1. Maltreatment of Children with Disabilities: Research Overview Patricia M. Sullivan, Ph.D. Center for the Study of Children’s Issues Creighton University School of Medicine

2. Objective 1: The participants of this presentation will be able to identify the incidence of maltreatment among children and youth with disabilities including the demographic characteristics of age at first maltreatment, perpetrator characteristics, and family stress factors related to maltreatment. They will be able to identify the relative risks for different types of maltreatment for differing groups of children with disabilities.

3. Objective 2: The participants of this presentation will be able to identify co- occurring factors in the maltreatment of children with disabilities including the role of domestic violence, runaway behavior and parent characteristics.

4. Objective 3: The participants will acquire knowledge about the medical neglect of children with disabilities including the types of medical appointments they are most likely to miss and the most frequent reasons for missing them. Participants will learn the role of ethnicity, insurance provider, gender, socioeconomic, disability, and maltreatment status in children’s access to medical appointments.

5. MALTREATMENT OF CHILDREN WITH DISABILITIES: A HOSPITAL BASED EPIDEMIOLOGICAL STUDY PATRICIA M. SULLIVAN, Ph.D. JOHN F. KNUTSON, Ph.D.

6. Prevalence of Disabilities Among Abused Children 1982 to 1992 Abuse Prevalence: 15% Disability Prevalence: 64%

7. Prevalence of Disabilities Among Abused Children 1982 to 2000 Abuse Prevalence: 15% Disability Prevalence: 55%

8. MALTREATMENT OF CHILDREN WITH DISABILITIES: A SCHOOL BASED EPIDEMIOLOGICAL STUDY PATRICIA M. SULLIVAN, Ph.D. JOHN F. KNUTSON, Ph.D.

9. School-Based and Maltreatment Data Merger FCRB N=22,708 NDSS Central Registry N=37,201 Police Agencies N=12,614 School Records N= 40,211 POLICE n =2,177 NDSS n =2,530 FCRB n =2,017 CONTROL 35,708

11. Type of Maltreatment Experienced by Disability Groups

12. Severity of Neglect 1. Failure to educate or follow medical recommendations 2. Nonlife threatening lack of supervision or failure to follow-through on needed medical services 3. Lack of adequate food, housing, or critical medical care. 4. Life-threatening

13. Severity of Physical Abuse 1. Potentially injurious (i.e. endangerment) 2. Tissue Damaging (includes harmful restraint) 3. Serious injury requiring medical or dental services 4. Fatal or life-threatening

14. Severity of Sexual Abuse 1. Witnessing 2. Fondling 3. Oral-genital contact, digital penetration, genital-genital contact without penetration 4. Vaginal or anal intercourse.

15. Categorization of Maltreatment Duration 1. Single episode 2. Total less than one year 3. 1 year to 3 years 4. Longer than 3 years

16. Distribution – Severity of Abuse in a Hospital Based Sample Severity Level Sexual Abuse Physical Abuse Neglect 1 11%34%2% 224%53%33% 322%9%51% 443%4%14%

17. Distribution – Duration of Abuse in a Hospital Based Sample Duration Level Sexual Abuse Physical Abuse Neglect 1 50%45%32% 219%11%12% 315%16%17% 416%28%39%

18. Distribution – Severity of Abuse School Based Study (% within abuse category) Severity Level Sexual Abuse (Non-disabled/ Disabled) Physical Abuse (Non-disabled/ Disabled) Neglect (Non-disabled/ Disabled) 16.7%2.6%10.7%29.4%.05%0.2% 220.6%17.2%16.1%28.8%19.8%38.4% 39.7%9.6%4.3%8.4%10.4%26.9% 413.1%20.4%0.8%1.5% 2.7%

19. Distribution – Duration of Abuse School Based Study (% within abuse category) Duration (Months) Sexual Abuse (Non-disabled/ Disabled) Physical Abuse (Non-disabled/ Disabled) Neglect (Non-disabled/ Disabled) 037.1%50.1%26.5%65.6%25.2%57.4% 1-62.3% 1.0%2.5%2.4%5.6% 7-121.0%1.7%0.3%1.0%0.6%2.0% 13-180.8% 0.2%0.4%0.5%1.4% 19-240.4%0.6%0.1%0.2%0.3%0.8% 24+1.3%1.6%0.6%1.6%1.0%2.7%

20. Percent of Children with Specific Disabilities with Evidence of Maltreatment

21. Perpetrator-Victim Relationship

22. Characteristics of Sexual Abuse Perpetrators u 94.6% known to victim prior to episode of abuse u 86% Male u Intrafamilial= 71% parents; 29% siblings

23. RECORD OF DOMESTIC VIOLENCE IN THE HOME MAKES MATTERS WORSE

24. 24 Domestic Violence within a School- based Epidemiological Study Sullivan & Knutson 1997 u The rate of domestic violence in the home was higher for maltreated youth with disabilities than their nondisabled peers –17.2% of the maltreated children and youth with disabilities had a record of domestic violence in their home –16.3% of maltreated nondisabled children and youth had a record of domestic violence

25. 25 Domestic Violence within a School- based Epidemiological Study Sullivan & Knutson 1997 u Behavior disorders, mental disabilities, and speech/language disorders were the primary types of disabilities among the disabled maltreated children with a record of domestic violence u Multiple types of maltreatment were predominant in the records of both disabled (92%) and nondisabled (88%) children and youth.

26. Disabilities Among Abused Children in Families with Domestic Violence

27. CONCLUSIONS u Domestic violence is associated with increased prevalence of behavior disorders among maltreated children. u Domestic violence is associated with more severe educational outcomes of maltreatment.

28. Runaway Status u Youth with Disabilities at Increased Risk to Run u Behavior, Communication and MR u Maltreatment Increases Risk to Run u Physical Abuse & Sexual Abuse u Domestic Violence Increases Risk to Run u Behavior Disorders and No Disability u Traumatagenic Family Factors

29. ABUSED KIDS HAVE: u Lower reading scores u Lower math scores u Higher rates of absenteeism u Higher rates of special education placement

30. Age Grouping

31. Gender

32. Parent Victim of Abuse and Neglect

33. Eleven Stress Factors Co-existing with Child Abuse and Neglect u Inadequate housing u Financial problems u Marital problems u Pregnancy/ newborn u Parent ill/disabled u Mental/emotional problems u Alcohol/drug problem u Social isolation u Involved with legal system u Teen pregnancy u AIDS or related

34. Mental/Emotional Problems

35. Alcohol/Drug Problem

36. Runaways

37. Marital Status

38. Conclusions u Factors known to be associated with maltreatment seem to have greater impact among disabled children u Adverse outcomes of maltreatment are exacerbated by the disability status of the child

39. Medical Neglect of Children with Disabilities

40. Missed Appointment Parameters in Pediatric Specialty Clinics Patricia M. Sullivan, Ph.D. Creighton University

41. Questionnaire Study - Demographics u Total Sample: 1,429 u 1/1/98 - 3/31/00 u Show/No Shows: –903 No Shows –489 Shows u Clinics: –75.9% BTNRH –.8% Lincoln –23.3% UNMC u Gender: –52.6% Male –46.7% Female u Insurance: –9.3% Medicaid Regular –39.3% Medicaid HMO –3.9% No insurance –7.1% Private HMO –12.5% Private PPO –27.8% Unknown

42. Demographics (Continued) u Ethnicity –38.1% Caucasian –15.2% African American –3.4% Hispanic –0.8% Native American –0.4% Asian –3.7% Multi-racial –1.3% Other –37.1% Unknown u Maltreated: 14.3% (204) u Disabled:49.5%(707)

43. BTNRH Clinics Sampled u BTNRH: Pediatrics, ENT, Orthopedic & Asthma/ Allergy u Home Campus: Pediatrics, ENT, Orthopedic, Asthma/ Allergy & Psychiatric u Gold Circle: Pediatrics, ENT, Orthopedic & Asthma/ Allergy u 87th Avenue: Pediatrics u 87th Street: Pediatrics u West Maple: Pediatrics & Asthma/ Allergy u Bergan: Pediatrics, ENT & Asthma/ Allergy

44. UNMC Clinics Sampled u 42nd and Emile: Pediatrics, Pulmonary, GI, Nephrology, Neurology, Allergy & Dermatology u Baker Place: Pediatrics & Family Practitioner

45. Nebraska Urban Indian Health Coalition, Inc. Clinic Sampled u Lincoln: Pediatric, Family Practitioner & Nurse Practitioner

46. Insurance Type

47. Ethnicity

48. Disability

49. Abuse Rate by Show/No Show Status

50. SES

51. No Show Appointment Types

52. Top Ten Reasons Cited by No Shows for Missing Appointments u Forgot Appointment u Weather u Having to Take Time Off Work u Transportation u Schedule Conflict u Child is feeling better u Having to have child miss school u Getting a convenient appointment time/day u Illness in family u Caring for other children

53. Top Ten Reasons Cited by Shows for Missing Appointments u Schedule Conflict u Having to take time off work u Having child miss school u Weather u Forgot appointment u Getting a convenient appointment time/day u Waiting time after arriving for appointment u Child is feeling better u Caring for other children u Transportation

54. Related Factors u Type of Insurance u Disability Status u Ethnicity u Socioeconomic Status u Number of Children in the Home

55. Conclusions u Type of Insurance: The majority of no-shows were covered by some type of Medicaid. u Ethnicity: African American and Hispanic children missed the most appointments and Asian, Native American and Caucasian children missed the fewest. u SES: An inverse relationship exists between income and no-show status. u Risks: Disability and maltreatment are risks for not showing for medical appointments. u Reasons: Primary reasons for missed appointments are forgetting the appointment, weather, and necessity of taking time off work.