If we could redo history, had not redefined Developmental Disabilities in legislation through mental health acts or if we had not removed the 1989 State Birth and Developmental Outcome Monitoring Programs in 1999, would we be at a better place, have collected more data and research to understand the rising incidence of Developmental Disabilities such as Autism and Cerebral Palsy in children that we might better prevent disability?
Beginning in 1989, states administered programs to collect, analyze and disseminate information about adverse neonatal outcomes, birth defects, Developmental Disabilities and other severe disabilities in children from birth to age 6. These Birth and Developmental Outcome Monitoring Programs monitored birth defects but also, birth injury, neuromotor conditions, developmental delay, cerebral palsy, cerebral hemorrhage, Central Nervous System outcomes of the head, musculoskeletal conditions and more. (1)
In 1991, the article, “Disability in America: Toward a National Agenda for Prevention” by the National Academies Press, described the state of the U.S. developing an effective prevention program for disability. “Interfering with the development of effective prevention programs, however, is the lack of an effective public health surveillance network for monitoring the incidence and prevalence of disability, including predisposing risk factors. Without such a surveillance network, programs and policies intended to prevent disability will continue to be based on educated guesses rather than a solid data base that describes the sizable population of people that have either disabilities or a high risk of developing them. Furthermore, the fragmentation, gaps, and redundancies in the nation’s disability-related programs—the focus of criticism in other quarters besides this report—will persist.” (2)
In 1999 through legislation, states replaced the Birth and Developmental Outcome Monitoring Program with the Birth Defect Prevention and Surveillance System. Autism Spectrum Disorder, Cerebral Palsy and outcomes other than birth defects had been redefined in legislation under Developmental Disabilities, many years earlier and not included in this new birth defect registry. (3)
With this shift in 1999, children with birth outcomes of Cerebral Palsy, Vision Impairment, Hearing Impairment, Autism Spectrum Disorder, Intellectual Disability, or Learning Disability defined by the term Developmental Disability, were now placed under different laws. Developmental Disabilities were no longer tracked, monitored or registered. By changing the focus and only including birth defects in monitoring, how will we ever have data for research to find the causes of Developmental Disabilities that we may prevent them? Not only do we not report Developmental Disabilities at birth, but there is no mandate to track Developmental Disabilities anytime after birth.
Prejudging or suppressing information rather than learning from the data is reminiscent of a dark age of medicine philosophy.
In the 2014 Autism CARES Act the CDC will be pursue to identify research participants in 2 year old children to prove that screening children with Autism earlier would be more effective for treatment. Would it not be better to monitor abnormal neonatal outcomes from birth through 2 years old to get a more reliable data source of birth through diagnoses of disability and through the lifetime for long term side effects? (5)
If we had kept the Birth and Developmental Outcome Monitoring Programs, we might know a great deal more about developmental disability for this quickly developing crisis that we are now facing.
What other road blocks in collecting data for research do we face to find the causes of Developmental Disabilities so we might prevent disability? If you have information about the prevention of disability, please comment or send us an e-mail.
NHU invites you to visit our Spring 2015 Report on the Prevention of Disabilities which focuses on the prevention of Developmental Disabilities.
(1) Wisconsin Clearinghouse Rule 02-117, Order of the DHFS Repealing Recreating Rules, “To repeal and recreate chapter HFS 116, relating to a birth defect prevention and surveillance system.”
(2) “Disability in America: Toward a National Agenda for Prevention”, National Academies Press, <http://www.nap.edu/openbook.php?record_id=1579&page=4 > (2 December 2014).
(3) Wisconsin Clearinghouse Rule 02-117, Order of the DHFS Repealing Recreating Rules, “To repeal and recreate chapter HFS 116, relating to a birth defect prevention and surveillance system.”
(4) (WDHFS) Division of Public Health, Bureau of Community Health Promotion, Maternal and Child Health Program. Wisconsin Birth Defects Registry, (PPH 40150). January 2008. <http://www.dhs.wisconsin.gov/publications/P4/p40150.pdf > (02 December 2014).
(5) Taryn Mackenzie Williams, “President Obama Signs Bill to Support the Needs of People with Autism.” The White House Blog (August 11, 2014).