1. MALTREATMENT AMONG CHILDREN WITH DEVELOPMENTAL DISABILITIES Rio De Janeiro, Brazil November 28, 2007 Edward Goldson, MD The Children’s Hospital University of Colorado School of Medicne Aurora, Colorado

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

3. Definition of Children With Special 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)

4. Child 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. 42 United States Code 5106g(4): 1974

5. Child 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

6. Child Maltreatment Non-accidental trauma NeglectSexual Abuse Psychological Abuse Psychological Abuse

7. Child Maltreatment 2006: Reports from the States to the National Center on Child Abuse and Neglect (NCANDS 2004) Population 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

8. Neglect62.4 % Medical Neglect 2.1 % Physical Abuse17.5 % Sexual Abuse 9.7 % Emotional Abuse 7.0 % Other14.5 % National Center on Child Abuse and Neglect (NCANDS 2004)

9. 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

10. 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

11. 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%

12. What factors contribute to abuse of the disabled? u The child and his/her disability u Society and its attitude toward disability u The perpetrator (usually a family member or caretaker)

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

14. Society and its attitude toward disability u We are a culture that values “self-reliance” u We live in a culture of violence that allows and encourages us to resolve conflicts, differences, and stresses, violently u Society takes a dim view of those who may be different from the main stream. Different = “bad” u 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

15. Society and its attitude toward disability (cont) u The disabled child is depersonalized and isolated. u The family is often demonized u The child is then viewed as an “object” who may be treated with impunity and even exploited u Thus, society may tacitly “give permission” to abuse the disabled

16. “The vulnerability of disabled children stems from their experience of having disabilities in a society which puts value on being nondisabled (“able bodied”) and which discriminates against disabled people.” Westcott, 1993 Society and its attitude toward disability (cont)

17. The caretaker: risk factors u Social isolation - Family dysfunction - Immature, disabled caretakers - Inadequate or inaccessible services and supports - Social rejection - Lack of support systems (formal and informal) u Disruptions in the parent child relationship u Parental denial of the disability, poor utilization of resources

18. u Caretaker psychopathology u Stress - Sense of inadequacy - Overwhelmed by the multiple demands - Inability to manage difficult behavior - Overwhelmed by the physical and emotional challenges - Caretaker “burnout u Financial stress The caretaker: risk factors (cont)

19. 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

20. Prevention and Intervention u Society and its attitude toward children and the disabled u The child and the perpetrator

21. Society u 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).

22. Society u 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

23. The Child and the Family u Early identification of the child with a disability u The child and family need to be linked to a comprehensive medical system: Medical Home u Linked with the Medical Home is the recognition that disability is a risk factor for abuse u The establishment of an anticipatory approach to care - Home visitor programs; monitoring and education - Financial and emotional supports - Respite resources

24. Prevention and Intervention u Early intervention programs u Guidance for parents and the establishment of formal and informal support systems; prevent isolation u Supports that enhance parents’ self-esteem u Establishment of systems responsive to crisis These programs should be established as soon as the disability is identified!

25. Prevention and Intervention These programs should be: Seamless Linked Integrated

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

27. MALTREATMENT AMONG CHILDREN WITH DISABILITIES The Challenges u Early identification u Early intervention u Comprehensive medical care u The provision of ongoing, seamless supports u To change the way society views individuals who are different u To change the way professionals view the disabled

28. 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 celebrated and cherished rather than ridiculed and demonized!

29. MALTREATMENT AMONG CHILDREN WITH DISABILITIES

31. THE SOCIAL CONSTRUCTION OF DISABILITY Resnick, 1984 “Sociological Destiny for the Disabled” Lower educational attainment Non-employment Lower wages when they are employed Lack of upward mobility Poverty Social isolation More medical problems; more care They don’t get well!!!

32. Society and its attitude toward disability (cont) THE SOCIAL CONSTRUCTION OF DISABILITY Hierarchy of Acceptability Resnick, 1984 l Least acceptable: mental retardation, syndromes, cerebral palsy l Medium acceptability: blindness, deafness, speech defects, seizures and by implication psychiatric and learning problems l Most acceptable: amputation, wheel-chair bound, chronic illness but intellectually competent

33. 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 and gratitude. The ramifications of such a social identify are enormous.”