Child Maltreatment Among Children with Chronic Illnesses & Disabilities: Child Maltreatment Among Children with Chronic Illnesses & Disabilities Joän M. Patterson, PhD Barbara Kratz, MS, CPNP developing a COLLECTIVE VOICE for CHILDREN Seminar Series January 29, 2002


Extent of the Problem: 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


Different Rates Due to Study Methods: 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


Rates of Maltreatment in Residential Treatment Facilities: Rates of Maltreatment in Residential Treatment Facilities Maltreated No Abuse Hospital Residential Control Sullivan & Knutson, 1998


Does Maltreatment Cause Disability?: Does Maltreatment Cause Disability? Maltreatment Suspected to Have Caused Disability Based on NIS-2: Caseworkers’ judgment


Definition of Disability: 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)


Developmental Disability: 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)


Serious Ongoing Health Condition: 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 child’s age (Stein et al., 1993)


Prevalence of Chronic Conditions for Children <18 years*: Prevalence of Chronic Conditions for Children <18 years* 30.8% 18.0% 6.7% 0.2% 0.1% Chronic Physical Conditions Special Health Care Needs Limitation of Activity Assistance/ Equipment For ADLs In LTC Institution *Newacheck et al., 1998 using 1994 NHIS-D


Who is Most Likely to Have a Chronic Condition?: 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%


Types of Maltreatment: Types of Maltreatment


Expanded Definition of Maltreatment*: 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


Gender Differences in Type of Abuse by Disability Status: Gender Differences in Type of Abuse by Disability Status With Disabilities Without Disabilities Boys Girls Boys Girls


Characteristics of Victims: 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


Rate of Maltreatment of CwD: Rate of Maltreatment of CwD Maltreated CwD (per 1000 maltreated children) CwD (per 1000 children in population) Emotional Disturbance Learning Disability Speech Language Impairment Physical Health Problem Mental Retardation


Risk of Maltreatment Occurs in an Ecological Context: 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


Slide17: SOCIETY economic recession stigma towards disability discrimination COMMUNITY FAMILY CHILD poor schools too few jobs peer incivilities poor child care poor access to health care marital conflict parent depression crowding lack of affordable housing crime disability poverty social isolation bio- terrism growing gap between rich & poor social injustice substance abuse inadequate funding for special ed crisis in health care spending


Cumulative Impact of Risk Factors: 0 1 2 3 4 5 6 7-8 Number of Risk Factors Risk for Abuse Cumulative Impact of Risk Factors


Societal Risk Factors related to Disability: 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 & don’t 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


Stress from Care Giving : 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


Stress Due to Parent Response: Stress Due to Parent Response Unrealistic expectations by parents who lack knowledge about child’s condition More likely if disability is mild or moderate Emotional reactions Unresolved grief – loss of “normal” child Anger Embarrassment Belief that child’s disability is punishment


Insufficient Resources Can Exacerbate Caregiver Stress: Insufficient Resources Can Exacerbate Caregiver Stress Lack of social support, leading to isolation Inadequate financial resources Inadequate health, education, and social services to meet child’s needs Continuous conflicts with professionals Conflicts with public & private payers of services


Slide23: Too many demands & too few resources = Stress


Disruptions in Attachment: Disruptions in Attachment Could be due to: Frequent hospitalizations Child’s inability to provide social cues Unresponsiveness of the child Parent’s fear that child may die Disfigurement of child Parental depression or grieving


Potential Vulnerabilities of Children with Disabilities: Potential Vulnerabilities of Children with Disabilities Dependency on others to have basic needs met Survival may depend on obeying caregiver’s 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


Potential Vulnerabilities of Children with Disabilities: 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


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 Studies of Families of Children with Disabilities & Chronic Illnesses


Risk Processes in Families of Children with Chronic Conditions: 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


Sources of Nonsupport : 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 Payers of services 7 7 Social service providers 3 6 Educators 6 2


Nonsupportive & Hurtful Behaviors : 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


Nonsupportive & Hurtful Behaviors : 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


Risk Processes in Families of Children with Chronic Conditions: 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


Unmet Service Needs of Children with Chronic Conditions: 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


Parent-Reported Reasons for Unmet Needs: 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


Risk Processes in Families of Children with Chronic Conditions: 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


Families Caring for Medically Fragile Children at Home: 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


Risk Processes in Families of Children with Chronic Conditions: 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 baby’s cues Uncertainty about setting appropriate limits and expectations for child’s behavior


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


Prevention at Societal Level: 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


Prevention at Societal Level: 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


Prevention at Professional Level: 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


Prevention at Professional Level: 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


Prevention at Family Level: 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 child’s risk of maltreatment by others Teach parents how to talk with child about abuse & to recognize child’s cues if abused


Prevention at Family Level: 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


Programs for Families: Programs for Families Home Visiting programs Parent-to-Parent programs Early intervention services Parent Advocacy organizations, such as PACER


Prevention Efforts for Children with Disabilities: 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


Sexuality: 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 2000:A call to action. New York: Sex Information and Education Council of the U.S. (p.28)


Sexual Learning for Individuals with Disabilities: 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.


Develop Defenses Against Abuse/Exploitation: 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


Increase Awareness of Sexual Abuse: 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.


Incorporate Proactive Sexuality Education: 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


Incorporate Proactive Sexuality Education: 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


Support the Parental Role: 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.


Sexuality Education Triangle : Sexuality Education Triangle Parents sharing personal values, home approaches for dealing with inappropriate sexual behaviors, and identifying successful teaching strategies. Disability Solutions Volume 4, Issue 5 March/April 2001, (p.5). Professional Parents & Family Person with Disability Repetition Consistency Reinforcement


Sample Goals for Sexuality Program: 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


Sexuality Education: 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.


Sexuality Education (cont): 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


Sexuality Education (cont): 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


Sexuality Education (cont): 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


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


Sexuality Education Topics (cont): 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.


Wisconsin Council on Developmental Disabilities: Wisconsin Council on Developmental Disabilities S T A R S 2 Skills 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.


CIRCLES Intimacy and Relationships: 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, CA:James Stanfield Publishing Company.


Circles Concept : Circles Concept RED - Red Stranger Circle includes people you don’t 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


Sample Goals for Sexuality Consultation Visit: 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


Sexuality Consultation Visit Questionnaire: 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


Summary: 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


References: 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, Baltimore:Paul 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 2000:A call to action. New York:Sex Information and Education Council of the U.S. (p.28). Schwier, K., & Hingsburger, D. (2000). Sexuality. Baltimore, Maryland:Paul H. Brookes Publishing Champagne, M.P., & Walker-Hirsch, L.W. (1983, 1993). CIRCLES Intimacy and Relationships Santa Barbara, CA:James Stanfield Publishing. Senn, C. (1988). Vulnerable:Sexual abuse and people with an intellectual handicap. North York, Ontario, Canada: The Roeher Institute.