1. Abuse in Children with Disabilities
The Pediatric Perspective
WELCOME TO THE SESSION ON ABUSE IN CHILDREN WITH DISABILITIES: THE PEDIATRIC PERSPECTIVE
I WOULD LIKE TO INTRODUCE MYSELF ####

2. MY NAME IS JAMIE HOFFMAN-ROSENFELD
MY NAME IS JAMIE HOFFMAN-ROSENFELD. TOM HANNA SUGGESTED THAT THE PARTICIPANTS MIGHT BE INTERESTED IN SEEING WHO IT WAS THAT WAS SPEAKING SO RIGHT BEFORE NIGHTFALL LAST NIGHT, MY SON TOOK THIS PICTURE OF ME.

3. I AM A CHILD ABUSE PEDIATRICIAN IN NEW YORK ###

4. IN A BOROUGH CALLED THE BRONX, PERHAPS BEST KNOWN FOR BEING THE HOME OF THE HOUSE THAT RUTH BUILT – YANKEE STADIUM ####

5. The CPC at the Children’s Hospital at Montefiore
PERHAPS 5 MILES AWAY IS THE CHILDRENS HOSPITAL AT MONTEFIORE, A TERTIARY CARE CHILDREN’S HOSPITAL WHICH IS THE MAJOR AFFILIATE OF THE ALBERT EINSTEIN COLLEGE OF MEDICINE.
THE CHILDREN’S HOSPITAL IS PROBABLY BEST KNOWN FOR ITS RECENT SUCCESS IN SEPARATING THE AGUIRRE TWINS WHO WERE UNTIL A FEW WEEKS AGO, JOINED AT THE TOP OF THEIR SKULLS.
DOWN THE STREET FROM THE CHILDREN’S HOSPITAL IS THE CHILD PROTECTION CENTER OR CPC ###

6. AS A FULLY ACCREDITED CHILD ADVOCACY CENTER, THE MONTEFIORE CPC IS A CHILD FRIENDLY PLACE WHERE MULTIDISCIPLINARY CHILD ABUSE EVALUATIONS TAKE PLACE. ###

7. THIS IS A PICTURE OF OUR INTERVIEW SUITE, YOU ARE LOOKING THROUGH OUR ONE-WAY MIRROR INTO THE ROOM WHERE CHILDREN ARE INTERVIEWED WHILE BEING OBSERVED BY A HOST OF PROFESSIONALS INCLUDING, CHILD PROTECTION, LAW ENFORCEMENT AND MEDICAL ###

8. THIS IS THE PLAY SET IN OUR BACK YARD
THIS IS THE PLAY SET IN OUR BACK YARD. A LITTLE OVER ONE YEAR AGO, WE DECIDED TO TAKE ON A PROJECT WHICH HAD AS ITS MISSION IMPROVING THE APPROACH TO CHILD ABUSE IN CHILDREN WITH DISABILITIES BY EDUCATING ALL OF THE PROFESSIONALS INVOLVED AND BRIDGING THE GAP BETWEEN THE CHILDREN, THEIR FAMILIES, PROFESSIONALS IN THE DISABILITY FIELD AND MEMBERS OF THE CHILD ABUSE MULTIDISCIPLINARY TEAM. I HAVE TO TELL YOU, THAT DESPITE BEING A SEASONED PEDIATRICIAN WHO HAS BEEN WORKING PRIMARILY IN THE CHILD ABUSE FIELD FOR ABOUT 15 YEARS, WHEN I STARTED TO DELVE INTO THE ISSUES OF MALTREATMENT OF CHILDREN WITH DISABILITIES, I REALIZED THAT I REALLY HAD A LOT TO LEARN. I AM HONORED TO HAVE THE CHANCE TO SHARE SOME OF MY KNOWLEDGE WITH YOU.####

9. Course Outline Definitions of maltreatment and disability Epidemiology
The medical provider’s role
Recommendations by the American Academy of Pediatrics
AFTER I REVIEW THE COURSE OUTLINE AND THE LEARNING OBJECTIVES OF THE SESSION, I WILL LAUNCH INTO THE CONTENT. WE WILL TAKE TWO BREAKS DURING WHICH I WILL POST A “Quiz” QUESTION FOR YOU TO ANSWER AND AT THOSE TIMES I WILL ALSO ANSWER A FEW OF THE QUESTIONS THAT YOU POST TO ME BY GOING INTO THE CHAT ROOM ON YOUR CONSOLES
THE OUTLINE OF THIS COURSE IS………###

10. Learning Objectives
To understand the relevant terminology including definitions of child maltreatment and disability
To understand the epidemiology including prevalence and risk factors
To understand the role of medical providers including identification, reporting, education and advocacy
THE LEARNING OBJECTIVES ARE…….#####

11. Definition of Disability
The Americans with Disabilities Act
A physical or mental impairment that substantially limits 1 or more of the major life activities of an individual
THERE IS NO UNIVERSALLY ACCEPTED DEFINITION OF DISABILITY BUT HERE IS ONE FROM THE AMERICANS WITH DISABILITIES ACT…….##

12. DISABILITY DEFINITIONS
Developmental Disability (as defined by the Federal Developmental Disabilities Act): A severe chronic disability which –
Is manifested before age 22
Is likely to continue indefinitely
Results in substantial functional limitations in 3 or more of the following (self-care, language, learning, mobility, self-direction, capacity for independent living and economic self-sufficiency)
Reflects the individual’s need for a combination and sequence of special interdisciplinary or generic services, individualized support, and other forms of assistance that are lifelong or of extended duration and are individually planned and coordinated.
A DEVELOPMENTAL DISABILITY (AS DEFINED BY……..#####

13. Definition of Child Abuse and Neglect
Federal Child Abuse Prevention and Treatment Act
“at minimum, any recent act or failure to act on the part of a parent or caretaker, which results in death, serious physical or emotional harm, sexual abuse or exploitation, or an act or failure to act which presents an imminent risk of serious harm”
ONE DEFINITION OF CHILD ABUSE AND NEGLECT FROM THE FEDERAL…….####

14. Let’s Look at Some of the Research!
LET’S LOOK AT SOME RESEARCH ###

15. State Efforts to Identify Maltreated Children with Disabilities
Bonner, B.L., Crow, S,M. and Hensley, L.D.
Child Maltreatment – 1997
Only 7 states record disability status in abuse records
IN THIS STUDY WHICH WAS PUBLISHED IN THE JOURNAL CHILD MALTREATMENT IN 1997, A MERE 7 YEARS AGO, BONNER ET AL LOOKED AT HOW MANY STATES RECORDED DISABILITY STATUS OF CHILDREN WHO WERE SUBJECTS OF AN ABUSE OR NEGLECT REPORT, IN ABUSE RECORDS.

16. A Report on the Maltreatment of Children with Disabilities
National Center on Child Abuse and Neglect
Crosse, Kaye and Ratnofsky, 1993
Data collected from CPS case files from 35 “representative” counties
CPS records capture primarily intra-familial abuse
Study relied on CPS worker opinion rather than disability diagnosis determined by appropriate trained professional
IN THIS STUDY, COMMISSIONED BY THE NATIONAL CENTER ON CHILD ABUSE AND NEGLECT,L DATA COLLECTORS WENT TO CPS RECORDS TO CAPTURE DATA ON CHILD ABUSE AND DISABILITIES, THE PROBLEM IS THAT THE DETERMINATION OF DISABILITY RELIED ON THE RECOGNITION OF DISABILITY AND ITS APPROPRIATE DOCUMENTATION IN THE CASE RECORDS BY CPS WORKERS. IN NEW YORK CITY, CPS WORKERS ARE ASKED TO WRITE IN THEIR NOTES WHETHER ANY MEDICAL CONDITIONS OR DISABILITIES ARE PRESENT BUT THEY ARE NOT GIVEN ANY TOOLS OR GUIDELINES ON HOW TO GATHER THE INFORMATION OR HOW TO MAKE THOSE ASSESSMENTS. YOU CAN SEE HOW A STUDY THAT RELIES ON CPS WORKERS AS THE PRIMARY SOURCE ON INFORMATION COULD HAVE SOME LIMITATIONS AND WHY ABUSE IN CHILDREN WITH DISABILITIES MIGHT BE UNDERRECOGNIZED ####

17. Crosse, Kaye and Ratnofsky- findings
1834 American children in 1249 substantiated cases of child abuse
Rate of all types of abuse in children with disabilities was 1.7 times that in children without disabilities
Sexual abuse 1.8 times more likely in children with disabilities than in typically developing peers.
DESPITE THE LIMITATIONS IN THIS STUDY, THESE RATES OF ABUSE IN CHILDREN WITH DISABILITIES ARE OFTEN QUOTED. ……..###

18. Maltreatment and Disabilities; a population-based epidemiological study
Sullivan, P.M. and Knutson, J.F.
Boys Town National Research Hospital
Funded by National Center on Child Abuse and Neglect
Child Abuse and Neglect, October 2000
PATRICIA SULLIVAN, WHO HOPEFULLY MANY OF YOU HAD THE CHANCE TO HEAR IN THE PREVIOUS HOUR, PUBLISHED THIS ELEGANT STUDY IN CHILD ABUSE AND NEGLECT IN 2000 ####

19. Disability as defined by Nebraska Department of Education
Children with disabilities shall mean those children who have been verified by a multidisciplinary evaluation team as children with autism, behavior disorders, deaf-blindness, hearing impairments, mental retardation, multiple disabilities, orthopedic impairments, other health impairments, traumatic brain injury or visual impairments, who because of these impairments need special education and related services
8% of total school-based population
THIS STUDY OF A SCHOOL BASED POPULATION IN OMAHA NEBRASKA USE A CAREFUL DETERMINATION OF DISABILITY, IT WAS…….###

20. DISTRIBUTION OF DISABILITY TYPE
THE FOUR BIGGEST CHUNKS OF THE PIE ARE LEARNING DISABILITIES, MENTAL RETARDATION, BEHAVIOR DISORDERS, AND HEALTH CONDITIONS####

21. Sullivan and Knutson, 2000
50,278 children enrolled in Omaha Public Schools
Used school-based disability criterion (i.e. educationally mandated disabilities)
Merged school records with Nebraska Dept. of Social Services, Nebraska Foster Care Review Board, and records from police department and sheriff’s office
THE SCHOOL RECORDS WERE MERGED WITH RECORDS OF THE DEPARTMENTS OF………., THEY WERE LOOKING FOR HITS, MEANING CHILDREN WHO WERE DETERMINED TO HAVE A DISABILITY AND WHO WERE ALSO KNOWN OT THE CHILD PROTECTION SYSTEM BECAUSE THEY HAD BEEN MALTREATED ####

22. Prevalence of Maltreatment in Children with Disabilities
31% of all children with disabilities are maltreated
9% of children without disabilities are maltreated
Children with disabilities are 3.4 X more likely to suffer abuse and neglect than children without disabilities
THIS IS WHAT THEY FOUND
IF YOU SEPARATE ALL OF THE CHILDREN IN THE SCHOOL SYSTEM INTO TWO GROUPS THOSE WITH DISABILITIES AND THOSE WITHOUT, ……. ####

23. Prevalence Looking at it another way..
22% of maltreated children had a disability
(1012/4503)
6% of non-maltreated children had a disability
(2250/35,708)
LETS LOOK AT IT ANOTHER WAY. PUT CHILDREN INTO TWO GROUPS BASED ON WHETHER OR OT THEY HAD BEEN MALTREATED. IN THE GROUP OF CHILDREN WHO HAD SUFFERED ABUSE, 22% HAD A DISABILITY, WHILE ONLY 6% OF THE NON-ABUSED GROUP OF CHILDREN HAD A DISABILITY WHICH SHOWS THAT CHILDREN WITH DISABILITIES ARE OVERREPRESENTED IN POPULATIONS OF MALTREATED CHILDREN. ####

24. Relative Sexual Abuse Risk for Specific Disabilities
2.0
5.5
4.0
2.9
Physical
Disability
Impaired
Health
Behavior
Disorder
Develop.
Delay
Speech
And
Language
THIS STUDY ALSO LOOKED AT THE RELATIVE RISK OF VARIOUS TYPES OF ABUSE FOR SPECIFIC DISABILITIES. IF WE LOOK AT SEXUAL ABUSE IN PARTICULAR, CHILDREN WITH SPEECH AND LANGUAGE DISABILITIES WERE AT 2.9 TIMES THE RISK OF SEXUAL ABUSE, DEVELPMENTAL DELAY 4 TIMES THE RISK OF SEXUAL ABUSE, CHILDREN WITH BEHAVIOR DISORDERS AT 5.5 TIMES THE RISK OF SEXUAL ABUSE, ETC.
All disabilities/All maltreatment (31/9)

25. Relative Risk of Various Types of Maltreatment in Children with Behavior Disorders
Neglect
Physical
Abuse
Emotional
Sexual
7.0
5.5
AND IT WE TAKE CHILDREN WITH BEHAVIOR DISORDERS WE SEE THAT THEY ARE AT 7 TIMES THE RISK OF NEGLECT, PHYSICAL ABUSE AND EMOTIONAL ABUSE THAN THEIR PEERS WITHOUT DISABILITY.

26. Prevalence of Maltreatment Types
Neglect most common type of maltreatment for children, both with and without disabilities
Most children endure multiple types of maltreatment
No significant association between type of disability and type of maltreatment

27. Relationship between maltreatment and age
Children with disabilities tend to be maltreated at younger ages that children without disability (preschool>elementary), therefore……
Early intervention and support services critical for families with young children with disabilities
Can target prevention efforts to period of maximum risk

28. Relationship between maltreatment and gender
Among children with disabilities, more boys are victims than girls
The reverse is true in non-disabled children
Likely reflects the greater prevalence of disabilities in males

29. ADDRESSING THE COMMON MISCONCEPTIONS

30. Children with disabilities are at low risk because people feel sorry for them..
Cognitive and communication limitations make reporting assaults/abuse less likely
Children with disabilities are less likely to grow out of dependent stage, there is always a power differential
Contact with a large number of service providers and alternate caretakers

31. Children with intellectual disabilities do not know what is happening and will not suffer…
No evidence to suggest that children with disabilities are less affected than other victims
Children with disabilities may be at greater risk of emotional problems and impaired resiliency

32. Children with disabilities can be made safe by restricting their contact with strangers….
The perpetrators of abuse are most likely to be family members, teachers, residential care providers and aides, including transportation.
Reducing a child’s contacts may create a paucity of safe people in whom the child can confide.
Offenders may seek employment in institutions designed to protect children with disabilities

33. Children with disabilities could just say “NO”
Tremendous power differential makes it very difficult for all children, but especially children with disabilities to say “no”
Children with disabilities may have lack of experience with evaluative thinking, decision making and assertiveness
Children with developmental disabilities may be excluded from sex education and abuse prevention programs

34. CONTRIBUTING FACTORS
Greater emotional, physical, economic and social demands on their families
Lack of appropriate substitute caregivers
--> no respite or breaks in child care responsibilities
The greater the health care and educational needs, the greater the opportunity for neglect of those needs

35. CONTRIBUTING FACTORS
Children with behavior problems may be difficult to discipline.
Children in foster care may lack permanent placement, medical home and appropriate foster parents with sufficient skills and education to handle the special needs of the child.

36. Contributing Factors and Sexual Abuse
Children may have increased dependency on caregivers for their physical needs and may be accustomed to having their bodies touched by adults
Children may fear retribution by their caretakers if they were to tell about their sexual abuse
Many alternate communication systems lack language for the intimate body parts and sexual acts

37. Causal Factors and Sexual Abuse
Children may be conditioned to comply with authorities and receive positive rewards for being passive or “easy to care for”
Impaired communication may prevent their disclosing abuse.
The child may not be able to discern that the event was abusive.

38. QUIZ QUESTION # 1

39. THE ROLE OF THE MEDICAL PRACTITIONER

40. PEDIATRIC HEALTH PROVIDERS
GENERALIST PEDIATRICIANS
SPECIALIST PEDIATRICIANS
FAMILY PRACTITIONERS
NURSE PRACTITIONERS
PHYSICIAN ASSISTANTS

41. MODERN ROLE OF THE PEDIATRIC HEALTH PROVIDER – INCLUDES:
Providing immunizations
Preventing injuries with anticipatory guidance
Discussing the child’s education
Advising families on lifestyle goals
Promoting good health – ie.nutrition & exercise
Community Activism
Becoming an expert on abuse avoidance and recognition
THE ROLE OF THE PRIMARY PEDIATRIC HEALTH CARE PROVIDER IS VERY DIFFERENT NOW THAN IT WAS EVEN YEARS AGO. WITH THE ADVENT OF NEW TECHNOLOGIES AND THE MOVE TOWARD TERTIARY CARE BEING IN THE PERVUE OF HIGHLY SUBSPECIALISED PEDIATRICIANS, THE PRIMARY CARE PROVIDER HAS NOT ONLY MORE TIME BUT THE DUTY TO DEALVE INTO THE PREVENTIVE AND HEALTH MAINTENANCE DOMAINS OF…….

42. The Triad Child Parent/Abuser Triggering Crisis
PEDIATRIC HEALTH PROVIDERS NEED TO UNDERSTAND HOW ELEMENTS RELATED TO THESE THREE FACTORS INTERACT TO CREATE AN ABUSIVE MILEAU. WHILE THESE CONCEPTS RELATE TO MALTREATMENT OF ALL CHILDREN, THEY ARE ESPECIALLY POWERFUL IN THE CASES OF CHILDREN WITH DISABILITIES

43. Triad: The Child Child viewed as evil or different
Prematurity, chronic illness, developmental disability or congenital defect
Behavioral problems
PARENTS OF CHILDREN WITH DISABILITIES INCLUDING CHRONIC HEALTH CONDITIONS MAY FEEL GUILTY ABOUT THEIR CHILD’S PROBLEM, THEY MAY FEEL THAT IT IS DUE TO SOMETHING THEY DID OR DID NOT DO. THEY MAY BE ANGRY AND FRUSTRATED THAT THEIR CHILD HAS NOT FULFILLED THEIR EXPECTATIONS. THEY MAY BE DEPRESSED AND MOURN the LOSS OF THEIR IDEAL OF A PERFECT CHILD.
BY THE WAY, THIS SLIDE HAS BEEN PART OF MY GENERAL PRESENTATION ON THE RECOGNITION OF CHILD ABUSE AND NEGLECT FOR MANDATED REPORTERS. UP UNTIL ABOUT ONE AND HALF YEARS AGO WHEN I BEGAN MY ODYSSEY INTO THIS PARTICULAR FIELD, IT WAS THE ONLY SLIDE IN MY LECTURE THAT DEALT WITH THE VULNERABILITY OF CHILDREN WITH DISABILITIES. ###

44. Triad: The Parent/Abuser
Abused as a child
Poor self concept
Low intelligence
Adolescent
Unrealistic expectations
Absence of nurturing
Poor mental or physical health

45. Triad: Triggering Crisis
Social isolation/single parent households
Marital problems/domestic violence
Substance abuse
Loss of income
Homelessness

46. HEALTH CARE PROVIDERS IDENTIFICATION
While recognizing the particular vulnerability of children with disabilities, providers must always be alert to signs or symptoms of abuse and neglect
Providers must be familiar with injury patterns of inflicted vs. non-inflicted injuries
Providers must not assume that changes in behavior are simply manifestations of the child’s disability
Injuries must not be assumed to be related to the child’s disability

51. Physical Abuse Behavioral Characteristics:
Overly passive or aggressive
Fear of going home
Inconsistent explanation of injuries
Wears concealing clothing
Low self esteem and blames self for abuse
Behavioral difficulties

52. Physical Abuse History: Who, What, When, Where, How?
Clues that should heighten suspicion:
Parental lack of cooperation
Inappropriate reactions
Parental expression of guilt or fear
Signs of addiction in the caretaker
Tension or hostility between caretakers
Inconsistent history
Delay in seeking medical care

53. Physical Abuse Further clues to heighten suspicion:
A child readily admits that an adult hurt him
“Partial confessions”
A parent denies knowledge of significant injuries
A parent claims that the injury was caused by a sibling

54. THE STORY OF M.F.

56. HEALTH CARE PROVIDERS REPORTING
If abuse or neglect is suspected, a report must be made to the appropriate child protection agency
No assumption should be made about the guilt or innocence of the adult who has brought the child for care.
Refer to a Child Advocacy Center &/or call for consultation, when available
Cooperate with the investigation

57. HEALTH CARE PROVIDERS TREATMENT
Providers must treat injuries and infections appropriately
Assure that CPS is aware of the child’s medical and disability status
Assure that a “medical home” is maintained if a child goes into care
Provide a written summary of medications, equipment, therapies and other necessary services

58. HEALTH CARE PROVIDERS EDUCATION
Pediatric health care providers are uniquely qualified to educate CPS workers, law enforcement, child care professionals, educators, and judges about signs and symptoms of child abuse AND the vulnerability of children with disabilities

59. HEALTH CARE PROVIDERS PREVENTION
Assure prompt referral to Early Intervention so that an Individual Family Service Plan can be developed
Identify and explore family stressors
Provide support and assistance to families of children with disabilities –
parenting skills programs
support groups
home health services
respite care

60. Chaotic Home

61. Crack Pipe

62. Family Violence

63. HEALTH CARE PROVIDERS PREVENTION
Be on the lookout for parental depression and other mental health problems
Screen for Domestic Violence
Serve as the coordinator of care
Recognize and foster child and family strengths

64. HEALTH CARE PROVIDERS PREVENTION
Talk to parents about discipline and teach nonviolent strategies for handling difficult and inappropriate behaviors
Educate parents about the vulnerability of their child with disabilities – in a supportive way
what can parents be on the lookout for
encourage involvement in their child’s school and familiarity with the people who will be working with their child
look for programs with open spaces and staff supervision

65. HEALTH CARE PROVIDERS PREVENTION
Talk to the parents about appropriate sexuality education
Encourage parents to provide their children with the words to use and the opportunities to tell them if something has happened

66. HEALTH CARE PROVIDERS ADVOCACY – work within professional organizations to:
Promote a positive image of children, youth and adults with disabilities.
Enforce the Americans with Disabilities Act and other laws relating to disabilities and inclusion. Implement new laws.
Increase public awareness of the problem through advertising and media.
Increase funding for research on the relationship between disability and maltreatment.

67. HEALTH CARE PROVIDERS ADVOCACY
Advocate for state practices or policies that require CPS agencies to screen children, who are involved in child abuse investigations, for disabilities
Advocate for screening procedures for potential employees of educational, residential and recreational settings for children with disabilities

68. QUIZ QUESTION # 2

69. AMERICAN ACADEMY OF PEDIATRICS AUGUST, 2001
SUMMARY
AMERICAN ACADEMY OF PEDIATRICS
AUGUST, 2001

70. AAP RECOMMENDATIONS
All pediatricians should be capable of recognizing signs and symptoms of child maltreatment in all children and adolescents, including those with disabilities.
Because children with disabilities may be at increased risk for maltreatment, pediatricians should be vigilant not only in their assessment for indications of abuse but also in their offerings of emotional and instrumental support.

71. AAP RECOMMENDATIONS
Pediatricians should ensure that any child in whom abuse has been identified is thoroughly evaluated for disabilities.
All children with disabilities should have a medical home.
Pediatricians should be actively involved with treatment plans developed for children with disabilities.

72. AAP RECOMMENDATIONS
Health supervision visits should be used as a time to assess a family’s strengths and need for resources to counterbalance family stressors and parenting demands.
Pediatricians should advocate for changes in state and local policies in which system failures seem to occur regarding identification, treatment, and prevention of maltreatment of children with disabilities.
Pediatricians should advocate for better health care coverage by both private insurers and governmental funding.

73. THANK YOU FOR PARTICIPATING IN THE SESSION
PLEASE FILL OUT THE EVALUATION!