Individuals With ID/DD
Who Communicate
Nonverbally
Sarah Taub NCI Webinar Series:
January 28th, 2014
Agenda
• Mary Lee Fay, NASDDDS: Intro to NCI
• Josh Engler and Dorothy Hiersteiner, HSRI: What Do NCI Data
Reveal About Individuals With Intellectual and
Developmental Disabilities Who Communicate Nonverbally?
• Celia Feinstein, Temple University- Pennsylvania’s Best
Practices on Surveying Individuals Who are Nonverbal
• Jossie Torres and Sandi Geer, Connecticut DDSEveryone Has a Voice: Experiences as Advocate Interviewers
Surveying Individuals Who are Nonverbal
National Core Indicators (NCI)
WHAT IS
NATIONAL CORE INDICATORS (NCI)?
• Multi-state collaboration of state DD agencies
• Measures performance of public systems for people
with intellectual and developmental disabilities
• Assesses performance in several areas, including:
employment, community inclusion, choice, rights, and
health and safety
• Launched in 1997 in 13 participating states
• Supported by participating states
• NASDDDS – HSRI Collaboration
National Core Indicators (NCI)
NCI State Participation 2013-14
MN
OR
CA*
ME
NH
WA
SD
UT
AZ
MA
WI
IL
CO
KS
OK
NM
OH*
IN
PA
NJ
VA
DE
MD
Wash DC
KY
MO
NC
TN
SC
AR
MS
TX
NY
MI
AL
GA
LA
FL
39 states, the
District of
Columbia and 22
sub-state regions
HI
State contract awarded in 2013-14 through AIDD
funding
CA*- Includes 21 Regional Centers
OH*- Also includes the Mid-East Ohio Regional Council
WHAT IS NCI?
• Adult Consumer Survey
 In-person conversation with a sample of adults receiving
services to gather information about their experiences
 Keyed to important person-centered outcomes that measure
system-level indicators related to: employment, choice,
relationships, case management, inclusion, health, etc.
• Adult Family, Child Family, and Family/Guardian Surveys
Mail surveys – separate sample from Adult Consumer
Survey
• Other NCI state level data: Mortality, Staff Stability
National Core Indicators (NCI)
What Do NCI Data Show Us About Respondents
Who Communicate Verbally & Those Who
Communicate Nonverbally?
Agenda
• Data source
• Methods, Measures and Sample
• Findings
• Limitations
• Policy Implications
National Core Indicators (NCI)
Data Source:
Adult Consumer Survey
• Standardized, face-to-face interview with a sample
of individuals receiving services
 Background Information
 Section I (no proxies allowed)
 Section II (proxies allowed)
• No pre-screening procedures  states don’t filter
anyone out of the sample.
• Conducted with adults only (18 and over) receiving
at least one service in addition to case management
• Section I and Section II together take 50 minutes (on
average)
National Core Indicators (NCI)
Methods, Measures and Sample:
• 2011-2012 data collection cycle
• Background Information section: demographics,
residence, health, and employment information.
Generally collected from records by case managers.
• 19 states, one regional council
(AL, AR, AZ, CT, GA, HI, IL, KY, LA, MA, ME, MI, MO, NC, NJ,
NY, OH, PA, SC and the Mid-East Ohio Regional Council)
• Total N: 12,236 individuals
National Core Indicators (NCI)
Methods, Measures and Sample:
• Source: Background Section
 What is this person’s primary means of expression?
•
•
•
•
•
•
__ 1
__ 2
__ 3
__ 4
__ 5
__ 6
Spoken
Gestures/body language
Sign language or finger spelling
Communication aid/device
Other
Don’t know
• Included in sample only those cases for which a response
to this question was provided
 Final sample size: 12,041 Individuals
• Items combined to create: Verbal variable
 Communicate verbally
 Communicate nonverbally
National Core Indicators (NCI)
Nonverbal Respondents to the ACS
• Sec. I of the ACS  ONLY individual receiving services
• Section II of ACS  proxy allowed
100%
90%
80%
70%
60%
50%
40%
30%
20%
10%
0%
86%
28%
Was able to complete Section I
National Core Indicators (NCI)
Nonverbal
Verbal
85%
33%
Answered Section II questions without proxy
FINDINGS
For the purpose of this webinar, only group differences that were significant at
the p<.01 level are reported.
KEEP IN MIND: These analyses do not control for other factors that may influence
results.
•
•
For example, differences in outcomes may be influenced by differences in demographic
and personal characteristics such as:
• State, age, socio-economic status, gender, level of disability, mobility level, etc.
Need for additional research on this topic.
National Core Indicators (NCI)
Sample
Primary means of
communication
Communicate verbally
Percent of total
76 %
Communicate nonverbally
24%
Total (N=12,041)
100.0%
Of those who communicate nonverbally……
6%
4% 7%
83%
Gestures/body
language
Sign
language/finger
spelling
Communication
aid/device
Other
National Core Indicators (NCI)
Demographics:
Percentage of Respondents of Indicated Race/Ethnicity who
Communicate Verbally
100%
90%
80%
70%
78%
78%
74%
74%
72%
62%
56%
60%
50%
40%
30%
20%
10%
0%
American Indian Asian (N=274)
or Alaska Native
(N=99)
National Core Indicators (NCI)
Black or African Pacific Islander White (N=8655) Other race not
American
(N=82)
listed (N=336)
(N=2280)
Hispanic
(N=517)
Demographics:
Level of Disability
100%
No ID/DD Label
90%
Mild ID/DD
80%
Moderate ID/DD
70%
Severe ID/DD
60%
47%
50%
40%
26%
20%
0%
Unspecified level
of ID/DD
ID/DD level
unknown
33%
30%
10%
Profound ID/DD
46%
14%
1%
6%
10%
4% 2%
Nonverbal
National Core Indicators (NCI)
3%
3% 3% 3%
Verbal
Demographics:
Additional Diagnoses
100%
90%
80%
70%
60%
50%
38%
40%
30% 21%
20%
10%
0%
Nonverbal
Verbal
40%
18%
10%
National Core Indicators (NCI)
25%
11%
20%
13%
5%
10%
4%
8%11%
0%1%
17%
8%
Demographics:
Mobility Level
100%
90%
83%
Nonverbal
80%
Verbal
70%
60%
55%
50%
40%
28%
30%
17%
20%
10%
13%
3%
0%
Moves self around environment Moves self around environment Non-ambulatory, always needs
without aids
with aids or uses wheelchair
assistance
independently
National Core Indicators (NCI)
Demographics:
Amount of Staff Support
100%
90%
80%
70%
60%
50%
Nonverbal
70%
Verbal
52%
40%
30%
21%
20%
14% 12%
10%
6%
12%
2% 4%
9%
0%
24-hour on-site
support or
supervision
National Core Indicators (NCI)
Daily on-site
support
Scheduled, less
frequent than daily
support
As needed
visitation and
phone contact
None of the above
Health:
Reported Health Status
Nonverbal
100%
Verbal
90%
80%
70%
62%
60%
54%
50%
40%
30%
42%
31%
20%
7%
10%
4%
0%
Excellent or Very Good
National Core Indicators (NCI)
Fairly Good
Poor
Health:
100%
90%
93%
90%
Verbal
80%
70%
60%
50%
40%
30%
20%
10%
0%
Had a routine physical exam in the past year
National Core Indicators (NCI)
Nonverbal
Home:
Type Of Residence
100%
90%
Nonverbal
80%
Verbal
70%
60%
50%
42%
40%
37%
35%
31%
30%
20%
10%
0%
15%
12%
4%
2%
Institution
Community-based
residence
National Core Indicators (NCI)
Independent
home/apt
6% 6%
Parents'/relatives' Foster care/host
home
home
5% 5%
Other
Home:
Satisfaction with Residence
100%
90%
95%
93%
90%
Nonverbal
88%
80%
Verbal
*= Question
comes from
Section I of the
ACS
70%
60%
50%
40%
27%
30%
20%
20%
10%
0%
Likes where lives*
National Core Indicators (NCI)
Would like to live
somewhere else*
Likes neighborhood*
Work/Day Activity:
Work/Day Activity (In Past Two Weeks)
100%
Nonverbal
Verbal
90%
80%
70%
59%
60%
46%
50%
40%
32%
30%
17%
20%
10%
18%
22%
11%
2%
0%
Paid community job
National Core Indicators (NCI)
Unpaid community
activity
Paid facility-based work Unpaid facility-based
activity
Safety:
100%
Nonverbal
90%
Verbal
80%
70%
60%
50%
40%
30%
20%
10%
10%
4%
8%
5%
8%
14%
4%
5%
0%
Afraid at home most of Afraid in neighborhood
the time*
most of the time*
*= Question comes from Section I of the ACS
National Core Indicators (NCI)
Afraid at work/day
program most of the
time*
If you ever feel afraid,
there isn't anyone to
whom you can go for
help*
Relationships:
100%
90%
84%
80%
72%
70%
60%
76%
65%
Nonverbal
Verbal
68%
55%
50%
40%
34%
40%
30%
20%
10%
0%
Has friends*
Has a best friend*
*= Question comes from Section I of the ACS
National Core Indicators (NCI)
Able to go on dates Feels lonely at least half
without restrictions (or
of the time*
married)*
Community Participation:
Percentage of Respondents Who Participated in Selected
Community Activities in the Past Month
100%
90%
80%
91%
81%
87%
86%
77%
68%
70%
73%
Nonverbal
73%
Verbal
59%
60%
50%
50%
51%
40%
40%
48%
35%
30%
20%
10%
0%
Shopping**
Errands**
Entertainment**
Eating out**
Religious
activity**
** = Question comes from Section II of the ACS
^ = Percentage indicates number of respondents who went on vacation in the past year
National Core Indicators (NCI)
Exercise**
Vacation ^ **
Choices:
100%
95%
87%
90%
70%
60%
57%
50%
30%
20%
65%
67%
58%
47%
43%
40%
Non-Verbal
Verbal
76%
80%
60%
94%
34%
21%
17%
10%
0%
Chose
Home**
Chose
Choosing
Choosing
roommates** schedule** what to do in
freetime**
** = Question comes from Section II of the ACS
National Core Indicators (NCI)
Chose day
Choosing
Chose case
activity** what to buy** manager**
Rights and Respect:
100%
90%
81%
80%
87%
92%
Nonverbal
Verbal
74%
70%
60%
50%
40%
28%
30%
20%
19%
17%
12%
10%
0%
Mail is read without
permission**
Can be alone with
guests**
** = Question comes from Section II of the ACS
National Core Indicators (NCI)
Can use phone or
internet without
restrictions**
Has participated in a
self-advocacy activity**
Why?
• Differences in the demographics and valued outcomes








Relationships,
Home,
Rights & respect,
Inclusion,
Personal safety,
Choice,
Health and
Employment
• Help inform state officials, providers and advocates to forge
future policies and supports for individuals who do not use
words to speak.
 What policy implications can you think of?
National Core Indicators (NCI)
Contacts
• HSRI
 Josh Engler: jengler@hsri.org
 Dorothy Hiersteiner: dhiersteiner@hsri.org
• NASDDDS
 Mary Lee Fay: MLFay@nasddds.org
• NCI website: www.nationalcoreindicators.org
National Core Indicators (NCI)
Celia Feinstein, Temple University
Pennsylvania’s Best Practices on Surveying
Individuals Who are Nonverbal
National Core Indicators (NCI)
What To Do if a Person has
Difficulty with Communication

Meet with the person.

Spend time with the person, observing
how the person interacts (or doesn’t
interact) with other people. (handout)

Find out who knows the person best.
31
What To Do if a Person has
Difficulty with Communication

Enlist the assistance of the people most
familiar with the person and his or her
style of communication in the interview
process.

Ask the person for suggestions and
direction.

Interview as many people who are very
close to the person as possible.
32
What PA is Doing Regarding
People Who Do Not
Communicate Using Words
 Look
at IM4Q/NCI data
 Picture response formats
 Communication pilots
 PAC Quality Management
Committee
33
Language/Behavior
 Cultural
Sensitivity/Cultural
Communication
 Use
People First Language
(handout)
34
NCI Surveys
CT Presenters: Jossie Torres
and Sandi Geer
Jossie Torres, a Self Advocate Coordinator for the Department
of Development Services. She has been employed for nine
years has been implementing NCI Surveys when CT
participated.
Sandi Geer, the Self Determination/Employment Specialist for
the Department of Developmental Services. She has been
employed with the state for 29 years. She has been part of the
NCI survey team for the past 3 years.


CT has 10 Self Advocate Coordinators (SACs)
who are state employees
All SACs are trained and have been asking the
NCI questions for several years

Statewide Training
◦ All participated in the trainings held statewide to
provide overview of NCI

Regional Training
◦ All participated in the Regional training for all NCI
Surveyors

SAC Training
◦ Used the training from


Everyone should have the opportunity to be
surveyed if THEY choose to be – even if they
have difficulty communicating
Everyone should be given the opportunity to
have a VOICE and be part of the survey




Be prepared that not everyone will have a way
to communicate on the phone.
Family or staff may be the one on the other
end of the phone letting you know that the
person you want to speak to is non-verbal
Be Positive and reassuring to the person the
importance of everyone’s voice
Ask about their form of communication. How
do they know what they like or dislike?


Promote the importance of each person’s
voice.
Provide information about the survey - The
First section of the survey is the individual’s
response only. BUT surveyor will use any form
of communication the person is comfortable
using. Communication Board, Pictures, IPAD,
Speech Talkers, etc.


The second section of the survey can be done
with their support person
Encourage the person on the phone to be
part of the survey and assist the individual to
have a VOICE


Ask the family/support person where and
when the individual can meet and where they
would be most comfortable. Remind them –
they are welcome to be present during the
first part of the survey and assist with the
second part of the survey.
The day before the meeting, call to remind
the family/support person of the meeting by
stating your name, and the date, time and
place of meeting.




Take your time when you arrive to do your survey.
Make sure you are both comfortable before you
begin.
Make sure to bring materials to try to get across the
survey questions in a different way so they have
every opportunity to understand the questions.
Introduce yourself and thank the person for meeting
with you. Ask if the person has any questions for
you.
Ask all the questions, but remind the person it is ok
not to answer questions and that there are no right
or wrong answers.

How do I have the conversation with a person
who can not communicate verbally to get the
answers to the NCI questions?
◦ Talk to the person as you would anyone else.
◦ Use any form of accommodation allowing the
person to feel safe and comfortable in talking with
you.
◦ Provide alternative ways to ask and answer
questions

Be aware how the person responds to you
and the questions.
◦ Eye contact
◦ Facial expressions
◦ Body language


Take your time with the questions. Give the
person time to answer the questions at their
own pace.
Remember to use eye contact when asking
the questions and waiting for their response
◦ This indicates you value what they have to say

Consider using visual communication tools to
assist you in the Survey
◦ Using the colors Red (NO) and Green (YES) to assist
in answering
◦ Printed faces with expressions
◦ Pictures of places, people, employment options and
other pictures that relate to the NCI questions.
Happy/Yes
Sad/NO
I’m Tired and
want to STOP!
Home
Country
Apartment
City
Post Secondary
Education
Want a new
job!
Helping Jobs
Desk Job


After asking the printed questions, the
surveyor can follow up with asking the
person is this a Yes or No and use the visual
tools to assist them
Be neutral; do not lead the person or give
your opinion; for instance, avoid asking “you
can choose your daily schedule, right?” The
surveyor should not look at or point to
specific pictures or other forms of
communication as not to influence the
person’s response.



Use familiar names and locations whenever
possible.
Speak clearly and repeat questions or use
suggested rephrasing (in the survey) so the
person is able to understand.
Be Respectful. Give the person your full
attention. Make sure the person you are
interviewing knows they are the most
important person in the room, to you as the
Surveyor. REMEMBER EYE CONTACT!








Empowering
Informative
Eye Opening
Frustrating
Challenging
Fun
Important
Useful


Surveyors Provide Self Advocacy information
Refer them to the CT DDS “Consumer Corner”
website.
http://www.dds.ct.gov/consumercorner/site/default.asp