AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY
BY H. BARRY WALDMAN DDS, MPH, PHD, RICK RADER, MD; STEVEN P. PERLMAN DDS, MSCD, DHL (HON) AND MISHA GAREY, DDS
A review of the three latest federal government reports on individuals with disabilities in the U.S. did not find a single reference to “acquired disabilities.”
“The World Health Organization defines disability as loss of function at the level of the whole person, which may include inability to communicate or to perform mobility.” 1
A developmental disability “…is a substantial loss of function brought on by prenatal and postnatal events in which the predominant disturbance is in the acquisition of cognitive, language, motor, or social skills…” 1
An acquired disability “…pertaining to a characteristic, condition, or disease originating after birth, not caused by hereditary or developmental factors but by a reaction to environmental influences outside of the organism, example(s), acquired immunity (and trauma).”1
A review of the three latest federal government reports on individuals with disabilities in the U.S. (Chartbook 2009-
2010 Illustrated Findings from the National Survey of Children with Special Health Care Needs [CSHCN],2 Americans with Disabilities: 20103 and the 2013 American Community Survey 4) did not find a single reference to “acquired disabilities.”
• The CSHCN 2009-2010 Survey reported that, “…15.1 percent of children under 18 years of age in the United States, or approximately 11.2 million children, are estimated to have special health care needs. Overall, 23.0 percent of U.S. households with children have at least one child with special health care needs.” 2
• The 2010 Americans with Disabilities study detailed that more than 56 million residents had one or more disabilities.3
• The American Community Survey estimated that in 2013, almost 40 million residents had a severe disability.4
Multiple research articles do specify that developmental disabilities acquired after birth most frequently arise from damage to the brain and spinal cord. Traumatic brain injury is a common acquired childhood disability, which has been shown to cause a significant impact on children’s cognitive, social and emotional behavioral impairment resulting in difficulties in both the home and school environment.5-9
An earlier report by the Centers for Disease Control and Prevention indicated that postnatal causes accounted for up to 15 percent of all developmental disabilities (“…and often are preventable…” 10); ranging from 3.5% for intellectual disabilities to 12.4% for hearing impairment. The most common postnatal causes of developmental disabilities were bacterial meningitis, child battering and motor vehicle crashes. “…children with postnatally acquired developmental disabilities were more likely to have multiple disabilities than other children identified with developmental disabilities, suggesting that postnatally acquired disabilities have a greater impact on a child’s health status.”10 Traumatic brain injury results primarily from vehicle incidents, falls, acts of violent and sports injuries, and is more than twice as likely to occur in males as in females. The highest incidence is among persons 15-24 years of age (and 75 years and older) with an additional less striking peak in incidence in children age 5 years and younger.11 People with childhood-onset disabilities have more disabilities than those with adult onset disabilities.12
FAMILY PERSPECTIVES ON ACQUIRED DISABILITIES
Mothers: “Mothers may assume that they did something wrong during pregnancy or assign blame to routine events surrounding labour and delivery. This parental guilt and blame may adversely affect parents’ psychological well-being, potentially for decades…”13
In one study, a series of interviews were conducted with mothers whose previously healthy children had acquired permanent, physical disabilities between the ages of 5 months and 11 years. Disability causes include illnesses such as acute encephalitis and stroke, accidental injuries from burns, motor vehicle accidents and falls, and complications from cancer treatments.
None of the children’s disabilities in this study were from incidents of child maltreatment.13 Comments by the mothers included:
• “I feel that I was strengthened from it … even though it’s really, really painful.
• Stress, burden, and sorrow are not surprising responses for mothers of children who acquire life-altering disabilities. What is largely unforeseen is how maternal caregivers transform in positive ways through trauma and adversity.
• In particular, chronic illness, life-altering disability, and or the death of a young child evoke the most difficult responses as they are seen as tragically out of sync with expectable life transitions.
• To be strong for one’s child was seen as an essential component of postdisability caregiving. Mothers’ ‘found strength’ reconfigured previously held beliefs about their capabilities; a sense of ‘everyday’ competency provided an antidote for opposing feelings of helplessness that mothers now faced in caregiving.” 14
Mothers in the study recognized benefits that developed as an outgrowth of adversity, but they did not minimize or deny the harm and pain that the same adversity had brought into their lives and, even worse, into the lives of their children. “Transformations in their sense of self, assisted mothers to develop new skills, confidence, and enhanced self-effectiveness.” 14
Fathers: Under representation of fathers in caregiver research is a longstanding issue with recognized barriers involving perceived gender roles, restrictions due to employment, and fathers’ limited involvement with health professionals.15
Regarding the parent’s concern for their children with acquired disabilities, reports indicate that, fathers have better outcomes in terms of depression, stress, quality of life, parent impact, and psychosocial functioning.15,16
Siblings: It might be difficult for a young child to understand why suddenly their brother or sister is being treated differently. In addition, the injured child may take out some of their anger or frustration on their brothers and sisters. They may be embarrassed by the injured child’s behavior and may be wary about having friends at the house. In addition:
• “Some children may feel they’ve lost some of their parents’ affection.
• Some younger children may worry they can ‘catch’ an illness their sibling has.
• Difficulties with behavior may arise. Children aren’t always able to talk through their feelings or frustrations and this may result in difficulties with behavior.
• Siblings may feel the same sense of loss their parents feel.” 17
CHILDREN WITH ACQUIRED DISABILITIES DO GROW UP
The Census Bureau and other government agencies do not consistently report the national number of individuals with acquired disabilities. However, the dramatic increases in the number and proportion of the overall population with disabilities in the adult and senior years undoubtedly represents the aging of children with acquired disability plus the great numbers of older residents with “newly developed” acquired disabilities.
In 2013, there were almost an estimated 40 million U.S. residents (18,913,000 males and 20,225,000 females; 12.6% of the 311 million civilian non-institutionalized population) with one or more severe disabilities. This represents a progressive proportional increase of the population with severe disabilities from:
• 0.8% for children less than 5 years (includes only hearing and vision difficulties) to
• 5.4% for children (5-17 years) to
• 36.4% for the 65+ years population and
• 56% for the over 80 years population.18,19 (see Table 1)
REALITIES
“People who acquire disabilities later in life have a different experience from those who are born with a disability. These people have lost something that has played a part in the development of their self-image, whether it is an arm or leg or the ability to perform a particular activity. People with acquired disabilities tend to go through a grieving process similar to the grieving process for any other major life loss. Their emotions usually follow these stages: grief,
denial, anger, depression, working out a new way to live, and acceptance of the disability.
Unfortunately, some people get stuck on one or more of these steps and may never reach the last two steps.” 20 No matter how we classify a disability; be it developmental or acquired, the reality is that the ongoing impact on the child or adult and the family is real. The decision to be made is:
“Regardless of how you became disabled, what matters most is how you are living your life in spite of your disability … Regardless of whether you were born with your disability or you acquired it at some point in time – this choice remains. Who will you choose to be?”21 •
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.
Rick Rader, MD is Director, Morton J. Kent Habilitation Center Orange Grove, Chattanooga TN, and Editor in Chief of EP Magazine.
Misha Garey, DDS is Director of Dental Services at the Orange Grove Center.
References
1. Free Dictionary.com Web site: http://medical-dictionary.thefreedictionary.com/Developmentally+ disabled Accessed September 11, 2015.
2. Health Resources and Services Administration NS-CSHCN Chartbook 2009-2010 Illustrated Findings from the National Survey of Children with Special Health Care Needs. Web site:http://mchb.hrsa.gov/cshcn0910/ Accessed September 15, 2015.
3. Brault MW. Census Bureau. Americans with Disabilities: 2010. Web site: http://www.census.gov/prod/2012pubs/p70-131.pdf Accessed September 15, 2015.
4. Census Bureau. American Community Survey. Web site:https://www.census.gov/people/disability/publications/disab10/table_1.pdf Accessed September 16, 2015.
5. Boyd RN, Baque E, Piovesana A, et al. Mitii ABI study protocol of randomized controlled trial of a web-based multi-model training program for children and adolescents with an acquired brain injury. BioMedCentral Neurology, 2015;19(Aug):140.
6. Germany L, Ehlinger V, Klapouszczak D, et al. Trends in prevalence and characteristics of post-neonatal cerebral palsy cases: a European registry-based study. Research Developmental Disabilities, 2013;34(5):1669-1677.
7. Chevignard MP, Soo C, Galvin J, et al. Ecological assessment of cognitive functions in children with acquired brain injury: a systematic review. Brain Injury, 2012;26(9):1033-1077.
8. Soo C, Tate R, Brookes N. Psychological adjustment followed acquired brain injury in childhood and adolescence: executive, behavioural and emotional contributions. Brain Injury, 2014;28(7):906-914.
9. Anderson V, LeBrocque R, Iselin G, et al. Adaptive ability, behavior and quality of life pre and post traumatic brain injury in childhood. Disability Rehabilitation, 2012;34(19):1639-1647.
10. Centers for Disease Control and Prevention. Postnatal causes of developmental disabilities in children aged 3-10 yeas – Atlanta, GA, 1991. MMWR, 1996;45(6):130-134.
11. National Institutes of Health. Rehabilitation of persons with traumatic brain injury. Consensus Statement, 1998;16(1):1-41.
12. Verbrugge LM, Yang L. Aging with disability and disability with aging. Journal Disability Policy Studies, 2002;12(4)253-267.
13. Taryn B. Bemister TB, Brooks BL, Dyck RH, et al. Predictors of caregiver depression and family functioning after perinatal stroke. BMC Pediatrics, 2015;15:75-86.
14. Conrad SC. Posttraumatic growth in mothers of children with acquired disabilities. Journal of Loss and Trauma: International Perspectives on Stress & Coping, 2006;11(1):101-113.
15. Bemister TB, Brooks BL, Dyck RH, et al. Parent and family impact of raising a child with perinatal stroke. BMC Pediatrics, 2014;14:182 Web site: http://www.biomedcentral.com/1471-2431/14/182 Accessed September 17, 2015.
16. Pinquart M, Sorensen S. Gender differences in caregiver stressors, social resources, and health: an updated meta-analysis. Journal of Gerontology Series B, 2006;61(1):33–45.
17. The Children’s Trust. Siblings of children with acquired brain injury. Web site: http://www.braininjuryhub.co.uk/informationlibrary/siblings Accessed September 17, 2015.
18. Department of Health and Human Services. Administration on Aging. A profile of older Americans: 2011. Web site:http://www.aoa.gov/Aging_Statistics/Profile/2011/docs/2011profile.pdf Accessed September 18, 2015.
19. Census Bureau. Disability characteristics: 2013. American Community Survey – 1 year estimates. Web site:http://factfinder.census.gov Accessed September 18, 2015.
20. Human Diseases and Conditions. Self-image and acquired disabilities. Web site: www.humanillnesses.com Accessed September 15, 2015.
21. Human Diseases and Conditions. Disability. Web site:http://www.humanillnesses.com/Behavioral-Health-Br-Fe/Disability.html#ixzz3ljSGFcWZ Accessed September 16, 2015.
