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Consumer Survey
Adult Version
Copyright ©2003 by the National Association of State Directors of Developmental Disabilities Services and Human Services Research Institute. All rights reserved. Permission to use or reproduce portions of this document is granted for purposes of the National Core Indicators only. For other purposes, permission must be requested in writing from the authors. Revised 4/14/2005. This document has been modified by Washington State for use during quality assurance visits with adult HCBS Waiver participants.
NCI Consumer Survey © 2003 NASDDDS and HSRI
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Description of NCI:
This survey was developed in conjunction with the National Core Indicators, an effort that began in 1997 and is co-sponsored by the National Association of State Directors of Developmental Disabilities Services (NASDDDS) and the Human Services Research Institute (HSRI). The purpose of NCI is to identify and measure core indicators of performance of state developmental disabilities service systems. Currently, over twenty states participate in NCI. This survey is intended to measure a subset of the performance indicators identified by the NCI Steering Committee, which is made up of representatives from the participating states.
Organization of Survey:
The survey consists of five sections.
² The Pre-Survey Form requests information that may be used by the interviewer to schedule and conduct the interviews.
² The Background Information section requests information that will be analyzed in conjunction with the interview responses. This information must be collected for all individuals surveyed. If you are unable to collect this information from DDD records, please collect it from a significant other or staff member.
² Section I contains questions that may only be answered by face-to-face interviews with the person receiving services and supports. These are subjective, "satisfaction" related questions that may not be answered by anyone else.
² Section II contains questions that may be answered by someone who knows the person well, such as a family member, friend, staff person, guardian or advocate. Interviews with other respondents may be conducted either in person or over the phone, but since these are quality assurance visits, every effort should be made to observe the consumer’s home.
² The Interviewer Feedback Sheet is the last page of the survey. Please fill out one sheet for each interview you complete.
NCI Consumer Survey © 2003 NASDDDS and HSRI
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Pre-Survey Form
Pre-Survey Form
The Pre-Survey Form is intended to provide interviewers with the information they will need to schedule and conduct interviews. This information can be obtained from the CCDB, the assigned case manager, or a telephone call to the primary contact or provider.
It is strongly suggested that as many Pre-Survey items as possible be filled out and reviewed before starting the interview. Experience has shown that using familiar names and terms helps the respondent understand the questions being asked and facilitates the interview process. Interviewers can use the Pre-Survey items to fill in blanks in Sections I and II of the survey form where indicated with a symbol. Doing this prior to the interview helps the conversation flow more smoothly.
None of the Pre-Survey information is submitted to HSRI.
A. Person completing this form:
Name: _________________________________________________________
Date: _____ /_____ /__________
B. Person to be interviewed:
Consumer Name: _________________________________________________________
Gender: _____ Male _____ Female Age: _________
Phone: ___________ - ______________________________
Home address: ________________________________________________________________
Street
________________________________ ________________ ______________
City State Zip
C. Guardian information, if applicable:
Guardian Name: _________________________________________________________
Relationship: __________________________________________
Phone: ___________ - ______________________________
Home address: ________________________________________________________________
Street
________________________________ ________________ ______________
City State Zip
E-mail: _________________________________________
PS-1. Contact… Who should the interviewer call to arrange an interview with this person (consumer, parent/guardian, service coordinator, day or residential program staff, etc.)?
Name: __________________________ Relationship: ____________________
Daytime Phone: __________________ Evening Phone : ____________________
Pager: __________________________ Cell Phone: ________________________
E-mail address: __________________
Note… We would like to talk with persons alone, when appropriate. Some persons may feel uncomfortable with strangers, may have community protection issues, or may have medical or behavioral issues that require them to be under constant supervision by a trained caregiver.
Do you recommend that a caregiver be present while this person is interviewed?
___ Yes ___ No
PS-2. Communication needs… Does this person have any special communication needs? (Examples: primary language other than English, sign language, communication board.) Please explain what arrangements are needed for the interview.
_______________________________________________________________________
_______________________________________________________________________
PS-3. Case manager/service coordinator… What is the name and phone number of this person's case manager/service coordinator?
Name: _____________________________ Phone: _______ /___________________
Pager: __________________________ Cell Phone: ________________________
E-mail address: __________________
PS-3a. Approximately how many times during the past year has the case manager/service coordinator had contact (in person or by telephone) with this client or his/her guardian/family members? _______ times
PS-4. Advocate… If this person has someone who helps represent him/her at planning meetings and in making important decisions, please provide the advocate’s name and relationship. (Note: this may include staff, family, friends, or guardians who are involved in the person's life.)
Name: __________________________ Relationship: __________________________
PS-5. Other Interviewees… If this person is unable or unwilling to complete Section II of the survey, please indicate the name(s) and number(s) of others who know the person well and could respond on his/her behalf.
Name: __________________________ Relationship: _______________________
Daytime Phone: __________________ Evening Phone : _____________________
Cell Phone: ______________________ E-mail address: _____________________
Name: __________________________ Relationship: _______________________
Daytime Phone: __________________ Evening Phone : _____________________
Cell Phone: ______________________ E-mail address: _____________________
PS-6. Living Arrangement… Please indicate who this person lives with.
___ lives alone ___ lives with parent/relatives
___ lives in large residential care facility ___ lives in shared house or apartment
If applicable, provide first names of roommates or housemates: ________________________________________________________________________
PS-7. Support Staff in the Home and During the Day… If there are any people who are paid to provide supports in this person’s home, please indicate their first names. If there are several workers, please list the primary staff who spend the most time with this person. Also indicate the first names of any day and/or job support staff.
Home Support Staff: ____________________________________________________
Day Support Staff/Job Support Staff/Coach: _________________________________
PS-7a. Does this client receive Medicaid Personal Care, Respite, Chore, Companion Home or other in-home support services?
_____ Yes _____ No
PS-8. Job/Day Activities… If applicable, please indicate what this person calls his/her job, school or day activity program.
Place of work: __________________________________________________________
School:_________________________ Day program:___________________________
PS-9. Self-Advocacy Organization… What self-advocacy groups are active and well-known in the person's area? (Examples: People First, Self-Advocates Becoming Empowered, Speaking for Ourselves.)
________________________________________________________________________
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Background Information
BACKGROUND INFORMATION
BI- Survey Code: ___ ___ ___ ___ ___ ___
(DDD Client ID number)
BI- Region or County: {if applicable}_________________________________
The questions in this section are best answered by reference to agency records or computer system reference (dependent upon availability by state). It is suggested that this section be completed along with the pre-survey form by the appropriate agency staff member, such as a case manager/service coordinator.
IMPORTANT: BI-item numbers that are highlighted represent critical items for data analysis purposes. Please make every effort to provide this information.
Please indicate who provided this information: (check all that apply)
__1 Person receiving services
__2 Advocate, Parent, Guardian, Personal Representative, Relative
__3 Staff who provides supports where person lives
__4 Staff who provides supports at a day or other service location
__5 Case Manager, service coordinator, social worker
__6 Other person
__7 State data system
PERSONAL
BI- Date of birth: (mm/dd/yyyy) ___ /___ /_______
BI- Gender: __ 1 male
__ 2 female
BI- What is this person's race? (check ONE or MORE races to indicate what this person considers himself/herself to be)
__ 1 American Indian or Alaska Native
__ 2 Asian (Asian Indian, Chinese, Filipino, Japanese, Korean, Vietnamese or Other
Asian)
__ 3 Black or African American
__ 4 Pacific Islander (Native Hawaiian, Guamanian or Chamorro, Samoan, or Other
Pacific Islander)
__ 5 White
__ 6 Other race not listed
__ 7 Don’t know
BI- Is this person Spanish/Hispanic/Latino?
__ 1 No, not Spanish/Hispanic/Latino
__ 2 Yes (Mexican, Mexican American, Chicano, Puerto Rican, Cuban, or Other
Spanish/Hispanic/Latino)
__ 3 Don’t know
BI- Does this person have a legal guardian or conservator appointed?
(check one)
__ 1 No, person is independent of guardianship (legally competent or presumed
competent)
__ 2 Yes, person has private guardian or conservator (including parent/relative or non-relative)
__ 3 Yes, person has public guardian or conservator (NOT AVAILABLE IN WA STATE)
__ 4 Don’t know
BI- Does this person have a representative payee or financial guardian?
__ 1 No
__ 2 Yes
__ 3 Don’t know
BI- Marital status: (check one)
__ 1 Single, never married
__ 2 Married
__ 3 Single, married in past
__ 4 Don’t know
BI- How is this person currently labeled in his/her records? (check one)
__ 0 Does not have MR label
__ 1 Mild MR
__ 2 Moderate MR
__ 3 Severe MR
__ 4 Profound MR
__ 5 Don’t know or not available in records
BI- What disabilities other than MR are noted in this person’s records? (check all that apply)
__ 1 Mental illness/psychiatric diagnosis (e.g. depression)
__ 2 Autism
__ 3 Cerebral Palsy
__ 4 Brain injury
__ 5 Seizure disorder/neurological problem
__ 6 Chemical dependency
__ 7 Vision impairment
__ 8 Hearing impairment
__ 9 Physical disability
__ 10 Communication disorder
__ 11 Alzheimer’s disease
__ 12 Down Syndrome
__ 13 Prader-Willi syndrome
__ 14 Other disabilities not listed
__ 15 Don’t know or not available in records
BI- What is this person’s primary language? (What language does s/he
understand?)
__ 1 English
__ 2 Other : ___________________________________________
BI- What is this person’s primary means of expression? (check one – most
frequently used)
__ 1 Spoken
__ 2 Gestures/body language
__ 3 Sign language or finger spelling
__ 4 Communication aid/device
__ 5 Other
__ 6 Don’t know
BI- How would you describe this person’s mobility? (check one)
__ 1 Can move self around environment; walks (with or without aids) or uses
wheelchair
__ 2 Non-ambulatory, needs assistance to move around environment
__ 3 Don’t know
BI- How would you describe this person’s vision? (check one)
__ 1 Sees well, with or without corrective lenses
__ 2 Vision problems limit activities, such as reading or travel
__ 3 Limited or no vision (legally blind)
__ 4 Don’t know
BI-15a. Which statement most closely matches the level of support and assistance this person requires? (check one)
__ 1 NONE - can be left unattended. May occasionally show poor judgment, but does not require routine access to a support person.
__ 2 REMOTE - can be left unattended for extended periods of time, but requires access to a support person either via telephone or someone who visits the person, but not daily.
__ 3 MONITORING - can be left unattended for several hours at a time (3 – 4 hrs) to engage in independent activities, but needs access to a support person daily for guidance or personal care assistance.
__ 4 CLOSE PROXIMITY - can be left unattended for short periods of time (1 –2 hrs), provided that the environment is strictly structured and that a support person can respond quickly in an emergency situation.
__ 5 ONSITE - cannot be left unattended. Requires a support person on the property at all times, at least during awake hours.
__ 6 LINE OF SIGHT - cannot be left unattended. Requires a support person within the room at all times during awake hours.
HEALTH
BI- Does this person currently take medications for…
(check one column for each):
don't
no yes know
__ 1 __ 2 __ 3 Mood disorders? [Includes any drug prescribed to elevate or
stabilize mood (reduce mood swings), e.g., to treat depression, mania,
or bipolar disorder.]
__ 1 __ 2 __ 3 Anxiety? [Includes any drug prescribed to treat anxiety disorders
(including obsessive disorders and panic disorders) or to reduce anxiety
symptoms.]
__ 1 __ 2 __ 3 Behavior problems? [Includes any drug prescribed for a
behavior modification purpose (such as a stimulant, sedative, or beta-
blocker), e.g., to treat ADHD, aggression, self-injurious behavior, etc.]
__ 1 __ 2 __ 3 Psychotic disorders? [Includes any drug (e.g., anti-psychotic
or “neuroleptic”) used to treat psychotic disorders such as
schizophrenia or psychotic symptoms such as hallucinations.]
BI- If this person has seizures, how often do they occur? (check one)
__ 0 NOT APPLICABLE -- does not have seizures
__ 1 Less frequently than once/month
__ 2 At least once/month, but not once a week
__ 3 At least once/week, or more frequently
__ 4 Don’t know or not available in records
BI- How often does this person require medical care? (check one) (Medical care refers to care that must be performed or delegated by a nurse or physician. Do not include medication administration.)
__ 1 Less frequently than once/month
__ 2 At least once/month, but not once a week
__ 3 At least once/week, or more frequently
__ 4 Don’t know or not available in records
BI- When was his/her last physical exam? (check one)
__ 1 In the past year
__ 2 Over one year ago
__ 3 Don't know or not available in records
BI- If female, when was her last OB/GYN exam? (check one)
__ 0 NOT APPLICABLE -- male
__ 1 In the past year
__ 2 Over one year ago
__ 3 Has never had an OB/GYN exam
__ 4 Don't know or not available in records
BI- When was his/her last dentist visit? (check one)
__ 1 In the last six months
__ 2 Over six months ago
__ 3 Don't know or not available in records
BI- Is weight a concern for this person? (check one)
__ 1 Yes, person is underweight
__ 2 Yes, person is overweight
__ 3 No
__ 4 Don’t know
BI- Does this person smoke or chew tobacco?
__ 1 No
__ 2 Yes
__ 3 Don’t know
BI- How physically active is this person? (check one)
__ 1 Very physically active
__ 2 Moderately physically active
__ 3 Physically inactive
__ 4 Don’t know
RESIDENCE
BI- How long has this person lived in his/her current home (or with the same caregiver)? Do not count moves with same caregiver.