AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

Why is it essential that each person be counted, beyond the need to determine representation in the Congress? Because the distributions of government federal funds often are based on population numbers in individual states, locales and desperate circumstances (e.g. weather disasters and medical emergencies) and yes, the health circumstances of individuals of all ages.

Undercounting Young Children with Severe Disabilities: A Need for Change

BY H. BARRY WALDMAN, DDS, MPH, PHD, RICK RADER, MD, DHL (HON), ALICIA BAZZANO MD, PHD, MPH AND STEVEN P. PERLMAN, DDS, MSCD, DHL (HON)

A previous article in Exceptional Parent Magazine reviewed the U.S. Census Bureau annual American Community Survey demographic findings that an estimated 155,000 children less than five years of age among the civilian noninstitutionalized population had one or more severe disability. The survey reports estimated data for six disability categories (hearing, vision, cognitive, ambulatory, self-care and independent living difficulties) for individuals five years and older. However, for children less than five years, the report sought information only for hearing and sight difficulties.1 By contrast, the Global Burden of Disease Study reported that almost 810,000 U.S. children, less than five years of age, had developmental disabilities in 2016.2

"Does the repeated published undercount of the number of children less than age five with disabilities really matter? That is like asking whether it matters that hundreds or thousands (even more) of eligible residents do not vote in a particular election. Numbers do count, in terms of efforts to bring about change, and how to plan for the results of needed change… Adding to difficulties in accurately determining the full extent of children with varying types of disabilities among children less than five years of age, is the reality of the Census Snafu (i.e. situation normal, all fouled up). Nearly one in four children under the age of five years in the U.S. lives in areas at risk of being missed by census employees in 2020." 1,3

AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE AND DENTISTRY

The American Academy of Developmental Medicine and Dentistry (AADMD) was organized in 2002 to provide a forum for healthcare professionals who provide clinical care to people with neurodevelopmental disorders and intellectual disabilities (ND/ID). The mission of the organization is to improve the quality and assure the parity of healthcare for individuals with neurodevelopmental disorders and intellectual disabilities throughout the lifespan.

WHO'S COUNTING: The distributions of government federal funds often are based on population numbers in individual states, locales and desperate circumstances (e.g. weather disasters and medical emergencies) and yes, the health circumstances of individuals of all ages.

A more recent in-depth report by members of the National Center for Health Statistics adds a further dimension in determining the number of children with disabilities less than five years of age between the periods of 2009-2011 and 2015-2017. The review considers the prevalence and trends of developmental disabilities among U.S. children between 3 and 17 years. While children three to five years are not considered separately, the study does demonstrate that this younger age group can (and should be) included in a wider review of disabilities (than just hearing and vision disabilities) that affect very young children.

FINDINGS FROM THE REPORT BY NATIONAL CENTER FOR HEALTH STATISTICS

• There were overall significant increases in the prevalence of any developmental disability (including attention-deficit/ hyperactive disorder, autism spectrum disorder and intellectual disability) but a significant decrease for any other developmental delay.

• "The prevalence of developmental disability among US children aged 3 to 17 years increased between 2009 and 2017. However, changes by demographic and socioeconomic subgroups may be related to improvements in screening and access to health care." 4

• "Developmental disabilities are a group of lifelong conditions due to an impairment in physical, learning, language, or behavior areas. Children diagnosed with developmental disabilities typically require services to address behavior and development challenges. Measuring the prevalence of developmental disabilities in the population helps gauge the adequacy of available services and interventions." 4

SO WHAT IF VERY YOUNG CHILDREN WITH DISABILITIES ARE NOT COUNTED BY THE CENSUS BUREAU?

"The U.S. Constitution empowers the Congress to carry out the census in 'such manner as they shall by Law direct' (Article I, Section 2). The Founders of our fledgling nation had a bold and ambitious plan to empower the people over their new government. The plan was to count every person living in the newly created United States of America, and to use that count to determine representation in the Congress.

Enshrining this invention in our Constitution marked a turning point in world history. Previously censuses had been used mainly to tax or confiscate property or to conscript youth into military service. The genius of the Founders was taking a tool of government and making it a tool of political empowerment for the governed over their government…" 5

"On numerous occasions, the courts have said the Constitution gives Congress the authority to collect statistics in the census… The degree to which the information is needed for the promotion of legitimate governmental interests has been found to be significant." 5

Why is it essential that each person be counted, beyond the need to determine representation in the Congress? Because the distributions of government federal funds often are based on population numbers in individual states, locales and desperate circumstances (e.g. weather disasters and medical emergencies) and yes, the health circumstances of individuals of all ages.

Medicaid (a federal and state financed program) provides a lifeline for children with disabilities and their families. More than half of all children with a disability or other special health care needs rely on public insurance coverage for a wide range of services and supports. Because Medicaid extends eligibility in multiple ways to children with disabilities, it reaches a broad range of families and children with disabilities. "Compared to other children, youngsters with disabilities are more likely to live in low-income households. Many qualify for Medicaid based on their families' income alone – without it, they would likely have no other affordable insurance options.

For many of these families, Medicaid is the difference between being able to comfortably access comprehensive care for their child and falling into debt due to medical expenses." 6 (It is because of this reality that determining the extent of needed financial support, that the number of all children with disabilities in a state becomes critical!)

ADDITIONAL FINDINGS FROM THE REPORT BY THE NATIONAL CENTER FOR HEALTH STATISTICS CENTER FOR HEALTH STATISTICS

• Non-Hispanic white children were most likely to be diagnosed with attention-deficit/hyperactive disorder (ADHD) than non-Hispanic black or Hispanic children.

• Children receiving any form of public health insurance are more likely to be diagnosed with any and each of the individual developmental disabilities when compared with children receiving only private health insurance and uninsured children with the exception of blindness among uninsured children.

YES, IT IS DIFFICULT TO DETERMINE THE TYPE AND DEGREE OF DISABILITY AMONG VERY YOUNG CHILDREN

However, the need is to establish a methodology which would permit the Census Bureau to adopt a more realistic approximation of future numbers and costs for the support of very young children with disabilities who will impact on the health, education and social systems as they get older.

One approach would be to assign three categories for children under five years of age with disabilities: 1) Hearing limitations, 2) Sight limitations, and 3) Other disabilities.* 

A more realistic approach for determining population numbers and potential future costs for essential health, education and social services is critical. Recording only sight and hearing disabilities for children under five years of age is an unrealistic solution.•

* Type and severity to be determined at an older age.

ABOUT THE AUTHORS:

H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: h.waldman@stonybrook.edu Rick Rader, MD, DHL (Hon) is the Director of Morton J. Kent Habilitation Center, Orange Groove, Chattanooga, TN, Senior VP Public Policy, American Academy of Developmental Medicine and Dentistry; Adjunct Professor, Human Development, University of Tennessee-Chattanooga. He is Exceptional Parent Magazine's Editor in Chief. Alicia Bazzano MD, PhD, MPH is the Chief Health Officer of Special Olympics, and Assistant Clinical Professor at the David Geffen School of Medicine, UCLA. Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine.

References

1. Waldman HB, Perlman SP, Larsen CD. Surely there are more than about 155,000 children less than 5 years of age with disabilities in the U.S. EP Magazine 49:14-6, December 2018. 2. Global Research on Developmental Disabilities. Your responses are safe. Your responses to the 2020 Census will never be shared with other government agencies. It's the law. It's also an oath every Census Bureau employee must swear to uphold. For more information, visit: 2020CENSUS.GOV D-PO-GP-EN-047 Developmental disabilities among children younger than 5 years in 195 countries and territories. 1990-2016; a systematic analysis for the Global Burden Disease Study 2016. Available from: the- lancet.com/journals/langlo/article/PH11S2214-109X(18)30309-7/full-text Accessed September 1, 2018. 3. Donnelly G. Do you know where the children are? Fortune, 2018 September: 20. 4. Zablotsky B, Black LI, Maenner MJ, et al. Prevalence and trends of developmental disabilities among children in the United States: 2009-2017. Available from: pediatrics.aappublica- tions.org/content/earluy/2019/09/24/peds.2019-0811 Accessed October 1, 2019. 5. U.S. Census Bureau. Decennial Census of Population and Housing. Available from: census.gov/programs-sur- veys/decennialcensus/about/censusconstitution.html americanprogress.org/issues/early- childhood/reports/2017/05/03/431766/cuts-medicaid-harm-youngchildren-disabilities/ Accessed October 2, 2019. 6. Center for American Progress. Early childhood. Cuts to Medicaid would harm young children with disabilities. Available from: americanprogress.org/issues/early- childhood/reports/2017/05/03/431766/cuts-medicaid-harm-youngchildren-disabilities/ Accessed October 2, 2019.