Appendix V (continued)

How well clinicians communicate (includes elements of respect)

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

4

3

3

3

13

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

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

Participant Experience Survey

4

5

3

5

17

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 Survey

4

4

3

4

15

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

4

4

3

5

16

Individuals with intellectual disabilities

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

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

4

3

3

5

15

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)

4

5

3

5

17

Developed and tested with multiple disability populations

Respectful treatment by transportation staff

POMP Transportation Survey

3

4

3

5

15

Survey specific to older adults receiving services funded by the Administration on Aging

Support staff generally respectful and courteous

National Core Indicators Family Survey

3

4

3

5

15

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

3

4

3

3

13

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

3

4

3

3

13

Nonelderly adults with physical disabilities who direct their own services

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

Nebraska Family Experience Survey

3

3

3

3

12

Families of children receiving HCBS

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

Participant Experience Survey

4

5

3

5

17

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

4

4

3

5

16

Measure includes choices in several areas, not just providers. � Items specific to provider choice included in survey. Population with intellectual disabilities.

Ability to select provider

POMP5 Case Management Survey

3

4

3

5

15

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

3

4

3

5

15

Families with at least one child with an intellectual disability

Choice in provider

EAZI Habilitation and Attendant Surveys

3

4

3

3

13

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

3

3

3

3

12

Families of children receiving HCBS

Choose or hire staff who provide services in the home

New Hampshire Development Services Adult Outcomes Survey

3

4

3

3

13

Adults with developmental disabilities; includes family and friends.

Parent's Experience With Shared Decisionmaking

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

4

3

3

5

15

All children with chronic conditions, not specific to HCBS

Percentage of children with special health care needs whose families partner in decisionmaking at all levels and are satisfied with the services they receive

Children With Special Health Care Needs Survey

4

3

3

5

15

Children with special health care needs, ages 0-18

Client involved as much as wanted in treatment decisions

ECHO 3.0 (all adult versions)

4

3

3

5

15

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

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

Participant Experience Survey

4

5

3

5

17

Item present in all 3 survey versions

Control over timing of ADLs/IADLs (5 items: bathing, dressing, transferring, eating, and getting groceries)

Participant Experience Survey, brain injury version

3

3

3

4

13

Adults with acquired brain injuries

Consumer participation in treatment decisions

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

4

3

3

5

15

Adults with severe/persistent mental illness

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

4

4

3

5

16

Measure includes choices in several areas, not just providers; individuals with intellectual disabilities.

Degree of active consumer participation in decisions concerning their treatment

Commission on the Accreditation of Rehabilitation Facilities (CARF)

4

5

3

5

17

Tested with multiple disability populations

Ability to select services received

POMP5 Case Management Survey

3

4

3

5

15

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

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

Schalock Quality of Life Questionnaire

4

4

3

4

15

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

3

4

3

3

13

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

4

4

3

3

14

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

3

4

3

3

13

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

4

2

3

2 or 3

10 or 11

Individuals receiving rehabilitation services

Case manager helpfulness

Participant Experience Survey

4

5

3

5

17

Item present in all three survey versions

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

Home Care Satisfaction Survey

4

4

3

4

15

Older adults receiving home care services

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

National Core Indicators Consumer Survey

4

4

3

5

16

Intellectually disabled/developmentally disabled population only

Consumer assessment of case management

Center for Quality Assessment and Improvement in Mental Health

4

3

3

3

13

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

3

4

3

3

13

Individuals with disabilities

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

National Survey of Children With Special Health Care Needs

4

3

3

2

12

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

3

4

3

5

15

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

Percentage reporting that service coordinators provide needed assistance when requested

National Core Indicators Family Survey

3

4

3

5

15

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

4

2

3

2

11

Adolescents 14-18

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

Mental Health Statistics Improvement Program, Adult Consumer Survey

4

3

3

5

15

Adult mental health consumers

Overall satisfaction with services received

Mental Health Statistics Improvement Survey, Youth Services Survey

4

3

3

5

15

Children receiving mental health services

Global rating of counseling and treatment services

ECHO 3.0 (all adult versions)

4

3

3

3

13

Adult mental health consumers; parallel proxy items for children.

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

4

3

3

5

15

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

Satisfaction with transportation services (several dimensions)

POMP Transportation Survey

3

4

3

5

15

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

3

4

3

5

15

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

Service outcomes (multiple items)

National Core Indicators Family Survey

3

4

3

5

15

Families with at least one child with an intellectual disability

Satisfaction with staff

Participant Experience Survey, brain injury version

3

3

3

4

13

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

4

4

3

4

15

Elderly recipients of home care

Degree to which consumers were satisfied with overall services

Commission on the Accreditation of Rehabilitation Facilities (CARF)

4

5

3

5

17

Developed and tested with multiple disability populations

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

POMP5 Caregiver Program Support and Assessment Telephone Survey

3

4

3

5

15

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

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

Service Adequacy and Satisfaction Instrument

4

4

3

3

14

Developed and tested with service recipients age 60 and older

Global satisfaction with treatment services

PERMS 1.0

4

3

3

2

12

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

4

5

3

5

17

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

4

5

3

5

17

Slight wording differences between the two survey versions

Choice and decisionmaking in housing (2 measures)

National Core Indicators Consumer Survey

4

4

3

5

16

Measures reflect 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

4

4

3

5

16

Individuals with intellectual disabilities

Degree to which consumers report housing situation is better

Commission on the Accreditation of Rehabilitation Facilities (CARF)

4

5

3

5

17

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)

4

5

3

5

17

Tested with multiple disability populations

Satisfaction with current living situation (subjective and objective dimensions)

Lehman Quality of Life Scale

4

3

3

2

12

Nonelderly adults with serious mental illness

Like where you live, choose where you live

New Hampshire Development Services Adult Outcomes Survey

3

4

3

3

13

Adults with developmental disabilities

Client report of theft

Participant Experience Survey

4

5

3

5

17

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

4

5

3

5

17

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

4

5

3

5

17

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

3

3

3

4

13

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

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

Schalock Quality of Life Questionnaire

4

4

3

4

15

Adults with spinal cord injuries

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

ECHO 3.0 supplemental items

4

3

3

3

13

Adult mental/behavioral health consumers

Staff attention to recovery potential

Mental Health Statistics Improvement Program

4

3

3

5

15

Mental health consumers