AMERICAN ACADEMY OF DEVELOPMENTAL MEDICINE & DENTISTRY

The essential lesson learned is that on their own, individuals and families may not be able to accomplish the needed changes to protect their children. However, a multitude of organizations are able to help. 

Raising children with disabilities… Now add adverse childhood experiences

BY H. BARRY WALDMAN, DDS, MPH, PHD, ANDREW G. SCHWARTZ, DDS, FACD, STEVEN P. PERLMAN, DDS, MSCD, DHL (HON) AND CHARLES D. LARSEN, DMD, MS

"Adverse childhood experiences are potentially traumatic events that can have negative, lasting effects on health and well-being. These experiences range from physical, emotional, or sexual abuse to parental divorce or the incarceration of a parent or guardian. A growing body of research has sought to quantify the prevalence of adverse childhood experiences and illuminate their connection with negative behavioral and health outcomes, such as obesity, alcoholism, and depression, later in life." 1

Living with a child with a disability can have profound effects on the entire family–parents, siblings, and their extended members. It is a unique shared experience for families and can affect all aspects of family functioning. "On the positive side, it can broaden horizons, increase family members' awareness of their inner strength, enhance family cohesion, and encourage connections to community groups or religious institutions. On the negative side, the time and financial costs, physical and emotional demands, and logistical complexities associated with raising a child with a disability can have far-reaching effects… The impacts will likely depend on the type of condition and severity, as well as the physical, emotional, and financial wherewithal of the family and the resources that are available." 2 

For parents, having a child with disabilities will increase stress, take a toll on mental and physical health, make it difficult to find appropriate and affordable child care, affect decisions about work, education/training, having additional children, and relying on public support. "It may be associated with guilt, blame, or reduced self-esteem. It may divert attention from other aspects of family functioning. The out-of-pocket costs of medical care and other services may be enormous. All of these potential effects could have repercussions for the quality of the relationship between the parents, their living arrangements, and future relationships and family structure."2 Having a child with a disability also affect parents' allocation of time and financial resources to their healthy and unhealthy children, their parenting practices, their expectations of healthy siblings in terms of achievement, responsibility, short- and long-term contributions to the household and the siblings' health and development. These and other potential effects on families have implicati tions for the health and well-being of children with disabilities. 2

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.

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BRICK BY BRICK: Adverse childhood experiences range from physical, emotional, or sexual abuse to parental divorce or the incarceration of a parent or guardian. These experiences may be connected to negative behavioral and health outcomes, such as obesity, alcoholism, and depression, later in life.

NOW ADD ADVERSE CHILDHOOD EXPERIENCES

"Twenty-two percent of children in the United States – more than 15.6 million kids total – have had two or more adverse experiences i, according to the latest results from the National Survey of Children's Health." 3

Such events can have negative and lasting effects on a child's well-being which have been linked to increased risks of obesity, alcoholism and depression according to research. 3

At the state level: Nationally, a slight majority of children have not experienced any adverse experiences, but in 16 states more than half of children have experienced at least one. Children living in the South and Southwest Regions are generally more likely to have multiple experiences when compared to their peers in other parts of the country. The highest rate is in Arizona, where 31% of children have two or more adverse experiences. At the other end of the spectrum are New York and Maryland, where 15% of children fit this statistic.3 Some studies suggest that the experience of four or more adverse experiences is a threshold above which there is a particularly higher risk of negative physical and mental health outcomes. Prevalence at this threshold is lowest in New Jersey and New York, at around three percent, and highest in Oklahoma, Montana, and West Virginia, at 10 to 12 percent.

Data on adverse experiences also vary by race and ethnicity. American Indian (37%) and African American (34%) children are significantly more likely to have multiple experiences compared to their white (19%) and Asian (7%) peers, according to the National Survey of Children's Health (please see Chart 1).

Economic hardship is the most common adverse experience reported nationally and in almost all states, followed by divorce or separation of a parent or guardian. Only in Iowa, Michigan, and Vermont is divorce or separation more common than economic hardship. In the District of Columbia, having been the victim of or witness to violence has the second-highest prevalence, after economic hardship.

CHILDREN WITH DISABILITIES AND ADVERSE EXPERIENCES

"One in three children with an identified disability for which they receive special education services are victims of some type of maltreatment (i.e., neglect, physical abuse, or sexual abuse) whereas one in 10 nondisabled children experience abuse. Children with any type of disability are 3.4 times more likely to be a victim of some type of abuse compared to children without disabilities... (Note) Children with disabilities of any kind are not identified in crime statistic systems in the U.S., making it difficult to determine their risk for abuse." 4

Nationally, 78.3% of victims were neglected, 18.3% were physically abused, 9.3% were sexually abused and 8.5% were psychologically maltreated. In 2012, a nationally estimated 1,640 children died of abuse and neglect. Looking specifically at individuals with intellectual disabilities, they are 4 to 10 more times as likely to be victims of crime as others without disabilities.4

In a study of 4,155 students in special education, children with attention deficient hyperactive disorder (ADHD) experienced the greatest risk of victimization compared to children with other disabilities. Children with emotional disturbance were the second group of children with disabilities most likely to experience bully victimization. 5

Children may not report abuse because they don't understand what abuse is or what acts are abusive. Communication problems that are inherent in many disabilities also make it difficult for children to understand and or verbalize episodes of abuse. Those with limited speaking abilities have had no way to talk about or report abuse.

Why are these children more likely to be abused? "According to researchers, disability can act to increase vulnerability to abuse (often indirectly as a function of society's response to disability rather than the disability in itself being the cause of abuse). For example:

TOXIC STRESS: CONSEQUENCES OF ONGOING ADVERSITY

"Learning how to cope with adversity is an important part of healthy child development. When we are threatened, our bodies prepare us to respond by increasing our heart rate, blood pressure, and stress hormones, such as cortisol. When a young child's stress response systems are activated within an environment of supportive relationships (sic) with adults, these physiological effects are buffered and brought back down to baseline. The result is the development of healthy stress response systems. However, if the stress response is extreme and long-lasting, and buffering relationships are unavailable to the child, the result can be damaged, weakened systems and brain architecture, (sic) with lifelong repercussions." 8

Types of stress response:

When toxic stress response occurs continually, or is triggered by multiple sources, it can have a cumulative toll on an individual's physical and mental health – for a lifetime. The more adverse experiences in childhood, the greater the likelihood of developmental delays and later health problems, including heart disease, diabetes, substance abuse, and depression. Research also indicates that supportive, responsive relationships with caring adults as early in life as possible can prevent or reverse the damaging effects of toxic stress response. (Emphasis added) 8 •

ABOUT THE AUTHORS:

H. Barry Waldman, DDS, MPH, PhD is a SUNY Distinguished Teaching Professor, Department of General Dentistry, Stony Brook University, NY. E-mail: h.waldman@stonybrook.edu. Andrew G. Schwartz, DDS, FACD, is Clinical Assistant Professor, Director, Division of Behavioral Sciences and Practice Management Department of General Dentistry School of Dental Medicine Stony Brook University, NY. Steven P. Perlman, DDS, MScD, DHL (Hon) is the Global Clinical Director and founder, Special Olympics, Special Smiles and Clinical Professor of Pediatric Dentistry, The Boston University Goldman School of Dental Medicine. Charles D. Larsen, DMD, MS, is Assistant Professor, Director, Advanced Specialty Education in Pediatric Dentistry, Department of Orthodontics & Pediatric Dentistry, Stony Brook University, NY.

 i In this study, children were included if the respondent answered that the child had ever experienced two or more of the following adverse experiences: frequent socioeconomic hardship, parental divorce or separation, parental death, parental incarceration, family violence, neighborhood violence, living with someone who was mentally ill or suicidal, living with someone who had a substance abuse problem or racial bias.

References

WORTH MORE THAN A POUND OF CURE : RESOURCES FOR PREVENTION OF MALTREATMENT

Repeated efforts introduced to protect youngsters (especially those with disabilities) have made some progress against unthinkable adverse childhood experiences. The essential lesson learned is that on their own, individuals and families may not be able to accomplish the needed changes to protect their children. However, a multitude of organizations are able to help. Try them!

KIDPOWER INTERNATIONAL Offers programs for children, youth, and adults, including those with special needs. Program areas include personal safety and strategies to prevent or respond to child abuse, neglect, bullying, and other threatening situations kidpower.org

PARENT TO PARENT OF PENNSYLVANIA Matches parent mentors of children with disabilities with parents of newly diagnosed children with the same or similar disabilities. parenttoparent.org

IMPACT: ABILITY A 10-session personal safety curriculum for individuals, including youth, with cognitive and/or physical disabilities. It uses realistic simulations to help teach people with disabilities how to respond to at-risk situations, including assertive communication and how to resist inappropriate sexual contact by a caregiver or other adult. impactboston.com/selfadvocacy

THE ARC Provides individualized supports and services to people with intellectual or developmental disabilities and their families throughout the United States. thearc.org

THE PACER CENTER Based in Minnesota and offers numerous programs and informational materials for families of children with disabilities, such as 1) state parent centers for training and support and 2) the National Bullying Prevention Center. pacer.org

SAFE (STOP ABUSE FOR EVERYONE) Based in Austin, TX and offers disability awareness training for professionals and family members. It focuses on the risks of abuse faced by people with disabilities; strategies for preventing abuse; techniques for providing sexual education; and detecting, reporting, and responding to disclosures of abuse. safeaustin.org

THE COALITION AGAINST SEXUAL ABUSE OF CHILDREN WITH DISABILITIES (CASACD) Led by the Chicago Children's Advocacy Center, CASACD seeks to, among other goals, increase the prevention of and raise public awareness about the sexual abuse of children with disabilities. CASACD provides a variety of resources and trainings for providers, parents, and others about preventing sexual abuse amongst this population. chicagocac.org