Child Maltreatment Among Children with Chronic Illnesses & Disabilities

1
Child Maltreatment Among Children with Chronic
Illnesses Disabilities
developing a COLLECTIVE VOICE for CHILDREN
Seminar Series

• Joän M. Patterson, PhD
• Barbara Kratz, MS, CPNP

January 29, 2002
2
Extent of the Problem

• Children with disabilities at ?risk of abuse and
  neglect
• Data from 1988 National Incidence Study
• 175,000 300,000 CwD abused each year
• 35.5 per 1000 1.7 times ? risk
• Omaha public schools study, 1994-5
• 3.4 times ? risk for CwD
• In addition, abused and neglected children are at
  ? risk of developing a disability

3
Different Rates Due to Study Methods

• NIS-2
• National sample of 35 CPS agencies
• Early 1991
• Prospective incoming cases for 4-6 wks
• Disability CPS worker assessment
• Abuse Substantiated CPS investigations
• Primarily family perpetrators

• Omaha Public Schools
• All students, including early intervention
• 1994-95 school year
• Retrospective school, social services, law
  enforcement data merged
• Disability school records of all special ed
  students
• Abuse Substantiated CPS investigations
• Family non-family perpetrators

4
Rates of Maltreatment in Residential Treatment
Facilities
Maltreated No Abuse
Hospital Residential Control
Sullivan Knutson, 1998
5
Does Maltreatment Cause Disability?
Maltreatment Suspected to Have Caused Disability
Based on NIS-2 Caseworkers judgment
6
Definition of Disability

• Limitation in physical or mental function (caused
  by one or more health conditions) in carrying out
  socially defined tasks or roles that individuals
  generally are expected to be able to do
• (Institute of Medicine)

7
Developmental Disability

• Serious chronic condition attributable to a
  mental or physical impairment
• Manifest before age 22 and likely to continue
  indefinitely
• Resulting in substantial limitations in a
  prescribed set of activities and
• Requiring special interdisciplinary care
• (Developmental Disabilities Act of
  1984)

8
Serious Ongoing Health Condition

• Condition which has a biologic, psychologic or
  cognitive basis
• Has lasted or is expected to last for at least 1
  year, and
• Produces one or more of the following
• Limitation in function, activities or social role
• Assistance to compensate for limited function,
  activities, or roles (e.g., meds, special diet,
  medical device, personal care attendant)
• Need for services over and above the usual for
  childs age

• (Stein et al., 1993)

9
Prevalence of Chronic Conditions for Children
lt18 years
Chronic Physical Conditions
30.8
Special Health Care Needs
18.0
Limitation of Activity
Assistance/ Equipment For ADLs
In LTC Institution
6.7
0.2
0.1
Newacheck et al., 1998 using 1994 NHIS-D
10
Who is Most Likely to Have a Chronic Condition?

• Boys
• 20.9 vs. 15 of girls
• Older than 5 years
• African American
• 18.6 vs 18.6 white 15 Hispanic
• Family income at or below poverty
• 22.9 vs 16.9
• Single parent family
• 23.3 vs 16.2

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Types of Maltreatment
12
Expanded Definition of Maltreatment

• Absence of care treatment
• Absence of accommodations
• Misuse of psychotropic meds
• Inappropriate education
• Dilution of self-determination
• Lack of community alternatives
• Inappropriate cessation of life support or
  withdrawal of care
• Lack of intervention on behalf of infants
  exposed to HIV virus
• Sterilization abortion

• Inhumane care
• Forced treatment
• Civil commitment
• Absence of benefits
• Victimization
• Negligence
• Inappropriate custodial care
• Breaches of privacy or confidentiality

John Parry, Director Am Bar Assn Commission on
Mental Physical Disability Law
13
Gender Differences in Type of Abuse by
Disability Status
With Disabilities Without Disabilities Boys
Girls Boys Girls
14
Characteristics of Victims

• Risk by type of disability
• Emotional behavioral disorders highest
• Learning disabilities
• Speech/language impairments
• Mental retardation
• Health impairments
• Perinatally at-risk LBW, drug exposed, HIV

15
Rate of Maltreatment of CwD
Maltreated CwD (per 1000 maltreated children)
CwD (per 1000 children in population)
Speech Language Impairment
Physical Health Problem
Emotional Disturbance
Learning Disability
Mental Retardation
16
Risk of Maltreatment Occurs in an Ecological
Context

• Includes general risk factors affecting all
  children
• Family problems and dysfunction
• Economic hardship
• Parent psychiatric problems substance abuse
• Parent discord domestic violence
• Community problems
• Neighborhood deterioration overcrowding, gangs,
  crime, social disorganization
• Inadequate/inaccessible services health,
  schools, child care
• Lack of affordable housing
• Societal problems
• Social injustices
• Economic recession

17
Risk of Maltreatment Occurs in an Ecological
Context
discrimination
economic recession
inadequate funding for
special ed
lack of affordable housing
too few jobs
crisis in health care spending

crowding
parent depression
substance abuse
poor access to health care
crime
poverty
disability
poor child care
bio- terrism
CHILD

marital conflict
social isolation
social injustice
FAMILY
poor schools
peer incivilities
growing gap between rich poor

COMMUNITY
stigma towards disability
SOCIETY
18
Cumulative Impact of Risk Factors
Risk for Abuse
0 1 2 3 4
5 6 7-8
Number of Risk Factors
19
Societal Risk Factors related to Disability

• Societal attitudes devalue children with
  disabilities
• Practices that segregate separate
• ? perception of differences
• ? social distance dehumanizes others
• ? acceptability of violence
• Myths about disability ? vulnerability, such as
• CwD are asexual dont need sex education
• CwD are unable to manage own behavior, justifying
  excessive control by caregiver
• CwD do not feel pain justifying aversive
  therapies
• All caregivers are good, resulting in inattention
  to signs of abuse

20
Stress from Care Giving

• Some CwD have significant care needs (such as
  help with ADLs, medical procedures, etc.)
• Time consuming and tedious
• Care needs often do not diminish with age
• Some have challenging behaviors (such as temper
  tantrums, aggressiveness, noncompliance
• Some require a lot of monitoring, consistent
  limit-setting structure

21
Stress Due to Parent Response

• Unrealistic expectations by parents who lack
  knowledge about childs condition
• More likely if disability is mild or moderate
• Emotional reactions
• Unresolved grief loss of normal child
• Anger
• Embarrassment
• Belief that childs disability is punishment

22
Insufficient Resources Can Exacerbate Caregiver
Stress

• Lack of social support, leading to isolation
• Inadequate financial resources
• Inadequate health, education, and social services
  to meet childs needs
• Continuous conflicts with professionals
• Conflicts with public private payers of
  services

23

Too many demands too few resources
Stress
Financial strains
Public stigma
Loss of support networks
Help from relatives
Strains with health providers
Parent exhaustion
Good school programs
Good medical providers
Prognosis uncertain
Family cohesiveness
Bills for health care services increase
Parent sense of mastery
Father not promoted at work
Relatives are unsupportive
Marital conflict about child care
Maternal work leave of absence
Child dx with chronic illness
24
Disruptions in Attachment

• Could be due to
• Frequent hospitalizations
• Childs inability to provide social cues
• Unresponsiveness of the child
• Parents fear that child may die
• Disfigurement of child
• Parental depression or grieving

25
Potential Vulnerabilities of Children with
Disabilities

• Dependency on others to have basic needs met
• Survival may depend on obeying caregivers
  demands
• Compliance is instilled as good behavior
• Child may even feel body is not his/her own
• Inability to communicate
• Needs preferences
• Inappropriate behavior of a caregiver or others
• Isolation rejection by others
• Increases responsiveness to attention, affection
  a desire to please

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Potential Vulnerabilities of Children with
Disabilities

• Insensitive and/or intrusive medical
  interventions
• Lack of control or choice over their own lives
• May be unable to defend themselves or escape
• Poor judgment social naiveté ? risk for sexual
  exploitation emotional abuse
• Lack of knowledge about sex
• Misunderstanding of sexual advances
• Inability to distinguish between different types
  of touching

27
Studies of Families of Children with Disabilities
Chronic Illnesses

• Project Resilience
• 327 children and their families
• 186 infants 6-24 months
• 141 pre-adolescents 8 - 10 years
• In 2 states Minnesota and Washington
• 231 followed for 6 years
• Medically fragile children living at home
• Families of children with cystic fibrosis
• Clinical work with families living with chronic
  health conditions

28
Risk Processes in Families of Children with
Chronic Conditions

• Becoming socially isolated
• Added demands on time
• Child and/or family experiences stigma
• Physical and emotional exhaustion
• Withdrawal of some friends and relatives

29
Sources of Nonsupport

mothers fathers n 135
n 95 Extended family members 86 54 Community
sources Friends 24 13 Strangers 23 19
Work associates 12 7 Acquaintances 9
2 Church members 4 0 Professional
service providers Medical professionals 82 34 Pa
yers of services 7 7 Social service
providers 3 6 Educators 6 2
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Nonsupportive Hurtful Behaviors

• From extended family members
• Lack of support understanding
• Lack of contact involvement with child
  family
• Unsolicited, unhelpful advice information
• Not offering to help
• Nonacceptance of child condition
• Avoidance of talking about the situation
• Insensitive, invasive comments questions
• Negative attitudes

31
Nonsupportive Hurtful Behaviors

• From professional service providers
• Insensitive, dismissive communication
• Disrespectful attitude manner
• Poor care treatment
• Inadequate, incorrect information
• Lack of understanding of family needs
• Inadequate professional knowledge
• Conflicts in managing care for child

32
Risk Processes in Families of Children with
Chronic Conditions

• Conflicts with service systems
• Providers who do not respect families
• Inadequate or contradictory information
• Payers who deny health services for children with
  chronic health conditions
• Policy changes regarding eligibility for services
• Negative public attitudes about education costs
  for children with chronic health conditions

33
Unmet Service Needs of Children with Chronic
Conditions

• 28 of parents of young children reported unmet
  needs, primarily for
• Occupational therapy
• Physical therapy
• Speech therapy
• 44 of parents of adolescent cohort
• Physical therapy
• Counseling mental health
• Occupational therapy

34
Parent-Reported Reasons for Unmet Needs

• Lack of funding from private insurance or public
  payer sources
• Services not available or there is waiting list
• Schools did not have service available, or would
  not pay for it

35
Risk Processes in Families of Children with
Chronic Conditions

• Health of care givers declines
• Conflicts with service providers payers
• Burden of providing home care
• Loss of support network
• Worry about well-being of other family members

36
Families Caring for Medically Fragile Children
at Home

• Parent psychological distress
• 58 of mothers in psychiatric case range
• 67 of fathers in psychiatric case range
• 75 of families - 1 or both parents in case range
• Sources of stress
• Losses privacy, time, normal family life
• Parenting strains constant care, decisions,
  worry
• Problems with service providers
• Care providers in the home
• Finding services hassles with payers

37
Risk Processes in Families of Children with
Chronic Conditions

• Less effective parenting
• Parental depression may reduce ability to provide
  emotional support to child
• Greater challenges in reading and responding to
  babys cues
• Uncertainty about setting appropriate limits and
  expectations for childs behavior

38
Too Many Family Demands May Lead to Child
Maltreatment
Increase in Caregiver Depression
Risk for Abuse or Neglect
Less Effective Parenting
Child Behavior Problems
Care Giving Burden
Family Social Isolation
39
Prevention at Societal Level

• Use an ecological approach to reduce risk factors
  at all levels family, community society
• Increase public awareness of the problem
• Media should NOT sensationalize or be
  paternalistic towards disabilities
• Improve societal attitudes about persons with
  disabilities
• Promote inclusion in everyday life activities

40
Prevention at Societal Level

• Ensure program policies procedures to protect
  children cared for by others
• Enforce existing laws protecting children
• Assure public private funding of services
  needed by CwD and their families

41
Prevention at Professional Level

• Improve training of all professionals who have
  contact with CwD
• Health care providers
• Teachers and school personnel
• Law enforcement officials
• Improve training of child maltreatment staff
  about childhood disabilities
• Risk assessment by CPS workers should include
  disabilities as a risk factor

42
Prevention at Professional Level

• Respect preferences priorities of CwD
• Ensure that they are included heard in decision
  making
• Advocate for needs of families children
• Careful screening of extrafamilial caregivers of
  CwD
• Training, supervision support of all
  professionals who provide care for CwD

43
Prevention at Family Level

• Build family strengths capacity
• Increase parents knowledge about child
  development realistic expectations
• Strengthen parenting skills especially
  strategies for managing difficult behavior
• Educate parents about their childs risk of
  maltreatment by others
• Teach parents how to talk with child about abuse
  to recognize childs cues if abused

44
Prevention at Family Level

• Build family strengths capacity (cont)
• Assist parents in developing strong attachment
  bonds with their child
• Improve parents coping skills for managing
  stress
• Reduce isolation increase social support
• Improve family access to resources, such as
• Respite care
• Service coordination

45
Programs for Families

• Home Visiting programs
• Parent-to-Parent programs
• Early intervention services
• Parent Advocacy organizations, such as PACER

46
Prevention Efforts for Children with Disabilities

• Educate children about their rights
• Increase their capacity to make their needs and
  preferences known
• Provide self-determination self-advocacy
  training

47
(No Transcript)
48
Sexuality

• Human sexuality encompasses the sexual
  knowledge, beliefs, attitudes, values, and
  behaviors of individuals
• It deals with the anatomy, physiology, and
  biochemistry of the sexual response system
• With roles, identity, and thoughts, feelings,
  behaviors, and relationships
• It addresses ethical, spiritual, and moral
  concerns, and group and cultural variations

Haffner, D.W. (1990, March). Sex education 2000A
call to action. New York Sex Information and
Education Council of the U.S. (p.28)
49
Sexual Learning for Individuals with Disabilities

• Opportunities for learning about sexuality more
  limited
• Fewer chances to observe, develop, practice
  social skills
• Trouble with reasoning/judgment
• Struggle to pick up subtle social skills
• Difficulty with generalization of knowledge
• Difficulty with sequencing tasks

• Disability Solutions Vol. 4 Issue 5 March/April
  2001.
• Schwier K Hingsburger D. (2000). Sexuality.
  Baltimore, MD Brookes Publishing.

50
Develop Defenses Against Abuse/Exploitation

• Teach confidence/assertiveness
• Teach your child they can talk to you about
  anything
• Teach how to say no and yes
• Support independent experiences
• Differentiate between demands/choices

Schwier K Hingsburger D. (2000). Sexuality.
Baltimore, MD Brookes Publishing
51
Increase Awareness of Sexual Abuse

• People with disabilities are more vulnerable to
  exploitation and abuse
• Majority perpetrated by someone victim knows and
  trusts
• Greatest risk of exploitation to those
  insulated/protected/sheltered from what can happen

Disability Solutions Vol. 4 Issue 6 May/June 2001.
52
Incorporate Proactive Sexuality Education

• Use developmental approach vs. teaching around
  crises situations
• Build on earlier taught skills
• Address wide variety of issues that contribute to
  healthy sexual adulthood
• People who have accurate information about
  sexuality less likely to be victimized

• Senn C. (1988). Vulnerable Sexual abuse and
  people with an intellectual handicap. North York,
  Ontario, Canada The Roeher Institute.
• Schwier K Hingsburger D. (2000). Sexuality.
  Baltimore, MD Brookes Publishing

53
Incorporate Proactive Sexuality Education

• Sex education increases likelihood that people
  with disabilities will have skills to stay safe
  or report victimization

Schwier K Hingsburger D. (2000). Sexuality.
Baltimore, MD Brookes Publishing
54
Support the Parental Role

• Parents - Primary Sexuality Educators
• Modeling and teaching messages about love,
  affection, touch, relationships
• Provide parents knowledge about sexuality and
  help develop that knowledge
• Develop values
• Utilize parallel talk

• Disability Solutions Vol. 4 Issue 5 March/April
  2001.
• Schwier K Hingsburger D. (2000). Sexuality.
  Baltimore, MD Brookes Publishing.

55
Sexuality Education Triangle

• Parents sharing personal values, home approaches
  for dealing with inappropriate sexual behaviors,
  and identifying successful teaching strategies.

Person with Disability
Repetition ConsistencyReinforcement
Professional
Parents Family
Disability Solutions Volume 4, Issue 5
March/April 2001, (p.5).
56
Sample Goals for Sexuality Program

• Present accurate information in a way in which it
  can be understood
• Develop communication skills
• Assist the participants in exploring their own
  feelings and developing their own attitudes and
  values
• Assist the participants in learning to make their
  own decisions in a responsible way

Howes N. A Program in Human Sexuality for the
Developmentally Disabled, P.O. Box 29T,
Sheldonville, MA. 02070
57
(No Transcript)
58
Sexuality Education

• Sexuality education begins at birth
• Knowledge/incorporation of family values/ beliefs
  integral to the success of any education program
• Explore family's level of comfort with sexuality
  education
• Reinforce that it is normal to ask for help with
  education

Monat-Haller RK. (1992). Understanding
Expressing Sexuality, Baltimore Brookes.
59
Sexuality Education (cont)

• An interdisciplinary approach can be most
  effective however, a consistent philosophy is
  integral to positive outcomes
• Emphasize the positive skills and traits of the
  individual
• Development of positive self-esteem is a
  cornerstone to healthy psychosocial-sexual
  behaviors
• Assess existing knowledge and skills related to
  sexuality prior to beginning education

60
Sexuality Education (cont)

• Individualize sexuality education to meet the
  language/cognitive systems of the individual with
  mental retardation or developmental disability
• Assess learning style of the individual
• Be consistent with teaching methods/
  materials/information across settings
• Repetition of information is necessary
• Use correct terminology

61
Sexuality Education (cont)

• Include appropriate vs. inappropriate sexual
  behavior and public vs. private behavior
• Outline rules and norms of the environment and
  community
• Include concrete examples from different settings
  and situations specific to the individual to
  ensure carryover of information
• Goal is to learn to generalize behavior to
  different environments
• Consider the individual's living environment

62
Sexuality Education Topics

• Body parts
• Maturation and body changes
• Personal care/hygiene/grooming
• Feminine care
• Medical exams
• Social etiquette including social skills
• Relationships

63
Sexuality Education Topics (cont)

• Exploitation Prevention
• Dating/Relationship Development
• Sexual Expression within Relationships
• Pregnancy Prevention (Birth Control)
• Sexually Transmitted Diseases and Prevention
• Rights/Responsibilities of Sexual Behavior

Disability Solutions Volume 4, Issue 6 May/June
2001.
64
Wisconsin Council on Developmental Disabilities
Skills
S T A R S 2
Training for
Assertiveness
Relationship-Building
Sexual Awareness
for Children
STARS 2 for Children - A Guidebook for Teaching
Positive Sexuality and the Prevention of Sexual
Abuse for Children With Developmental
Disabilities, Wisconsin Council on Developmental
Disabilities, Susan Heighway and Susan Kidd
Webster, Waisman Center UAP, April 1993.
65
CIRCLES Intimacy and Relationships

• Concept that uses concentric circles to symbolize
  and broadly categorize many diverse relationships
  that are possible
• Tool to help individuals understand and manage
  real life relationships
• Overall emotional tone of a relationship revealed
  in combination of Touch, Talk, Trust

Champagne MP Walker-Hirsch LW. (1983, 1993).
CIRCLES Intimacy and Relationships. Santa
Barbara, CAJames Stanfield Publishing Company.
66
Circles Concept

• RED - Red Stranger Circle includes people you
  dont know. Touch, Talk, Trust none. Guarded
  feelings.
• ORANGE - Orange Wave Circle includes children and
  acquaintance whose face is familiar. Nod or smile
  not touch. Restrained emotions.
• YELLOW - Yellow Handshake Circle includes
  acquaintances known by name. Touch only at
  greeting. Talk not personal small talk.
  Limited trust. Respectful feelings.
• GREEN - Green Far Away Hug Circle is limited to
  extended family/friends. Affectionate touch.
  Talk personal news. Trust generally
  trustworthy. Friendly affectionate feelings.
• BLUE - Blue Hug Sweetheart Circle is reserved for
  boyfriends/girlfriends/husband/wife. Touch
  loving and romantic. Talk any subject,
  romantic, too. Full trust. Loving, romantic
  feelings.
• PURPLE - Purple Private Circle includes self.
  Touch Self love. Talk Self honesty. Trust
  Self reliance. Loving, nurturing feelings.

Leslie Walker-Hirsch, M. Ed
67
Sample Goals for Sexuality Consultation Visit

• Overall Goals
• Teach positive sexuality and the prevention of
  sexual abuse for children with developmental
  disabilities
• Promote independence
• Goals of Visit
• Address current concerns of parents/care
  providers regarding sexuality
• Assess parents current understanding of sexuality
  as it relates to their child with special needs
• Review goals of adolescence differentiate how
  goals are modified based on the unique needs of
  the adolescent
• Review components of a sexuality education
  program
• Review available resources specific to sexuality
  and adolescents with developmental disabilities

Sample of Sexuality Consultation Visit - Barb
Kratz, MS, CPNP
68
Sexuality Consultation Visit Questionnaire

• Name
  Date
• Chief concerns of parent relating to sexuality/
  Goals of visit
• Fears related to adolescent developmental phase
• Previous education / Programs on sexuality
• Long-term goals for child/adolescent
• Parent values relating to sexuality
• Previous experiences/behaviors relating to
  sexuality/areas of concern
• Health concerns / Individualized considerations
• Medications
• Developmental status
• Chronological age
• Cognitive
• Motor
• Communication
• Self help
• Social
• Learning style

Sample of Sexuality Consultation Visit
Questionnaire Barb Kratz, MS, CPNP
69
Summary

• Temptations to avoid while creating a safe world
• Denial of risks
• Denial of relationships
• Denial of rights

Schwier K Hingsburger D. (2000). Sexuality.
Baltimore, MD Brookes Publishing
70
References

• Disability Solutions Volume 4, Issue 5
  March/April 2001.
• Disability Solutions Volume 4, Issue 6 May/June
  2001.
• Howes N., RN, BS. A Program in Human Sexuality
  for the Developmentally Disabled. P.O. Box 29T,
  Sheldonville, MA. 02070
• Monat-Haller, R.K. (1992). Understanding
  Expressing Sexuality, BaltimorePaul H. Brookes
  Publishing.
• STARS 2 for Children - A Guidebook for Teaching
  Positive Sexuality and the Prevention of Sexual
  Abuse for Children With Developmental
  Disabilities., Wisconsin Council on Developmental
  Disabilities, Heighway, S. Kidd Webster, S.
  (April 1993). Waisman Center UAP.
• Haffner, D.W. (1990, March). Sex education 2000A
  call to action. New YorkSex Information and
  Education Council of the U.S. (p.28).
• Schwier, K., Hingsburger, D. (2000). Sexuality.
  Baltimore, MarylandPaul H. Brookes Publishing
• Champagne, M.P., Walker-Hirsch, L.W. (1983,
  1993). CIRCLES Intimacy and Relationships Santa
  Barbara, CAJames Stanfield Publishing.
• Senn, C. (1988). VulnerableSexual abuse and
  people with an intellectual handicap. North
  York, Ontario, Canada The Roeher Institute.