Individuals With ID/DD Who Communicate Nonverbally

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


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

AZ OK

KY

AL

NC

PA

MA

TX

AR GA

NM

NJ

MO

NH

OH*IL

LA

NY

Wash DC

FL

CA*

SDOR MN

UT CO 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


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


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


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)


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


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


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


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.


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……


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


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


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


Demographics:

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

55%

17%

28%

83%

13%

3%

Mobility Level

Nonverbal

Verbal


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


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


Health:

Had a routine physical exam in the past year0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100% 93% 90% Nonverbal

Verbal


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


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


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


Safety:

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

10% 8% 8%14%

4% 5% 4% 5%

Nonverbal

Verbal



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



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


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


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


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?


Contacts

• HSRI Josh Engler: [email protected] Dorothy Hiersteiner: [email protected]

• NASDDDS Mary Lee Fay: [email protected]

• NCI website: www.nationalcoreindicators.org

mailto:[email protected]



http://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)

Everyone Has A Voice

NCI Surveys

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


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.


Ideas for Communication

Happy/Yes Sad/NO I’m Tired and want to

STOP!

Ideas for Home Pictures. . .

Home

Apartment

Country

City

Ideas for Pictures - Employment

Post Secondary Education

Want a new job! Desk Job

Helping Jobs

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

Empowering Informative Eye Opening Frustrating Challenging Fun Important Useful

NCIs ARE. . .

Surveyors Provide Self Advocacy information

Refer them to the CT DDS “Consumer Corner” website. http://www.dds.ct.gov/consumercorner/site/default.asp

CT Resources

Documents

Individuals With ID/DD Who Communicate Nonverbally