By Kate Taft, MPH
Senior Program Manager, Child Health, AMCHP
Program Intern, Children and Youth with Special Health Care Needs, AMCHP
As many as one in four children through age five are at risk for a developmental delay or disability. Title V programs and partners have long recognized the need for coordinated, comprehensive systems for developmental screening and early identification. Through state and federal efforts, there has been a strong focus on activities related to promoting early screening, identification and referral to intervention services. In 2014, AMCHP conducted an environmental scan of "State Strategies and Initiatives to Improve Developmental and Autism Screening, and Early Identification Systems." The scan provided a broad picture of state activity, including the role of Title V programs, related to developmental screening and early identification.
The scanning process included a search of the Title V Information System online database and the Title V MCH Services Block Grant Narratives. AMCHP found a total of 19 states with a current priority need specific to developmental screening/early identification, and a total of 21 state performance measures related to developmental screening/early identification in 20 states (a fact sheet on the current State Title V Performance Measures can be found here). More broadly, the scan identified common themes across state activities and initiatives, particularly related to:
- Training health care providers and early childhood professionals (around screening tools, implementing screening in practice, etc.)
- Implementing quality improvement projects and learning collaboratives
- Increasing awareness and education through outreach
- Improve systems for coordination of services
- Improve data collection and infrastructure for data systems
- Implement policies that promote increased screening and early identification
- Involve and engage families in promoting and improving systems of care
The full report can be downloaded on the SPHARC site here. Over the coming year, this data will be further analyzed to develop resources to assist states and Title V programs in building and improving developmental screening and early identification systems. These resources and updates will be posted on the AMCHP State Public Health Resource Center (SPHARC) website: amchp.org/programsandtopics/CYSHCN/projects/SPHARC.
There also are many federal and national partner organization efforts focused on promoting developmental screening and early identification. Just a few are highlighted below:
- Six by '15 Campaign: The Association of University Centers on Disabilities (AUCD) invites organizations and professionals from across the nation to join the discussion about the new Six by '15 Campaign, which celebrates 25 years of the Americans with Disability Act and 40 years of the Individuals with Disabilities Education Act. The campaign developed six goals to directly improve the lives of people with disabilities across the country, which AUCD and campaign partners hope to achieve by the end of 2015. One of these goals is related to early childhood and early screening. The early childhood goals are:
- At least six states increase by 15 percent the proportion of children ages zero to three who receive the recommended number of developmental screenings
- At least six states commit to improving cross-system information exchange that supports access to services for children identified by screening
AUCD invites you to contribute to the content of the Six by '15 Campaign website with updates on efforts you are making at the state and regional level toward these goals. The Six by '15 Campaign website is an open source website and all are invited to contribute!
- Birth to Five: Watch Me Thrive! is a federal coordinated interagency effort to encourage comprehensive community based screening programs in coordination with the children's medical home in order to help all infants and young children receive the intervention they may need to grow and develop. Resources include a compendium of research-based screening tools; "User's Guides" for a wide range of audiences; an electronic package of resources for follow-up and support; and a Screening Passport for Families for keeping track of screenings, results, and follow up steps, as well as coordinating information with multiple providers to support interventions and services.
- CDC Learn the Signs. Act Early.: The CDC provides free informational materials for parents about physical, social and linguistic milestones for typically developing children; these materials consist of educational videos, milestone checklists, and general fact sheets about child development. The website also offers educational and training resources for early childhood educators on screening and monitoring of young children's development. In addition, current and future health care providers can participate in "Autism Case Training: A Developmental-Behavioral Pediatrics Curriculum" to learn the basics about the importance of using validated and reliable screening tools, diagnosing and referring patients who are at risk for ASD or other developmental delays.
- Maternal and Child Health Bureau (MCHB): MCHB supports a number of programs that promote and support healthy development in early childhood.
- The Autism CARES Act targets several goals related to screening including increasing awareness of autism spectrum disorders and other developmental disabilities, supporting research on autism in early childhood, encouraging the use of valid screening tools, and using evidence-based strategies to intervene on behalf of children at risk for developing a delay.
- The U.S. Department of Health and Human Services also funds Maternal, Infant, and Early Childhood Home Visiting (MIECHV) programs intended to assist families in low-income communities support their young children's healthy behavior and development. Home-visiting programs are voluntary, and provide parents with the skills and knowledge they need to ensure their young children are developing physical, social and language skills they need to be prepared for school. Specifically related to developmental screening, home-visiting can also help parents to keep track of their children's milestones, recognize potential delays in one or more domain, and have children screened by a health care provider or other trained professional.
- In September 2013, MCHB launched a Home Visiting Collaborative Improvement and Innovation Network (HV CoIIN). HV CoIIN is a learning collaborative for a select group of 12 state, tribal and non-profit grantees following the Breakthrough Series collaborative model pioneered by the Institute for Healthcare Improvement. It is a time-limited (three-year) learning method that brings together 35 teams from local home visiting service agencies to seek improvement in four topic areas: Maternal depression screening and care, developmental screening and linkage to services, initiation and extension of breast feeding, and family engagement including enrollment, retention and transitions. The main purpose is to accelerate improvements in program outcomes using small tests of change to adapt best practices across multiple grantee settings and spread the learning. The overall aim for the developmental screening related HV CoIIN will be to "increase by 25 percent from baseline the percent of children with developmental or behavioral concerns receiving identified services in a timely manner."
- Early Childhood Comprehensive Systems: Early Childhood Comprehensive Systems grants have strengthened state systems to promote early childhood development since 2007. Recently, the program refocused to better support current early childhood initiatives. Each program focuses on one of three strategies, one of which is to coordinate the expansion of developmental screening activities in early care and education settings statewide. There are 19 states and territories that have chosen to focus on the developmental screening strategy.
As mentioned, AMHCP will be working over the coming year to produce more resources and build out links on the SPHARC website related to developmental screening and early identification. Stay tuned at: amchp.org/programsandtopics/CYSHCN/projects/SPHARC!