From Early Childhood

Systemwide Solutions for Developmental-Behavioral Concerns

Birth to 5: Watch Me Thrive!” has been promoting universal, broad-band developmental and social-emotional screening in children ages 0 to 5 years across the health care, early childhood education and social service sectors. With the U.S. federal government and AAP combining forces to promote periodic developmental-behavioral screening, the next step is for the U.S. to address its capacity crisis for providing high-quality early intervention and learning services.

new article in Pediatrics proposes that every U.S. state needs: 1) a family-friendly, screening and care coordination entity, 2) comprehensive, tiered, and equitable assessments for “at-risk” or referred children, 3) universal access to high-quality early learning or preschool programs, and 4) continuous accountability for the early detection process from birth to 5 years, and this includes an outcome-based metric for kindergarten readiness. Leaders in health, education, and social service sectors must boldly address our nation’s capacity crisis in a system-wide manner. US early learning (especially IDEA Part C) services must become more equitable, efficient, and effective so that the focus is always on the developmental-behavioral needs of the child.

For more information developmental-behavioral monitoring and training, visit the Learn the Signs. Act Early. Campaign at

A subcommittee of the Early Childhood Six by’15 workgroup authored this commentary: Kevin P. Marks, MD, Adriane K. Griffen, MPH, MCHES, Patricia Herrera, MS, Michelle M. Macias, MD, Catherine E. Rice, PhD, and Cordelia Robinson, PhD, RN.  The authors acknowledge and give special thanks to the other members of the Sixby’15 workgroup: Abigail Alberico, Jeffrey P. Brosco, Shannon Haworth, Andy Imparato, Ben Kaufman, Bergen Nelson and Jamie Perry.

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New Resources on the ADA from Institute on Community Integration, University of Minnesota

The new Impact: Feature Issue on the ADA and People with Intellectual, Developmental, and Other Disabilities, from the Insititute on COmmunity Integration, University of Minnesota is now available online.

impact ada thumbnail 2 5 inchThis issue marks the 25th anniversary of the Americans with Disabilities Act (ADA) with articles by individuals with disabilities, families, advocates, service providers, researchers, and others talking about how the ADA has made a difference in their lives, the lives of their loved ones, and in our nation. At the same time, this Impact also focuses on ways in which the ADA hasn’t fully addressed a number of the barriers faced by people with intellectual and developmental disabilities as they seek equal opportunity and inclusion in their communities. By sharing this range of perspectives, this Impact issue encourages readers to both pause to celebrate the anniversary of the ADA as a turning point in our nation’s journey, and continue traveling toward that horizon of full inclusion we have yet to reach. View the pdf version of the issue here. Get the text version.

Complementing this issue of Impact included over 40 video clips on the Institute’s website, Self Advocacy Online. Here, individuals with disabilities talk about the ADA. View the Institute’s website and video clips

If you would like a complimentary print copy of this issue of Impact email the Institute’s Publication Office at or call 612-624-4512.

From The Hill: “Let’s Get Smarter about Preventing Developmental-Behavior Problems”

Gone are the days of “let’s just wait and see if he/she will grow out of it.”  The federal-level initiative, Birth to Five: Watch Me Thrive!,  is heavily promoting developmental-behavioral screening in children 0 to five 5 of age. Healthcare providers are routinely screening  children for developmental delays, autism, behavioral problems and “at-risk conditions.

Politicial candidates in 2016 should know this new “standard of care” has dramatically increased referral rates to early intervention (EI) programs. The next step is to improve our early detection and intervention system for delayed and at-risk/disadvantaged children.  For every dollar spent on high-quality early learning, there’s a 7-10 percent annual return rate in cost savings to society—and the younger the child served, the wiser the investment.

Continue reading full article here.

CMS Needs To Do More To Improve Medicaid Children’s Utilization of Preventive Screening Services

In a 2010 report entitled Most Medicaid Children in Nine States Are Not Receiving All Required Preventive Screening Services, OEI-05-08-00520, OIG found that children enrolled in Medicaid were not receiving all required Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) screenings. In addition, OIG also found that children who received medical screenings were not receiving complete medical screenings. The 2010 OIG report recommended improvements in both areas. This memorandum report describes the steps that CMS has taken since the OIG’s 2010 report to encourage children’s participation in EPSDT screenings and to ensure that providers deliver complete medical screenings.

We found that CMS has taken actions toward encouraging participation in EPSDT screenings and toward encouraging the delivery of all components of medical screenings, but that it has not fully addressed OIG’s recommendations. Further, we found that children’s participation in EPSDT medical screenings remained lower than established goals. Although the national participation ratio improved from 56 percent in 2006 to 63 percent in 2013, both ratios are below the Secretary’s goal of 80 percent participation.

Given the results of our review, OIG considers all four of the recommendations from the 2010 report to remain open. This report contains no new recommendations, but we reiterate the following recommendations from 2010: CMS should (1) require States to report vision and hearing screenings, (2) collaborate with States and providers to develop effective strategies to encourage beneficiary participation in EPSDT screenings, (3) collaborate with States and providers to develop education and incentives for providers to encourage complete medical screenings, and (4) identify and disseminate promising State practices for increasing children’s participation in EPSDT screenings and providers’ delivery of complete medical screenings.

To download the complete report, visit

CMS Needs to Do More to Improve Medicaid Children’s Utilization of Preventive Screening Services

In 2010, a report from the Office of Inspector General (OIG) was released detailing findings of children enrolled in Medicaid who were not receiving all required Early and Periodic Screening, Diagnostic, and Treatment (EPSDT) screenings, nor were they receiving complete medical screening. Based on four recommendations from OIG, the Centers for Medicare and Medicaid Services (CMS) has taken steps towards encouraging children’s participation in these screenings and ensuring proper medical screenings.

Through interviews with the CMS staff, representatives of workgroups relating to EPSDT issues, and reviewing States’ reports on EPSDT participation, CMS found that since 2010, action has been taken to address the recommendations laid out by OIG, but they have not fully addressed each problem area. While children’s participation in EPSDT screenings have increased from 56 percent in 2006 to 63 percent in 2013, these are still below the Secretary’s 80 percent participation goal. Based on these findings, OIG believes all four of the same 2010 recommendations from the report need to stay open.

Read the full report.

CMS Efforts to Ensure Children Receive Developmental and Behavioral Screening

The Centers for Medicare and Medicaid (CMS) have several ongoing efforts to support and ensure developmental screening of young children.

Child Core Set Measure: Developmental Screening in the First Three Years of Life
Included in the CMS core set of children’s health care quality measures (Child Core Set) is Developmental Screening in the First Three Years of Life. This measure can be used to track how Medicaid and CHIP programs are performing in evaluating the growth and development of very young children. To help states collect and report data on this measure, CMS hosted a webinar in June 2013: Developmental Screening in the First Three Years of Life: Understanding How to Collect and Use the Child Core Set Measure.

State Reporting on the Developmental Screening Measure
Over the past three years there has been progress in state reporting on the Developmental Screening in the First Three Years of Life measure. The number of state Medicaid programs reporting according to the measure’s specifications increased from two states in Federal Fiscal Year (FFY) 2010 to 11 states in FFY 2012. Twelve states reported in FFY 2013, with seven states reporting the measure for both their Medicaid and CHIP populations. Six additional states indicated that they plan to report the measure in future years. To support states in collecting and reporting this measure, CMS provides technical assistance that can be requested via an email to

Developmental Screening in the CHIPRA Quality Demonstration Grants
In 2010, CMS launched its Children’s Quality Demonstration Grant Program with 10 grantees across 18 states. As part of its grant program, Pennsylvania is working with the Children’s Hospital of Philadelphia to improve the quality of care for children with developmental and behavioral needs in its Medicaid/CHIP programs and to leverage health information technology to maximize early identification of children with developmental and behavioral health concerns. Standardized screening tools were built into the electronic health record system and the system alerts provider staff to age appropriate screens at the time of a patient’s check-in.

The EPSDT Resource Compendium developed by the National Academy for State Health Policy (NASHP) with support from CMS includes state-specific efforts on developmental and behavioral screenings. NASHP’s website also includes a resource center for its Assuring Child Development (ABCD) III initiative, focused on developmental screening. A number of states participating in this initiative have collected and reported on the Child Core measure, Developmental Screening in the First Three Years of Life, described above.

National Baby Facts from Zero To Three, National Center for Infants, Toddlers, and Families

Nationally, almost half (48%) of children under age 3 live in low-income families (with an income less than 200% of the Federal Poverty Level (FPL)), including 25% that live in families in poverty (with an income less than 100% of the FPL). In a majority of states, at least one in four very young children lives in poverty. This fact shows the widespread lack of adequate resources needed for the healthy development of all infants and toddlers. Within the United States, Mississippi has the highest percentage of infants and toddlers living with families in poverty, at 35%.

Twenty-six percent of children under age five are at moderate or high risk for developmental or behavioral delays. Early Head Start (EHS), Child Care and Development Block Grant (CCDBG), and Early Intervention Part C are federal programs that support positive early learning experiences. Less than 4% of eligible infants and toddlers participate in EHS, leaving the majority of eligible infants and toddlers without access to this proven program. EHS plays an important role in children’s success in school, family self-sufficiency, and parental support of their child’s development. Thirty percent of children receiving child care subsidies funded by CCDBG are infants and toddlers. CCDBG, however, is able to serve only one in six eligible children. Three percent of infants and toddlers receive early intervention services under Part C of the Individuals with Disabilities Education Act.  For infants and toddlers with a disability or developmental delay, intervening early can serve as a protective buffer against multiple adverse influences that may hinder their development. Information on each state can be gathered from the 2013 State Baby Facts factsheets at, The factsheets provide state information on infant and toddler health and positive early learning experiences for early childhood professionals and policymakers.

Early Childhood Goal
Early Childhood Goal

Help Me Grow System

The Help Me Grow National Center recently created a document that outlined main core components and structural requirements for the Help Me Grow System. The Help Me Grow system is a way that connects children at-risk for developmental and behavioral problems with services they need. It builds on simple pre-existing resources and solutions that are effective for children and their families. Through ongoing analysis and data, barriers of information system can be identified.

The Help Me Grow system is divided into four core components and three structure requirements that easily outline the aspects of the system. The four core components include, child health care provider outreach, community outreach, centralized telephone access, and data collection. Child health care providers are included in this list since they are the ones who identify children at risk for developmental delay and work with families to analyze children’s developmental status. Community outreach encourages the outside community to form participation in the Help Me Grow system and markets these services. It also allows easier accessibility to information and resource to ensure that all information is up-to-date. Centralized telephone access connects children and families to services and care coordination centers. This service provides a direct access point to information and identifying needs of families and care providers. Lastly, data collection allows people to understand all aspects of the Help Me Grow through analysis of information and identification of gaps and barriers.

The three structural requirements are organizing entity, statewide expansion, and continuous quality improvement. The organizing entity allows for administrative and fiscal oversight and helps identify partners into leadership that will help guide Help Me Grow. Statewide expansion requires states to have a statewide vision of Help Me Grow in order to facilitate its success. The third structural requirement, continuous quality improvement, analyzes successes and limitations in these programs as more information is understood through this system.

To learn more about the Help Me Grow system and these core components and structural requirements visit Detailed information for each outlined point is also provided.

Early Childhood Goal
Early Childhood Goal

SPHARC Environmental Scan Report

A new report was released by the Association of Maternal and Child Health Program on “State Strategies and Initiatives to Improve Developmental and Autism Screening, and Early Identification System.” This report discusses the various screening activities that occur throughout the US and territories to identify children with autism spectrum disorder and other developmental disabilities.

The outcomes of this report identified common strategies and areas of improvement for state systems. It is AMCHP’s hope to eventually be able to provide program suggestions to states so that they may be able to improve in the early identification screening efforts.

Read the full report.

Early Childhood Goal image
Early Childhood Goal image

Autism Speaks Early Access to Care Initiative

Autism Speaks has officially endorsed the Six by ’15 Campaign! Founded in 2005, Autism Speaks is now the world’s largest autism science and advocacy organization.

Early Access to Care Logo

Lowering the average age of diagnosis and increasing access to early intervention for all children

Their Early Access to Care Initiative seeks to reduce the average age of diagnosis and increase access to high-quality early intervention for all children on the autism spectrum. This initiative will help achieve our goal of increasing the proportion of children who receive recommended developmental screening and improving access to services for children identified by that screening.

According to the CDC, the average age of diagnosis is 4-5 years, but a reliable autism diagnosis can be made as early as 18-24 months. While early detection is critical, research shows that many parents have very little knowledge about autism and its symptoms. Many studies have also documented that racial ethnic minority populations and those of lower socioeconomic status are diagnosed later. The earlier children are identified, the earlier they are able to receive early intervention services. Evidence-based early intervention services have been shown to reduce the core symptoms of autism, improve IQ and daily functioning.
Improving this unacceptable situation will take the combined efforts of families, healthcare professionals, educators and autism advocates in every community.

Resources of the initiative include:

Information En Espanol: Acceso Temprano A Servicios – Autism Speaks