MALTREATMENT AMONG CHILDREN WITH MALTREATMENT AMONG CHILDREN WITH DEVELOPMENTAL DISABILITIESDEVELOPMENTAL DISABILITIES

Rio De Janeiro, BrazilRio De Janeiro, BrazilNovember 28, 2007November 28, 2007

Edward Goldson, MDEdward Goldson, MDThe Children’s HospitalThe Children’s Hospital

University of Colorado School of MedicneUniversity of Colorado School of MedicneAurora, ColoradoAurora, Colorado

Introduction:

Children with developmental disabilities are an under-served group world-wide, vulnerable to medical problems, economically challenged, socially marginalized, educationally neglected and at veryhigh risk to be maltreated

Definition of Children With Definition of Children With Special Health Care NeedsSpecial Health Care Needs

Children who have or are at risk for a chronic physical, developmental, behavioral or emotional condition and who also require health related services of a type or amount beyond that required by children generally.

(MCHB July 1998 - adopted by AAP October 1998)

Child MaltreatmentChild Maltreatment“Child Maltreatment” means the physical

or mental injury, sexual abuse or exploitation, negligent treatment, or maltreatment of a child by a person who is responsible for the child’s welfare under circumstances which indicate harm or threatened harm to the child’s health or welfare.

Federal Child Abuse Prevention Treatment Act. 42United States Code 5106g(4): 1974

Child MaltreatmentChild Maltreatment

“Any interaction or lack of interaction between a child and his or her caregiver which results in non-accidental harm to the child’s physical or developmental state.”

RE Helfer

Child Maltreatment

Non-accidental trauma

Neglect SexualAbuse

PsychologicalAbuse

Psychological Abuse

Child Maltreatment 2006: Reports from Child Maltreatment 2006: Reports from the States to thethe States to the

National Center on Child Abuse and National Center on Child Abuse and NeglectNeglect

(NCANDS 2004)(NCANDS 2004)Population of Children = 73,277,998Population of Children = 73,277,998

1,860,070 reports were investigated in 49 states and in the District of Columbia. Of this number, 25.7% or 477,755 cases were substantiated

Neglect 62.4 %Medical Neglect 2.1 %Physical Abuse 17.5 %Sexual Abuse 9.7 %Emotional Abuse 7.0 %Other 14.5 %

National Center on Child Abuse and Neglect(NCANDS 2004)

Parents 78.5 %Other relative 6.5 %Foster parent 0.4 %Unmarried partner 4.1 % Day care 0.7 %Other 5.9 %Unknown 3.9 %

Perpetrators

Death as a result of abuse: 1,490

NCANDS 2004

Incidence Among Children with Disabilities

ESTIMATES FROM THE STUDY OF THE NATIONAL INCIDENCE AND PREVALENCE OF CHILD MALTREATMENT (PER 1,000)

Children without Children with Ratio Disabilities Disabilities

Any Maltreatment 21.3 35.5 1.67 Physical Abuse 4.5 9.4 2.09 Sexual Abuse 2.0 3.5 1.75 Emotional Abuse 2.9 3.5 1.21 Physical Neglect 7.7 12.3 1.60 Educational Neglect 4.1 9.0 2.20 Emotional Neglect 2.8 7.6 2.77

Westat, 1993

Incidence of Maltreatment Among Children with Disabilities - 2004

36 states reported 559, 410 victims of maltreatment

Of the 559, 410 victims 41,083 had a disability = 7.3%

What factors contribute to abuse of the disabled?

The child and his/her disability Society and its attitude toward disability The perpetrator (usually a family member or caretaker)

The Child with a Disability

The child may have significant behavioral problems Their physical care is physically demanding and time-consuming They do not meet parental expectations, particularly those who appear “typical” but do not behave or function as typical children. They can be difficult to care for; irritable, inconsolable They stress parents emotional and physical reserves They stress family resources, particularly now when there are scarce resources and services

Society and its attitude toward disability

We are a culture that values “self-reliance” We live in a culture of violence that allows and encourages us to resolve conflicts , differences, and stresses, violently Society takes a dim view of those who may be different from the main stream. Different = “bad” Society often views the disabled as “less than human”

- They do not feel pain the way typical individuals do - They do not have the same needs, desires, feelings

as typical children, therefore - They are not entitled to the same rights and considerations as typical children

Society and its attitude toward disability (cont)

The disabled child is depersonalized and isolated. The family is often demonized The child is then viewed as an “object” who may be treated with impunity and even exploited Thus, society may tacitly “give permission” to abuse the disabled

“The vulnerability of disabled children stems fromtheir experience of having disabilities in a societywhich puts value on being nondisabled (“able bodied”)and which discriminates against disabled people.”

Westcott, 1993

Society and its attitude toward disability (cont)

The caretaker: risk factors

Social isolation- Family dysfunction- Immature, disabled caretakers- Inadequate or inaccessible services and supports- Social rejection- Lack of support systems (formal and informal)

Disruptions in the parent child relationship Parental denial of the disability, poor utilization of resources

Caretaker psychopathology Stress - Sense of inadequacy - Overwhelmed by the multiple demands - Inability to manage difficult behavior - Overwhelmed by the physical and emotional challenges - Caretaker “burnout Financial stress

The caretaker: risk factors (cont)

RISK FACTORS TO WHICH PROFESSIONALS SHOULD BE ALERT TO

Child with special health care needs without established, coordinated health care

Child/family that fail to keep appointments and follow-up with a care plan

Child with a behavioral problem

Dysfunctional family; poor social supports, financial stress

Family having difficulty accessing services/inadequate services

Community that sees child and family as deviant or undesirable

Prevention and Intervention

Society and its attitude toward children and the disabled

The child and the perpetrator

Society Need to change attitudes that “disinhibit” maltreatment

- Celebrate the individual’s personhood; acknowledge and accept differences

- De-demonize the disabled; education

- Deconstruct a “culture of violence”

- Establish contact between typical children and children with disabilities (or challenges).

Society

Need to have in place laws that protect the child - Laws need to be operational - Laws need to be enforced

Society needs to see comprehensive care for the disabled as a priority Resources – financial support, intervention and support programs – need to be made available

The Child and the Family

Early identification of the child with a disability The child and family need to be linked to a comprehensive medical system: Medical Home Linked with the Medical Home is the recognition that disability is a risk factor for abuse The establishment of an anticipatory approach to care

- Home visitor programs; monitoring and education- Financial and emotional supports- Respite resources

Prevention and Intervention

Early intervention programs Guidance for parents and the establishment of formal and informal support systems; prevent isolation Supports that enhance parents’ self-esteem Establishment of systems responsive to crisis

These programs should be established as soon as the disability is identified!

Prevention and Intervention

These programs should be:

Seamless

Linked

Integrated

MALTREATMENT AMONG CHILDREN WITH DISABILITIES

Summary

Maltreatment occurs more commonly among the disabled One could argue that disability in and of itself places the the child at risk for abuse There are societal factors that contribute to abuse There are parental/caretaker factors that contribute to abuse Comprehensive, integrated programs within the construct of a medical home that anticipates difficulties need to be in place in order to prevent maltreatment

MALTREATMENT AMONG CHILDREN WITH DISABILITIES

The Challenges

Early identification Early intervention Comprehensive medical care The provision of ongoing, seamless supports To change the way society views individuals who are different To change the way professionals view the disabled

MALTREATMENT AMONG CHILDREN WITH DISABILITIES

In A Word:

We need to protect and advocate for those children and families who in many ways are disenfranchised in our society. Despite what many think, they bring much richness to our communities and this should be celebratedand cherished rather than ridiculed and demonized!

We are guiltyOf many errors and faultsBut our worst crimeIs the abandonment of childrenDisregarding the fountain of life

Many of the things which we need We can await. The child cannot.His bones are formingHis blood is being madeAnd his senses are developing.To him we cannot answer, “Tomorrow.”His name is “Today.”

Gabriella Mistral

MALTREATMENT AMONG CHILDREN WITH DISABILITIES

THE SOCIAL CONSTRUCTION OF DISABILITY Resnick, 1984

“Sociological Destiny for the Disabled”

Lower educational attainmentNon-employment

Lower wages when they are employedLack of upward mobility

PovertySocial isolation

More medical problems; more careThey don’t get well!!!

Society and its attitude toward disability (cont)

THE SOCIAL CONSTRUCTION OF DISABILITY Hierarchy of Acceptability Resnick, 1984

Least acceptable: mental retardation, syndromes, cerebral palsy

Medium acceptability: blindness, deafness, speech defects, seizures and by implication psychiatric and learning problems

Most acceptable: amputation, wheel-chair bound, chronic illness but intellectually competent

THE SOCIAL CONSTRUCTION OF DISABILITY Resnick, 1984

“To be a helped person in this culture, which values self-reliance and independence, includes subtle yet pervasive expectations in terms of dependency andgratitude. The ramifications of such a social identifyare enormous.”