The START Model: 30 Years of Addressing the Mental Health Needs of Individuals with Intellectual and Developmental Disabilities

September 4, 2018

Original START Team

The Original START Team.

The Center for START Services celebrated its 30th Anniversary earlier this year.

The IOD’s Center for START Services is the national headquarters for START, a nationally recognized, fidelity-based model. The Center consists of 18 staff, located at both UNH and across the US, that work with START programs and their network partners.  START (an acronym for Systemic, Therapeutic, Assessment, Resources, and Treatment) was founded in 1988 and first implemented in northeast Massachusetts in an effort to address the disparities in access to quality mental health care for people with intellectual and developmental disabilities (IDD).

Dr. Joan Beasley, the creator of the START model and Director of the Center for START Services, reflects fondly on the early days of START. “Like the current Center for START Services team, I had the opportunity to recruit talent from people I knew in my work prior to START. Our work was greatly influenced by Dr. Herb Lovett who consulted with many of us prior to START, along with Dr. Bill Gardner, a major influential authority in the field of IDD. The original team was made up of a director, four coordinators, a team leader, a part-time psychologist and Dr. Robert Sovner as our founding medical director. We carried paper crisis plans in binders in large cloth bags, beepers for on-call, and quarters for phone booths. We were a real team and had remarkable success.”

Following the establishment of the first START program and the publication of the first article describing the model in 1990, requests to learn about the strategies used resulted in members of the team providing consultation, technical assistance, and training in states across the country. In 2000, Dr. Beasley published the first study to identify trends in emergency service use over time by individuals receiving START Services from 1994-1998. The results suggested that over the course of four years, the individuals supported by START experienced far fewer crises, emergency respite visits, and psychiatric inpatient admissions. The Surgeon General’s report identified START as a model to overcome disparities in access to mental health care soon after.

Dr. Beasley continued her work as a private consultant and helped to develop TN-START, a pilot program in Chattanooga, Tennessee.  A second study was published several years later by the Tennessee DIDD following the implementation of the START model in 2004. This study compared average emergency service usage (and associated costs) of individuals with and without TN-START services. Not only did the results of this study suggest that individuals receiving START services had fewer emergency department visits and psychiatric hospitalizations, they also experienced far shorter lengths of stay than individuals that weren’t in the program, leading to a substantial reduction in average costs for services utilized. In 2005 the state of North Carolina learned about the success in Tennessee and became the first state to implement START statewide in 2006. Dr. Beasley provided technical assistance and training to ensure fidelity to START practices. Soon after Dr. Beasley began her work at the Shriver Center at UMASS Medical School until 2008, where she began her work to develop services in the state of Missouri.

In 2008, Dr. Beasley was invited to meet then IOD Associate Director Linda Bimbo and IOD Director Jan Nisbet to talk about their shared vision for a center within the Institute. With their support and direction, Dr. Beasley began her work and founded the Center for START Services (CSS) with Linda Bimbo at the IOD in 2009, which consisted of projects in Missouri, Connecticut and Virginia. The establishment of a Center within the IOD has been a key factor in the success of START’s expansion and progress towards becoming an evidence-based practice. Technological advances including video conferencing and our website helped us to share what we know and what we have to offer to others in need of this important service and training. To date there is statewide implementation of START in North Carolina, New York, New Hampshire, and Arkansas, with regional programs in Iowa, Texas, Colorado, and Virginia, and pilots in development in Oklahoma and Maryland. Other START partners include Hawaii and Georgia where training and professional learning communities were developed.

Center for START Services Team
The Center for START Services Team.

While START always collected and reported data, the databases used were rudimentary, and data sharing was difficult. The START Information and Reporting System (SIRS) was developed at the IOD in 2013. The original SIRS data elements were based on data points already collected by NCSTART and TNSTART programs and allowed CSS to measure fidelity requirements along with important information about START service users. As the programs developed and grew so did the SIRS database. All START network programs enter important de-identified health, demographic, and service information into the database for each individual that receives START services, along with information about the services provided. The information collected and analyzed provides an ongoing opportunity to review performance of individual programs, to test assumptions and improve services and strategies across the START network.

Important research has been conducted with the use of SIRS data to better inform a wider audience about how we as a country can build capacity for a community that is better informed to support people with IDD ASD and mental health needs. START’s ever-expanding network includes research partners at Johns Hopkins, Dartmouth Medical School, the Georgetown University UCEDD and Boston University.

The SIRS database currently contains information from over 7,000 individuals that have been enrolled in START programs, offering a rare opportunity to learn about the needs of people often ignored and isolated.  To date, four peer-reviewed publications have utilized SIRS data with more to come.

“Our most recent efforts have been toward better inclusion of the voice of service users in our policies and practices and a more proactive effort in the area of cultural and linguistic competency,” said Dr. Beasley. “We also have discipline-specific practice improvement groups so that the network can share and learn with their partners across the country.”

“It’s really the mission of the IOD that has allowed for the development and expansion of START. There has been a lot of ongoing support along the way. The support from Linda Bimbo and team at the Concord office, advances in communication technology, and the SIRS database have been key. None would have happened without the IOD.”

In May of this year, Dr. Beasley addressed the START Network at the 3rd Annual START National Training Institute in Boston in an opening keynote focused on the 30th anniversary of the model.

“What is incredible about the past 30 years is that process and pace was slow enough that I had the opportunity to work with hundreds of remarkable people along the way. When I looked around the room, I realized I actually knew about 90% of the people there. It was quite an experience for me. Each program, each coordinator, each person and family served has a story, and they all came back to me as I prepared for the presentation. It was a wonderful experience.”

When asked what she thought were the greatest accomplishments of START since its development in 1988, Dr. Beasley replied, “One, we now have evidence that inclusive, positive, strength-based interventions in the context of a tertiary care approach works; two, as our methods have improved, the impact for people has been expedited- what once took three years to achieve can happen in a year; and three, we have built the foundation for an inclusive community of practice- the more we collaborate and listen the more we learn and grow.”

“The great thing about START is that it is not about a plan; it is about the opportunity collaboration brings you,” said Dr. Beasley. “It is about collective vision and experiences along the way. There is great joy in this work. This is a major reason for our expansion.”

Visit the Center for START Service website to learn more about the START model, START program locations across the country, the START National Training Institute, and ongoing research initiatives.