Promote Access to Early, Regular and Comprehensive Screenings

Recommendation: Make appropriate health, mental health, and developmental screenings and follow-up available for vulnerable infants and toddlers through connections with all infant and toddler providers and caregivers.

“The tremendous adaptability of the brain in the first three years of life means that early treatment of delays leads to improved outcomes, whereas later intervention is less effective. In order to provide treatment to improve children’s outcomes, early identification of delays and sensory impairments … is critical.” – Laura Sices, Developmental Screening in Primary Care: The Effectiveness of Current Practice and Recommendations for Improvement

TABLE OF CONTENTS:

What is screening?

SECTION 1: What is the value of early and regular screening for vulnerable babies and toddlers?

SECTION 2: How can states ensure babies and toddlers are screened for developmental delays?

Throughout a child’s life, there are many opportunities to watch for potential developmental delays, access appropriate intervention, and hopefully prevent further delays and other issues that may arise as a result. For the purposes of this recommendation, the definition of screening is consistent with best practice in two existing areas of policy – screening requirements as defined under Early Head Start policy and guidelines, and the series and frequency of developmental and medical screenings mandated under Medicaid’s Early and Periodic Screening, Diagnosis, and Treatment (EPSDT) requirement. Medicaid provides EPSDT guidance for screening that includes physical examinations, lab tests (e.g. lead screening), developmental questionnaires, hearing and vision, and child and family history. Typically, these screenings are delivered by medical professionals during regular child well visits. In Early Head Start programs, Head Start Program Performance Standards specify that within 45 days of entry into the program, each child should be screened for “developmental, sensory (visual and auditory), behavioral, motor, language, social, cognitive, perceptual, and emotional skills,” using age and culturally appropriate tools. The standards also require that Early Head Start programs assess whether children have received regular medical screenings and care, and if not the program must help connect children and families to those services.  State administrators and policymakers can broaden the reach of these policies by developing and implementing models based on Medicaid and Early Head Start guidelines to ensure that infants and toddlers are monitored in all areas of their development, with screening taking place in a child’s regular medical setting, child care programs or other community-based settings. It is important to note that expanding opportunities for screening must be combined with increased referral to and provision of treatment and services based on screening results. Early childhood programs can play an important role in supporting and coordinating children’s screening, and connecting them to appropriate interventions and health care services.

What is the value of early and regular screening for vulnerable babies and toddlers?

Infant and toddler screening identifies developmental and health problems early so babies can get the support they need.

For babies and toddlers, early learning experiences occur within the context of their physical and mental health, building brain architecture that lays the foundation for success later in life. Children develop along a continuum, with milestones reached at ages that vary within an accepted timeframe. Development that does not happen within the expected timeframe can raise concerns about developmental disorders, health conditions, or other factors contributing negatively to the child’s development.  Early, regular, and reliable screening can help identify problems or potential problems that may threaten the child’s developmental foundation and lead to additional delays and deficits later in childhood. The success and long-term cognitive benefits of early intervention appear to be related to the level of intervention, comprehensiveness, and duration of the services, so identifying problems and connecting babies to treatment during their earliest years is most effective. Parents of children who have participated in early intervention after being identified through screening also report that their families are better off as a result of early intervention services. According to the Rand Corporation, the long-term benefits of early intervention include increased academic achievement, better behavior, and decreases in delinquency and crime.

 

Screening that begins early, happens on a regular schedule, and uses reliable tools is most effective in improving babies’ chances for healthy development. Recommended screening for healthy child development includes physical, dental, social-emotional, and other aspects of developmental health. For screening to be most effective, however, it must begin early, it must follow a regular ongoing schedule through early childhood, and it must use reliable, valid screening tools appropriate to the age, culture and language of the child. Screening is recommended to be early and frequent because that is the most effective way to connect babies to treatment in time to minimize the long-term effects of developmental delays and other problems, for children and their families. By catching developmental issues early, children can be more effectively provided with treatment or intervention, and the negative long-term effects of developmental delays on the child and family can be reduced.,  Catching and responding to these early needs is important because neuroscience suggests that effective early interventions for vulnerable children can sometimes begin at birth or even prenatally, and that earlier interventions are more likely to positively affect the entire trajectory of the child’s life.

While screening should start young, it should also happen on a regular schedule to catch emerging problems, particularly in children living with risk factors for developmental delays. Sometimes developmental delays or other problems are identified through the absence of change (e.g. a child does not lose certain newborn reflexes), so monitoring through examinations and screenings are critical. While Medicaid requires that states implement the series of screenings outlined under EPSDT, states have flexibility over the recommended frequency and timing of screening. The American Academy of Pediatrics (AAP), however, recommends that children undergo age-appropriate screening prenatally, at birth, within five days of birth, then at ages 1 month, 2 months, 4 months, 6 months, 9 months, 12 months, 15 months, 18 months, 24 months and 30 months, 3 years, and annually thereafter. Currently only five states’ Medicaid policies provide reimbursement for the AAP-recommended screening frequency for children under one year old, and 39 states cover at least four screenings for children between their first and third birthdays.

Finally, to effectively catch early and emerging developmental problems, infants and toddlers should be screened using reliable tools to minimize errors and simplify the process. Even professionals drawing on lengthy experience and knowledge of child development can benefit from streamlined and research-based tools to efficiently and consistently screen for developmental delays and other issues. Age appropriate screening tools exist in a variety of developmental areas, including general development, language and cognitive development, communication and language, motor skills, and autism.

Not enough babies and toddlers, especially those who are vulnerable, are being regularly screened for developmental delays and disabilities. Access to regular medical care helps.

Effective screening for developmental delays can lead to early intervention and special education services for children who need them. Preschoolers, however, appear to be using those services at much higher rates than younger children, indicating that some developmental delays may be missed during the infant and toddler years and caught when the children enter preschool or kindergarten. For example, according to the Centers for Disease Control, developmental disabilities affect approximately 17 percent of children younger than 18 years of age in the United States, and interventions provided under the Individuals with Disabilities Education Act (IDEA) Part B served 5.7 percent of preschoolers nationally in 2008. But the percentage of infants and toddlers served under Part C of IDEA was only 2.5 percent of the population in the same year. While it is true that some delays may not emerge in a measurable way until the preschool years, it is also likely that part of the gap in services between babies and preschoolers would be closed by more consistent screening. Parent reported data from the National Survey on Early Childhood Health indicates that among the families surveyed, 57 percent of children aged 10 to 35 months had ever received developmental screening by their primary care provider.

For infants and toddlers living in poverty, or with other known risk factors, catching any early developmental problems or risks is even more important. Poor children are more likely than children from higher income families to experience low birth weight, stunted growth, and lead poisoning-all factors that are linked to cognitive and emotional problems. Medicaid and the state Children’s Health Insurance Program (CHIP) are critical to improving access to preventive care, including screening, for children in poverty. One study showed that children with public health insurance were more likely than privately-insured children to have had a preventive medical visit within the past year, and that children without any type of insurance were least likely to have had a preventive medical visit.  In addition to medical coverage, one study of Latino children in poverty found that barriers to accessing preventive health care may also include transportation, language differences, cultural differences, and long wait times.

In the effort to connect infants and toddlers, particularly those at risk, to developmental screening and early intervention, one promising strategy being adopted by states is to promote the connection of children and families to “medical homes.” The term refers to a consistent family-centered primary medical caregiver who coordinates and manages an individual’s preventive care, diagnosis, and treatment.  Research has shown that children with special health care needs in particular receive more timely and thorough care when they are connected to a medical home.  But getting children to a medical provider or another professional who can conduct screenings (such as a child care provider) is just one step toward comprehensive preventive screening. Primary health care providers and other professionals must follow through by consistently and thoroughly providing screening and referrals. A recent study of nine states by the U.S. Department of Health and Human Services’ Office of the Inspector General found that the majority of children receiving preventive well visits under Medicaid did not receive all of the EPSDT required screenings.  A separate study found that barriers to physician’s completing recommended and required clinical practice include lack of awareness, familiarity with recommended practice, and confidence that they could actually complete the required practice accurately. This points to the need for additional training for primary health care providers and others delivering screening to children, including child care providers. States that are successfully working with providers to offer screening services within child care and early education settings support providers with the purchase of tools and materials, ongoing training, and technical assistance to help overcome these barriers.

How can states ensure babies and toddlers are screened for developmental delays?

States can engage child care settings and providers in informing and educating families about the importance of screening, providing developmental screenings, and connecting children to follow-up services.

States can craft policies through their child care systems that educate families, child care providers and caregivers, and others who come in contact with young children, about the importance of screening. As states design and implement mechanisms that provide families with information about the importance of screening and connect them with screening opportunities, child care providers can play an important role in each step of the process. The majority of low-income children under age three with employed mothers are in some type of non-parental child care, which can be a place to reach young children with information and services.

Child care providers have daily interaction with young children and their parents in non-stigmatizing and accessible settings, and often develop strong, supportive relationships with both the child and family, setting a positive context for delivering preventive services. Child care programs can start by ensuring that all staff and the families they serve receive detailed information about what screening is, including the benefits and recommended schedule, and information about how to access screening. Of primary importance is that child care providers themselves make the distinction between child assessments that measure primarily cognitive development and comprehensive health and developmental screening that determines whether children are developing on track in all domains, and convey that distinction to families.

Child care providers who are conversant on the benefits of screening can guide families through the screening process, and work with families to help them identify and connect to a medical home, so they are more likely to receive needed services, ongoing preventive care and additional screening as the child ages. Child care programs providing developmental screening as part of their services can establish policies and practices that give them regular opportunities to discuss screening results with parents, and engage and assist parents in planning for the care of the child in the program and in seeking additional screening and related follow up services when necessary.

Because they have more regular contact with families than medical providers, child care providers may be in a better position to guide families from a variety of cultural backgrounds through the screening process. Varying cultural norms may have a significant impact on a family’s approach to preventive care, and developmental expectations for children vary across cultures. While translated screening tools may be helpful, a familiar child care provider or cultural mediator can help make the most of discussing the screening results with families.

Through the Rhode Island Watch Me Grow program, child care providers receive training and support in obtaining family permission for screening and providing developmental screening on site. The initiative also supports the providers in coordinating services to families such as informing families of the recommended screening timeline, consulting with parents about screening results, and helping families work with pediatricians to develop a service plan when necessary. Head Start standards also require that programs engage parents in this entire process, from informing them of the reasons for and importance of medical and developmental screening, to including them in the discussion of screening results, connecting them with additional screening when needed, and finally helping families connect to any needed treatment both within and outside the program.

States can build and support partnerships to connect families to screening.

To increase access to screening, states can also promote partnerships between state agencies, families, caregivers, child care providers, and medical homes. State agencies can work together to maximize the effectiveness of funding streams such as Medicaid and Maternal and Child Health dollars. Cross-system entities like Early Childhood Advisory Councils (ECAC’s) can help create and facilitate these state and community level partnerships.

For example, to improve EPSDT delivery states can use Title V Maternal and Child Health collaboration dollars to fund community-based agencies providing the non-medical infrastructure around EPSDT in the following ways:

  • Assisting with coordination of EPSDT by monitoring and tracking children’s screening history at the program, and providing reminders and referral for screenings that take place in medical settings;
  • Establishing coordination agreements between child care programs and  State Medicaid programs to compensate programs for monitoring children’s screening;
  • Providing a toll-free number via an early childhood or other community based organization for families seeking Title V or Medicaid providers, or to provide screening via phone when appropriate;
  • Providing training and materials for implementing some types of screening, for example developmental screening in early childhood settings; and
  • Providing outreach and facilitating enrollment of Medicaid eligible children and pregnant women within child care settings.

States can also combine public and private dollars to spur innovative partnerships around screening. In Connecticut, agencies including the Children’s Trust Fund, Department of Developmental Services, Department of Public Health, and the Department of Education, have collaborated with Connecticut’s Birth to Three System and the United Way of Connecticut to create that state’s Help Me Grow system. To inform families and connect them to screening, Connecticut’s Help Me Grow provides state supported coordinated referral for children birth to five. Families or any agency working with families, including child care and early education providers, can use the Help Me Grow network to connect a child to screening, other preventive services, or treatment. The system components include local networking of practitioners, training on screening and referral for primary health care providers and other professionals, and the use of a statewide 211 number to coordinate referrals. In addition, families can access developmental screening over the phone via the 211 system. Another component called EPIC (Educating Practices In Community) provides training in behavioral health screening and treatment to primary health care providers and other staff in medical settings serving children.

States can encourage or require child care providers to connect families to screening.

Since low-income families may have less access to health care and other settings where screenings could take place, it is particularly important for child care settings serving low-income infants and toddlers to provide access to screening, referrals, and follow-up services. As noted above, under Head Start Program Performance Standards, providers of Early Head Start are required to help families of children in the program locate and connect to an affordable primary health care setting, a major factor in having reliable access to screening. Further, standards require Head Start programs obtain preventive health records and determine whether children are up to date on all recommended screenings. If they are not, Head Start programs are required to make arrangements to bring the child’s preventive screening up to date. Finally, Head Start standards require that programs make some screenings – including vision, hearing, socio-emotional, and cognitive screenings – available for children they serve, which may include providing those screenings within the program. States may be able to support increased access to screening using Head Start Collaboration dollars or other Head Start funds, and by encouraging use of Title I funds at the local level. With flexibility in service delivery, Head Start and Early Head Start providers can help expand developmental screening of infants and toddlers by using their funds to provide screening to infants and toddlers being served in other parts of their agencies, or by other providers, including family child care and family friend and neighbor caregivers.  

Other child care programs could be encouraged or required through state policies to take on a role of connecting families to, coordinating, and providing screening services. To alleviate the staff costs of screening and related services for providers and caregivers, states can approve the use of state Medicaid funds and other available resources to support developmental screening and case management within early childhood programs, and allow the use of early childhood funds as Medicaid matching dollars for case management. (See text box for more Medicaid-related policies that can support developmental screening.)

   

The role of state Medicaid policies in promoting developmental screening

Since the mandate driving screening and the prime revenue source for EPSDT in most states is Medicaid, state level Medicaid policy must be designed to facilitate the effective implementation of comprehensive screening requirements. Many states are using improvements in Medicaid and CHIP policy to increase the adaptation of the Medical Home model, providing families with a critical connection to consistent primary and preventive care that includes comprehensive screening. As health care reform is implemented and increasing numbers of parents obtain health coverage, there will be more opportunities to reach families and children with preventive services. The Center for Medicaid and Medicare Services has also begun requiring states report EPSDT screening rates, providing states with more incentive to devise new ways to reach children with screening and treatment. There are other opportunities for increasing access to screening though Medicaid policy. For example:

  • When states establish Medicaid guidelines and reimbursement policies related to EPSDT, screening guidelines should mirror the AAP’s recommended content and frequency. If not, states should revise their periodicity tables to align them with model practice. For example, many states’ Medicaid policies do not cover a 30-month well visit even though it is a recommended screening point.
  • States can encourage screening by ensuring their Medicaid reimbursement policies cover developmental screening as a separate service from the recommended child well visits.
  • States can also ensure that primary health care providers and other practitioners have technical assistance around the appropriate billing codes to use for reimbursement, whether the state reimburses for screening separately or only as part of a well visit. States can use existing community-based child health improvement initiatives and other local partnerships to promote the use of specific Medicaid reimbursement codes among those who provide screening.
  • To improve developmental screening rates, states can work with providers to complete screenings thoroughly and on the recommended schedule, offering support and guidance on screening tools, technical assistance on protocols for incorporating screenings into well-visits, and guidance on billing and reimbursement procedures for developmental screening.
  • To streamline the process and improve the quality of screening in practitioners’ offices, states can provide a list of valid developmental screening tools that are approved and require primary health care providers to use these tools as a condition of Medicaid reimbursement. By identifying valid tools, states can improve the quality of screenings and more effectively target their training and technical assistance for practitioners. Like the EPIC component of Connecticut’s Help Me Grow, described above, in North Carolina, the Assuring Better Child Health and Development (ABCD) Program dramatically increased screening rates and early intervention referrals by identifying a set of approved screening tools, then working with primary health care providers and other medical staff in their delivery settings to improve their screening procedures and record keeping.

Sices, Laura, Developmental Screening in Primary Care: The Effectiveness of Current Practice and Recommendations for Improvement, The Commonwealth Fund, December 2007.

U.S. Department of Health and Human Services Center for Medicaid and Medicare Services (CMS), Medicaid Early & Periodic Screening, Diagnosis & Treatment Overview, available at: https://www.cms.gov/MedicaidEarlyPeriodicScrn/.

45 CFR 1304.20; For more information see Early Head Start National Resource Center, Developmental Screening, Assessment, and Evaluation: Key Elements for Individualizing Curricula in Early Head Start Programs. Available for download at: https://www.ehsnrc.org/pdffiles/FinalTap.pdf

Center on the Developing Child at Harvard University (2007). A Science-Based Framework for Early Childhood Policy: Using Evidence to Improve Outcomes in Learning, Behavior, and Health for Vulnerable Children. pg 3. https://developingchild.harvard.edu.

Guralnick, Michael J., Effectiveness of Early Intervention for Vulnerable Children: A Development Perspective, American Journal on Mental Retardation, 1998, Vol. 102, No. 4.

Donald B. Bailey, Jr., PhD, Kathleen Hebbeler, PhD, Donna Spiker, PhD, Anita Scarborough, PhD, Sangeeta Mallik PhD, Lauren Nelson, PhD. Thirty-Six Month Outcomes for Families of Children who Have Disabilities and Participated in Early Intervention, Pediatrics, Vol. 116, No. 6, December 2005.

Proven Benefits of Early Childhood Interventions; Research brief describing work for Rand Labor and Population documented in Early Childhood Interventions: Proven Results, Future Promise by Lynn A. Karoly, M. Rebecca Kilburn, and Jill S. Cannon, MG-341-PNC, 2005, 200 pages, ISBN: 0-8330-3836-2. Full document available at: https://www.rand.org/pubs/monograp.hs/MG341/.

American Academy of Pediatrics, Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening, Pediatrics, Volume 118, Number 1, July 2006.

American Academy of Pediatrics, Committee on Children with Disabilities, Developmental Surveillance and Screening of Infants and Young Children, Pediatrics, Volume 108, No. 1, 192-196, July 2001.

Marian F. Earls and Sherry Shackelford Hay, Setting the Stage for Success: Implementation of Developmental and Behavioral Screening and Surveillance in Primary Care Practice – The North Carolina Assuring Better Child Health and Development (ABCD) Project, Pediatrics (2006) 118, 183-188. www.pediatrics.org/cgi/content/full/118/1/e183.

Marian F. Earls and Sherry Shackelford Hay, Setting the Stage for Success: Implementation of Developmental and Behavioral Screening and Surveillance in Primary Care Practice – The North Carolina Assuring Better Child Health and Development (ABCD) Project, Pediatrics (2006) 118, 183-188. www.pediatrics.org/cgi/content/full/118/1/e183.

Laurel M. Bear, Early identification of infants at risk for developmental disabilities, Pediatric Clinics of North America, 2004 (51) 685-701.

General Accounting Office, MEDICAID: Stronger Efforts Needed to Ensure Children’s Access to Health Screening Services, GAO-01-749, July 2001, https://www.gao.gov/new.items/d01749.pdf.

Bright Futures/American Academy of Pediatrics, Recommendations for Preventive Pediatric Health Care, 2008.

National Center for Children in Poverty, Mailman School of Public Health, Columbia University, United States Early Childhood Profile, Updated August 18, 2010. Available for download at https://nccp.org/profiles/pdf/profile_early_childhood_US.pdf.

Laurel M. Bear, Early identification of infants at risk for developmental disabilities, Pediatric Clinics of North America, 2004 (51) 685-701.

American Academy of Pediatrics, Identifying Infants and Young Children with Developmental Disorders in the Medical Home: An Algorithm for Developmental Surveillance and Screening, Pediatrics, Volume 118, Number 1, July 2006.

https://www.cdc.gov/ncbddd/dd/ddsurv.htm.

IDEA Data Accountability Center, Part B Data and Notes, Child Count data.

Nationally in 2008: 2.5 percent served, source: See the IDEA Data Accountability Center, Part C Data and Notes, Child Count data, Table 8-1 (percentage and number).

Marian F. Earls and Sherry Shackelford Hay, Setting the Stage for Success: Implementation of Developmental and Behavioral Screening and Surveillance in Primary Care Practice – The North Carolina Assuring Better Child Health and Development (ABCD) Project, Pediatrics (2006) 118, 183-188. www.pediatrics.org/cgi/content/full/118/1/e183.

Laurel M. Bear, Early identification of infants at risk for developmental disabilities, Pediatric Clinics of North America, 2004 (51) 685-701.

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45 CFR 1304.20; For more information see Early Head Start National Resource Center, Developmental Screening, Assessment, and Evaluation:Key Elements for Individualizing Curricula in Early Head Start Programs. Available for download at: https://www.ehsnrc.org/pdffiles/FinalTap.pdf.  

What policies can states use to move toward this recommendation?

To move toward this recommendation, states may use multiple policy levers, starting from different points. Potential state policies include the following:

Licensing:

  • Include requirements based on Early Head Start Performance Standards, such as requiring licensed child care providers ensure vulnerable infants and toddlers receive comprehensive screenings within 45 days entering child care and appropriate referrals and follow-up, including funding to help child care providers do so either individually or by forming local networks.

  • Require in state licensing that child care providers receive pre-service training that includes information on age and culturally appropriate assessment for infants and toddlers, including the benefits, recommended screening schedule and information on connecting families to services.

Quality:

  • Create and fund local networks of child care providers and professionals who can conduct developmental screenings. Use these networks to identify infants and toddlers who are at-risk and entering child care with providers or family, friend and neighbor (FFN) caregivers to ensure these children receive comprehensive screenings within 45 days of entering care. These screenings should be linguistically, culturally and age appropriate, and include motor, language, mental health, social, cognitive, perceptual, emotional, sensory, and behavioral skills.
  • Encourage local partnerships between child care centers, family child care providers, FFN caregivers, EPSDT providers, the IDEA Part C early intervention Child Find program, and public health and community social service providers to carry out screenings and follow-up.
  • Fund partnerships with Early Head Start programs to allow vulnerable children in child care settings, including FFN care, to receive Early Head Start screening and follow up services.
  • Partner with the IDEA Part C early intervention Child Find program to identify infants and toddlers with special needs and create linkages with their child care providers and FFN caregivers.

  • Embed developmental screening, referrals, and follow up services for infants and toddlers in the levels of a state quality rating and improvement system.

Subsidy

  • Provide additional funding beyond the state child care subsidy payment rate structure to subsidy providers to ensure infants and toddlers receive comprehensive screenings within 45 days of entering child care or FFN care and appropriate referrals and follow-up.
  • Provide higher subsidy reimbursement rates to child care providers and FFN caregivers who facilitate access to comprehensive screening for vulnerable babies and toddlers.
  • Create contracts that pay higher rates and require child care providers to provide some developmental screening and other comprehensive services to vulnerable babies and toddlers.

Related Project Recommendations

The following resources may help your state get started in creating a plan to increase access to and utilization of developmental screening through child care programs and policies.