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Consumer Advisory Council Consumer Advisory Council 3:10 - 3:25 - - PDF document

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2/3/2020 CAC Agenda CAC Agenda 3:00 - 3:10 Welcome and Introductions Jed Morison Welcome everyone around the table Approval of Minutes (4/23/2019) Consumer Advisory Council Consumer Advisory Council 3:10 - 3:25 Nisonger

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SLIDE 1

2/3/2020 1

Consumer Advisory Council Meeting

January 28, 2020

Consumer Advisory Council Meeting

January 28, 2020

MISSION: The mission of The Ohio State University Nisonger Center is to improve the lives of people with developmental disabilities and their families. VISION: To develop and provide the highest quality interdisciplinary care, education, and research to support the inclusion of people with developmental disabilities in all aspects of community life. V

ALUES: The Nisonger Center values are the commitments made by our faculty, staff, and students regarding how we

will carry out our work. Our values include:

  • Person/Family-centered ● Compassion
  • Self-determination
  • Excellence
  • Cultural Competence
  • Innovation
  • Hope

MISSION: The mission of The Ohio State University Nisonger Center is to improve the lives of people with developmental disabilities and their families. VISION: To develop and provide the highest quality interdisciplinary care, education, and research to support the inclusion of people with developmental disabilities in all aspects of community life. V

ALUES: The Nisonger Center values are the commitments made by our faculty, staff, and students regarding how we

will carry out our work. Our values include:

  • Person/Family-centered ● Compassion
  • Self-determination
  • Excellence
  • Cultural Competence
  • Innovation
  • Hope
  • 3:00 - 3:10

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/23/2019)
  • 3:10 - 3:25

Nisonger Center Update Marc J. Tassé

  • Program Presentations

– 3:25 - 3:40 National Core Indicators Annamarie Sigman – 3:40 - 3:55 Next Chapter Book Club Stacie Klein – 3:55 - 4:10 RRTC and the Role of the Disability Christine Brown & Experience Expert Panel (DEEP) Andrew Buck

  • 4:10-4:25

Legislative Update Michael Kirkman

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 28 April 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

  • 3:00 - 3:10

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/23/2019)
  • 3:10 - 3:25

Nisonger Center Update Marc J. Tassé

  • Program Presentations

– 3:25 - 3:40 National Core Indicators Annamarie Sigman – 3:40 - 3:55 Next Chapter Book Club Stacie Klein – 3:55 - 4:10 RRTC and the Role of the Disability Christine Brown & Experience Expert Panel (DEEP) Andrew Buck

  • 4:10-4:25

Legislative Update Michael Kirkman

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 28 April 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda General Information General Information

  • DSACO Dancing with Our Stars 2020

Honoring Nisonger Center! February 1, 2020: 6:00pm > Ohio State Union - Archie Griffin Ballroom

General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.

Theme: “Sports & Play Activities” Submission deadline: March 31, 2020 1st Prize: $500 2nd Prize: $300 3rd Prize: $100

General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events:

– Smart Home Discovery Place "Open House": March 30th, 2020 ~ 4:00 – 7:00pm > McCampbell Hall.

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SLIDE 2

2/3/2020 2 General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events:

– Screening of "Hearts of Glass" & Panel Discussion: April 15th, 2020 ~ 6:00 – 9:00pm > Gateway Film Center.

https://vimeo.com/278406491

Trailer: 2 minutes

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ide e year- ar-round p und produce t uce to a mountain tain t town, , while creating eating m meaningful e ingful emplo ployme ment nt for c communit ity y member mbers w s with d disa sabil biliti ties. es.

a JenTen Production in partnership with Slow Food in the Tetons, a 501(c)(3).

General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events:

Nisonger 2020 Institute May 5th, 2020 9:00am – 12:00pm Ohio State Fawcett Center

General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events:

– TechSummit 2020: June 26th, 2020 ~ 9:00am – 4:00pm > Renaissance Hotel Polaris-Westerville.

General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events:

Charting the LifeCourse Ohio Showcase

August 27th, 2020 9:00am – 3:00pm

Renaissance Hotel Polaris-Westerville

General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events.
  • New Grant Funding:

– Columbus Foundation => $75,000 (Smart Home Discovery Place)

General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events.
  • New Grant Funding.
  • University News:

– Retirement of President Michael Drake – Departure of Dean Craig Kent (COM) – Visit of Chancellor Harold Paz (2/5/2020)

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SLIDE 3

2/3/2020 3 General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events.
  • New Grant Funding.
  • University News.
  • Other News (since our last CAC meeting in October):

– Dr. Solis names "Best Dentist" for the 4th year in a row. – Search for Director of the Dental Program - Update. – 2020 Nisonger Champion Award:

  • … honor an individual who has made significant contributions to the

quality of life for persons with developmental disabilities and their

  • families. The recipient shall not only demonstrate a strong

commitment to providing the skills and resources needed to succeed in the advancement of science, but has also displayed a sincere interest in the well‐being of persons with developmental

  • disabilities. See below and attached for nomination process.
  • Nominations deadline: March 31, 2020.

General Information General Information

  • DSACO Dancing with Our Stars 2020
  • Nisonger Center 2020 In“Sights” Photo Contest.
  • Upcoming events.
  • New Grant Funding.
  • University News.
  • Other News (since our last CAC meeting in October):
  • CAC membership:

– Fill 2 vacant seats for Self-Advocate members on our CAC:

  • 3 candidates

– Pam and Marc's terms on the CAC are ending in April 2020.

  • 3:00 - 3:10

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/23/2019)
  • 3:10 - 3:25

Nisonger Center Update Marc J. Tassé

  • Program Presentations

– 3:25 - 3:40 National Core Indicators Annamarie Sigman – 3:40 - 3:55 Next Chapter Book Club Stacie Klein – 3:55 - 4:10 RRTC and the Role of the Disability Christine Brown & Experience Expert Panel (DEEP) Andrew Buck

  • 4:10-4:25

Legislative Update Michael Kirkman

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 28 April 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

NATIONAL CORE INDICATORS ADULT IN-PERSON SURVEY (NCI)

ANNAMARIE SIGMAN, NCI COORDINATOR, OSU NISONGER CENTER & EMILY FAHERTY, NCI PROGRAM ASSISTANT, OSU NISONGER CENTER

5 THING TO KNOW: NCI

HTTPS://WWW.YOUTUBE.COM/WATCH?V=2RHD_FCUKFU&T=5S

WHAT IS NCI

  • NCI is a voluntary effort by public

developmental disabilities agencies to measure and track their own performance.

  • Collaboration coordinated by the

Human Services Research Institute (HSRI) and The National Association of State Directors of Developmental Disabilities Services (NASDDDS) which began in 1997

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2/3/2020 4

NCI PARTICIPATING STATES

NCI SURVEYS

Adult in-Person Survey (formerly the Adult Consumer Survey) Adult Family Survey Family/Guardian Survey Child Family Survey Staff Stability Survey

OHIO AND NCI

  • Participating since 2008-2009 survey cycle
  • Adult in-person survey
  • Staff stability survey
  • Family & Family/Guardian Survey –

resuming this upcoming survey cycle

WHY IS OHIO PARTICIPATING

  • Monitor services and supports
  • Track progress
  • Inform policy change
  • Set benchmarks
  • Allocate resources
  • Quality assurance
  • Improvements and initiatives

THE NCI IPS

  • The survey is completely voluntary
  • Survey information is kept confidential- unique survey

codes are used instead of individual's name

  • Services are not directly affected by participation

IPS – DOMAINS/SUB-DOMAINS

  • Work, community inclusion, Participation and

leisure, choices, decisions, self-determination, relationships, satisfaction

Individual Outcomes

  • Safety, health, medications, wellness,

respect/rights

Health, welfare, and Rights

  • Service coordination, Access

System Performance

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2/3/2020 5

WHO WILL BE SURVEYED?

  • Approximately 600 randomly selected

adults receiving services from the state and a separate group of approximately 400 adults who live in ICFs.

PARTS OF THE SURVEY

  • Four Parts to the Survey
  • Pre-Survey Information
  • Background Information
  • Section I
  • Section II

PRE-SURVEY

  • Obtained before the meeting
  • Used for arranging the meeting
  • Any needed accommodations
  • Collects familiar names and terms to

prepare surveyor for a more personalized conversation.

  • Completed by service coordinator

IPS – BACKGROUND SECTION

  • Also completed by service coordinator
  • Obtained through administrative records
  • Some information can be collected

directly from person/guardian

  • Questions include demographics,

residence, health, employment status, and services and supports

IPS - SECTION I (SUBJECTIVE QUESTIONS)

  • Questions only answered in face-to-face conversation
  • Person receiving services only allowed to answer
  • Determines the individuals level of satisfaction
  • Relationships
  • Service coordination
  • Access
  • Respect/rights
  • Safety
  • Work
  • Community inclusion

IPS – SECTION II (OBJECTIVE QUESTIONS)

Questions can be answered by a proxy

  • Family, friends or staff
  • No Case managers

Indicators covered in section II:

  • Community inclusion
  • Choices
  • Respect & rights
  • Access to needed

services

  • T

echnology use

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2/3/2020 6

HOW CAN YOU ACCESS NCI DATA?

NCI data can be accessed by anyone from anywhere, just visit www.nationalcoreindicators.org and view data summaries, presentations, generate a chart, and much more! 

INFORMATION

  • NCI website:

https://www.nationalcoreindicators.org/

  • Nisonger NCI Website:

www.Nisonger.osu.edu/NCI

  • Ohio’s website/data Page:

http://dodd.ohio.gov/IntheNews/Pages/Data.aspx

OHIO NCI NISONGER TEAM

Anna Sigman, NCI Coordinator Email: Annamarie.Sigman@osumc.edu Phone: 614-685-3195 Fax: 614-366-7363 Emily Faherty, Program Assistant Email: Emily.Faherty@osumc.edu Phone: 614-685-3195 Fax: 614-366-6373

  • 3:00 - 3:10

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/23/2019)
  • 3:10 - 3:25

Nisonger Center Update Marc J. Tassé

  • Program Presentations

– 3:25 - 3:40 National Core Indicators Annamarie Sigman – 3:40 - 3:55 Next Chapter Book Club Stacie Klein – 3:55 - 4:10 RRTC and the Role of the Disability Christine Brown & Experience Expert Panel (DEEP) Andrew Buck

  • 4:10-4:25

Legislative Update Michael Kirkman

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 28 April 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

Next Chapter Book Club

Helping People with Disabilities Enjoy Books, Friends, and Community

Why start a book club?

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In a book club, “people can read a book and then have someone else to talk about it with. Then [book club members] see that a book can lead to the pleasure

  • f conversation, that… reading can actually be a

part of the path to communion [relationships] and community.”

  • Bell Hooks
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2/3/2020 7

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  • Next Chapter Book Club (NCBC) offers supported
  • pportunities to continue reading and learning after

school ends.

  • NCBC offers dependable opportunities to socialize

and build friendships.

  • NCBC offers weekly opportunities to be part of

community life.

What is different about Next Chapter Book Club?

Main Parts of NCBC

38

Social Connectedness Literacy & Learning Community Inclusion

Next Chapter Book Club

Who can be a member?

Next Chapter Book Clubs welcome members with any reading level

39

What do NCBC members do?

40

  • Vote for the book they want to read
  • Take turns reading with or without support
  • Ask questions/start conversations about the book

and everyday life

  • Pay for any drink or small snack they want
  • Behave respectfully and safely at all times
  • Support and encourage others in book club

What do NCBC members do?

41

Even though NCBC does not teach reading, NCBC members often learn new skills and vocabulary just by coming to book club each week

What do NCBC members read?

Adapted Classics

  • Black Beauty
  • Little

Women

  • The Call of the

Wild

  • The Secret Garden
  • The

Wind in the Willows

  • Treasure Island

Short Stories, Plays and Poems

  • Lucky Dogs, Lost Hats, and Dating Don’ts
  • New Love, Spilt Milk, and Potbellied Pigs

42

Popular Fiction

  • Because of Winn-Dixie
  • Bridge to

Terabithia

  • Charlotte’s

Web

  • Harry Potter series
  • A Wrinkle in Time
  • Percy Jackson series
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2/3/2020 8

NCBC Meetings

  • Clubs meet for 1

hour each week, at the same time and location

  • 4 to 8 members,

1 to 3 facilitators per club

43

NCBC Meetings

44

  • Members take turns

reading aloud, receiving as much support as they need

  • Members also spend

time socializing with each other

NCBC, 2002 – 2020

45

NCBC was started in 2002 in Columbus, Ohio. Now, there are over 300 Next Chapter Book Clubs across the world! www.nextchapterbookclub.org

Becoming a Facilitator

46

NCBC facilitators are volunteers from all walks of life

  • Students
  • Retirees
  • Professionals
  • People with disabilities
  • Family members

NCBC facilitators join members at book club to foster an environment that is safe, supportive and fun

Get Involved

To join an NCBC in Franklin County, contact Program Coordinator Stacie Klein at

  • (614) 293-6945
  • Stacie.Klein@osumc.edu

To learn about NCBC’s outside Franklin County, contact T

  • m Fish at
  • TFish@nextchapterbookclub.org

47

Acknowledgements

48

In Franklin County OH, NCBC is

  • perated by The

Ohio State University Nisonger Center and receives support from:

  • Franklin County Board of Developmental Disabilities
  • The Columbus Foundation
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2/3/2020 9

Thank you

  • 3:00 - 3:10

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/23/2019)
  • 3:10 - 3:25

Nisonger Center Update Marc J. Tassé

  • Program Presentations

– 3:25 - 3:40 National Core Indicators Annamarie Sigman – 3:40 - 3:55 Next Chapter Book Club Stacie Klein – 3:55 - 4:10 RRTC and the Role of the Disability Christine Brown & Experience Expert Panel (DEEP) Andrew Buck

  • 4:10-4:25

Legislative Update Michael Kirkman

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 28 April 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

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The Ohio State University Nisonger Center Rehabilitation Research and Training Center

  • Christine Brown: Clinical Research Assistant
  • Andrew Buck: Learning & Development Consultant

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8/7/2019 52

The Need for Inclusive Health Research

  • We do not have accurate data on the health

care needs of people with intellectual disabilities (ID), especially mental health needs

  • Mental health issues are hard to diagnose

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The Need for Inclusive Health Research

  • Proxy reporting

○ Health professionals often rely on opinions and

  • bservations of someone close to the patient

○ Improving health care requires getting answers

directly from patients

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8/7/2019 54

The OSU Nisonger Rehabilitation Research and Training Center (RRTC)

Nisonger Center won a grant to:

  • Adapt health surveys
  • Study rates of comorbidity
  • Advance mental health treatment
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The OSU Nisonger RRTC

  • The Rehabilitation Research and Training

Center (RRTC) grant is funded by the National Institute on Disability, Independent Living, and Rehabilitation Research

  • Susan Havercamp, Ph.D., is the Principal

Investigator of the 5-year project

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8/7/2019 56

Our Goal

Improve health and quality of life outcomes for people with ID (Intellectual Disabilities) Improve health and quality of life outcomes for people with ID (Intellectual Disabilities)

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Our Commitment Statement

The RRTC at Nisonger Center is committed to including individuals with lived experience with intellectual disability in every aspect

  • f our research.

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8/7/2019 58

What are we trying to do?

  • Learn how adults with ID can speak

up about their own health

  • Make health surveys easier to

understand for self-report

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8/7/2019 59

What are we trying to do?

  • Find the prevalence rate of adults with

ID and mental health issues

  • Understand best practices in treating

mental health issues for adults with ID

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8/7/2019 60

What are we trying to do?

  • Construct and share guidelines for

clinical care and mental health therapy

  • Conduct research that includes people

with lived experience

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SLIDE 11

2/3/2020 11

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8/7/2019 61

Study 1: Health Surveys

  • Make health surveys more accessible

○ Reduce reading level ○ Simplify vocabulary ○ Add images and icons ○ Improve technology access

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8/7/2019 62

Study 1: Health Surveys

  • Increase self‐report in adults with ID

(Intellectual Disabilities)

  • Survey 1 Draft
  • Survey 2 Draft

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8/7/2019 63

Study 2: Rate of ID and Mental Health Conditions

  • Find the rate of mental health conditions

& health outcomes among adults with ID

  • National Core Indicators (NCI): Random

sample from different states

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8/7/2019 64

Study 3: Best Practice Guidelines

  • Make best practice guidelines for health

professionals to support adults with ID

  • Improve health care and mental health

treatment for adults with ID

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8/7/2019 65

Learning Collaborative

We recruited researchers and community members to form a “Learning Collaborative:”

  • Research Experiences Expert Panel (REEP)
  • Disability Experiences Expert Panel (DEEP)

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Learning Collaborative

REEP: Research Experiences Expert Panel

  • OSU and National Researchers
  • Design Research
  • Collect Data
  • Report Findings
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Learning Collaborative

DEEP: Disability Experiences Expert Panel

  • Community Members with ID
  • Inform and Support Research Process
  • Give Feedback, Ideas, and Perspective
  • Share Project Information

REEP

Research Experiences Expert Panel

DEEP

Susan Havercamp Disability Experiences Expert Panel

Learn Listen Share

LEARNING COLLABORATIVE

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8/7/2019 69

Next Steps: Study 1

We are actively recruiting more people to participate in the process:

  • 50 community members with ID in Central

Ohio to complete the adapted surveys

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Next Steps: Study 3

  • 56 community members with ID to conduct

focus groups on accessible therapy ○ 32 (Central Ohio) ○ 24 (Nationally)

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HELP US HEAR YOUR VOICE!

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YOUR VOICE MATTERS.

To Learn More:

  • Visit our website: http://go.osu.edu/RRTC
  • Send us an email: rrtcnisonger@osumc.edu
  • Give us a call: 1‐833‐678‐7782
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Thank You!

Christine Brown: Christine.Brown@osumc.edu Andrew Buck: Andrew.Buck@osumc.edu

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The contents of this presentation were developed under a grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR grant awards number 90RTHF0002‐01‐00). NIDILRR is a Center within the Administration for Community Living (ACL), U.S. Department of Health and Human Services (HHS). The contents of this presentation do not necessarily represent the policy of NIDILRR, ACL, or HHS, and you should not assume endorsement by the Federal Government.

https://www.rrtcnisonger.org/

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References

Hassiotis, A. & Turk, J. (2012). Mental health needs in adolescents with intellectual disabilities: Cross‐sectional survey of a service sample. Journal of Applied Research in Intellectual Disabilities, 25, 252‐261. Schutzwohl, M. et al. (2018). Self‐ and proxy‐rated needs in adults with mild to moderate intellectual disabilities: Perspective matters. Journal

  • f Applied Research in Intellectual Disabilities, 31(2), 285‐295.

Summers, J., Fletcher, R. & Bradley, W. (2017). People with intellectual and developmental disabilities and mental health needs. In Wehmeyer et al. (Eds.), A comprehensive guide to intellectual & developmental disabilities (pp. 679‐694). Baltimore, MD: Paul H. Brookes Publishing Co.

  • 3:00 - 3:10

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (10/22/2019)
  • 3:10 - 3:25

Nisonger Center Update Marc J. Tassé

  • Program Presentations

– 3:25 - 3:40 National Core Indicators Annamarie Sigman – 3:40 - 3:55 Next Chapter Book Club Stacie Klein – 3:55 - 4:10 RRTC and the role of the Disability Christine Brown & Experience Expert Panel (DEEP) Andrew Buck

  • 4:10 - 4:25

Legislative Update Michael Kirkman

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 28 April 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

  • 3:00 - 3:10

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (10/22/2019)
  • 3:10 - 3:25

Nisonger Center Update Marc J. Tassé

  • Program Presentations

– 3:25 - 3:40 National Core Indicators Annamarie Sigman – 3:40 - 3:55 Next Chapter Book Club Stacie Klein – 3:55 - 4:10 RRTC and the role of the Disability Christine Brown & Experience Expert Panel (DEEP) Andrew Buck

  • 4:10 - 4:25

Legislative Update Michael Kirkman

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 28 April 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

Next Meeting

Tuesday, 28 April 2020 3:00 – 4:30pm Call for Agenda Items

Nisonger Center Consumer Advisory Council Nisonger Center Consumer Advisory Council