A Note from Executive Director Julie Lago
As I reflect on my first full year as Executive Director of the National Center for START Services®, I am filled with gratitude for the people and relationships that make this work possible and hope for all that is ahead.
This year has been one of listening and reflection, learning and growth, and collaborative planning. While I have been connected to START for many years, stepping into this role has given me an even deeper appreciation for the strength of our teams, the dedication of our network, and the impact of the people, families, and community partners who bring the START mission to life every day.
What I am most proud of this first year is the connection we have built and strengthened, within NCSS, across the START network, and with the broader community we serve. I have had the opportunity to better understand the experiences, strengths, challenges, and evolving needs of our network. That listening and learning is helping us create a stronger foundation for the strategic initiatives ahead.
The data in this report tells an important part of that story. We care about these numbers because they represent people. The numbers are only part of the story. This year, we began our START Stories series because we believe data becomes more meaningful when we hear the stories behind it. We spoke with Marcus Appolon of Temple University's Health Crisis Center and Shelley and Bubby, a mother and son whose lives were improved by Tennessee START. These stories brought us back to the “why” behind the data.
As we look ahead, our responsibility is not simply to grow START. It is to ensure that START continues to evolve thoughtfully alongside the people and communities we serve. The listening, relationship-building, and reflection of this past year have helped us better understand where we are and begin to envision where we need to go next.
Most of all, it means holding hope. Hope is something we put into action through the relationships we build, the communities we strengthen, and our continued belief that people with IDD and mental health needs deserve to belong, to be supported, and to thrive in their communities.
I am deeply grateful to the NCSS team, our START teams across the country, people with lived experience, families, and our community partners for the trust, dedication, and partnership you bring to this work every day.
There is much to come for NCSS and the START network, and after this first year, I am more certain than ever that we are stronger when we do it together.
START Stories
The Power of Networking Across the START Network (with Marcus Appolon)
From Surviving to Thriving: How UNH-Led START Program Changed One Family's Life (Shelley and Bubby)
In the News
Opinion-Editorial in the New Hampshire Bulletin, December 2025:
Mental health needs of people with intellectual and developmental disabilities can’t be ignored
Partnership Building
Julie Lago, Beth Grosso, and Stephanie Mote at the Link Center Steering Committee annual meeting in Washington, DC on October 8-9, 2025.
Beth Grosso and Julie Lago at the Advocate NH event hosted by ABLE NH on October 17, 2025.
Julie Lago with US Senator for New Hampshire Maggie Hassan in Washington, DC for the Disability Policy Seminar in March 2026.
By the Numbers
At NCSS
- 633 participants in the IDD-MH Professional Development Series
- 84 START Coordinator Certifications (Initial)
- 41 START Coordinator Certification Renewals
- 261 Total Certified START Coordinators
- 521 Total Active START Team Members
- 26 Certified Programs
- 33 Total START Programs
Across the START Network
- 4,620 crisis responses with 85% resulting in the person served remaining in their community setting
- 4,357 people with IDD-MH served across 33 programs in 11 states
- 1,320 children (30%)
- 3,037 adults (70%)
- 70% of children and 69% of adults served showed a reduction in mental health symptoms
National Service Outcomes
Emergency Service Utilization
Distribution of Crisis Contacts
Improvement in Mental Health Symptoms
According to the Aberrant Behavior Checklist (ABC).
| Any Improvement | Hyperactivity | Irritability | Lethargy |
Children (n=683) | 70% | 66% | 67% | 58% |
Adults (n=2,030) | 69% | 66% | 68% | 61% |
START Population Demographics
Age
Mean Age (min-max) | 25 (5-74) |
Mode Age | 16 |
Median Age | 22 |
Gender
Female | 32% |
Male | 67% |
Non-Binary/Questioning | 1% |
Prefer not to answer | < 1% |
Other Characteristics
- 65% live with a family (61%) or an alternative family (4%) caregiver
- 78% have a neurodevelopmental disorder (not including ID)
- 72% have a diagnosed psychiatric condition
- 72% have chronic medical conditions
Race/Ethnicity
American Indian or Alaskan Native | 1% |
Asian | 4% |
Black or African American | 17% |
Hispanic or Latino | 16% |
Middle Eastern or North African | 1% |
Native Hawaiian or Pacific Islander | < 1% |
White | 52% |
Two or More Races/Ethnicities | 9% |
Prefer not to answer | 1% |
Emerging Trends
- Steady decrease in average age of START enrollees
- Autism Spectrum Disorder increased significantly, 17% to 60%
- Gastrointestinal and sleep issues increased
- Anxiety trending up
FEIS and PEIS Updates
The Person Experiences Interview Survey (PEIS) was implemented in the summer of 2024. The PEIS was adapted from the Family Experiences Interview Survey (FEIS) first developed in the 1990s.
While the FEIS collects information on the family and caregiver experience with mental health services, the PEIS is the first tool of its kind that allows people with IDD to provide direct feedback on the mental health services they receive.
Both the FEIS and PEIS are administered at enrollment in START services (to assess experience pre-START) and after one year of START services (to assess changes post enrollment).
For caregivers with at least two FEIS assessments (n=256), more than two-thirds (64%) reported improvement in their experiences after enrollment in START.
For START enrollees with two PEIS administrations (n=86), early results are quite promising. Fifty-seven percent of START recipients reported overall improvement in their mental health experience.
These preliminary findings highlight the importance of elevating the voices of people with lived experience in treatment decision-making, where meaningful participation reflects the values of START.
START Network Expansion
START Program Launches
The New Jersey START Program, operated by YAI, launched in October 2025.
The Philadelphia START Program, operated by JEVS, launched in February 2026.
New Programs in Development
- California Westside Regional Center, program operated by Line of Hope
- California Far Northern Regional Center, program operated by Turning Point
- California Orange County Regional Center operated by Easter Seals
- Kansas (Sedgewick County) program operated by Mental Health America of South-Central Kansas (This initiative is being funded through a Rural Health Transformation grant)
- The Montana Department of Public Health and Human Services is in the RFP process to select the START provider.
START Programs Certified
- New York (OPWDD) Region 2 - April 2026
- New York (OPWDD) Region 3 - April 2026
- Idaho (Department of Health and Welfare) - June 2026
- California North Bay (Turning Point) - August 2025
- California Golden Gate (YAI) - August 2025
- California Redwood Coast (YAI) - February 2026
- California Valley Mountain (YAI) - August 2025
- California Lanterman (YAI) - September 2025
- California Harbor (YAI) - September 2025
Training and Professional Development
2026 START National Training Institute
Original artwork by Megan Miller, created through the Mind's Eye program at Community Partners of Strafford County, NH, for the 2026 START National Training Institute.
Values in Action: Holding Hope, Building Belonging | Virtual
The 2026 START National Training Institute (SNTI) highlighted how values come alive across our network. The theme, Values in Action: Holding Hope, Building Belonging, reflects our commitment to creating environments where people with intellectual and developmental disabilities and mental health needs (IDD-MH), their families, and their supporters feel connected, valued, and supported.
- 465 total participants
- 35 states represented plus Canada
- 52 presenters
- 5 research posters
- 94.7% overall satisfaction rating
National Online Training Series
The National Online Training Series (NOTS) on the Mental Health Aspects of Intellectual and Developmental Disabilities is an annual series designed to provide innovative and topic-focused online training to community members that support persons who experience IDD and mental health needs.
- 8 live sessions, 16 hours of training
- 2,296 total subscribers
- 754 total participants in live sessions
- 98.6% satisfaction rate
"[These] trainings are essential to educate and improve the skills of agencies, staffs, individuals, communities to improve service delivery for Individuals with DD-MH"
"This was THE best NOTS - our team has continually utilized this material to talk, conceptualize and feel very supported by this training! Please keep bringing lived experience presenters and how we can best support vulnerabilities from a lived experience perspective."
Learn more about the 2025-2026 NOTS
New Well-Being Webinars
Well-Being Webinars are free, live, one-hour, fully experiential sessions grounded in NCSS's values of compassion and belonging. Designed as an intentional space for people across the IDD-MH community to pause, connect, and restore, these webinars promote well-being through practices rooted in positive psychology, PERMA+, trauma-informed care, and strengths-based approaches. Through practical strategies, shared stories, and interactive experiences, participants are invited to cultivate joy, balance, resilience, and whole-person well-being.
By investing in the well-being of professionals, caregivers, self-advocates, and community members, we strengthen the capacity of the broader service system to reduce crisis, foster connection, and create environments where people and communities can truly flourish.
273 participants across 4 live sessions
- December 10, 2025: The Value Principal: Disability as an Asset with Chris Hendricks
- January 28, 2026: Are You Okay? The Science of Managing Stress with Laughter with Dr. Matthew Wappett
- March 4, 2026: A Different Way of Thinking with Cody Clark
- June 10, 2026: Accessible Yoga for All with Karen Russell and Miranda McCarthy
Learn more about Well-Being Webinars
IDD-MH Professional Development Series
The mission of this series is to increase the competence and confidence of professionals to provide effective services, support, and treatment to people with IDD-MH and their families through evidence-informed instruction and best practices. While each course is designed to address professionals serving within a specific role, a diverse group of professionals have benefited from content across these courses. These four courses are offered twice a year in the fall and spring for a total of eight cohorts.
- 633 participants combined across all eight cohorts
- 195 in Direct Support Professionals Course
- 71 in Therapists and Counselors Course
- 199 in Care Coordinators and Case Managers Course
- 168 in Mobile Crisis Responders Course
- Total of 79 hours of instruction (across eight cohorts)
- Overall (cumulative) course satisfaction 94.7%
New in 2025: Therapists and Counselors Course
"This was a great course and should be recommended to all mental health providers to better support the diverse population of clients we serve."
Learn more about the PD Series
Other Partnerships
NCSS works alongside organizations across the country to build capacity and improve well-being of people with IDD and mental health needs. The examples below illustrate the reach and results of some of our recent training partnerships. These partnerships can include the IDD-MH Professional Development Series, the National Online Training Series, Professional Learning Communities, Practice Groups, Technical Assistance, and more.
New York (AccessCNY): 4 AccessCNY staff received certification in START-informed practices
Maine (Office of Aging and Disability): 2 OADS staff received certification in START-informed practices
Washington (Wellpoint): START-informed Technical Assistance
Texas (MHMR of Tarrant County): Certificate in START-informed practices
UCEDD Collaborations
As a program of the Institute on Disability, New Hampshire’s designated University Center for Excellence in Developmental Disabilities (UCEDD), NCSS takes pride in its collaborations across the national UCEDD network.
LEND Clinical Placements (Georgia State University LEND & NH-ME LEND)
Tailored, immersive 40-hour placements for LEND trainees integrating on-demand training, expert mentorship, and exposure to START model practices through multiple forums and formats.
Utah MHIDD Training Initiative Grant (Utah State University’s Institute for Disability Research, Policy & Practice/UCEDD)
- Access to NCSS’ IDD-MH Professional Development Courses for DSPs and Care Coordinators/Case Managers
- NCSS representation on the training project’s Advisory Board
- Co-development and facilitation of “Mental Health & You” workshops for people with IDD, their families and supporters offered to Utahans
National Presentations
42nd annual NADD conference in Minneapolis, MN
Dr. Emaya Anbalagan, Dr. Katy Stratigos, Dr. Jill Hinton, and Dr. Jen McLaren at the AACAP25 annual meeting in Chicago
NCSS Clinical Director Jill Hinton, PhD presented at the Autism Society of San Diego and met up with the California START San Diego team.
Jenee Lewis-Walker, PsyD, presented at the Imagine Autism Conference in Albuquerque, NM in May 2026.
