national core indicators consumer survey

National Core Indicators Consumer Survey

Sarah Taub & June Rowe

Human Services Research Institute

December 9, 2004

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Background & Basics

National Core Indicators Started in 1997 Over 22 states participating Importance of consumer perspective Tool designed to measure specific indicators;

not a general satisfaction survey Reports generate national benchmarks for

comparison

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CMS and States are defining quality outcomes

for HCBS services

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Quality Framework: Quality Management System

Design – how services and supports are designed and delivered

Discovery – methods and processes to monitor the quality of services and supports (data collection, analysis for patterns and trends)

Remediation – action to fix problems

Improvement – making sub-state and statewide improvements

Information from NCI used to make improvements in HCBS services

NCI is an important discovery process – quality of services from the individual’s perspective

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New Approach to Quality in HCBS

State build quality and self-direction into the design of their waiver application

State monitors individuals and fixes problems

State collects and analyzes data for trends and patterns across populations

State makes changes to policy, practices and resources based on their analysis

CMS maintains and on “going dialogue” with states and looks for evidence of state over-sight

States report the Quality management (QM) activity and results to CMS and the public

Waiver Application

Waiver Application

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Quality Management:Quality of Waiver services from a variety of perspectives and data sources

Case management monitoring

Incident reporting (e.g., abuse/neglect, major injuries, deaths, medication errors) and risk management

Provider reviews

Consumer surveys!!!!!

Review of claims (e.g., under/over utilization of services)

Assessments and service plans

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Aligning the Quality Framework with the NCI survey

QF Focus Area: Participant-Centered Service Planning & Delivery

NCI: Self-determination & choiceHealth and wellnessService coordinationService delivery

QF Focus Area: Participant Rights & Responsibilities

NCI:Self-advocacyRespect for rightsGuardianship/

advocacy

QF Focus Area: Provider Capacity & Capabilities

NCI:Staff competencies

QF Focus Area: Participant Outcomes & Satisfaction

NCI:Outcomes/Satisfaction (e.g., job,

earnings, home)

QF Focus Area: Participant Safeguards

NCI:MedicationSafety

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NCI provides important information about the overall quality of the state’s waiver services and supports

QF Focus Area: System Performance

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Overview of Survey Tool

Components of the Survey Pre-Survey Form Background Information Section I Section II Interviewer Feedback Sheet

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Purpose To provide interviewers with information

needed for scheduling To determine special accommodations,

communication issues, etc. To obtain familiar names and terms for

ease of conversation (fill in the blanks!) Process varies by state…

Who best to fill out form and where to get the information

Informed consent procedures

Pre-Survey Form

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Key items to review prior to scheduling interviews Does caregiver need to be present? Communication needs? Familiar terms and names

Pre-Survey Form

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Background Information

General Collects demographic and indicator data Very important for data analysis! Unique survey code or identifier must be used Highlighted items are used for Risk Adjustment Some information may come from records; other

information could be provided by staff or family OK to separate this section and have it filled out

during interview

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Background Information

Specific Date of Birth is used to calculate age, then deleted

Do NOT enter other information that would identify the person (e.g., name, SSN)

Behavioral Support Needs section should be filled out by someone other than the person receiving services

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Background Information

Core indicators The proportion of people receiving psychotropic

medications

The proportion of people who have had a physical exam in the past year

The proportion of people who have had a GYN exam in the past year

The proportion of people who have had a routine dental exam in the past six months

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Background Information

Core indicators The proportion of people who maintain healthy

habits in such areas as smoking, weight, and exercise

The proportion of people who are exercising self-determination with regard to the services they receive

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Section I: Direct Interview

Things to keep in mind… Only the person receiving services may respond Conduct interview in private if possible People may skip any question Do not leave any questions blank – record “9” if

necessary Others may provide assistance by interpreting

questions and responses Introduce yourself and make sure people understand

purpose of interview

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Work/Daytime Activities

Core Indicators The proportion of people reporting satisfaction

with their job or day program The proportion of people indicating that most

support staff treat them with respect

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Work/Daytime Activities

For Questions 1-2: include all types of work and daytime activities - paid,

unpaid, community-based jobs, supported employment, facility-based jobs, day programs, volunteer work, non-vocational programs, training facilities, etc.

If respondent has more than one job/day activity, ask how s/he feels in general or “most of the time.”

If respondent works and attends school, ask about work only

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Home

Core indicators The proportion of people who report

satisfaction with where they live The proportion of people who report

satisfaction with the amount of privacy they have

The proportion of people who report that they feel safe in their home and neighborhood

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Home

4. Can you be alone if you want to? (Can you have privacy?)

Here we are looking at privacy (e.g. going in a room and closing the door), not the person's need for supervision (e.g. staying home alone).

__8 NOT APPLICABLE - lives alone

__2 Yes, has enough time alone

__0 No, would like more time alone

__9 Don’t know, no response, unclear response

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Friends and Family

Core Indicators The proportion of people who report having friends

and caring relationships with people other than support staff and family members

The proportion of people who report having a close friend, someone they can talk to about private matters

The proportion of people who are able to see their families and friends when they want

The proportion of people reporting feeling lonely

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Friends and Family

Do you have friends you like to talk to or do things with?

If s/he answers "yes," ask who the friends are and try to determine if they are family, staff, roommates, co-workers, etc. You can use prompts such as: Can you tell me their names? Are these friends staff or your family?

__2 Yes, has friends who are not staff or family

__1 Yes, all friends are staff or family, or cannot determine

__0 No, does not have friends

__9 Don’t know, no response, unclear response

If the person responds "NO" TO BOTH QUESTIONS 10 AND 11, code Questions 12 as "NOT APPLICABLE." Also code Question 47 as “NOT APPLICABLE.”

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Friends and Family

Keep in mind… These questions often elicit emotional responses Questions 12 and 14 are about whether people get

support to see family and friends. Read response options carefully!

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Satisfaction w/Services & Supports

Core Indicators The proportion of people who know their service

coordinators The proportion of people reporting that their service

coordinators help them get what they need The proportion of people reporting that service

coordinators asked about their preferences

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Satisfaction w/Services & Supports

Core indicators The proportion of people who report that they know

their “advocate” or guardian The proportion of people reporting that they receive

support to do or learn new things The proportion of people who are satisfied with their

personal lives The proportion of people who report having adequate

transportation when they want to go somewhere

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Satisfaction w/Services & Supports

15. Do you know your case manager/service coordinator?

PS-3 Do you know _________________________________________________ ?

__8 NOT APPLICABLE – person does not have case manager/service coordinator

__2 Yes, person knows case manager/service coordinator

__1 Maybe, not sure

__0 No, person does not know case manager/service coordinator

__9 Don’t know, no response, unclear response

PS-3

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Self-Determination

Core Indicator: The proportion of people who control their own

budgets

People who are self-directing their services and supports know…

how much is in their budget how it is being spent

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Interviewer Ratings

Indicate whether Section I could be completed Did the person understand questions? Did the person give consistent and valid answers?

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Transition to Section II

If the person was able to provide valid responses, see if a break is needed.

If the person was not able to provide valid responses or does not want to continue, end interview and complete Section II with other respondent.

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Try to interview the person Alternative interviewees…

Family Advocate Staff

Be careful not to overuse the “NA” Indicate who was interviewed for every question

Section II Basics

Indicate respondent: ( ) 1-consumer ( ) 2-other

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Core Indicator:The proportion of people who participate in integrated activities in their communities

Proportion of people who exercise or play sports

Community Inclusion

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Integrated community activities…Shopping (grocery, clothes etc.)Errands/appointments (dentist, bank etc.)Leisure activities (museums, library etc.)Go out to eat Attend religious services and other community

meetings Exercise/play sports (local gym, Y)

Community Inclusion

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Things to bear in mind about the Community Inclusion section:

Community Inclusion

Try to rule out segregated activities just for people with developmental disabilities

People go out to do activities rather than having them brought into the home

If the person answers yes, may ask for an example to verify

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34. Do you (does this person) exercise or play sports? (What kind of exercise? (Examples: jogging, swimming, riding bike, etc.)

__2 Yes, in a community setting__1 Yes, gets exercise but in a non-integrated setting__0 No__9 No response, unclear, don’t know

Community Inclusion Question

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Core indicator:The proportion of people who make choices about important life decisions

The proportion of people reporting they chose what to buy with their own spending money

Choices

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People make choices about… Where they live Who they live with Staff at their home/work Daily schedule Free time Work Spending money Case manager/service coordinator

Choices

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Things to bear in mind about the choices section:

How involved is the person in making decisions

Code “2” if person really made the decision and/or made choices with spouse/partner

Code “1” if had some input

Be careful about “NA” – should avoid using for “not allowed” or “not capable”

Choices

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37. Did you choose (or pick) the people you live with (or did you choose to live by yourself)? (Did anyone ask you who you’d like to live with? Were you given choices, did you get to interview people?)

PS-6 Did you choose to live with __________________ ? (Other respondent – Did this person choose any of the people s/he

lives with? Or: Did this person choose to live alone?)

Choice Question

__8 NOT APPLICABLE – lives with family__2 Yes, chose people s/he lives with, or chose to live alone__1 Chose some people or had some input__0 No, someone else chose__9 Don’t know, no response, unclear response

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Core Indicator:The proportion of people who report that their basic rights are respected by others

The proportion of people who have attended self-advocacy group or other groups that address rights

Rights

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People exercise their rights… Mail Visit with friends alone Use of the phone Self-advocacy

Rights

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46. Do people read your mail without asking you first?

(Other respondent – Does anyone read this person’s mail without permission?)

Rights Question

__8 NOT APPLICABLE - does not get mail__2 [Yes] – mail is read without permission __0 [No] – person reads own mail or others read with permission__9 Don’t know, no response, unclear response

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48. Are you allowed to use the phone when you want to?

If person is unable to use the phone or doesn’t have a phone/TTY, code as “NOT APPLICABLE.”

(Other respondent – is this person allowed to use the phone when s/he wants to?)

Rights Question

__8 NOT APPLICABLE - doesn’t have phone/TTY or unable to use phone__2 Yes, can use anytime, either independently or with assistance, has own phone, or uses email__0 There are rules/restrictions on use of phone __9 Don’t know, no response, unclear response

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Core Indicator:The rate at which people report the “needed” services were not available

Access

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50. Do you get the services you need?

We are asking about services and supports, such as: transportation, job coaching or job development, taking a class, getting medical or dental care, counseling services, finding housing, meeting people, relationship issues, communication technology, environmental modifications, information about benefits or insurance, community involvement, etc.

(Other respondent – Does this person get the services and supports

s/he needs?)

Access

__2 Yes__1 Sometimes, or doesn’t get enough of the services needed__0 No__9 Don’t know, no response, unclear response

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Indicate who you interviewed

for Section II.

Your opinion matters!!!!!

Fill out the “interviewer feedback sheet”

Survey Conclusion Tasks