Nationally, it has been reported the people with I/DD are seven times more likely to experience sexual assault. The Partnership for People with Disabilities at the Virginia Commonwealth University UCEDD developed Leadership for Empowerment and Abuse Prevention (LEAP), an initiative designed to teach individuals with I/DD about preventing abuse and fostering healthy relationships. LEAP offers four face-to-face interactive training sessions and taught by an individual with a disability and a co-trainer. Approximately 1,000 Virginians with I/DD, 1,500 professionals, and over 25 disability support agencies in Virginia have participated in LEAP training. The LEAP has recently expanded its outreach efforts to provide live virtual webinar training to over 1,000 participants.
The Institute on Disability and Human Development at the University of Illinois Chicago operates a mobile Assistive Technology Unit (ATU), utilizing 10 vehicles to provide community-based services. This initiative is the largest mobile assistive technology program in the country. Each year, approximately 1,110 consumers from underserved communities receive services in their home, school, or worksite that are individualized based on needs identified through interviews, observations, and assessments. The interdisciplinary ATU team is comprised of professionals ranging from the disciplines of occupational therapy, physical therapy, speech-language pathology, rehabilitation engineering, and architecture. This ATU program made home modifications to support 550 members under the Colbert and Williams consent Decree, a state initiative to transition participants from nursing homes and other facilities to permanent housing.
Center on Developmental Disabilities UCEDD at the University of Tennessee Health Science Center
Caregiving
Over two million children in the United States are raised in
the homes of kin and grandparent caregivers and 25 percent of these children
have disabilities with little outside support or services. Almost half of the
children living in these households live in poverty, and 40 percent of
caregivers are older adults who report physical and mental health concerns. To
support these families, in 2001, the Center on Developmental Disabilities UCEDD
at the University of Tennessee Health Science Center piloted the Shelby County
Relative Caregiver Program in collaboration with the Tennessee Department of
Children’s Services (DCS). The program provides short-term case management,
caregiver support groups, youth activity groups, emergency one-time financial
or start-up assistance, teen mentor groups, material assistance, information
and referral, educational workshops, and respite services to promote family
self-sufficiency and stability. Based on the program’s success, the initiative
expanded to eight relative caregiver programs across Tennessee and legislation
was passed in 2023 to provide a state-funded monthly stipends to support
relative caregivers. To date, over 9,000 children from 6,500 families in Shelby
County have been supported to remain in their extended families’ care along
with their siblings. As a result, 95 percent of these children never entered
the child welfare system.
Iowa Center for Disabilities and Development
Community Supports
There is a lack of community supports for individuals with
behavioral health needs resulting in homelessness, incarceration, and early
death. To address this challenge, the Iowa Center for Disabilities and
Development, Iowa’s UCEDD, in collaboration with the Iowa Department of Health
and Human Services (Iowa HHS), established the Center of Excellence for
Behavioral Health that focuses on individuals mental health disabilities,
including those with co-occurring mental health and other disabilities. The Center
provides training and technical assistance through both virtual and in-person
support to 50 community providers across Iowa that is customized to meet their
needs and build their capacity to support individuals with behavioral health
issues. Examples of support services include Integrated Placement and Support,
Assertive Community Treatment, and Permanent Supportive Housing. Since the launch of the Center in April 2022,
400 Iowans with disabilities found competitive integrated employment, 550
individuals have maintained integrated supportive housing, and over 200
individuals living within community rehabilitation programs were able to stay
in the community without need for inpatient hospitalization. In 2024, the
Center received approximately $132,000 in additional funding from Iowa HHS to
expand their training and technical assistance portfolio to include suicide
prevention, which is expected to be funded over the next five years.
The Boggs Center on Developmental Disabilities in collaboration with the New Jersey Department of Human Services established a Direct Support Professional (DSP) Capacity Building initiative to help strengthen the recruitment, skills, and retention of DSPs within the state. During the early stages of development, the Boggs Center conducted two large scale research surveys with DSP community and disability stakeholders to identify the impact of the current labor shortage and existing training gaps which were then used to help formulate recommendations on core competencies to support a DSP career track. The survey results have also been utilized to strengthen system alignment in coordination with local Workforce Development Boards and community colleges to address training needs and its marketing campaign to increase public awareness about DSP as a vocation.
The University of Oregon Center on Human Development
Early Intervention
Early identification of young children with disabilities or
developmental delays before kindergarten significantly improves life outcomes,
particularly when they get connected to early intervention services and
supports. The University of Oregon Center on Human Development, one of Oregon’s
UCEDDs, in partnership with the Oregon Department of Education developed a
screening tool called Ages & Stages Questionnaire for young children at
risk for developmental delays. This tool assists families, early care providers,
pediatricians, and educators with early identification. Since its creation in
2012, over 72,400 Oregon families and caregivers have used a public website to
complete the tool at no cost to them. As a parent-empowerment approach,
families who are concerned about their child’s development can complete the
questionnaire and use the results to initiate informed discussions with
pediatricians, early intervention providers, and other state and local agencies
responsible for serving young children with or at-risk of experiencing
developmental delays. The Ages & Stages Questionnaire is used by families
and providers in all 50 states and territories and has been translated into
over 60 languages for international use.
Florida Center for Inclusive Communities at the University of South Florida
Educating School Personnel
Students with disabilities are twice as likely to be
suspended than their nondisabled peers. This is compounded by a lack of
training for teachers on inclusive practices. To address this issue, the
Florida Center for Inclusive Communities at the University of South Florida
established the Florida Positive Behavioral Interventions and Supports (PBIS)
Project to provide intensive technical assistance to K to 12 schools to improve
inclusion of and service delivery to students with intellectual and developmental
disabilities. The project uses coaching, evaluation, and data-based
problem-solving through virtual and onsite training with district leaders to
create systems that support effective PBIS practices. In FY 2023, 3,952 school
and district personnel representing 2,361 schools in nearly 70 percent of the
school districts in the state received this training. Through this TA on
behavioral support, there has been a reduction in office discipline and
in-school suspensions of approximately 20 percent within the first year of PBIS
implementation.
Texas A&M University UCEDD
Employment
People with disabilities have experienced significantly
lower employment rates than those without a disability, especially those living
in rural communities. To address this issue, the Texas A&M University UCEDD
collaborated with the Texas Workforce Commission’s Vocational Rehabilitation
program to develop the “I Generate Rural Opportunities for Work” (iGROW)
Program in a local community. The iGROW program provides an array of career
development services to high school students with disabilities ages 14-22 including
access to paid work experience, vocational rehabilitation services, and
independent living resources along with educating family members. During the
school day, teachers facilitate pre-employment transition (Pre-ETS)
instruction, person-centered plan development, and career and college
exploration activities. Since 2022, iGROW has been replicated in 7 rural
communities. Overall, 40 students successfully completed 4,396 hours of paid
work experience, 26 students have pursued 20 hours of additional workforce
training, and 15 students have attended a youth leadership and college
exploration camp for the gifted and talented during the summer. Due to the success of the pilot, the Center
received approximately $9.6 million to extend the iGROW program from a one-year
to a four-year model with the intent of expanding it across Texas.
The Center for Excellence in Developmental Disabilities at the UC Davis MIND Institute in the state of California developed a Family Navigator Program to help support families after they learn of their child being diagnosed on the autism spectrum or with a developmental delay. This no-cost program to families supports them in receiving peer-to-peer support to help reduce feelings of stigma as well as empower them to learn how to best advocate for the child and navigate complex service systems. The mentors of the program represent families of members of children or adults with neurodevelopmental disabilities, self-advocates, and LEND program trainees. The MIND Institute currently has 12 family navigators with services available in English, Hindi, Spanish, and Vietnamese. Since its formation, the program served a total of 530 families and is now serving an average of 80 families at one time. Families report very high satisfaction with the program, indicating they felt supported, received the information they needed to access services and were linked to a local Family Resource Center for additional support. Parents reported feeling confident in their ability to talk with family and friends about their child’s diagnosis and to navigate the tasks needed for service access. The program has since expanded to provide virtual Parent Education Groups to create a supportive learning environment for families on community-based treatment and resources. Over 90 families have completed satisfaction surveys in various groups and indicate high satisfaction with the topics.
The Institute on Disability at the University of New Hampshire addressed a national knowledge gap of health providers in treating individuals with developmental disabilities and mental health needs. Through the initiative of the National Center for START Services, the first edition of Integrated Mental Health Treatment Guidelines for Prescribers in Intellectual and Developmental Disabilities (IDD-MH Prescriber Guidelines) was published in April 2021.The IDD-MH Prescriber Guidelines offers an overview of integrated health and psychopharmacological best practices in the treatment of patients with IDD. Prior to the development of this guide, the grantee conducted extensive focus groups with individuals with lived experiences, family members, clinicians, and prescribers. The guidelines are used as training for a physician practice group comprised of 68 members from 52 organizations who meet monthly to learn together. A training was also developed for 92 medical students and 30 community providers using the guidelines as a framework. Medical schools involved include Dartmouth’s Geisel School of Medicine, University of Puerto Rico’s Medical School, and Franklin Pierce University PA program
Oral health disease is a common health barrier for people with I/DD that has recently exacerbated by the impact of delayed public health care provided during the pandemic. The Ohio State University Nisonger Center through its dental services program provides a complete range of oral health services to children and adults with I/DD throughout the lifespan. Each year, more than 3,000 patients with I/DD and other special healthcare needs receive treatment by Nisonger. To help increase community capacity in providing healthcare services, the Nisonger Center Dental Services provides professional training for Ohio State students enrolled in its dental program. Through this partnership, the Nisonger Center trains up to 200 dental students, residents, and dental hygiene students annually. In Fall 2023, the Nisonger Center will expand to provide training to community dental care providers in other states who work in federally qualified health centers to enroll in its Intellectual and Developmental Disabilities Dental certificate program.
The Utah State University’s Institute for Disability Research, Policy and Practice (IDRPP)
Home and Community Based Services
The Utah State University’s Institute for Disability
Research, Policy and Practice (IDRPP) implemented three initiatives to help
strengthen the capacity of Direct Support Professionals (DSP) to support
individuals with developmental disabilities in employment settings and their
families across the state of Utah. IDRPP developed a comprehensive web page for
DSPs that includes over 73 webinars with tools and resources and trained 1,298
individuals. In addition, IDRPP developed five manuals for service providers
with one focused on explaining the HCBS final settings rule and provided
approximately 280 hours of technical assistance. In an effort to help increase
community awareness as well as cultivate new partnerships, IDRPP presented to
various local professional groups within the community and reached 31 States
and nine other countries.
The University of Kentucky Interdisciplinary Human Development Institute (HDI) developed a Driver Rehabilitation Services program in collaboration with the Occupational Therapy Services Unit within the University of Kentucky Hospital. The Driver Rehabilitation Services provides driver evaluation and training services for people with disabilities, including individuals with developmental disabilities, who want to live more independently within the community. Referrals are made through the Kentucky Office of Vocational Rehabilitation to help clients overcome barriers to employment which then help lead to improved economic security and mobility. In housing the Driver Rehabilitation Services program within HDI, the UCEDD works closely with customers to learn more about their barriers to drive a vehicle and then match their needs through integrating rehabilitation technology applications as an accommodation through its innovative research. In 2022, there were 249 individuals that received driver rehab services and 724 individuals served in total in this same program since 2019.
The Westchester Institute for Human Development University Center for Excellence in Developmental Disabilities (WIHD) based in New York provides community training, technical assistance, and services to support vulnerable children and their families. During FY 2022-23, WIHD made 5,640 appointments to provide assessments, parent training, tutoring, and pediatric medical services to children and families involved in the foster care system. WIHD also partners with University of Rochester UCEDD and Rose F. Kennedy UCEDD under a New York State Department of Health initiative to provide technical assistance to local health departments to support children and youth with special health care needs to ensure coverage. Between FY 2022-23, the three UCEDDs jointly provided professional training and resources to 550 public health officials across all 28 New York counties on issues topics related to early detection, enhancing quality care, and building system capacity.
University Centers for Excellence in Developmental Disabilities (UCEDDs) aim to positively affect the lives of people with disabilities by building and strengthening systems that support full community participation. UCEDD Success Stories work to highlight the impact of UCEDDs within university systems, the community, and in the lives of people with disabilities across the lifespan and their family members.