Consumer Advisory Council Consumer Advisory Council 3:15 - 3:30 - - PowerPoint PPT Presentation

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Consumer Advisory Council Consumer Advisory Council 3:15 - 3:30 - - PowerPoint PPT Presentation

Nov 02, 2022 248 likes •546 views

8/7/2020 CAC Agenda CAC Agenda 3:00 - 3:15 Welcome and Introductions Jed Morison Welcome everyone around the table Approval of Minutes (1/28/2020) Consumer Advisory Council Consumer Advisory Council 3:15 - 3:30 Nisonger

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8/7/2020 1

Consumer Advisory Council Meeting

July 28, 2020

Consumer Advisory Council Meeting

July 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. VALUES: 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. VALUES: 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 - 3:15

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (1/28/2020)
  • 3:15 - 3:30

Nisonger Center Update Marc J. Tassé

  • 3:30 - 3:45

Medical Student Education on Disabilities Jennifer Walton

  • 3:45 – 4:00

Charting The LifeCourse/FRNO Tracey Manz

  • 4:00-4:25

Legislative Update Kerstin Sjoberg

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 27 October 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

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SLIDE 2

8/7/2020 2

Ashley Poling John Brown Stephanie Leppert

New Members

  • 3:00 - 3:10

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (1/28/2020)
  • 3:10 - 3:30

Nisonger Center Update Marc J. Tassé

  • 3:30 - 3:45

Medical Student Education on Disabilities Jennifer Walton

  • 3:45 – 4:00

Charting The LifeCourse/FRNO Tracey Manz

  • 4:00-4:25

Legislative Update Kerstin Sjoberg

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 27 October 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

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8/7/2020 3

General Information General Information

  • Celebrating 30 years of the

Americans with Disabilities Act (ADA)!

https://dodd.ohio.gov/wps/portal/gov/dodd/ about-us/communication/news/news-ohio- celebrates-ada-30th

General Information General Information

  • Congratulations to Susan Havercamp, PhD!

Promotion to Professor, Department of Psychiatry and Behavioral Health.

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8/7/2020 4

General Information General Information

  • Congratulations to Susan! Promotion to Professor,

Department of Psychiatry and Behavioral Health.

  • Stephen Beetstra, DDS, MHSA
  • Faculty member/Program Director
  • Start date: Monday, August 17th, 2020
  • Director, Nisonger Center Dental Services
  • Assistant Professor of Clinical Dentistry, College of Dentistry
  • 80% effort @ Nisonger Center / 20% effort @ College of Dentistry

General Information General Information

16th President of The Ohio State University

  • Kristina M. Johnson, PhD
  • September 1, 2020
  • PhD – electrical engineering,

Princeton University

  • Dean, School of Engineering,

Duke University

  • Provost & Senior VP, Johns Hopkins University (2007)
  • Appointed by Pres. Obama - Under Secretary of Energy (2009)
  • Chancellor, State University system of New York (2017)
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8/7/2020 5

General Information General Information

Nisonger Institute 2020

  • May 8, 2020.
  • ZOOM/virtual
  • 375 participants
  • US & Canada
  • 6 states

General Information General Information

Mid-March: COVID-19

  • All staff moved to telework, telehealth consultations –

few in-person services continued (exception: dual dx clinic, emergency dental care, clinical trials research)

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8/7/2020 6

General Information General Information

Mid-March: COVID-19

  • All staff moved to telework, telehealth consultations –

few in-person services continued (exception: dual dx clinic, emergency dental care, clinical trials research)

  • Re-opening of Nisonger Center Activities, Programs,

Services, Research.

  • June 1: re-start of Nisonger Early Learning Program
  • Phase 1. n=36 children (6/1/2020)
  • Phase 2. n=53 children (7/6/2020

General Information General Information

Mid-March: COVID-19

  • All staff moved to telework, telehealth consultations –

few in-person services continued (exception: dual dx clinic, emergency dental care, clinical trials research)

  • Re-opening of Nisonger Center Activities, Programs,

Services, Research

  • June 1: re-start of Nisonger Early Learning Program
  • Phase 1. n=36 children (6/1/2020)
  • Phase 2. n=53 children (7/6/2020
  • June 1: research projects restart.
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8/7/2020 7

General Information General Information

Mid-March: COVID-19

  • All staff moved to telework, telehealth consultations –

few in-person services continued (exception: dual dx clinic, emergency dental care, clinical trials research)

  • Re-opening of Nisonger Center Activities, Programs,

Services, Research

  • June 1: re-start of Nisonger Early Learning Program
  • Phase 1. n=36 children (6/1/2020)
  • Phase 2. n=53 children (7/6/2020
  • June 1: research projects restart.
  • June 15: in-person/telehealth/hybrid clinics restart.

General Information General Information

Mid-March: COVID-19

  • All staff moved to telework, telehealth consultations –

few in-person services continued (exception: dual dx clinic, emergency dental care, clinical trials research)

  • Re-opening of Nisonger Center Activities, Programs,

Services, Research

  • June 1: re-start of Nisonger Early Learning
  • Phase 1. n=36 children (6/1/2020)
  • Phase 2. n=53 children (7/6/2020
  • June 1: research projects restart.
  • June 15: in-person/telehealth/hybrid clinics
  • June 22: dental clinics re-open.
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8/7/2020 8

General Information General Information

  • Budget Impact of COVID-19
  • Ohio’s general revenue => state budget
  • University budget
  • Wexner Medical Center budget
  • Loss of revenues (e.g., fee-for-service programs)
  • Increase in expenses (related to COVID-19)
  • Freeze – salary, new hires, purchasing/discretionary

expenses, travel.

  • All in-person activities / events canceled

General Information General Information

  • Annual Program Performance Report
  • 2016-2021 (5-year grant)
  • July 30, 2020
  • PPR – will be sent to all CAC members
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8/7/2020 9

  • 3:00 - 3:15

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/28/2020)
  • 3:15 - 3:30

Nisonger Center Update Marc J. Tassé Program Presentations

  • 3:30 - 3:45

Medical Student Education on Disabilities Jennifer Walton

  • 3:45 – 4:00

Charting The LifeCourse/FRNO Tracey Manz

  • 4:00-4:25

Legislative Update Kerstin Sjoberg

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 27 October 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda Medical Student Education

  • n Developmental Disabilities

Jennifer R. Walton, MD, MPH Developmental Behavioral Pediatrics Assistant Professor of Clinical Pediatrics Director of Clinical Services & Associate LEND Director OSU Nisonger Center

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8/7/2020 10

Combating Autism Act, 2011

  • OSU Nisonger Center received HRSA

grant funds:

– REAL Action in Ohio: Resource, Education, Alignment, & Linkages

  • Autism Curriculum Guide Website

OSUCOM Curriculum

  • Panel featuring individuals & families of

individuals with Autism Spectrum Disorder (ASD)

  • 3rd year medical students will attend and

listen to this panel before beginning their Pediatrics/Family Practice clerkship rotations

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8/7/2020 11

Medical Education Panel on ASD

  • Scheduled three times a year

– Developmental behavioral pediatrician (DBP) served as facilitator – Two parents of children with ASD discussed experiences navigating healthcare, education, & community resources – Individual with ASD described daily living – Medical students can ask questions of the panelists – DBP would debrief with medical students, discussing more about Autism, I/DD, etc.

OSU Medical Education in I/DD

  • Over the last decade, evolution of

medical education to more than 3rd year medical students

– CDC-RFA-DD16-160302 Havercamp (PI) 2016-2021 – American Association on Developmental Medicine & Dentistry Contract Macerollo (PI) 2017-2018

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8/7/2020 12

OSUCOM Curriculum

  • 1st year: Lecture by two physicians on Developmental

Disabilities

  • 2nd year: longitudinal group experience with a

documentary about adults with I/DD, activities of daily living, communication with health professionals

  • 3rd year:
  • Simulated clinic patient experience with the student

interviewing an adult with I/DD

  • ASD panel
  • 2018-2019: 4th year medical students surveyed on their

third year experiences---positive results

LEND Leadership Project

  • Medical Education Panel on ASD became a LEND

leadership project

  • LEND DBP fellow would facilitate the panel
  • 2018-2019 year: three LEND trainees reviewed the

clinic simulated patient experience and ASD panel, one

  • f the trainees an individual with ASD—self advocate

– Served on panel twice in the academic year – Prepared with life coach & LEND coordinator – Welcomed by the other panelists (parents of children with ASD)

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8/7/2020 13

LEND Leadership Project

  • 3rd year medical students were very engaged

with our LEND trainee on the panel, asking several questions, and he did a fabulous job answering them!

  • 2019 LEND Poster Day: highlighted Medical

Education Panel on ASD: 3rd place!

  • LEND trainee now employee at the OSU

Nisonger Center, still participates on the panel!

May 2020

  • Medical Education Panel on ASD was virtual

due to COVID-19 pandemic

  • One-time panel for the year, where

approximately 160 3rd year medical students were virtually present to hear our two parents and our self-advocate discuss their experiences.

  • Several questions and comments from the

students—the panel was very well received!

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8/7/2020 14

Conclusion

  • Education on individuals with a variety of

developmental disabilities must start early.

  • Healthcare encounters with individuals with

I/DD will occur, in every specialty.

  • Building provider-patient rapport, learning what

questions to ask, navigating supportive resources, is essential.

  • Sometimes it’s better to hear from individuals

and families, than the providers.

QUESTIONS??? THANK YOU!!!

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8/7/2020 15

  • 3:00 - 3:15

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/28/2020)
  • 3:15 - 3:30

Nisonger Center Update Marc J. Tassé Program Presentations

  • 3:30 - 3:45

Medical Student Education on Disabilities Jennifer Walton

  • 3:45 – 4:00

Charting The LifeCourse/FRNO Tracey Manz

  • 4:00-4:25

Legislative Update Kerstin Sjoberg

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 27 October 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

&

Tracey Manz: Program Coordinator

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8/7/2020 16

Family Resource Network of Ohio

  • Partnership between

– GOAL: Develop a statewide family resource network based on the Charting the LifeCourse framework

Charting the LifeCourse Core Beliefs

Charting the LifeCourse model is that all people have the right to live, love, work, and play to pursue their life’s aspirations. The model is intended to:

  • Help families and individuals learn how to think about their lives
  • Discover their passions, wants, needs, hopes and dreams
  • Become better advocates to achieve the life that they desire.

Through the use of the Charting the LifeCourse tools, families and individuals are supported to make strides toward their goals.

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8/7/2020 17

Charting the LifeCourse…....

IS:

  • About having different conversations
  • A different way of thinking
  • Encouraging high expectations
  • Having life experiences to move the trajectory in the desired direction
  • Integrating LOTS of different kind of support, and not just having a life
  • f only Eligibility Specific (all green life) Supports

ISN’T:

  • JUST about the “tools”
  • A “program”
  • Is for ANYONE, regardless of AGE or ABILITY!

Charting the LifeCourse Trajectory tool

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8/7/2020 18

Trajectory Across Life Stages and Life Transitions

Getting New Diagnosis Parents Turn 65 Medicare & SSDI Leaving Early Childhood/ enter school Transition planning Living Adult Life My parents have passed away, what do I do? Turning 18. Leaving school at 18 or 21

Life Transitions And Disability System Transitions

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8/7/2020 19

Charting the LifeCourse Integrated Supports STAR

100%

Integrated Star Tool- Completed

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8/7/2020 20

Achieving Outcomes for Connected Life Domains

Daily Life and Employment

(school/education, employment, volunteering, routines, life skills)

Community Living

(housing, living options, home adaptations and modifications, community access, transportation)

Social and Spirituality

(friends, relationships, leisure activities, personal networks, faith community)

Healthy Living

(medical, behavioral, nutrition, wellness, affordable care)

Safety and Security

(emergencies, well-being, legal rights & issues, guardianship options & alternatives )

Advocacy and Engagement

(valued roles, making choices, setting goals, responsibility, leadership, peer support)

“Good Life for All ”

The Individual will achieve self- determination, interdependence, productivity, integration, and inclusion in all facets of community life Families will be supported in ways that maximize their capacity, strengths, and unique abilities to best nurture, love, and support all individual members to achieve their goals

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8/7/2020 21

Who received training?

17% 43% 40%

Summary of Training Participants

Self-advocates Family Members/Caregivers Professionals

2019-2020 Charting the LifeCourse Trainings

  • Below are a some participant comments:
  • “I find that this is super helpful for students

struggling with behavior or whose actions aren’t getting them to a good life.”

  • “Our son has needs for anticipating and planning

a good life outcome which we did not know how to address. Now we do.”

  • “Helps me think about where to start when my

sibling enters the system.”

  • “I will be able to help my residents better to get

resources to them.”

  • “As a High School SpEd Coordinator this

information allows me to share positive outcomes available for my students after high school.”

The 60 CtLC trainings reached more than 1,400 individuals throughout the state

  • f Ohio.
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8/7/2020 22

Through the Charting the LifeCourse trainings we hoped families and individuals would learn:

  • What they need to know and do in their current

and/or future life stage

  • How to find or develop supports for themselves
  • r a family member
  • How to develop a vision for a good life
  • What it takes to pursue the kind of life that they

desire.

Training Satisfaction…99%!

72% 27% 1% 0%

Satisfied with Charting the LifeCourse Training

Strongly Agree Agree Disagree Strongly Disagree

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8/7/2020 23

WWW.FRNOHIO.ORG

A searchable website of local and statewide disability resources was developed based on the Charting the LifeCourse model. It is designed to both provide resources to family members and self-advocates. The site also provides:

  • Educational resources about the Charting the LifeCourse tools and

framework

  • Allows visitors to request a Charting the LifeCourse or advocacy training
  • Includes an event calendar, testimonials, and offers a family forum where

families can open discussions on topics of their choosing or request information from other parents.

  • Every aspect of the site is searchable by both lifespan and life domains

The Family Resource Network

  • f Ohio (FRNO) Website
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8/7/2020 24

FRNO Website Facts and Figures…

  • Currently over 8,710 views compared to 1,500 in the last year
  • 8,600 of those were new users.
  • We had total page views of over 19,000
  • Utilized by people in all 50 states and the District of Columbia and

even 10 different countries.

  • 700 resources and products.
  • Most popular pages are the Resource page and About Charting the

LifeCourse page.

  • COVID-19 resource page filled with information relating to families with

disabilities

  • Video section where videos from experts in fields related to families

with disabilities are available.

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8/7/2020 25

Looking Ahead

  • Expanding the number of Charting the LifeCourse Ambassadors in Ohio.
  • Nisonger Center has two people currently undergoing Ambassador training and we are

working toward an Ohio training with a contingent of 15 new ambassadors being added.

  • Expanding Charting the LifeCourse and advocacy trainings
  • Identification of services, supports, and resources for the FRNO website will continue

throughout the coming year.

  • Train more professionals.
  • We will continue to do trainings to support the DODD family grants including the Ohio Family

Network (OFN), Family Outreach Grant and the Youth Respite grant.

  • We expect that requests for training will increase significantly this year as the program is

becoming more well-known and we are seeing the positive results of its implementation.

lifecoursetools.com

Self-Advocate Tools & Resources Family Perspective Tools Formal Planning Tools and Forms Planning for Life Outcomes and/or Service Planning 800-444-0821

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8/7/2020 26

Final Thoughts…

We know that there is much to be accomplished but, we believe that Ohio is on the right trajectory for implementing the Charting the LifeCourse framework across the state.

  • 3:00 - 3:15

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/28/2020)
  • 3:15 - 3:30

Nisonger Center Update Marc J. Tassé

  • 3:30 - 3:45

Medical Student Education on Disabilities Jennifer Walton

  • 3:45 – 4:00

Charting The LifeCourse/FRNO Tracey Manz

  • 4:00-4:25

Legislative Update Kerstin Sjoberg

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 27 October 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

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SLIDE 27

8/7/2020 27

  • 3:00 - 3:15

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/28/2020)
  • 3:15 - 3:30

Nisonger Center Update Marc J. Tassé

  • 3:30 - 3:45

Medical Student Education on Disabilities Jennifer Walton

  • 3:45 – 4:00

Charting The LifeCourse/FRNO Tracey Manz

  • 4:00-4:25

Legislative Update Kerstin Sjoberg

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 27 October 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

  • 3:00 - 3:15

Welcome and Introductions Jed Morison

  • Welcome everyone around the table
  • Approval of Minutes (4/28/2020)
  • 3:15 - 3:30

Nisonger Center Update Marc J. Tassé

  • 3:30 - 3:45

Medical Student Education on Disabilities Jennifer Walton

  • 3:45 – 4:00

Charting The LifeCourse/FRNO Tracey Manz

  • 4:00-4:25

Legislative Update Kerstin Sjoberg

  • 4:25 - 4:30

New Business Jed Morison

  • 4:30

Wrap-up & Reminder: Next meeting Jed Morison

  • Tuesday, 27 October 2020
  • Call for Agenda Items

CAC Agenda CAC Agenda

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8/7/2020 28

Next Meeting

3:00 – 4:30pm Call for Agenda Items

Nisonger Center Consumer Advisory Council Nisonger Center Consumer Advisory Council