Developmental Disabilities are a great cost to our children, families and society; they are a critical public health issue that deeply impacts the lives of millions of Americans. (1)

Each year approximately 120,000 children are diagnosed with a lifelong Developmental Disability. The Center for Disease Control (CDC) has estimated the lifetime cost of care for each individual citizen with Intellectual Disability and Cerebral Palsy is nearly $1 million (in 2003 dollars), approximately one half that figure for those with Vision or Hearing Impairments. (Caregiver, family out-of-pocket, hospital outpatient, emergency department, and residential care for persons not living in households were excluded due to limited data).

This means that each year a cost well over $75 billion (in 2003 dollars) is added to our societal debt over the duration of their lifetime. (2)

But—- there are not just economic costs. There are costs of time, delayed learning, stress and health, loss of ability to work or live a fulfilling life, loss of talent, productivity and contribution to society by both child and family and even bureaucracy.

Disability in childhood can result in devastating lifelong, social, emotional, psychological, vocational, and economic impacts. These costs continue to grow and become more of a challenge for communities and health systems. As these systems fail to respond, for families, costs may become devastating. (3)
The cost of disability is so great that it is quite simply fiscally irresponsible for our collective futures to ignore the needs for research for prevention.

America’s health care system is in crisis precisely because we systematically neglect wellness and prevention. — Retired U.S. Senator, Tom Harkin

It absolutely would be fiscally responsible; to strengthen existing data systems to advance understanding of the causes of Developmental Disabilities to lessen the cost for future individuals and their families. (4)

What we do not know about the cause of Developmental Disabilities cannot be allowed to go on. We must collect data. The time to act is today!

NHU invites you to visit our 2015 Report on the Prevention of Disabilities which focuses on the prevention of Developmental Disabilities. This Report is a Call to Action in protecting newborns, their parents and society from disabilities by acting to establish a more comprehensive data collection at birth. It is also a call for an open and honest dialog between medical professionals, government sponsored support and research and the individuals affected by Developmental Disability and their families to broaden the scope of data collected through the U.S. Standard Certificate of Live Birth. This update of data systems is necessary to more effectively meet current research needs for the purpose of preventing disabilities.

(1) U.S. Department of Health and Human Services, “Our Commitment to Supporting Individuals on the Autism Spectrum and their Families,” (last updated March 27 2014) pp.7. <> (31 March 2015).

(2) CDC Department of Health and Human Services, “Developmental Disabilities, Monitoring Developmental Disabilities.” (Atlanta, GA, October 29, 2004).

(3) Neal Halfon, Amy Houtrow, Kandyce Larson, and Paul W. Newacheck – summary, “The Changing Landscape of Disability in Childhood “– vol.22/No.1/Spring 2012 – <> (14 January 2015).

(4) Kenneth Keniston, All Our Children: the American Family Under Pressure, (Harcourt Brace Jovanovich, 1977).

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