Intro
This report covers an 18-month period from January 2024 through June 2025.
By the Numbers
At NCSS
- 83 START coordinator certifications and 35 renewals for a total of 695 certified coordinators
- 17 programs certified for a total of 31 programs
- 4 system evaluations completed (Louisiana; Philadelphia, PA; Arizona; Sedgwick County, KS)
Across the START Network
- 5,619 crisis calls resulting in 84% of people remaining in their community setting
- 4,853 people with IDD-MH served across 31 programs in 11 states
- 1,679 children (36%)
- 2,913 adults (64%)
- 69% of adults and 71% of children 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 | Irritability | Lethargy | Hyperactivity | |
| Adults (n=2030) | 69% | 64% | 54% | 62% |
| Children (n=1112) | 71% | 63% | 54% | 62% |
START Population Demographics
Age
| Mean Age (min-max) | 24 (5-83) |
| Mode Age | 17 |
| Median Age | 21 |
Gender
| Female | 32% |
| Male | 67% |
| Non-Binary/Questioning | 1% |
| Prefer not to answer | 0% |
Other Characteristics
- 65% live with a family (61%) or an alternative family (3%) caregiver
- 72% have a neurodevelopmental disorder (not including ID)
- 69% have a diagnosed psychiatric condition
- 68% have chronic medical conditions
Race/Ethnicity
| American Indian or Alaskan Native | 1% |
| Asian | 5% |
| Black or African American | 17% |
| Hispanic or Latino | 16% |
| Middle Eastern or North African | 0% |
| Native Hawaiian or Pacific Islander | 0% |
| White | 51% |
| Two or More Races/Ethnicities | 7% |
| Prefer not to answer | 1% |
Introducing the PEIS
The Person Experiences Interview Survey (PEIS) (Kramer, et al., 2024), implemented in summer 2024, was developed as part of the research study "Evaluation of Telehealth Services on Mental Health Outcomes for People with Intellectual and Developmental Disabilities" (PI Beasley).
The PEIS was adapted from the Family Experiences Interview Survey (FEIS) first developed by Tessler and Gamache (1996). The PEIS allows people with IDD to provide direct feedback on the services they receive. Evaluating family/caregiver and user experiences through these tools is important for identifying strengths and gaps in mental health service delivery.
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). The hope is that the linkage and system work at the core of START services will improve user/family experiences with mental health services over time.
Preliminary data suggest that most people experience positive change in their involvement with the mental health system.
- 70% of caregivers and 60% of START enrollees who did both a pre and post enrollment assessment reported overall improvements in their experiences with mental health providers.
- The percentage of caregivers who reported that caring for their family member with IDD-MH was very or somewhat difficult over the past year decreased by over 14% between the pre-enrollment (83%) and post enrollment (71%) administration.
START Network Expansion
Five START teams earned their national program certification in 2024-2025. Certification means that START teams provide full crisis prevention and intervention services for people with IDD-MH in their communities with fidelity to the START model.
California START South Central Los Angeles
Tennessee START
California START Central Valley
Denver START
California START East Los Angeles
Training and Professional Development
2024 START National Training Institute
Building Resilience Through Systemic Collaboration | Philadelphia, PA
- 259 total participants
- 26 states represented plus Washington DC and Canada
- 68 presenters
- 31 research posters
- 93% overall satisfaction rating
“This year’s SNTI was the best that it has ever been...Please continue to grow in this direction of centering the voices of individuals with lived experiences and connecting with other community partners who are doing innovative work in this field.”
2025 START National Training Institute
The Stories of START | Virtual
- 502 total participants
- 29 states represented plus Mexico
- 52 presenters
- 8 research posters
- overall satisfaction rating
"The structure and topics were wonderful.”
START Coordinator Curriculum Updates
The START Coordinator Curriculum equips START team members with the knowledge, skills, and tools needed to implement the START model effectively, focusing on the mental health aspects of IDD. The curriculum pairs asynchronous (on-demand) training consisting of pre-recorded training modules with synchronous (live, virtual, interactive) training through Coordinator Training Groups.
In January 2025 we launched the first comprehensive overhaul of the curriculum since NCSS was founded in 2009. The updates ensure the curriculum remains relevant, engaging, and effective for preparing START Coordinators to support people with IDD and mental health needs and their families.
Guiding Principles
- Evidence-informed practice: Content is reviewed and updated at least every two years and adapted in response to research and evaluation findings.
- Adult learning best practices: Prioritizing concise, engaging presentations with a strong focus on practical application and learner-centered engagement.
- Universal Design for Learning (UDL): Ensuring accessibility and flexibility to meet the diverse needs of trainees.
Key Updates
- Transitioned to a new learning platform (Canvas) with refreshed content and shorter training videos (most 20 minutes or less)
- Streamlined Coordinator Training Group duration from 19 weeks to 15 weeks
- Diversified the presenters, engaging a wider range of NCSS staff to reflect the depth and breadth of organizational expertise
- Emphasized application over theory to improve practical learning
- Shifted emphasis from asynchronous assignments to interactive, application-based learning experiences
2024-2025 National Online Training Series
This series is designed to provide innovative and topic-focused online training to community members that support persons who experience IDD and mental health needs. Pre-recorded trainings from this series are released once a month to the START Network and other partners from September through April. Live, virtual Q&A sessions are held with each month’s presenter on the Friday following the release of the training.
- 9 sessions totaling 17 hours of training
- 2,099 subscribers
- 990 attendees
- 99% overall satisfaction rating
“The information was fantastic, but it's particularly helpful that so many new resources have been made available to us through the tools shared, links in the slides, etc. I think many people we work with will benefit from the tools that were shared.”
IDD-MH Professional Development Series
This series is open to all; no pre-requisites or START program affiliation required!
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. The series consists of three virtual courses for Care Coordinators and Case Managers, Direct Support Professionals, and Mobile Crisis Responders. A fourth course for Therapists and Counselors will be added in Fall 2025.
- 2,080 participants combined across all three courses
- 809 in Care Coordinators and Case Managers Course
- 937 in Direct Support Professionals Course
- 334 in Mobile Crisis Responders Course
- Total of 136 hours of instruction
- Participants reported more than 50% increase in self-rated abilities following each course.
- Overall satisfaction 97%
“This [Direct Support Professionals] training has opened my eyes to viewing different behaviors as a whole and has challenged me to change my perspective and be more curious.”
“Thank you so much for this [Care Coordinators and Case Managers] training. There was a lot of useful information that I have passed along to my team members as well as clients and their families.”
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.
Florida (Agency for Persons with Disabilities): 289 professionals served
New Jersey (Rutgers University Behavioral Healthcare): 10 monthly sessions with average of 20 participants
Maine (Office of Aging and Disability): 1,114 professionals served
Arizona (Health Care Cost Containment System): 480 professionals served
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
Presentations and Publications
Kasey, R., Beasley, J. B., Caoili, A., Rizzolo, M. K., Urquilla, M. P., Gardiner, F., & Chesney, V. (2025). Addressing mental health equity for people with intellectual and developmental disabilities: Recommendations for national goals. Inclusion, 13(3), 214–221. https://doi.org/10.1352/2326-6988-13.3.214
Grosso, E., Caoili, A., & Nye-Lengerman, K. (2025). Exploring the impact of training on the mental health aspects of intellectual and developmental disabilities for direct support professionals. Inclusion, 13(1), 1–12. https://doi.org/10.1352/2326-6988-13.1.1
McLaren, J. L., Grosso, E., & Weigle, K. L. (2024). Professional development strategies for treating people with intellectual/developmental disabilities and mental health needs. Developmental Disabilities Network Journal, 4(1), 135-161. https://doi.org/10.59620/2694-1104.1092
NCSS Medical Director Dr. Jen McLaren and NCSS Clinical Director Dr. Jill Hinton presented at the American Academy of Child and Adolescent Psychiatry (AACAP) Annual Meeting, which was held October 14-19, 2024 in Seattle, Washington.
Elizabeth Grosso, Andrea Caoili, and Sara Stanton represented NCSS at the 41st Annual NADD Conference in Tempe, Arizona, from October 7-9, 2024.
NCSS Project Development Lead Maya Hu-Morabito represented NCSS at #NatCon25, the nation's largest behavioral health conference, hosted by the National Council for Mental Wellbeing on May 5-7, 2025 in Philadelphia.
