If we could redo history, if the National Council on Disability had remained an agency to coordinate the prevention of disability from both birth defects and birth injury and if it had kept some aspect of policy and research focus on prevention, 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?
As early as 1974 the National Center for Health Statistics reported that an inter-agency council should be created to coordinate and promote research for the prevention of disability from both birth defects and birth injury. In 1978 the National Council on Disability (NCD) was formed for this purpose.
By 1984, the National Council on Disability existed within the Department of Education and was transformed into an independent agency charged with reviewing all federal disability programs and policies. Under the NCD statutes, there are the closest among other provisions to adhere to its original purpose: (1)
• To provide advice to the Director with respect to the policies and conduct of the National Institute on Disability and Rehabilitation Research, including ways to improve research concerning individuals with disabilities and the methods of collecting and disseminating findings of such research. (2)
• To provide advice regarding priorities for the activities of the Interagency Disability Coordinating Council and review the recommendations of such Council for legislative and administrative changes to ensure that such recommendations are consistent with the purposes of the Council to promote the full integration, independence, and productivity of individuals with disabilities. (2)
A purpose of prevention was replaced with the purpose of coping with the effects of Developmental Disability.
In accordance with the Children’s Health Act of 2000, the Interagency Autism Coordinating Committee (IACC), lead by the National Institutes of Health (NIH) at the U.S. Department of Health and Human Services a Federal advisory committee was formed to coordinate Autism Spectrum Disorders related efforts across HHS, partner federal agencies and private stakeholder groups and advise the Secretary of HHS on issues related to ASD. (3) IACC facilitates ASD research, screening, intervention, and education. As part of this effort, the National Institutes of Health has invested in research to identify possible risk factors and effective therapies for people with ASDs. (4)
Unfortunately, in 2014 the U.S. GAB released this report based on 2008 to 2012 on Federal Autism Activities: Funding and Coordination Efforts which found there was 84% or 1,018 projects – had the potential to be duplicative because the projects were categorized to the same strategic plan objectives, research or areas of research and that the IACC had little coordination between research.
“Education, HHS and NSF do not show that they review research projects to ensure that they are not unnecessarily duplicative.”(5)
Why are there so many projects that have the same objectives and duplication? The focus of prevention funding was changed in 1984 to focus on the effects of birth injury under the definition of Developmental Disabilities. The prevention report changed from asking for the prevention of birth injury, the cause, to preventing the effect, Developmental Disabilities.
We have no longer sought to find the cause of birth injury disability. We agree that efforts should be given for research for early diagnosis, early intervention, rehabilitation, speech, occupational and physical therapies, and special education for the child with the disability and the family. Prevention, however, has come to mean dealing with the consequences of birth injury, not causes.
We have lost focus to prevent Developmental Disability from happening in the first place.
Here is an example of the research being done. National Institutes of Health (NIH) launched the Autism Centers of Excellence (ACE) program in 2007. This research again is focused on interventions, treatments, and brain development. “Data from the ACEs and other NIH funded ASD research is expected to be shared with researchers across the U.S. and around the world through the NIH National Database for Autism Research, maximizing the use of the data to accelerate ASD research. (6) This is a terrific effort for repository of research, and it is mostly focused on possible genetic causes and brain activity. Prevention must be the goal, and tracking data at birth is essential.
The NICHD has overseen the Neonatal Research Network, a program to research neonatal medicine. This center’s research database registers children born very premature and very low weight with various clinics. This information is descriptive of the baby’s background, perinatal and neonatal experience. The research is done for the betterment of neonatal medicine so not focused on causes. This research should be commended however, as it follows outcomes of medical procedures for at least 18 months of the child’s life. (7)
Just as discrimination laws took congressional action to change, it will take federal action to lead on funding research and technical advances in medical recording for the purpose of prevention. The medical community’s interest in treating and caring for patients has an obvious financial benefit to their industry. The medical community does not have the economic interest in investing in research of birth anomalies or injury or obstetric procedures or the long term effects at the time of birth.
It is much more fiscally important for our society for our representatives in legislature to focus on prevention, to support data collection of birth and development and research needed to look at long term effects to reduce the costs of disability. Data recorded at birth and on the birth certificate should be updated.
If you have information about the prevention of disability, please comment or send us an e-mail.
NHU invites you to visit our Report on the Prevention of Disabilities which focuses on the prevention of Developmental Disabilities.
(1) “History of NCD,” National Council on Disability, <http://www.ncd.gov/about>, (23 February 2015).
(2) NCD Authorizing Statute: From the Rehabilitation Act of 1973 (29 U.S.C. 780 et seq.): Sec. 780 – Establishment of National Council on Disability <http://www.ncd.gov/about/authorizing-statute> (23 February 2015).
(3) 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 <http://www.hhs.gov/autism/factsheet_autism_support.html> (31 March 2015).
(4) CDC Division of News and Electronic Media “Press Release: CDC estimates 1 in 88 children in United States has been identified as having an autism spectrum disorder” (March 29, 2012). <http://www.cdc.gov/media/releases/2012/p0329_autism_disorder.html> (30 December 2014).
(5) USGAO, Testimony Before the Subcommittee on Government Operations, Committee on Oversight and Government Reform, House of Representatives, “Federal Autism Activities: Funding and Coordination Efforts,” Statement of Marcia Crosse, May 20, 2014.
(6) 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 <http://www.hhs.gov/autism/factsheet_autism_support.html> (31 March 2015).
(7) NICHD Neonatal Research Network <https://neonatal.rti.org/about/gdb_background.cfm> (25 February 2015).