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December 13, 2019
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National Leaders in the Mental Health Aspects
of Intellectual and Developmental Disabilities
START Newsletter Fall 2019
Director's Welcome

Season’s greetings from New England, winter wonderland!

This has been a spectacular year of growth and innovation. We are delighted to report that the Center for START Services is now working directly with representatives from 25 states across the US  and the District of Columbia. We are also very grateful to be collaborating in our efforts with international partners from the UK and Canada.
 
Thank you all for all that you do in this effort to improve the lives of children and adults with IDD and mental health needs and their families.
 
Wishing all peace and joy in the year to come. 


Joan B. Beasley, PhD
National Research Consortium on MHIDD Inaugural Meeting Held



On October 10th, 2019 the Center for START Services held its inaugural meeting for the National Research Consortium in Mental Health in Intellectual and Developmental Disabilities (MHIDD) at the Kennedy Krieger Institute in Baltimore, Maryland. The mission of the Consortium is to advance research in best practice and policy to promote well-being in people with MHIDD.

The Director of the Consortium is Joan B. Beasley, Ph.D., Research Associate Professor at the University of New Hampshire and Director of the Center for START Services at the UNH Institute on Disability/UCED. The Consortium Chair is Luke Kalb, PhD, Assistant Professor at the Kennedy Krieger Institute and John’s Hopkins University, and the Director of National Consortium Operations is Andrea Caoili, LCSW, Director of Research and Quality Assurance at the Center for START Services at the UNH Institute on Disability/UCED.

The National Research Consortium on MHIDD is comprised of people with lived experiences (including self-advocates and family members), caregivers, trainees, researchers, policy experts, and clinicians from over 30 organizations across the US including several UCEDDs, medical schools, state health departments, and service providers.


The day began with keynote speaker, Dr. Yona Lunsky, Director of the Azrieli Adult Neurodevelopmental Centre and Professor in the Department of Psychiatry at the University of Toronto. Dr. Lunsky gave an inspiring talk about how to engage in evidenced-based programs (EBPs) in MHIDD with examples from around the globe, with respondent Dr. Angela Hassiotis, professor in the Division of Psychiatry at University College London, who provided a brief overview of work taking place in the UK. Each of the sponsoring members of the Consortium discussed their vision for our work together. The remainder of the day was spent in roundtable breakout sessions, each focused on one of six top priority areas identified by Consortium members: advancing EBPs, services and linkages, trauma informed care, crisis interventions, advocacy, and integrated care.

The day concluded with strategic planning incorporating specific projects that draw on the Consortium’s considerable expertise to address the identified areas of focus. Next steps are underway and include reviews for potential projects discussed during the inaugural meeting. The Consortium will pursue at least 2 research projects during the upcoming calendar year.


To learn more about the National Research Consortium on MHIDD, and for a complete list of members visit the National Research Consortium on MHIDD page on the Center for START Services website or email us at IOD.mhidd@unh.edu.
Welcome to the START Network
California START - San Andreas and San Diego
Under the leadership of the CA Department of Developmental Services and in collaboration with CSS, implementation of the START model has begun in California, with two regional programs serving as the initial pilots. The pilots will provide data for evaluation and will inform implementation next steps. The San Diego START team is overseen by the San Diego Regional Center, located in the north portion of SD County, and is operated by Exodus Recovery Services. The San Andreas START team is overseen by the San Andreas Regional Center, located in San Jose, and is operated by YAI. Each team consists of a Program Director, Clinical Director, Medical Director, 4-5 START coordinators, and 4 therapeutic coaches. The programs, which serve children and adults, are integrating positive psychology assessment, observation, and therapeutic coaching at intake. This innovative practice will inform us about new and creative ways to integrate coaching with START coordination.
Rhode Island
CSS is working with the Rhode Island Department of Behavioral Health Care, Developmental Disabilities and Hospitals (BHDDH) to conduct an analysis on mental health and crisis services for people who experience IDD in the state. This comprehensive study combines data from an online community survey, targeted focus groups and telephone interviews with family caregivers. The goal of the study is to determine where the service system is working well for individuals with IDD and mental health needs, what services could be improved, and where there are gaps in existing services. Data collection for this analysis is underway and expected to wrap up in December 2019 with a full report and list of recommendations for enhancing and improving services in March 2020.

In addition to the service system analysis, a Professional Learning Community (PLC) with Rhode Island stakeholders began in September and concluded this week. The purpose of the PLC was to educate participants about the START model, facilitate discussion about how the START model may fit into the existing systems of care, and determine whether START is a good fit for the state. This has been one of the most well-attended stakeholder PLCs to date; multiple stakeholders representing families, providers, hospitals, crisis responders, and BHDDS consistently attend and actively participate. It has been very exciting to meet and talk with this group and to learn more about Rhode Island supports and services for people with IDD and mental health needs.
Georgia
Following a service system analysis and several months of planning and collaboration with Georgia’s Department of Behavioral Health and Developmental Disabilities (DBHDD), CSS has delivered a series of training programs to meet the professional development needs of MH/IDD professionals in the state of Georgia. Training programs have included 7 regional daylong on-site MHIDD trainings, 2 daylong on-site MHIDD trainings for medical providers, 4 PLCs focused on the needs of child and adolescents with MHIDD, and a 20-session online group consultation and training program for mobile crisis responders.
AUCD logo



AUCD Mental Health Aspects of I/DD Special Interest Group

AUCD Special Interest Groups (SIGs) are made up of individuals from UCEDDs, LEND and AUCD programs that have common topical interests. SIGs, which are open to anyone in the network as well as external partners and stakeholders, serve as a mechanism for sharing information, engaging in respectful dialogue, and generating new ideas. The AUCD Mental Health Aspects of I/DD Special Interest Group (MH SIG) at AUCD provides training and information to Network members on critical issues related to mental health for people with intellectual and/or developmental disabilities. The MH SIG is co-chaired by CSS Director, Joan B. Beasley, PhD, and Diane Jacobstein, PhD, from Georgetown University Center for Child and Human Development/UCEDD. 

Each year, the group hosts a webinar series and quarterly meetings.  An archive of prior presentations hosted by the MH SIG and resources about MHIDD can be found on the AUCD website.

The following was the group’s 2019 Vision Statement: In an effort to promote belonging for all people with IDD and mental health needs, the MHIDD SIG of AUCD will survey and incorporate practices to promote cultural and linguistic competency within our SIG and in our trainings to the AUCD community. This requires close attention to policies and practices that acknowledge cultural identity and promote access to education, support, treatment and community life, and address the structural barriers many face in our society. In the coming year, we will explore how inclusion for all can be enhanced through this process.


Pictured above: MH SIG Co-Chairs Joan B. Beasley, PhD, and Diane Jacobstein, PhD, with AUCD's Luis Valdez, MPH.

The MH SIG met last month at the National AUCD conference to review the 2019 mission statement and develop goals for 2020. This year the MH SIG will be collaborating with other members of the AUCD community to focus on the stigma faced by people with mental health needs and or IDD in relation to gun violence. Additional meetings are held on Zoom and hosted by AUCD throughout the year.
To learn more, or if you are interested in joining the MH Aspects of IDD SIG, please attend the annual meeting at the AUCD conference or contact Luis Valdez at AUCD: lvaldez@aucd.org. You can also use this link to subscribe to the MH SIG list serve.
START Artist's Painting Featured in 2020 IOD Calendar

For the past 20 years, the UNH Institute on Disability has produced beautiful, full-color calendars featuring 13 original works of art coupled with inspirational quotes. This year, we are excited to announce that for the first time, one of the works chosen was painted by a member of the START network in North Carolina, Tiffany Copeland. The painting, titled "The Social," is coupled with the following quote by Liz Fosslien and Mollie West Duffy: "Diversity is having a seat at the table, inclusion is having a voice, and belonging is having that voice be heard." 

These IOD calendars are available for sale in the IOD Bookstore.



About the Artist: Tiffany Copeland lives in Kinston, NC. She is from Edenton, NC where her mother and 3 sisters still live. Tiffany loves to draw and write poetry. She enjoys animals, music, volunteering in her community and helping others. Her top character strengths are creativity, humor, kindness, love and spirituality.
Order the 2020 IOD Calendar

START Plan Version 2 Launch

The START Action Plan Version 1, known as the START Plan, was initially developed by the New Hampshire START program as a service utilization and billing tool. The START Plan was designed to identify the projected clinical and systemic needs of a person, as well as the type of START services and time required to complete those services, in order for the individual to achieve stability.  In 2014, modifications were made to the START Plan for national use and all START programs use it for caseload planning.
 
In November 2017, a workgroup was formed to review the START Plan and recommend revisions to improve the validity and reliability of the tool.  Best practices in mental health assessment, quantitative measurement development, and START interventions were utilized during this process. The START Plan was revised and piloted in the state of North Carolina, where three nationally certified START programs operate services. Intakes and outreach visits were completed by START coordinators and a member of the national workgroup to test clinical utility, inter-rater reliability and validity. Data from this pilot was analyzed and preliminary findings support the reliability and validity of the revised START Plan Version 2 (START Plan 2). 
 
The START Plan 2 is a semi-structured assessment tool. It is designed to: 1) evaluate the stability of an individual with intellectual/developmental disability (IDD) and a co-occurring behavioral health concerns, and 2) measure the capacity of the formal and natural support systems available to meet their needs. The purpose of the assessment is to guide the selection of START services, promote optimal outcomes for the individual and their system, and track changes in clinical needs and service outcomes over time.

Efforts to build the START Plan 2 into the SIRS database began in June 2019 with CSS officially launching the START Plan 2 in October, 2019.


All START programs will fully transition to the use of this revised tool by February 2020.  The revised tool provides START teams an opportunity to enhance the quality of comprehensive, biopsychosocial, objective assessment and planning procedures for START staff. 

 
WITH Foundation Grant Updates

The Center for START Services has been awarded a grant from the WITH Foundation to work in collaboration with prescribers, family members and service users to develop Holistic Best Practice Prescribing Guidelines in MH/IDD for Healthcare Providers.

The Holistic Best Practice Prescribing Guidelines in MH/IDD for Healthcare Providers will include a comprehensive reference list of resources for best practices and provide key information aimed toward holistic, inter-disciplinary, integrated approaches for effective mental healthcare for people with IDD. Our goal is to engage at least 100 prescribers across the nation to pilot and provide feedback on the developed guidelines. Participants in this study will make a major contribution to the final version of the Best Practice Guidelines. Once completed, these guidelines will be made widely available. For more information or to be part of this study, please contact Andrea Caoili at andrea.caoili@unh.edu.
Invited Presentations
  • On November 19th, Dr. Joan B. Beasley presented at the 2019 AUCD Conference in Washington DC with Tawara Goode, Director, Georgetown Center for Child and Human Development/UCED and Mary Lou Bourne, Chief Quality and Innovation Officer, NASDDDS. Their Tuesday afternoon session explored the convergence of positive psychology, cultural and linguistic competence, and person-centered Thinking in practical applications to support people with co-occurring developmental disabilities and mental health concerns.
  • Dr. Jill Hinton presented with Cheryl Karran and Jeff Darling at the 2019 Bay Area Adult Autism/DD Conference at Stanford University about START implementation at the San Andreas Regional Center on November 16th.
  • Several members of the START national team presented at 36th Annual NADD Conference held in New Orleans in October:
    • Lauren Charlot, LCSW, PhD, Andrea Caoili, LCSW, and David O’Neal, MS, LMHC, presented a well-attended breakout session entitled, "Positive Psychology, IDD and Promoting Mental Wellness."
    • Dr. Charlot led a breakout session "Psychopharmacology in IDD" with Andrea Caoili, offering context regarding the role of START and its focus on promoting best practices in prescribing.
    • L. Jarrett Barnhill, MD, CSS Medical Adviser, presented "Traumatic Brain Injury (TBI), IDD, and Psychopathology."
    • Dr. Charlot and Andrea Caoili presented a research poster authored by Drs. Charlot, Weigle, and Holingue titled "Medical & mental health conditions of individuals with IDD with and without Down Syndrome" and won the conference poster session award for the second consecutive year.
  • NYSTART was included in a National Core Indicators brief "What Do NCI Data Reveal About People Who Are Dual Diagnosed with ID and Mental Illness?" published in October.
  • Dr. Joan B. Beasley was invited to present at the Rutgers Boggs Center as part of the Fall 2019 Developmental Disabilities Lecture Series in September - her presentation was titled “Addressing the Mental Health Needs of Individuals with IDD and Their Families: The START Crisis Prevention and Intervention Program.”
  • Dr. Jill Hinton presented an AUCD webinar on violence and mental illness for MH IDD SIG on September 26th - view the archived version of this webinar.
  • In June, Dr. Joan B. Beasley and Dr. Stefanie Griffin presented a keynote at the 2019 Direct Support Professionals Conference hosted by the NH Council on Developmental Disabilities – the conference theme was “Diversity, Diversity, Diversity.” Dr. Beasley’s keynote focused on culturally aware direct support for people with MHIDD.
  • Drs. Joan B. Beasley & Karen Weigle presented a poster on START research initiatives during the Health & Behavioral Health Poster Symposium at the 2019 AAIDD Annual Meeting in St. Paul in June.
North Carolina START Program Innovations
This past year, NC START programs made a commitment to focus on capacity building efforts in their local communities and statewide. They launched a series of initiatives to address the need for training and outreach on the MH aspects of IDD in their state. These initiatives included...

NCSTART Statewide Conference
On June 5, 2019, NC START hosted its first annual statewide conference, sponsored by CSS.  Over 250 people attended the one-day event themed “Supporting the Whole Child through Community Partnerships in Treatment of Children with IDD and Behavioral Health.” Keynote presenters, Tawara Goode and Wendy Jones, cultural and linguistic competency experts from Georgetown University’s National Center for Cultural Competence discussed the impact culture plays in service delivery for those with MHIDD and their families. There were also a series of breakout sessions that were well attended throughout the day and covered a range of topics such as positive psychology, psychopharmacology, trauma informed care, and parent perspectives. 
 
Community of Practice Launch
NC START launched communities of practice involving professionals from across the state from six disciplines: psychiatry, nursing, psychology, mental health outpatient, care coordination and education. The launch was sponsored by CSS and was a one-day event, held in Raleigh. Professionals from across the state came together to participate. These communities are facilitated by START team members and one or more community partner and are designed to build capacity across the system. A community of practice (CoP) is defined as a group of professionals within a common discipline who share an interest or passion for something and a desire to interact and learn with one another (Wegner, 2002). A START CoP operates from the same overarching interest and mission as other START capacity-building and training initiatives (ie: Professional Learning Communities): to improve the lives of individuals with IDD and mental health needs through the sharing of information and collective learning.


Wenger, E., McDermott, R. A., & Snyder, W. (2002). Cultivating communities of practice: A guide to managing knowledge. Harvard Business Press.
 
Systems Leadership Training for Trainers

Over 20 START staff participated in a one-day training for trainers workshop facilitated by Dr. Joan B. Beasley on leadership practices in MHIDD. The training initiative was designed to develop and train NC START staff to conduct leadership workshops for residential, day program managers, school personnel (principals, guidance counselors, school social workers) and other key stakeholders. The aims of the project were to develop the leadership skills of START staff, develop a network of stakeholders who partner with NC START to address leadership challenges across systems that serve children with MH/IDD on an ongoing basis and to improve overall outcomes and quality practices to support those with MH/IDD and their families. Each program identified a lead trainer (or trainers) for this initiative and they meet regularly as a statewide team to discuss the training curriculum, develop additional training content and learn from one another. The programs will be offering this training to their network of providers in FY2020.
START Coordinator & Program Certifications
Congratulations to all START Coordinators certified since our last newsletter!

Achieving the rigorous training and practice standards set by the Center for START Services, as part of the well-respected Institute on Disability/UCED at UNH, verifies fidelity to the mission, values, principles and approaches utilized within the START model. Additionally, certification validates expertise and specialized knowledge in the field of MH/IDD. Being a certified START coordinator affords opportunities to contribute to the broader field through valuable practice evaluation and networking opportunities.

 
Larissa Majstorovic - NC START West
Deb Connelly - NY START Region 1
Amber Peel - NC START West
Oruada Oruada - NY Region 4 - YAI
Melissa Dalton - Oklahoma
Eric London - Oklahoma
Barbara Williams - NY Region 1
Kelsie Adkisson - NC START Central
Tracy Augustin - NC START Central
Melanie Moore - Oklahoma
Taylor White - NC START East
Cathleen Schultz - NC START East
Christina Cruz - Colorado - STRIVE
Heather Currier - NY Region 1
Sharon Jacksi - Colorado - STRIVE
Samantha Gray - NY Region 1
Caitlin jones - NH START
Lisa Gelin - NY Region 4 - SUS
Lisa Hengge - NY Region 5 - Suffolk
Jaclyn Turley - NY Region 1
Chantel Diamond - NY Region 4 - SUS
Calvin Muza - NY Region 4 - YAI
300th Coordinator Certified
Deb Connelly was the 300th START Coordinator to achieve certification.

"What an honor to be the 300th Certified START Coordinator! I am very proud to work with such a wonderful supportive team here in Buffalo. The work we are doing here in Region 1 is so inspiring and I am blessed to be a part of START. And finally CERTIFIED!"
 
NY START Region 3 achieved its 1 year a Certification as a START Clinical Team in June
NC START East's Program Certification was renewed for 1 year in September
NC START Central's Program Certification for 1 year was renewed in October
NC START West's Certification was renewed for 2 years in December
Thank you for reading,

The Center for START Services

 
Registration opens in January
For the 2020 START National Training Institute in Austin, Texas

Reserve your hotel room online at a special room block rate.
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Institute on Disability at the University of New Hampshire