National inequities in early intervention services

Every day, we hear about people with developmental and/or mental health problems, antisocial/criminal behavior, gun violence, unemployment, poverty, subpar academic performance, high school drop outs, tobacco and substance abuse, or an unhealthy national debt to gross domestic product ratio. One overlooked barrier to preventing these problems is the absence of a federal-level, evidence-based definition for which children (0-3 years) possess a "developmental delay" (acquiring skills at a rate significantly slower than their peers) and which "at-risk" children are most deserving of publically funded early intervention (EI) services.

Imagine seeing a 12-month-old boy for his well-visit. He hasn’t said his first word yet and is frequently having temper tantrums. You appropriately refer him to an EI agency because of a positive/concerning, nationally standardized screening questionnaire. The parents follow up with the EI agency only to learn that their child "did not qualify" because his developmental-behavioral issues were not yet pronounced enough to meet your state’s eligibility criteria. Curiously, he "no-shows" for his 18-month well-visit, but you see him at again at 24 months and refer him to the EI agency for the second time. Then, the parents fail to promptly follow up. Eventually, at 39 months of age, he is diagnosed with autism and only then begins receiving intensive EI services. Think this is an uncommon story of a missed opportunity to prevent or ameliorate a developmental-behavioral problem? Well, it’s a true story.

If a child happens to live in Massachusetts, she might easily qualify for EI while another child with the exact same developmental-behavioral issues would not qualify if she lives in Missouri. Shockingly, 48 states have adopted no less than 22 unique numerical definitions of a developmental delay or EI eligibility and two states (Hawaii and Vermont) have not adopted any numerical criteria to determine EI eligibility.

Even though 15%-17% of U.S. children have a developmental disability and 21% have a mental health disorder, the proportion of infants and toddlers enrolled in EI or Part C under the federal Individuals with Disabilities Education Act (IDEA) services ranges from a low of 1.5% (Georgia) to a high of 7% (Massachusetts). Four states (Massachusetts, New Hampshire, New Mexico, and West Virginia) automatically provide EI services to "developmental delayed" children and those "at risk" for emerging developmental-behavioral problems. However, if you have an "at-risk" child who is living in a state with strict eligibility criteria such as Georgia, Arizona, or Missouri, then the chances of your child receiving EI spirals downward. Millions of "at-risk" children are falling through the cracks.

The absence of a consensus-driven, defensible federal definition of what constitutes a developmental delay or "at-risk" condition in infants and toddlers, based on research rather than funding allocations, contributes to the inequitable, inefficient, and ineffective care that many U.S. children with developmental-behavioral problems receive. Wild variability across states is typically the result of short-sighted state budget decisions (strict eligibility standards reduce short-term EI costs to states and schools), but not the science of child development.

National inequities in EI services are not solely caused by differences in eligibility requirements. There are also big differences in statewide "early-detection systems" and care coordination efforts. Georgia has a substantially lower EI enrollment rate (1.5%) than Connecticut (3.8%) even though these two states share the exact same EI eligibility definition. This glaring difference is likely because of Connecticut’s Help Me Grow program, which fosters early detection, referral and care coordination services, but sadly, numerous other states lack this type of infrastructure altogether. Many referred children with positive/concerning developmental-behavioral screens who "do not qualify" for EI services will later be diagnosed as having a developmental-behavioral disorder with at least mild impairment. Importantly, children with milder delays often respond best to EI.

It’s frustrating for parents and providers – and tragically costly for our society – when infants and toddlers with red-flagged screenings do not receive EI services. For every dollar spent on early childhood development programs, there is a 7%-10% annual return rate in cost savings to society – and the younger the child served, the wiser the investment. Therefore, I’m urging the American Academy of Pediatrics (AAP), policy makers, and other early childhood advocates to help:

• Create a research- and/or consensus-driven "baseline" definition for EI eligibility. If certain states can afford to serve a greater proportion of "at-risk" children, then they should have the right to do so.

• Reform the federal IDEA Part C statute. Just as special education services for children 3-21 years (IDEA Part B) are mandated, Part C services should be required by the federal IDEA statute and not treated as discretionary. The timing is right, as IDEA – last revised in 2004 – is in the congressional pipeline to be reauthorized.

• Ensure that children universally receive developmental-behavioral screenings, as recommended by the AAP and as supported by a randomized controlled trial by Guevara et al. (Pediatrics 2013;131:30-7). Then speed children/families with suspected problems to the most appropriate and effective community resource(s) with the help of system-wide referral and care coordination programs.

Dr. Marks is a general pediatrician at PeaceHealth Medical Group in Eugene, Ore., and coeditor of "Developmental Screening in Your Community: An Integrated Approach to Connecting Children with Services"and "Identifying and Addressing Developmental-Behavioral Problems."

Every day, we hear about people with developmental and/or mental health problems, antisocial/criminal behavior, gun violence, unemployment, poverty, subpar academic performance, high school drop outs, tobacco and substance abuse, or an unhealthy national debt to gross domestic product ratio. One overlooked barrier to preventing these problems is the absence of a federal-level, evidence-based definition for which children (0-3 years) possess a "developmental delay" (acquiring skills at a rate significantly slower than their peers) and which "at-risk" children are most deserving of publically funded early intervention (EI) services.

Imagine seeing a 12-month-old boy for his well-visit. He hasn’t said his first word yet and is frequently having temper tantrums. You appropriately refer him to an EI agency because of a positive/concerning, nationally standardized screening questionnaire. The parents follow up with the EI agency only to learn that their child "did not qualify" because his developmental-behavioral issues were not yet pronounced enough to meet your state’s eligibility criteria. Curiously, he "no-shows" for his 18-month well-visit, but you see him at again at 24 months and refer him to the EI agency for the second time. Then, the parents fail to promptly follow up. Eventually, at 39 months of age, he is diagnosed with autism and only then begins receiving intensive EI services. Think this is an uncommon story of a missed opportunity to prevent or ameliorate a developmental-behavioral problem? Well, it’s a true story.

If a child happens to live in Massachusetts, she might easily qualify for EI while another child with the exact same developmental-behavioral issues would not qualify if she lives in Missouri. Shockingly, 48 states have adopted no less than 22 unique numerical definitions of a developmental delay or EI eligibility and two states (Hawaii and Vermont) have not adopted any numerical criteria to determine EI eligibility.

Even though 15%-17% of U.S. children have a developmental disability and 21% have a mental health disorder, the proportion of infants and toddlers enrolled in EI or Part C under the federal Individuals with Disabilities Education Act (IDEA) services ranges from a low of 1.5% (Georgia) to a high of 7% (Massachusetts). Four states (Massachusetts, New Hampshire, New Mexico, and West Virginia) automatically provide EI services to "developmental delayed" children and those "at risk" for emerging developmental-behavioral problems. However, if you have an "at-risk" child who is living in a state with strict eligibility criteria such as Georgia, Arizona, or Missouri, then the chances of your child receiving EI spirals downward. Millions of "at-risk" children are falling through the cracks.

The absence of a consensus-driven, defensible federal definition of what constitutes a developmental delay or "at-risk" condition in infants and toddlers, based on research rather than funding allocations, contributes to the inequitable, inefficient, and ineffective care that many U.S. children with developmental-behavioral problems receive. Wild variability across states is typically the result of short-sighted state budget decisions (strict eligibility standards reduce short-term EI costs to states and schools), but not the science of child development.

National inequities in EI services are not solely caused by differences in eligibility requirements. There are also big differences in statewide "early-detection systems" and care coordination efforts. Georgia has a substantially lower EI enrollment rate (1.5%) than Connecticut (3.8%) even though these two states share the exact same EI eligibility definition. This glaring difference is likely because of Connecticut’s Help Me Grow program, which fosters early detection, referral and care coordination services, but sadly, numerous other states lack this type of infrastructure altogether. Many referred children with positive/concerning developmental-behavioral screens who "do not qualify" for EI services will later be diagnosed as having a developmental-behavioral disorder with at least mild impairment. Importantly, children with milder delays often respond best to EI.

It’s frustrating for parents and providers – and tragically costly for our society – when infants and toddlers with red-flagged screenings do not receive EI services. For every dollar spent on early childhood development programs, there is a 7%-10% annual return rate in cost savings to society – and the younger the child served, the wiser the investment. Therefore, I’m urging the American Academy of Pediatrics (AAP), policy makers, and other early childhood advocates to help:

• Create a research- and/or consensus-driven "baseline" definition for EI eligibility. If certain states can afford to serve a greater proportion of "at-risk" children, then they should have the right to do so.

• Reform the federal IDEA Part C statute. Just as special education services for children 3-21 years (IDEA Part B) are mandated, Part C services should be required by the federal IDEA statute and not treated as discretionary. The timing is right, as IDEA – last revised in 2004 – is in the congressional pipeline to be reauthorized.

• Ensure that children universally receive developmental-behavioral screenings, as recommended by the AAP and as supported by a randomized controlled trial by Guevara et al. (Pediatrics 2013;131:30-7). Then speed children/families with suspected problems to the most appropriate and effective community resource(s) with the help of system-wide referral and care coordination programs.

Dr. Marks is a general pediatrician at PeaceHealth Medical Group in Eugene, Ore., and coeditor of "Developmental Screening in Your Community: An Integrated Approach to Connecting Children with Services"and "Identifying and Addressing Developmental-Behavioral Problems."

Every day, we hear about people with developmental and/or mental health problems, antisocial/criminal behavior, gun violence, unemployment, poverty, subpar academic performance, high school drop outs, tobacco and substance abuse, or an unhealthy national debt to gross domestic product ratio. One overlooked barrier to preventing these problems is the absence of a federal-level, evidence-based definition for which children (0-3 years) possess a "developmental delay" (acquiring skills at a rate significantly slower than their peers) and which "at-risk" children are most deserving of publically funded early intervention (EI) services.

Imagine seeing a 12-month-old boy for his well-visit. He hasn’t said his first word yet and is frequently having temper tantrums. You appropriately refer him to an EI agency because of a positive/concerning, nationally standardized screening questionnaire. The parents follow up with the EI agency only to learn that their child "did not qualify" because his developmental-behavioral issues were not yet pronounced enough to meet your state’s eligibility criteria. Curiously, he "no-shows" for his 18-month well-visit, but you see him at again at 24 months and refer him to the EI agency for the second time. Then, the parents fail to promptly follow up. Eventually, at 39 months of age, he is diagnosed with autism and only then begins receiving intensive EI services. Think this is an uncommon story of a missed opportunity to prevent or ameliorate a developmental-behavioral problem? Well, it’s a true story.

If a child happens to live in Massachusetts, she might easily qualify for EI while another child with the exact same developmental-behavioral issues would not qualify if she lives in Missouri. Shockingly, 48 states have adopted no less than 22 unique numerical definitions of a developmental delay or EI eligibility and two states (Hawaii and Vermont) have not adopted any numerical criteria to determine EI eligibility.

Even though 15%-17% of U.S. children have a developmental disability and 21% have a mental health disorder, the proportion of infants and toddlers enrolled in EI or Part C under the federal Individuals with Disabilities Education Act (IDEA) services ranges from a low of 1.5% (Georgia) to a high of 7% (Massachusetts). Four states (Massachusetts, New Hampshire, New Mexico, and West Virginia) automatically provide EI services to "developmental delayed" children and those "at risk" for emerging developmental-behavioral problems. However, if you have an "at-risk" child who is living in a state with strict eligibility criteria such as Georgia, Arizona, or Missouri, then the chances of your child receiving EI spirals downward. Millions of "at-risk" children are falling through the cracks.

The absence of a consensus-driven, defensible federal definition of what constitutes a developmental delay or "at-risk" condition in infants and toddlers, based on research rather than funding allocations, contributes to the inequitable, inefficient, and ineffective care that many U.S. children with developmental-behavioral problems receive. Wild variability across states is typically the result of short-sighted state budget decisions (strict eligibility standards reduce short-term EI costs to states and schools), but not the science of child development.

National inequities in EI services are not solely caused by differences in eligibility requirements. There are also big differences in statewide "early-detection systems" and care coordination efforts. Georgia has a substantially lower EI enrollment rate (1.5%) than Connecticut (3.8%) even though these two states share the exact same EI eligibility definition. This glaring difference is likely because of Connecticut’s Help Me Grow program, which fosters early detection, referral and care coordination services, but sadly, numerous other states lack this type of infrastructure altogether. Many referred children with positive/concerning developmental-behavioral screens who "do not qualify" for EI services will later be diagnosed as having a developmental-behavioral disorder with at least mild impairment. Importantly, children with milder delays often respond best to EI.

It’s frustrating for parents and providers – and tragically costly for our society – when infants and toddlers with red-flagged screenings do not receive EI services. For every dollar spent on early childhood development programs, there is a 7%-10% annual return rate in cost savings to society – and the younger the child served, the wiser the investment. Therefore, I’m urging the American Academy of Pediatrics (AAP), policy makers, and other early childhood advocates to help:

• Create a research- and/or consensus-driven "baseline" definition for EI eligibility. If certain states can afford to serve a greater proportion of "at-risk" children, then they should have the right to do so.

• Reform the federal IDEA Part C statute. Just as special education services for children 3-21 years (IDEA Part B) are mandated, Part C services should be required by the federal IDEA statute and not treated as discretionary. The timing is right, as IDEA – last revised in 2004 – is in the congressional pipeline to be reauthorized.

• Ensure that children universally receive developmental-behavioral screenings, as recommended by the AAP and as supported by a randomized controlled trial by Guevara et al. (Pediatrics 2013;131:30-7). Then speed children/families with suspected problems to the most appropriate and effective community resource(s) with the help of system-wide referral and care coordination programs.

Dr. Marks is a general pediatrician at PeaceHealth Medical Group in Eugene, Ore., and coeditor of "Developmental Screening in Your Community: An Integrated Approach to Connecting Children with Services"and "Identifying and Addressing Developmental-Behavioral Problems."