individuals with id/dd who communicate nonverbally sarah taub nci webinar series: january 28 th,...
Post on 17-Dec-2015
215 Views
Preview:
TRANSCRIPT
Individuals With ID/DD Who Communicate Nonverbally
Sarah Taub NCI Webinar Series: January 28th, 2014
National Core Indicators (NCI)
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 DDS- Everyone 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
NCI State Participation 2013-14
HI
WA
AZOK
KY
AL
NC
PA
MA
TX
AR
GANM
NJ
MO
NH
OH*IL
LA
NY
Wash DC
FL
CA*
SDOR
MN
UTCO KS
MS
TNSC
WIMI
INVA
DEMD
State contract awarded in 2013-14 through AIDD fundingCA*- Includes 21 Regional CentersOH*- Also includes the Mid-East Ohio Regional Council
39 states, the District of Columbia and 22 sub-state regions
ME
National Core Indicators (NCI)
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 Spoken• __ 2 Gestures/body language• __ 3 Sign language or finger spelling• __ 4 Communication aid/device• __ 5 Other• __ 6 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
Was able to complete Section I Answered Section II questions without proxy0%
10%20%30%40%50%60%70%80%90%
100%
28%33%
86% 85%Nonverbal Verbal
National Core Indicators (NCI)
FINDINGS
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.
For the purpose of this webinar, only group differences that were significant at the p<.01 level are reported.
National Core Indicators (NCI)
SamplePrimary means of communication
Percent of total
Communicate verbally 76 %
Communicate nonverbally 24%
Total (N=12,041) 100.0%
83%
6%4% 7%
Gestures/body language
Sign language/fin-ger spellingCommunication aid/device
Other
Of those who communicate nonverbally……
National Core Indicators (NCI)
Demographics:
American Indian or Alaska Native
(N=99)
Asian (N=274) Black or African American (N=2280)
Pacific Islander (N=82)
White (N=8655) Other race not listed (N=336)
Hispanic (N=517)
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
78%
62%
74%
56%
78%74% 72%
Percentage of Respondents of Indicated Race/Ethnicity who Communicate Verbally
National Core Indicators (NCI)
Demographics:
Nonverbal Verbal0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
1% 3%6%
46%
14%
33%
26%
10%
47%
3%4% 3%2% 3%
Level of Disability
No ID/DD Label
Mild ID/DD
Moderate ID/DD
Severe ID/DD
Profound ID/DD
Unspecified level of ID/DD
ID/DD level unknown
National Core Indicators (NCI)
Demographics:
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
21% 18%
25%
40%
13%10% 8%
0%
8%
38%
10% 11%
20%
5% 4%
11%
1%
17%
Additional DiagnosesNonverbal
Verbal
National Core Indicators (NCI)
Demographics:
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
55%
17%
28%
83%
13%
3%
Mobility Level
Nonverbal
Verbal
National Core Indicators (NCI)
Demographics:
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
70%
14%6%
2%9%
52%
12% 12%4%
21%
Amount of Staff Support
Nonverbal
Verbal
National Core Indicators (NCI)
Health:
Excellent or Very Good Fairly Good Poor0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
31%
62%
7%
42%
54%
4%
Reported Health Status Nonverbal
Verbal
National Core Indicators (NCI)
Health:
Had a routine physical exam in the past year0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100% 93% 90% Nonverbal
Verbal
National Core Indicators (NCI)
Home:
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
12%
42%
4%
31%
6% 5%2%
37%
15%
35%
6% 5%
Type Of Residence
Nonverbal
Verbal
National Core Indicators (NCI)
Home:
Likes where lives* Would like to live somewhere else*
Likes neighborhood*0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100% 95%
20%
93%90%
27%
88%
Satisfaction with ResidenceNonverbal
Verbal
*= Question comes from Section I of the ACS
National Core Indicators (NCI)
Work/Day Activity:
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
2%
18%11%
59%
17%22%
32%
46%
Work/Day Activity (In Past Two Weeks) Nonverbal
Verbal
National Core Indicators (NCI)
Safety:
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
10% 8% 8%14%
4% 5% 4% 5%
Nonverbal
Verbal
*= Question comes from Section I of the ACS
National Core Indicators (NCI)
Relationships:
Has friends* Has a best friend* Able to go on dates without restrictions
(or married)*
Feels lonely at least half of the time*
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
55%
65%68%
34%
72%76%
84%
40%
Nonverbal
Verbal
*= Question comes from Section I of the ACS
National Core Indicators (NCI)
Community Participation:
Shopping** Errands** Entertainment** Eating out** Religious activity** Exercise** Vacation ^ **0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
81%77%
68%73%
40%
51%
35%
91%86%
73%
87%
50%59%
48%
Percentage of Respondents Who Participated in Selected Community Activities in the Past Month
Nonverbal
Verbal
** = 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)
Choices:
Chose Home**
Chose roommates*
*
Choosing schedule**
Choosing what to do in
freetime**
Chose day activity**
Choosing what to buy**
Chose case manager**
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
21%17%
60%
76%
34%
67%
47%
57%
43%
87%
95%
65%
94%
58%
Non-Verbal
Verbal
** = Question comes from Section II of the ACS
National Core Indicators (NCI)
Rights and Respect:
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
19%
74%
87%
17%12%
81%
92%
28%
Nonverbal
Verbal
** = Question comes from Section II of the ACS
National Core Indicators (NCI)
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
Celia Feinstein, Temple University
Pennsylvania’s Best Practices on Surveying Individuals Who are Nonverbal
31
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.
32
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.
33
What PA is Doing Regarding People Who Do Not
Communicate Using Words
Look at IM4Q/NCI dataPicture response formatsCommunication pilotsPAC Quality Management
Committee
34
Language/Behavior
Cultural Sensitivity/Cultural Communication
Use People First Language (handout)
CT Presenters: Jossie Torres and Sandi GeerJossie 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
CT - Finding Everyone’s VOICE
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
Training To Get The Answers. . .
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
Getting Started . . .
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?
First contact. . .
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.
First Contact. . .
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
First Contact. . .
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.
Arranging the NCI 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.
During the Meeting
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
Meeting to do the Survey. . .
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
Meeting to do the Survey. . .
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.
Meeting to do the Survey. . .
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.
During the Meeting
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!
During the Meeting
top related