1. Individuals With ID/DD Who Communicate Nonverbally Sarah Taub NCI Webinar Series: January 28 th, 2014

2. 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)

3. 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)

4. 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* SD OR MN UT CO KS MS TN SC WI MI IN VAVA DE MD State contract awarded in 2013-14 through AIDD funding CA*- Includes 21 Regional Centers OH*- Also includes the Mid-East Ohio Regional Council 39 states, the District of Columbia and 22 sub-state regions ME

5. 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)

6. 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)

7. 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)

8. 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)

9. Methods, Measures and Sample: Source: Background Section  What is this person’s primary means of expression? __ 1Spoken __ 2Gestures/body language __ 3Sign language or finger spelling __ 4Communication aid/device __ 5Other __ 6Don’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)

10. Nonverbal Respondents to the ACS Sec. I of the ACS  ONLY individual receiving services Section II of ACS  proxy allowed National Core Indicators (NCI)

11. FINDINGS National Core Indicators (NCI) 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.

12. Sample Primary means of communication Percent of total Communicate verbally76 % Communicate nonverbally24% Total (N=12,041)100.0% National Core Indicators (NCI) Of those who communicate nonverbally……

13. Demographics: National Core Indicators (NCI)

14. Demographics: National Core Indicators (NCI)

15. Demographics: National Core Indicators (NCI)

16. Demographics: National Core Indicators (NCI)

17. Demographics: National Core Indicators (NCI)

18. Health: National Core Indicators (NCI)

19. Health: National Core Indicators (NCI)

20. Home: National Core Indicators (NCI)

21. Home: National Core Indicators (NCI)

22. Work/Day Activity: National Core Indicators (NCI)

23. Safety: National Core Indicators (NCI) *= Question comes from Section I of the ACS

24. Relationships: National Core Indicators (NCI) *= Question comes from Section I of the ACS

25. Community Participation: National Core Indicators (NCI)

26. Choices: National Core Indicators (NCI) ** = Question comes from Section II of the ACS

27. Rights and Respect: National Core Indicators (NCI)

28. 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)

29. Contacts HSRI  Josh Engler: jengler@hsri.orgjengler@hsri.org  Dorothy Hiersteiner: dhiersteiner@hsri.orgdhiersteiner@hsri.org NASDDDS  Mary Lee Fay: MLFay@nasddds.orgMLFay@nasddds.org NCI website: www.nationalcoreindicators.orgwww.nationalcoreindicators.org National Core Indicators (NCI)

30. Celia Feinstein, Temple University Pennsylvania’s Best Practices on Surveying Individuals Who are Nonverbal National Core Indicators (NCI)

31. 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. 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. 33 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

34. 34 Language/Behavior Cultural Sensitivity/Cultural Communication Use People First Language (handout)

35. NCI Surveys

36. 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.

37.  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

38.  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

39.  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

40.  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?

41.  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.

42.  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

43.  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.

44.  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.

45.  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

46.  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

47.  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.

48. Happy/Yes Sad/NO I’m Tired and want to STOP!

49. Home Apartment Country City

50. Post Secondary Education Want a new job! Desk Job Helping Jobs

51.  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.

52.  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!

53.  Empowering  Informative  Eye Opening  Frustrating  Challenging  Fun  Important  Useful

54.  Surveyors Provide Self Advocacy information  Refer them to the CT DDS “Consumer Corner” website. http://www.dds.ct.gov/consumercorner/site/default.asp