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.

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.

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.

Ability to see friends when client wants

Participant Experience Survey, MRDD and acquired brain injury versions

Similar item appears on both survey versions

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

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

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

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

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

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.

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.

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.

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 3^rd, 4^th, 5^th, and 6^th 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