Appendix V: Tested Measures by DRA Domain (continued)

How well clinicians communicate (includes elements of respect)

ECHO 3.0 (all adult versions), based on six survey items

Adult mental/behavioral health consumers; parallel proxy questions developed for children.

HIV ambulatory care satisfaction: multiple items related to treatment by direct service providers, including clinicians and mental health and substance abuse counselors

New York Department of Health AIDS Institute. Patient satisfaction survey for HIV ambulatory care (PSS-HIV).

Individuals receiving ambulatory care for HIV

Respectful treatment/careful listening by staff: 6 measures total for in-home, out-of-home and transportation staff

Participant Experience Survey

Measures supported by all three survey versions; additional items with simplified language in mental retardation/developmental disabilities version

Respectful treatment by home health aides and homemaker staff (3 items each)

Home Care Satisfaction Measure

All items in each domain can be rolled up into global satisfaction score.

Proportion of people indicating that most support staff treat them with respect

National Core Indicators Consumer Survey

ID/DD only

Dignity and respect: 5 indicators

Council on Quality and Leadership Basic Assurances

Not all indicators relate to treatment by direct staff; individuals with intellectual or developmental disabilities and people with mental illness

Staff sensitivity to cultural/ethnic background (additional respect items in consumer surveys)

Mental Health Statistics Improvement Program (adult, family, and youth instruments)

Mental health consumers

Degree to which consumers report that staff are sensitive to their cultural, ethnic, or linguistic backgrounds and degree to which consumers felt they were respected by staff

Commission on the Accreditation of Rehabilitation Facilities (CARF)

Behavioral health

Respect items from nursing home CAHPS®: What number would you use to rate: (1) how respectful staff are; (2) how well they listen; (3) how well they explain things in a way you understand?

CAHPS® nursing home long-stay resident instrument

Developed for nursing home settings

Respectful treatment by transportation staff

Performance Outcome Measures Project Transportation Survey

Survey specific to elderly

Proportion of people treated with respect and proportion of people from whom staff routinely ask permission before entering their bedroom or private living space

Quality Indicators for Medicaid Services to People With Developmental Disabilities

Individuals with intellectual disabilities

Frequency of "bad" treatment by paid helpers; provider competency and respect

Mathematica Waiver Evaluation Consumer Survey

Developed for HCBS waiver evaluation across States; language may be appropriate for additional testing or modification.

Support staff generally respectful and courteous

National Core Indicators Family Survey

Families with at least one child with an intellectual disability

Respect items: Providers listen to program participants, treat them with respect, are courteous and polite, are age appropriate

EAZI Habilitation and Attendant Surveys

Adults with developmental disabilities. Survey developed with peer input using CMS Systems Change grant funding.

Respectful treatment by personal care attendants: treat with respect; respect privacy; respect confidentiality; listen carefully

Maine Consumer Experience Survey

Nonelderly adults with physical disabilities who direct their own services

Respect, dignity, and privacy from providers (7 items in scale)

Nebraska Family Experience Survey

Families of children receiving HCBS

Choice in staff: percentage who do not help choose staff and would like to

Participant Experience Survey

Item present in all three survey tools

Proportion of people who make choices about their everyday lives, including: housing, roommates, daily routines, jobs, support staff or providers, and social activities.

National Core Indicators Consumer Survey

Measure includes choices in several areas, not just providers. Items specific to provider choice included in survey. Intellectually disabled/developmentally disabled population only.

Ability to select provider

Performance Outcome Measures Project (POMP5) Case Management Survey

Older adults receiving services from area agencies on aging; limited to those providers offering some degree of self-direction.

Ability to select providers and support workers

National Core Indicators Family Survey

Families with at least one child with an intellectual disability

Choice in provider

EAZI Habilitation and Attendant Surveys

Adults with developmental disabilities—survey developed with peer input using CMS Systems Change funding

Choice and control over providers (10 items)

Nebraska Family Experience Survey

Families of children receiving HCBS

Choose or hire staff who provide services in the home

New Hampshire Development Services Adult Outcomes Survey

Adults with developmental disabilities; includes family and friends.

Percentage of clients who took part in choosing who would provide services

Texas Rehabilitation Commission Client Satisfaction Survey

Individuals receiving rehabilitation services

Parent's experience with shared decisionmaking

CAHPS® Children With Chronic Conditions Supplemental Items (based on 4 items)

All children with chronic conditions; not specific to HCBS.

Client involved as much as wanted in treatment decisions

ECHO 3.0 (all adult versions)

Adult mental/behavioral health consumers; parallel proxy items developed for children.

HIV ambulatory care satisfaction: multiple items related to making choices about treatment options

New York State Department of Health AIDS Institute. Patient satisfaction survey for HIV ambulatory care (PSS-HIV).

Individuals receiving ambulatory care for HIV/AIDS

Directing staff: program participants who do not help direct staff and want to

Participant Experience Survey

Item present in all three survey versions

Control over timing of ADL/IADL assistance (5 items: bathing, dressing, transferring, eating, and getting groceries)

Participant Experience Survey, brain injury version

Adults with acquired brain injuries

Proportion of people who make choices about their everyday lives, including: housing, roommates, daily routines, jobs, support staff or providers, and social activities

National Core Indicators Consumer Survey

Measure includes choices in several areas, not just providers; intellectually disabled/developmentally disabled population only.

People direct decisions that affect their lives

Council on Quality and Leadership Shared Values

Individuals with intellectual or developmental disabilities and people with mental illness

People choose services

Council on Quality and Leadership Personal Outcomes Measures

Individuals with intellectual or developmental disabilities and people with mental illness

Consumer participation in treatment decisions

Mental Health Statistics Improvement Program (adult, family, and youth consumer surveys)

Adults with severe/persistent mental illness

Degree of active consumer participation in decisions concerning their treatment

Commission on the Accreditation of Rehabilitation Facilities (CARF)

Tested with multiple disability populations

Ability to select services received

POMP5 Case Management Survey

Older adults receiving services from area agencies on aging; limited to those providers offering some degree of self-direction.

Proportion of people who make choices about their daily routines and activities

Quality Indicators for Medicaid Services to People With Developmental Disabilities

Individuals with intellectual disabilities

Participant decides how and when things are done and has choice in tasks performed by paid helpers and in scheduling.

Mathematica Waiver Evaluation Consumer Survey

Developed for HCBS waiver evaluation across States; language may be appropriate for additional testing or modification.

Decisionmaking (scale including items related to making choices about services and treatment)

Client-Centered Rehabilitation Questionnaires

Recipients of rehabilitation services; may not be relevant to HCBS model.

Choice and control over personal assistance services (several items, including items specific to choice in ADLs/IADLs)

Personal Assistance Services (PAS) Impact Survey: Consumer Survey

Adults with spinal cord injuries

Control over daily activity (eating, bedtime, recreational activities)

Schalock Quality of Life Questionnaire

Adults with intellectual disabilities

Ability to choose where and when to receive services, control over scheduling, tasks completed as participant wants

EAZI Habilitation and Attendant Surveys

Adults with developmental disabilities.� Survey developed with peer input using CMS Systems Change grant funding.

Customers make informed choices and have control about their services.

Kansas Department on Aging, Frail/Elderly Consumer Interview Protocol

Older adults—performance measure supported by a number of interview items.

Percentage of consumers who participated as much as they wanted in the development of their care plans

Maine Consumer Experience Survey

Nonelderly adults with physical disabilities who direct their own services

Percentage of clients who took part in planning the services they received

Texas Rehabilitation Commission Client Satisfaction Survey

Individuals receiving rehabilitation services

HIV ambulatory care satisfaction: 14 items related to case management services, including overall satisfaction items

New York State Department of Health AIDS Institute. Patient satisfaction survey for HIV ambulatory care (PSS-HIV).

Developed for individuals with HIV served in ambulatory settings

Case manager helpfulness

Participant Experience Survey

Item present in all three survey versions

Satisfaction with case management services: composite score based on 13 items

Home Care Satisfaction Measures

Older adults receiving home care services

Satisfaction with service coordination: 3 measures (accessible, responsive, supportive)

National Core Indicators Consumer Survey

Intellectually disabled/developmentally disabled population only

Consumer assessment of case management

Center for Quality Assessment and Improvement in Mental Health

Persons with severe and persistent mental illness enrolled in health plans

Percentage of people who feel it is a problem to receive advice/assistance from more than one case manager

Indiana Medicaid Select Survey/Integrated Care Program Recommendation

Individuals with disabilities

Member satisfaction with case management

Assessing Care of Vulnerable Elderly

Community-dwelling older adults

Proportion of members who report they can easily get in touch with their care coordinator or case manager (also measure of frequency of contact with case manager)

AXIS Healthcare (as reported by Center for Health Systems Research and Analysis)

These items have been incorporated into another tool currently undergoing testing.

Overall satisfaction with assistance in coordinating care for child with special health care needs

National Survey of Children With Special Health Care Needs, 2001

Children with special health care needs

Satisfaction with, effectiveness of case management (13 items on various dimensions of case management, plus one overall satisfaction item)

POMP5 Case Management Survey

Older adults with physical and cognitive disabilities, case management payer not necessarily Medicaid, but items are generic

Percentage reporting that service coordinators provide needed assistance when requested

National Core Indicators Family Survey

Families with at least one child with an intellectual disability

Experience with care measures from the Young Adult Health Care Survey

Young Adult Health Care Survey

Adolescents 14-18

Global rating of counseling and treatment services

ECHO 3.0 (all adult versions)

Adult mental health consumers; parallel proxy items for children.

Percentage of adult mental health consumers and families of child/adolescent mental health recipients reporting positive outcomes from care

SAMHSA National Outcome Measures

Adult mental health consumers and family members of child/adolescent consumers

Percentage of parents of health plan members who reported their experiences with family-centered care regarding their children with chronic conditions

CAHPS® 3.0 Health Plan Survey

Children age 17 and under enrolled in a health plan (including Medicaid recipients)

Satisfaction with transportation services (several dimensions)

POMP Transportation Survey

Developed for older adults receiving services funded by the Administration on Aging

Overall satisfaction with home-delivered meal program

POMP Home-Delivered Meals Extended Core Survey

Developed for older adults receiving services funded by the Administration on Aging

Satisfaction with paid help (several related items)

Cash and Counseling Baseline Instrument

Individuals participating in the initial cash and counseling demonstration project

Satisfaction with paid caregivers

Cash and Counseling Demonstration Expansion: Performance Indicators

Data are not really comparable and indicators are not precisely defined; States use available data to provide information about the domain.

Satisfaction with paid care (several related items)

Mathematica Waiver Evaluation Consumer Survey

Elderly/disabled waiver participants. Historical data from evaluation could be used for trending.

Service outcomes (multiple items)

National Core Indicators Family Survey

Families with at least one child with an intellectual disability

HIV-positive adolescent and adult patient ratings of the care provided to them at their clinic, plus multiple other items related to perception of care experience

New York State Department of Health AIDS Institute; Patient Satisfaction Survey for HIV Ambulatory Care (PSS-HIV)

Clinic-based care included in HIV waivers?

Satisfaction with staff

Participant Experience Survey, brain injury version

Adults with acquired brain injuries

Global home health satisfaction (includes case management, groceries, home health aides, homemaker services, and home-delivered meals)

Home Care Satisfaction Survey

Elderly recipients of home care

Degree to which consumers were satisfied with overall services

Commission on the Accreditation of Rehabilitation Facilities (CARF)

Behavioral health consumers

Overall satisfaction: Overall, what number would you use to rate the care you get from the staff?

CAHPS® Nursing Home Survey: long-stay resident

Developed and testing for nursing home setting; generic item.

Satisfaction with mental health services agency: like services, would choose, would recommend

Mental Health Statistics Improvement Program, Adult Consumer Survey

Overall satisfaction with services received

Mental Health Statistics Improvement Survey, Youth Services Survey

Mental health consumers

Caregiver's overall assessment of formal services received by the person he or she cares for

POMP5 Caregiver Program Support and Assessment Telephone Survey

Respondent is caregiver proxy, not recipient. Survey designed to assess the National Family Caregiver Support Program.

Perception of care (multiple dimensions covering 14 items)

SAMHSA National Outcome Measures

Developed and tested for mental health population

Service satisfaction scales: home worker; personal care; home-delivered meals

Service Adequacy and Satisfaction Instrument

Developed and tested with service recipients age 60 and older

Satisfaction with care; scale based on six items.

Adequacy of Paraprofessional Home Care instrument

Frail older adults

Program Satisfaction Module

Peer Outcomes Protocol

Mental health consumers in peer programs

Satisfaction with care provided by personal assistance service staff (several dimensions, including competence and respectful treatment)

Personal Assistance Services (PAS) Impact Survey: Consumer Survey

Adults with spinal cord injuries. Includes questions regarding assistance with sexuality and other potentially sensitive topics.

Global satisfaction with treatment services

PERMS 1.0

Individuals receiving mental health and substance abuse treatment

Satisfaction with home: (overall, satisfaction with family living and with housemates)

Participant Experience Survey, mental retardation/developmental disabilities and brain injury versions

Slight wording differences between the two survey versions

Choice in home: 2 measures (overall choice and choice of roommates in congregate settings)

Participant Experience Survey, mental retardation/developmental disabilities and brain injury versions

Slight wording differences between the two survey versions

Proportion of people who are happy with the people they live with

Quality Indicators for Medicaid Services to People With Developmental Disabilities

Individuals with intellectual disabilities

Satisfaction with current housing situation

Peer Outcomes Protocol

Mental health consumers

Choice and decisionmaking in housing (2 measures)

National Core Indicators Consumer Survey

Measures cover choice in more than one area; consumer survey includes specific items related to housing and roommate choice.

Proportion of people who are satisfied with where they live

National Core Indicators Consumer Survey

Intellectually disabled/ developmentally disabled population only

People choose where and with whom they live

Council on Quality and Leadership Personal Outcome Measures

Individuals with intellectual or developmental disabilities and people with mental illness; companion measures for children, youth, and families.

Degree to which consumers report housing situation is better

Commission on the Accreditation of Rehabilitation Facilities (CARF)

Tested with multiple disability populations

Degree to which consumers report they live in a home of their choosing

Commission on the Accreditation of Rehabilitation Facilities (CARF)

Tested with multiple disability populations

Satisfaction with current living situation (subjective and objective dimensions)

Lehman Quality of Life Scale

Nonelderly adults with serious mental illness

Like where you live, choose where you live

New Hampshire Development Services Adult Outcomes Survey

Adults with developmental disabilities

Satisfaction with current residence

Mathematica Waiver Evaluation Consumer Survey

Elderly and physically disabled waiver participants

Percentage of adult and adolescent patients assessed who disclosed that they were victims of abuse

Family Violence Prevention Fund. National consensus guidelines on identifying and responding to domestic violence victimization in health care settings.

Specific to intimate partner violence

Client report of theft

Participant Experience Survey

Item supported by all three survey versions, but wording differs. In addition, elderly/disabled tool refers only to theft by direct care staff; brain injury and mental retardation/developmental disabilities versions refer to theft by anyone.

Client report of verbal abuse

Participant Experience Survey

Item supported by all three survey versions, but wording differs. In addition, elderly/disabled tool refers only to verbal abuse by direct care staff; brain injury and mental retardation/developmental disabilities versions refer to verbal abuse by anyone.

Client report of injury

Participant Experience Survey

Item supported by all three survey versions, but wording differs. In addition, elderly/disabled tool refers only to injury caused by direct care staff; brain injury and mental retardation/developmental disabilities versions refer to injury caused by anyone (could be accidental or deliberate).

Unwanted physical contact

Participant Experience Survey, brain injury version

"Touched in a way you don't like" (anyone)

People are free from abuse, neglect, mistreatment, and exploitation

Council on Quality and Leadership Basic Assurances

Individuals with intellectual or developmental disabilities and people with mental illness

People are free from abuse and neglect

Council on Quality and Leadership Personal Outcome Measures

Individuals with intellectual or developmental disabilities and people with mental illness; companion measures for children and youth.

Proportion of people who report that they are free from abuse and neglect

Quality Indicators for Medicaid Services to People With Developmental Disabilities

Individuals with intellectual disabilities

Self-reported abuse and neglect

Peer Outcomes Protocol

Adult mental health consumers in peer programs

People living with respondent who hurt, pester, scare, or anger him/her.

Schalock Quality of Life Questionnaire

Adults with spinal cord injuries

Injuries/falls while with PAS, along with neglect and abuse, including sexual abuse, by PAS

Personal Assistance Services (PAS) Impact Survey: Consumer Survey

Adults with intellectual disabilities. This is one item in the empowerment/independence scale.

Direct provider staff act as if improvement is possible (support for recovery)

ECHO 3.0 supplemental items

Adult mental/behavioral health consumers

Staff attention to recovery potential

Mental Health Statistics Improvement Program

Mental health consumers