Question: Does your Child Have a Disability?

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AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

BY H. BARRY WALDMAN DDS, MPH, PHD, STEVEN P. PERLMAN DDS, MSCD, DHL (HON) AND MATTHEW COOKE, DDS, MD, MPH

Under the Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD), governments around the world have taken upon themselves the responsibility of ensuring that all children, irrespective of ability or disability, enjoy their rights without discrimination of any kind.

INTRODUCTION
Does your child have a disability? It seems like a straight forward question. However, as detailed in the UNICEF report on The State of the World’s Children 2013, “Measuring child disability presents a unique set of challenges. Because children develop and learn to perform basic tasks at different speeds, it can be difficult to assess function and distinguish significant limitations from variation in development.”1 The report cites, the poor quality of data on child disability as a consequence of “…limited understanding of what disability is in children and …stigma or insufficient investment in improving measurement.”1

Under the Convention on the Rights of the Child (CRC) and the Convention on the Rights of Persons with Disabilities (CRPD), governments around the world have taken upon themselves the responsibility of ensuring that all children, irrespective of ability or disability, enjoy their rights without discrimination of any kind. As of February 2013, 193 countries had ratified the CRC and 127 countries and the European Union had ratified the CRPD.1 “These two Conventions bear witness to a growing global movement dedicated to the inclusion of children with disabilities in community life.”1 But how many children (and adults) have disabilities and to what degree?

“By one widely used estimate, some 53 million children – or 1 in 20 of those aged 14 or younger – live with a moderate or severe disability of some kind. Such global estimates are essentially speculative. They are dated – this one has been in circulation since 2004 – and derived from data of quality too varied and methods too inconsistent to be reliable.”1
• Estimates of disability prevalence vary, depending on the definitions of disability that are used. Narrow medical definitions are likely to yield lower estimates than broader ones that take into consideration social barriers to functioning and participation.
• A low reported prevalence of disability may be the consequence of low survival rates for young children with disabilities, or it
may reflect the failure to count children with profound disabilities who are confined to institutions or who are hidden away by families fearful of discrimination.
• Culture also plays an important role. The interpretation of what may be considered “normal” functioning varies.1

For example, “Parental report of health conditions is somewhat dependent on access to appropriate health or educational services for diagnosis, as well as communication of that diagnosis to the parent.”2 In the United States:
• Hispanic children are more likely than non-Hispanic white children to lack access to health care services and specialized health practitioners, to be uninsured and lack a usual place of medical care. 3-5
• Results from a national survey of children with special needs described comparable barriers faced by children in Spanish speaking households, and the added finding of a lower prevalence of the need for, or use of, prescription medication for chronic conditions.2,3


Table 1. Responses to example questions used to determine the proportion of the population reporting some form of disability: 1991-2002 1, 10, 11 —-   Proportion with a disability
Australia

• Is this person handicapped by a serious long term illness or physical or mental condition? 5%
• Is there anyone in the household who has any loss of sight? Does everyone have full use of their arms and fingers?  4%
 • Does anyone in the household have anything wrong with their speech? Does anyone have a nervous or emotional condition? (65 + years)  19%

Turkey

• Do you have a visible physical disability, mental disorder or psychological defect? 1%
• Do you have any disfigurement, restriction of movement, bone disease, muscular weakness; lack,shortness or excess of your hands, arms feet, legs, fingers or backbone? 12%

USA          

• Is there a person deaf or has serious difficulty hearing? (all ages)
• Is there a person blind or has serious difficulty seeing even when wearing glasses? (all ages)
• Because of physical, mental, or emotional condition, does this person have serious difficulty concentrating remembering, or making decisions? (5+ years)
 • Does this person have serious difficulty walking or climbing stairs (dressing or bathing)? (5+ years)
 • Because of physical, mental, or emotional condition, does this person have difficulty doing errands alone such as visiting a doctor’s office or shopping? (15+ yrs)
                                                           Some disability 18.7% Severe disability 12.6%


As a result, developmental problems may be more likely to go undiagnosed and untreated among Hispanic children. This may explain why the prevalence of certain developmental conditions (autism, intellectual disabilities and cerebral palsy) is lower in Hispanic children.6 In the same way, “attention-deficit/hyperactivity disorder (ADHD) may be diagnosed less often (and under treated) in Hispanics than in Caucasian patients.”7 Similarly, Hispanic children may experience higher rates of unmet mental health services needs as a result of both language and cultural issues. 8

The list of adverse health consequences for children because of language communication issues (e.g. inadequate or incorrect medical and family histories, and the listing of medications being taken) continues with the possible outcome of misdiagnoses, inappropriate prescribed medication and hospitalization.9

RESULTS OF DIFFERENT QUESTIONS
The UNICEF and U.S. reports provide examples of the responses to various questions used to determine in different countries the proportion of the population reporting some form of disability. In general, questions which identify specific disabilities tend to elicit a greater proportion of affirmative responses. (See Table 1) Thus the question: “does your child have a disability?” may not provide a complete picture of the number of children with disabilities in a community or a country and the severity of the condition.

In addition, even repeatedly tested questionnaires provide such varied results that they raise questions regarding their validity. For example, using the same study template, the results from a 2005-06 international study indicated that, the percentage of children who were reported with a disability ranged from 3 percent in Uzbekistan to 48 percent in the Central African Republic. “It was not clear whether this variance reflected true differences among populations sampled or additional factors. For instance, the low reported rate in Uzbekistan might have reflected, among other things, a large population of children with disabilities living in institutions, which are not subject to household surveys.”1

U.S. DISABILITY PREVALENCE
Approximately 56.7 million people had some kind of disability in 2010. This accounted for 18.7% of the 303 million people in the civilian noninstitutionalized population. About 12.6% or 38.3 million people had a severe disability “As a generally accepted understanding of prevalence, the risk of having a disability increased with successively older age groups. At 70.5%, people in the oldest age group (people 80 years and older) were about 8 times as likely to have a disability as people in the youngest age group (children less than 15 years old), at 8.4%” 10 (see Graph 1).

ASSUME WE HAVE AN APPROXIMATION OF DISABILITY RATES – WHAT’S NEXT?
Ratification of the Convention on the Rights of Persons with Disabilities and Rights of the Child (as well as the American with Disabilities Act) is not enough. “The process of honouring commitments in practice will require effort on the part of national governments, local authorities, employers, disabled people’s organization and parents’ associations.” 1

Discrimination lies at the root of many of the challenges confronted by children with disabilities. “Discrimination on the grounds of disability is a form of oppression.” 1 All children’s environments – early childhood centers, schools, health facilities, public transportation, playgrounds and so on – followed by opportunities for employment commensurate with abilities, availability of needed health and support services are essential. “Disability does not mean incapability…”1 •

ABOUT THE AUTHORS:
H. Barry Waldman, DDS, MPH, PhD – Distinguished Teaching Professor, Department of General Dentistry at Stony Brook University, NY; E-mail: h.waldman@stonybrook.edu
Steven P. Perlman, DDS, MScD, DHL (Hon) is Global Clinical Director, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine, Private pediatric dentistry practice – Lynn MA.
Matthew Cooke, DDS, MD, MPH is Associate Professor, Departments of Anesthesiology & Pediatric Dentistry University of Pittsburgh School of Dental Medicine Pittsburgh PA; Assistant Clinical Professor, Departments of Oral & Maxillofacial Surgery and Pediatric Dentistry Virginia Commonwealth University School of Dentistry, Richmond, VA.


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.


References
1. United Nations Children Fund. The State of the World’s Children 2013. New York: United Nations Children Fund, May 2013.
2. Avila RM, Blumberg SA. Centers for Disease Control and Prevention. Chronic developmental conditions among Hispanic children in the United States, 2003 and 2005-2006. Web site: http://www.cdc Accessed October 4, 2013.
3. Kuhlthau K, Nyman RM, Ferris TG, Beal AC, Perrin JM. Correlates of use of specialty care. Pediatrics 2004;113(3Pt 1):e249-55.
4. Flores G, Olson L, Tomany-Korman SC. Racial and ethnic disparities in early childhood health and health care. Pediatrics 2005;115(2):e183-93.
5. Yu SM, Nyman RM, Kogan MD, Huang ZJ, Schwalberg RH. Parent’s language of interview and access to care for children with special health care needs. Ambul Pediatr 2004;4(2):181-7.
6. Read D, Bethell, C, Blumberg SJ, Abreau M, Molina C. An evaluation and cultural validity of the Spanish language version of the children with special health care needs screener. Matern Child Health J 2007;11:568-85.
7. Rothe EM. Considering cultural diversity in the management of ADHD in Hispanic patients. J Nat Med Assoc 2005;97(10 Suppl):17S-23S.
8. Lopez C, Bergren MD, Painter SG. Latino disparities in child mental health services. J Child Adolesc Psychiatr Nurs 2008;21(3):137-45.
9. Flores G, Abreu M, Olivar MA, Kastner B. Access barriers to health care for Latino children. Arch Pediatr Adolesc Med 1998;152:1119-25.
10. Brault MW. Americans with Disabilities: 2010: Current Population Reports. P70-131. Web site:
http://www.censaus.gov/prod/2012pubs Accessed August 10, 2013.
11. Cornell University. 2011 Disability Status Report. Web site: http://www.disabilitystatistics.org Accessed October 4, 2013.

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