Transition to Adulthood Learning Collaborative (TALC) FY20 Quarter - - PowerPoint PPT Presentation

FY20 Quarter 3 Meeting May 13, 2020

Transition to Adulthood Learning Collaborative (TALC)

Agenda

• Welcome & Housekeeping
• Presentation “Personal Networks: Enriching Life in the Present and

Providing for the Future”

• CSHCN Systems Development Group Updates
• Current & Upcoming Events
• TALC Member Updates & Events
• Resources & Publications
• Next Meeting Date & Adjourn

Housekeeping

• All lines are in listen only mode
• During the Q & As, click the RAISE HAND icon and we’ll unmute your line
• If your computer does not have a mic, please use the phone for audio (phone is preferred)
• Use the Chat Box to:
• Communicate with us
• Ask the speaker a question
• Get help with technical difficulties
• You will not be unmuted if you comment in the chat box
• Agenda, PowerPoint slides, and handouts are in the Handouts section
• Today’s call will be recorded and posted on our website at https://bit.ly/2Kc1tke

Words of Wisdom: Insights from a Self-Advocate

“Our parents are used to rolling with the punches, but we’re not. In some ways we are moving backwards now and forced to rely more on our

• parents. It’s important for parents to know that if transition timelines have

to be moved back, they need to tell their son’s/daughter’s that it’s temporary. The new timeline is not a reflection on our abilities- it’s the current circumstances which are temporary. This needs to be a discussion. It needs to be reinforced repeatedly.”

• Amy Litzinger

Personal Networks: Enriching Life in the Present and Providing for the Future

Denise Sonleitner, Lead Facilitator Texas Network Connections Project/Texas Parent to Parent

Personal Networks: Enriching Life in the Present and Providing for the Future TEXAS NETWORK CONNECTIONS

Creating Community for People with Disabilities

How are we, as parents, going to make sure that our son

• r daughter with a disability has a good life, both now and

after we die? Who will make sure that the plans we have arranged and the services we have secured are implemented and functioning well after we are gone? How do we make sure our child is not lonely, isolated or neglected? How do we give caring friends and family an opportunity to have a fulfilling relationship with our child? How am I, a person with a disability, going to achieve these goals for myself?

Not Alone!

MavMen--2010

Network Group Photograph

What We’ll Cover Today

• What is a personal network?
• History of networks
• Texas Network Connections (TxNC)
• Key components of networks
• Networks in action!
• Starting a network
• Q & A

What is a Personal Network?

Lucas’ Lineup—2019

Network Group Photograph

What is a Personal Network?

A personal network is an intentional community of friends, family members and acquaintances who assist and collaborate with a person at risk of isolation and his/her

• family. Personal networks promote

planning and social opportunities, assist with decision-making and goal setting, and work with the person at the center to be a sustainable resource after parents can no longer be available.

History of Personal Networks

TEXAS NETWORK CONNECTIONS (TxNC)

Creating Community for People with Disabilities

• Network facilitation services
• Do-it-Yourself (DIY) Manual on

Starting a Personal Network

• DIY Workshops & TAGs
• Introductory Presentations
• TxP2P Transition Center of

Central Texas

Networks in Action!

Just for Jaclyn—2014

Network Group Photograph

Networks in Action!

The Gift Keepers—2018

Network Group Photographs

Networks in Action!

Elana’s Rose Garden—2015

Network Group Photographs and Network Activities

Networks In Action!

Photograph of Two Network Members

Five Key Components of Networks

#1 Relationships are the key to a good life and the foundation of networks #2 No disability precludes relationship #3 Successful networks are directed by individuals and/or families #4 Networks focus on contribution #5 Everyone benefits -- community

Starting a Network

Naruto Network—2018

Network Group Photograph

Starting a Network Start Young!

Photograph of Person at Center of the Network

The Three Phases of Network Development: Invitation, Development & Maintenance

Photograph of Two Network Members

Phase One: Invitation

Network Group Photograph

Invitation: Who do I Invite?

• Identify people in your life:
• Immediate and extended family
• Neighbors, family friends, church members
• Professionals who have worked with you,

your son, or daughter (school, attendants, therapists, etc)

• People who you want to get to know better,

but have never known how to

• People who share common interests with you

Siblings Love Networks!

Photographs of Siblings in Networks

Invitation: Is it easy?

Photograph of Two Network Members

Or is it hard?

Asking is the #1 challenge to starting a network

Invitation: Host an Invitation Meeting

• Snacks and socializing
• Welcomes and Introductions. How do you

know the person at the center?

• What is a personal network?
• Why are we starting a personal network?
• What are the commitments of network

members?

• The Ask: To join or not join the network?

Phase Two: Development The Journey Begins: Network Meetings

SNAPshots—2014

Network Group Photograph

Development: Network Meetings Socializing and Eating!

Photographs of Network Members and Network Activities

Development: Network Meetings Taking Care of Business

AGENDA

• Introductions. What’s new with members?

Getting started: Develop the Network

• Think about a name
• List and assign roles
• Communication tool: Email? Text? Website? Facebook?
• Decide when to meet, how often, where, etc…

Getting to know Maverick and his supports, part 1: Activity Calendar:

• Deadlines
• Appointments
• celebrations

Next Meeting Adjourn

Development: Network Meetings Format & Goals

Photographs of Network Members and Network Activities

Development: What Do Networks Do?

 Meet for two hours, 3-4 times per year  Provide social opportunities  Help person at center to identify and articulate

his or her needs from the network

 Offer guidance and mentorship  Assist with goal setting  Monitor services  Learn about disability issues  Explore employment options  Eat good food and drink  Have fun!

Network Meetings: Just Do It!

Rebecca’s Network—2018

Network Group Photograph

Phase Three: Maintenance and Sustainability

The Waco’s—2018

Network Group Photograph

Maintenance and Sustainability: SNAPshots Celebrates Another Year And Overcomes Network Hurdles! Photograph of Three Network Members

Just for Jaclyn Launches in 2015

Photographs of Network Members and Network Activities

Just 4 Jaclyn in 2019

Photographs of Network Members and Network Activities

Maintenance and Sustainability: The Wacos Take Charge in 2018!

Network Group Photograph and Network Selfie

Maintenance and Sustainability: The Cavern Club Keeps on Rockin!

Cavern Club—2009

Photographs of Network Members and Network Activities

Developing a healthy, sustainable network takes years And…that’s

• kay.

Networks are a work in progress! Photograph of Network Members and Network Activity

Network Group Photograph Over time, as networks mature, relationships deepen and members become more invested in each other’s lives

Colter’s Intelligence Agency (CIA)-–2017

Texas Network Connections

https://www.txp2p.org/services/texas-network-connections

Pathways to Adulthood

https://www.txp2p.org/services-for-parents-pathway-to-adulthood

Transition Center of Central Texas

https://www.txp2p.org/services/services-for-parents-pathway-to- adulthood/transition-center

For more information about these and other TxP2P programs, contact Cynda Green at 737-484-9045 or cynda.green@txp2p.org

CSHCN Systems Development Group Updates

CSHCN Resource Guide: Now Available in Spanish

New program brochure includes general health care and family support resources for CSHCN and their families. Order brochures here: https: / / bit.ly/ 38t2cYo

Current & Upcoming Events

2020 Census – Help Get the Word Out!

• As of April 28, less than 49 percent of Texas households had completed the

survey, compared to almost 54 percent nationally.

• A 1% undercount could result in a loss of at least $300 million of federal

funding per year.

• Census Bureau has resources available in English and 59 other languages
• For more Census info, visit 2020census.gov

Upcoming Events – Transition Webinars

Texas Parent to Parent (TxP2P)

Every Tuesday at 1:30 – 2:30 pm, TxP2P will host a Transition Call starting with Pathways to Adulthood 4-part series Part 1: Getting Started on Transition (started yesterday, May 12th) Part 2: Essential Transition Information (May 19th) Part 3: Using School Year for Great Transition (May 26th) Part 4: Getting a Handle on Legal Issues (June 2nd) To register: https://us02web.zoom.us/meeting/register/tZ0vc-ugqz4tGNRVCP5AbyRrG8AMvMVG8wyJ

PACER Center,

June 18th Webinar on Tools to Help Manage Daily Life for College Students with Intellectual Disabilities Heading off to college brings excitement as well as new challenges for students and their families. In this Think College webinar PACER's Simon Technology Center specialists will discuss tools to support students with intellectual disabilities as they learn to navigate the college campus and college life. Demonstrations will include mobile apps to help students manage their time, schedule, money, and social connections. Save the Date: June 18, 2020 3:00 PM Eastern Time and register here.

Upcoming Events – TWC Virtual Town Hall

Virtual Town Hall Meeting for Vocational Rehabilitation Customers, Caregivers, and Service Providers Town Hall Meeting will have three goals: 1) Describe VR services across Texas; 2) Discuss employment-related needs; and, 3) Learn how to improve VR services. Tuesday May 19, 2020 Session 1: 9:00- 10:30 AM Register Now Session 2: 6:30- 8:00 PM Register Now For more information and to download survey questions in advance, https://www.twc.texas.gov/events#rehabilitationCouncilOfTexas

Upcoming Events - Conferences

• Route 66 Abilities Conference (in Amarillo)
• Postponed due to Covid-19, date TBD
• Texas Primary Care Consortium Annual Summit (in Austin)
• Postponed due to Covid-19, date TBD
• 16th Annual Texas Parent to Parent (TxP2P) Statewide Conference (in Austin)
• NEW DATE: August 22-23 (subject to change depending on situation)
• Texas Advocates Conference (in Houston)
• July 31 – August 2nd
• 28th Annual Texas Autism Conference (in San Antonio)
• August 6 -7

Upcoming Events - Conferences

• Partners in Prevention Conference (in Houston)
• October 20 – 22
• 21st Annual Chronic Illness and Disability: Transition from Pediatric to Adult

Health Care Conference (in Houston)

• October 29 – 30 (See Flyer in Handouts Section)
• Project Leadership Training of Trainers (in Austin)
• November 2-4
• Sign up for the interest list

TALC Member Updates & Events

Texas A&M Center on Disability and Development

Project LEAP

https://cdd.tamu.edu/education/project-leap/

W.A.C.O Project

https://cdd.tamu.edu/education/waco-project/

Center on Disability and Development, Texas A&M University

• Cheryl Grenwelge
• (979) 845-3727
• chgrenwelge@ag.tamu.edu
• https://cdd.tamu.edu/

Texas A&M - School of Public Health

T3 Transition Planning Toolkit for Providers https://www.texastransitiontoolkit.org/

Care Transitions for Children and Youth with Special Health Care Needs: A Scoping Review

Darcy McMaughan, PhD1, Emily Naiser, MPH2, Sherry Lin, PhD1, Judith Beverly, MPA1, Josh Brog, MPH1, Ehi Idoko, MA1, Jennifer Ozmetin, BS1, Margaret Foster, MS3

Children and Youth with Special Health Care Needs

~ 15% of US children Higher level of well coordinated health care across multiple providers and specialty types ~ 90% of CYSHCN who reach adolescence live into adulthood Access to health services decreases as CYSHCN age In Texas, 35.4% of CYSHCN (12-17 years old) receive the services necessary to transition to adult health care, work, and independence

METHOD S

• 2. Data Analysis

Questions

• 1. Search Algorithm
• 3. PRISMA Diagram

TAKE HOME POINTS RESULTS

Using the scoping we review we created a searchable site addressing the take home points

Care Transitions for Children and Youth with Special Health Care Needs

McMaughan, Darcy; Naiser, Emily; Lin, Sherry; Beverly, Judith; Brog, Josh; Idoko, Ehi; Ozmetin, Jennifer; Foster, Margaret Texas A&M University School of Public Health Medical Sciences Library College of Liberal Arts Public Policy Research Institute

School of Public Health Practicum Experience

• All MPH students at the School of Public Health are required to

complete a practicum experience as part of their curriculum

~ 200 hours

• This is an opportunity to apply the concepts, strategies and

tools acquired during their program. Some examples include:

 Assist with daily tasks  Conduct literature reviews, write manuscripts, or develop presentations or educational material for the organization  Conduct community needs assessments, evaluation of existing programs, and statistical analysis  Write reports  Develop and conduct surveys

• For more information: https://public-health.tamu.edu/practice/practicum.html
• If you have an idea, we can help you develop a practicum experience:

https://tamsph.quickbase.com/db/bk3pujwmj?a=nwr

• Contact us: https://public-health.tamu.edu/practice/contact.html

Texas Center for Disability Studies COVID-19 Response

(select projects are highlighted that relate to Transition age population)

Assistive Technology

• Texas Technology Access Program (TTAP) – The TTAP provides information and assistance
• n accessible technology. Demonstrations and short-term device loans are temporarily on

hold due to the elevated need for sanitization and precautionary measures. The TTAP works with 16 demonstration centers in Texas to grow knowledge and use of assistive technology statewide and is becoming more connected to agencies and stakeholders during this period. Fam ily Support

• Texas Sibling Network (TSN) – The TSN shifted all meetups to online platforms. The TSN

completed two successful state-wide meetups and have more planned in the coming months. A Futures Planning Webinar is in development and staff regularly share resources with all members of the TSN that may be helpful during the pandemic.

. Transition

• E4Texas – E4Texas shifted to an online program by utilizing

Canvas, Zoom, and other online technologies. Students are able to fulfill their internship requirements through the creation of "Population Presentations" that identify the population they were serving before the COVID-19 pandemic through a research-based

• project. Staff continue to interview and prepare for E4Texas 2020-

2021 through online application and interviewing. Staff will continue to provide online instruction until it is safe to meet in person.

Resources & Publications

COVID-19 Resources

• Promoting Financial Health and Resiliency for People with Disabilities and Their

Families During the COVID-19 Pandemic (Text)

• Coverage and Benefits Related to COVID-19 Medicaid and CHIP (Text)
• In-Home Virtual Care for Children with Complex Conditions During Social

Distancing (Video)

• Federal Policy Update on COVID-19 Response for People with Disabilities (Video)
• Webinar Series from Alliance for Health Policy
• HealthyChildren.org - COVID-19: Information for Families of Children and Youth

with Special Health Care Needs

• CSHCN Systems Development Group/Family Resources, Visit Our Website

COVID-19 Resources

Nemours Children’s Health Foundation

Navigating the Health Care System is a four-unit health literacy curriculum created for use with high school age students in classroom and community settings. It’s designed to prepare students to be responsible for managing their own health care as they transition to adulthood.

NEWLY ADDED! For families and teachers, Resources to Build Adolescent Health During Social Distancing:

• Home Use Version of the Navigating the Health Care System Workbook
• Owning Your Own Health Checklist
• Where To Get Care in a Pandemic (handout)

Available for free with registration (also free)!

COVID-19 Resources

COVID-19 Mental Health Support Line, Texas Health and Human Services 833-986-1919 (SEE HANDOUT) National Federation of Families for Children’s Mental Health - COVID-19 Resources for Parents, Families, and Youth: Tips, tools, and links for supporting teens & young adults The Child Mind Institute - Tips for Supporting Teens and Young Adults during the Coronavirus Crisis

COVID-19 Resources

UMASS Medical School Transition to Adulthood Center for Research – Resources and links for high school and college students, and their families including:

• COVID-19 Resource Hub
• Supporting Teenagers and Young Adults During the Coronavirus Crisis
• COVID-19 - Mental Health - Youth & Young Adults
• Supporting College Students with Mental Health Conditions in the Wake of

COVID-19 Download the slides HERE. View the Resources referenced HERE Implementation Science and Practice Advances Research Center (iSPARC), New Tip Sheet, Maintaining Your Emotional Wellness During COVID-19

COVID-19 Resources

• National Disability Institute’s COVID-19 Financial Resilience Center

includes information on:

• Federal stimulus funds
• Employment/unemployment
• Public benefits
• Money management
• Housing
• Food
• Healthcare and more!

Covid-19 - Archived Webinars

National Technical Assistance Center on Transition (NCTACT) Strategies and Resources for Students with Complex Support Needs in Distance Learning Environments – offers effective virtual and distance learning cross-system resources and

activities for students with complex support needs to achieve successful postsecondary outcomes

Instagram, Snapchat, TikTok and Beyond – Using Social Media for Peer to Peer Engagement – includes discussion on effective virtual and distance learning cross-system resources

for teenagers and young adults that promote self-determination/self-advocacy and support successful postsecondary outcomes

Covid-19 Upcoming Webinar

COVID-19 and the Impact on Communities of Color: Our Nation's Inequities Exposed May 20th, 1 pm – 2:30 pm CST

Register HERE

Got Transition

Publication, Journal of Pediatric Nursing, March – April, 2020, Outcomes of Pediatric to Adult Health Care Transition Interventions: An Updated Systematic Review Co-authored by Got Transition Co-Executive Directors & staff New Online Course for Providers on Transition, Health Care Transition for Adolescents and Young Adults CME, CEU available.

Texas Health Steps Online Modules

Just updated!

Transition Services for Children and Youth with Special Health-Care Needs Management of Overweight and Obesity in Children and Adolescents

Transition Resources -Sickle Cell Disease

National Institute for Health Care Quality (NICHQ), Four Solutions for Sickle Cell Disease Support: Advice from a patient and mother *Includes information on transition to adulthood health care support Improving Transitions in Care Saves Lives Sickle Cell Disease Association of America, Peer-to-Peer Mentoring Program supports youth/young adults transitioning from pediatrics to adult sickle cell disease (SCD) care. Sickle Cell Disease Coalition, Transition Toolkit

AHRQ Shared Decision-Making

Agency for Healthcare Research and Quality (AHRQ) The SHARE Approach – A five step process for shared decision-making that includes exploring and comparing the benefits, harms, and risks

• f each option through meaningful dialogue about what matters most

to the patient

PACER Center Self-Advocacy

How You Can Help Your Child Learn to be a Good Self-Advocate Ask an Advocate: Common Questions and Answers about Postsecondary Education- Topics include Laws and Rights, Admissions, Disclosure, Accommodations, and Supports & Disputes. Your IEP Meeting: A Great Place to Practice Self-Advocacy Skills Sample Self-Advocacy Plan

Employment Resources

The Texas Health and Human Services Commission (HHSC) Employment Guide for People with Disabilities Information regarding competitive, integrated employment for people with disabilities can be found on the HHSC Employment First website. Texas HHS video: Supporting Employment Goals for People with Disabilities

Transition Webinars - Archived

REACH for Transition webinar: Supported Decision Making, Part 3 https://drive.google.com/a/spanadvocacy.org/file/d/1qpSejcIw64y20MEzR20 JbByAw30IhfUr/view?usp=drive_web Introduction to Family-Governed Housing Cooperatives Link to recording, https://mfofc.org/housing-webinar-series/march- 2020-housing-webinar-archive-access/ Powerpoint, Exploring Individualized Services Handout, Cooperatives Housing and Personal Support Cooperatives

Transition Resources- Sharing Again

The Virginia Title V program developed free, web-based education modules

• n Transition and Medical Home:

Healthcare Transition for Youth & Family Healthcare Transition for Healthcare Providers The Medical Home for Healthcare Providers The Medical Home for Youth & Family Clinicians can take the modules and earn CME’s.

Transition Resources- Sharing Again

• Visit the…

National Resource Center for Supported Decision-Making Explore webinars, video series, articles, and people's stories; find forms and SDM model agreements; and learn the SDM and guardianship statutes in Texas. ABLE National Resource Center for all upcoming and archived webinars

Family Engagement

Family Support - Open Calls Every Wednesday at 11:00 a.m. via Zoom. Join TxP2P to discuss what is going on with you and your family and see if the TxP2P community can help with resources and ideas. Or, just hang out to connect with

• ther families. Register: https://us02web.zoom.us/meeting/register/tZMkcOCoqz0iHNFgRb7NWO7lsi-

CQnpoy1p8 Topic Call – Every Thursday at 2:30 PM Begins May 14th with Steven Aleman with Disability Rights Texas discussing Special Education Register: https://us02web.zoom.us/meeting/register/tZUudeyqqDIq73n2jxb4jYuVg6xfh0ssbA Call 737-484-9044 to reach the Family Support Program. Call 737-484-9045 to reach Pathways to

• Adulthood. Or, send an email to info@txp2p.org

If you know a parent who speaks Spanish who would be interested in attending the Spanish Family Call, please call Rosalba at 737-484-9044.

Texas Parent to Parent

Health Equity Resources

• NICHQ Articles
• Four Steps to Address Racism’s Impact on Maternal and Child Health
• Four Solutions for Sickle Cell Disease Support
• Racism and Public Health: Seeking an Improved Approach for the New

Decade

• NICHQ Recorded Webinars
• From Awareness to Action: Strategies for Combating Racism in Health Systems
• State of Health Equity Report
• This report examines both the progress - and the gaps - in addressing the

health disparities and socioeconomic factors influencing individual and community health and well-being.

Genetic Testing for Adults with IDD

Genetics of Adult Intellectual Disability Research Study

Scientists at Baylor College of Medicine are looking for adults ages 18 +, with intellectual disability who do not have an established genetic diagnosis (e.g. Down Syndrome, RETT syndrome) to participate in a genetic study. Please follow the link to the website for more information.

Next Meeting Dates & Adjourn

Medical Home Learning Collaborative July 15th, 10 am - 11:30 am CT Transition to Adulthood Learning Collaborative August 12th, 12 pm – 1:30 pm CT

Plea ease t se take t the he po post-call s sur

• urvey. W

. We e value y e your ur f feedb eedback! ivy.golds dstein@ds dshs. hs.texas.gov

Thank You!