfaction with friendships and availability of people with whom to do "fun things" | Mental Health Statistics Improvement Program, additional items for Uniform Reporting Systems (also National Outcome Measures) | Adult mental health consumers, similar item for youths and families |
Proportion of people who are supported in having intimate relationships and proportion of people with active natural support networks | Quality Indicators for Medicaid Services to People With Developmental Disabilities | Individuals with intellectual disabilities |
Experience with social relations (subjective and objective dimensions, including frequency of social contacts) | Lehman Quality of Life Scale | Nonelderly adults with severe mental illness |
Social contact with friends, work associates, and other nonfamily | Mayo-Portland Adaptability Inventory—4 | Adults with acquired brain injuries. One known State using; may be others. |
Social contact with non-family members | Peer Outcomes Protocol | Adults in peer mental health programs |
Satisfaction with close friends | Quality of Life Scale (modified by Burkhardt) | Developed and tested with populations with chronic illness |
Satisfaction with friends | Quality of Life—Alzheimer's Disease (AD) Scale | Individuals with mild to moderate Alzheimer's; data provided by participants and caregivers |
People are supported to maintain relationships with family, friends, and coworkers. | Massachusetts Department of Mental Retardation Quality Indicators | Individuals with intellectual disabilities |
General satisfaction with amount of contact with friends | Minnesota Aging and Adult Services Consumer Experience Survey | Older adults and adults with physical disabilities |
Get the help needed to keep in touch with family and friends (writing letters, buying presents, telephoning) | New Hampshire Development Services Adult Outcomes Survey | Adults with developmental disabilities. Item includes family and friends. |
Proportion of people able to see friends and family when they want | National Core Indicators Consumer Survey | Measure includes "friends" and "family"; survey does include item specific to family. Individuals with intellectual disabilities. |
Communication occurs between people, their support staff, and their families. | Council on Quality and Leadership Basic Assurances | Individuals with intellectual or developmental disabilities and people with mental illness |
People are connected to natural support networks | Council on Quality and Leadership Personal Outcome Measures | Individuals with intellectual or developmental disabilities and people with mental illness |
Families remain together | Council on Quality and Leadership Personal Outcome Measures for Families of Young children | Families with a young child with an intellectual disability or mental illness |
People who feel they would have support needed from friends and family in a crisis | Mental Health Statistics Improvement Program, additional items for Uniform Reporting Systems | Adults, youth, and families of mental health consumers |
Experience with family relations (subjective and objective dimensions, including frequency of family contact) | Lehman Quality of Life Scale | Nonelderly adults with severe mental illness |
Family Involvement Scale (includes items assessing family/friends involvement in treatment) | Client-Centered Rehabilitation Questionnaire | Older adults and adults with physical disabilities; designed to assess experience with postacute (postdischarge) care; may not be relevant to HCBS |
Satisfaction with social relationships with family | Peer Outcomes Protocol | Adults with mental illness in peer programs. Only item in the social relationships domain. |
Satisfaction with relationships with parents, siblings, and other relatives | Quality of Life Scale (Burkhardt version for chronic illness) | Developed and tested with populations with chronic illness |
Satisfaction with family | Quality of Life—AD Scale | Individuals with mild to moderate Alzheimer's; data provided by participants and caregivers |
General satisfaction with amount of contact with family | Minnesota Aging and Adult Services Consumer Experience Survey | Older adults and adults with physical disabilities |
VI. Community Inclusion
Measure | Source | Notes |
---|---|---|
Participants reporting unmet need for community involvement | Participant Experience Survey | Item supported by all three versions; additional community involvement measures related to specific activities such as shopping present in BI and MRDD versions |
Percentage of people who feel they belong in their community | Mental Health Statistics Improvement Program, additional items for Uniform Reporting Systems (also National Outcome Measures) | Adult mental health consumers |
Satisfaction with community activities (several dimensions—participating in recreational activities, socializing, working, attending school, participating in organizations) | Quality of Life Scale (modified by Burkhardt) | Modified and tested for population with chronic illness. Items in scale can be summed to a single measure. |
The proportion of people who participate in everyday integrated activities in their communities. | National Core Indicators Consumer Survey | Individuals with intellectual disabilities |
Community indicators: (1)People contribute to their communities; (2) People live in communities; 3) People achieve personal goals and outcomes in communities; and (4) People have responsibilities in the community. | Council on Quality and Leadership Shared Values | Individuals with intellectual or developmental disabilities and people with mental illness. Companion measures available for children and youth. |
Community indicators: (1) Use environment; (2) Live in integrated environments; (3) Interact with other members of the community; (4) Perform different social roles; and (5) Participate in the life of the community. | Council on Quality and Leadership Personal Outcome Measures | Individuals with intellectual or developmental disabilities and people with mental illness. Companion measures available for children and youth. |
Outcomes related to senior center use (includes dimensions of community involvement) | Performance Outcome Measurement Project (POMP) Participant Survey | Older adults receiving services funded by the Administration on Aging |
Proportion of people who participate in integrative community activities | Quality Indicators for Medicaid Services to People With Developmental Disabilities | Individuals with intellectual disabilities |
Social isolation with distress | MDS-Home Care Quality Indicators | Focus of MDS home care measures is more on postacute care; relevance to many HCBS populations may be limited. |
Social/recreational activities (2 items) | Mathematica Waiver Evaluation Consumer Survey | Focus of MDS home care measures is more on postacute care; relevance to many HCBS populations may be limited. |
Community activities in past 7 days (4 items) | Peer Outcome Protocol | Elderly/disabled waiver participants |
Social belonging/community integration scale (several items, including ones related to friendships) | Schalock Quality of Life Questionnaire | Mental health consumers in peer programs |
Community connections (multiple items) | National Core Indicators Family Survey | Adults with intellectual disabilities |
Providers promote community inclusion | Empowering Arizona's Individuals Habilitation Survey | Families with at least one child with an intellectual disability |
Community integration and inclusion | Nebraska Family Experience Survey | Families of children receiving HCBS |
VII. School Attendance
Measure | Source | Notes |
---|---|---|
Children with increased school attendance | SAMHSA National Outcome Measures | Mental health population |
Proportion of children and adolescents for whom there is an increase in educational attainment | Commission on Accreditation of Rehabilitation Facilities | Tested with multiple disabilities populations |
Number of days child (with special health care needs) missed school during the last year due to illness or injury | National Survey of Children With Special Health Care Needs, 2001 | Children with special health care needs |
VIII. Serious Reportable Events
Measure | Source | Notes |
---|---|---|
Falls with injury | American Nurses Association | Residential care, nursing sensitive (may not apply) |
Medication errors in child residential programs | Center for Quality Assessment and Improvement in Mental Health/Child & Adolescent Residential Psychiatric Programs | Residential care for children with psychiatric disorders |
Patient injury during child/adolescent restraint | Center for Quality Assessment and Improvement in Mental Health/Child & Adolescent Residential Psychiatric Programs | Residential care for children with psychiatric disorders |
Patient death or disability associated with patient elopement for more than 4 hours. | National Quality Forum | Residential care |
Patient suicide or attempted suicide resulting in serious disability while being cared for in a health care facility. | National Quality Forum | Residential care |
Patient death or serious disability associated with medication error (wrong drug, dose, patient, time, rate, preparation, or mode of administration) | National Quality Forum | Residential care |
Patient death or disability associated with a burn incurred from any source while being cared for in a health care facility | National Quality Forum | Residential care |
Patient death associated with a fall while being cared for in a health care facility | National Quality Forum | Residential care |
Patient death associated with use of restraints or bedrails while being cared for in a health care facility | National Quality Forum | Residential care |
Abduction of a patient of any age | National Quality Forum | Residential care |
Sexual assault of a patient within or on the grounds of a health care facility | National Quality Forum | Residential care |
Death or significant injury resulting from a physical assault that occurs within or on the grounds of a health care facility | National Quality Forum | Residential care |
Emergent care for improper medication administration or medication side effects | OASIS | OASIS measures were designed for Medicare postacute care; not relevant for HCBS. |
Incidence of serious injuries reported among people with MR/DD in the course of service provision during the past year. | National Core Indicators System Variable | Individuals with intellectual disabilities |
Proportion of people who were victims of selected crimes reported to a law enforcement agency during the past year, by type of crime (rape, aggravated assault, and theft) | National Core Indicators System Variable | Individuals with intellectual disabilities |
Incidence of serious injuries resulting from substantiated incidents of abuse and neglect | National Core Indicators System Variable | Individuals with intellectual disabilities |
Incidence of serious injuries resulting from the use of restraints | National Core Indicators System Variable | Individuals with intellectual disabilities |
Neglect or abuse | MDS—Home Care Quality Indicators | Focus of MDS home care measures is more on postacute care; relevance to many HCBS populations may be limited. |
Ratio of injuries to client days | Chimes Performance Metrics | Individuals with intellectual disabilities. Includes all injuries, regardless of impact. |
Ratio of ER visits to client days | Chimes Performance Metrics | Individuals with intellectual disabilities. Includes all ER visits, regardless of impact. |
Ratio of medication errors to client days | Chimes Performance Metrics | Individuals with intellectual disabilities. Includes all medication errors, regardless of impact. |
Rate of substantiated abuse/neglect investigations/1,000 | Massachusetts Department of Mental Retardation Quality Indicators | Individuals with intellectual disabilities |
Percentage of seniors and adults with disabilities who are reabused within 12 months of first substantiated abuse: (a) seniors, (b) adults with disabilities, (c) persons with developmental disabilities | Oregon Division of Seniors and People With Disabilities | Data have been collected longitudinally for all three populations. |
IX. Avoidable Hospitalizations
Measure | Source | Notes |
---|---|---|
Prevention Quality Indicators: set of measures that can be used with hospital inpatient discharge data to identify quality of care for conditions for which good outpatient care can potentially prevent the need for hospitalization or for which early intervention can prevent complications or more severe disease | AHRQ | Not all measures may apply; hospital utilization data not available for all States or all payers (e.g., Medicaid) within a State. |
X. Receipt of Recommended Preventive Health Care
Measure | Source | Notes |
---|---|---|
Recommendations of evidence-based preventive services for primary care released by the U.S. Preventive Services Task Force (USPSTF) | AHRQ | The task force has identified nearly 100 recommended counseling and screening procedures; not all apply to all populations (e.g., some are specific to children or pregnant females). |
Screening tests for adults with intellectual disabilities | Wilkinson, et al. | Adaptation of USPSTF recommendations for people with intellectual disabilities. Other population-specific guidelines for preventive care likely exist, but identifying them all exceeds the scope of this scan. |
Proportion of people who have received routine, preventive health care in the past year and proportion of people who have had a dental exam in the past 12 months | Quality Indicators for Medicaid Services to People With Developmental Disabilities | Individuals with intellectual disabilities |
Percentage of women who had a mammogram during the measurement year or the year prior to the measurement year | CMS/NCQA | Need to adjust for age. |
Percentage of women who received one or two Pap tests during the measurement year or the 2 years prior to the measurement year | NCQA (HEDIS®) | Women |
Percentage of patients who received an influenza immunization during the one-year measurement period | Physician Consortium for Performance Improvement™ | Adults age 50 and older |
Percentage of adolescents who are on time with recommended immunizations—hepatitis B (Hep B), measles-mumps-rubella (MMR), tetanus, and verification of varicella immunity | Institute for Clinical Systems Improvement (ICSI) | Recommendation only |
Percentage of 2-year-olds who are on time with their primary series of immunizations—diphtheria-tetanus-pertussis, polio, MMR, pneumococcal conjugate (PCV7), varicella (VZV), Haemophilus influenzae type b (HiB), Hep B | Institute for Clinical Systems Improvement (ICSI) | Recommendation only |
Percentage of patients with all Level I preventive services (e.g. mammogram, hearing test, depression screening, smoking cessation, etc.) on time according to the guideline delivery schedule | Institute for Clinical Systems Improvement (ICSI) | Recommendation only |
Percentage of enrolled members 2 through 21 years of age who had at least one dental visit during the measurement year | NCQA—HEDIS | Children |
Well-child visits in the 3rd, 4th, 5th, and 6th years of life: percentage of members who were 3, 4, 5, or 6 years old during the measurement year who received one or more well-child visits with a primary care practitioner during the measurement year | NCQA—HEDIS | Children |
Percentage of enrollees age 18 years and over who had at least one preventive dental service during the look-back period (MEDDIC-MS SSI) | Wisconsin Department of Health and Family Services, MEDDIC-MS SSI 2007 technical specifications. Medicaid encounter data-driven improvement core measure set for SSI-eligible populations. | Developed for managed care enrollees |
Children with special health care needs not receiving routine preventive care (includes reasons why); parallel item for dental care | National Survey of Children With Special Health Care Needs, 2001 | Children with special health care needs |
Adult access to preventive/ambulatory health care | HEDIS 2007 | Measure developed for managed care |
Access to health and dental services (for children) | National Core Indicators Family Survey | Families with at least one child with an intellectual disability |
Visit dentist annually for cleaning and checkups | New Hampshire Development Services Adult Outcomes Survey | Adults with developmental disabilities |