1. …but I CAN do something! Facts and perspectives on the epidemic of abuse against people with disabilities

2. Nyla McCarthy Director, Catalysts for Change Institute for Ethical Leadership Email: catalystsforchange@q.com

3. Disclosure I am a person with disabilities I grew up in poverty in Eugene, Oregon I was placed in Special Education in 1968 I am a sexual assault survivor I am a physical abuse survivor I am like half the people in this room

4. How many of you? Are prosecutors…or from Prosecutor’s office? Are local law enforcement, sworn officers? Staff? Are APS managers…specialists….other staff? Are case managers…personal agents? Are from Domestic Violence….victim’s advocates? Are provider agency administrators…managers…other staff?

5. How many of you… Are legislators or involved with local government? Provide services, including protective, to individuals with psychiatric disabilities? Provide services, including protective, to individuals with intellectual/developmental disabilities? Are State central office staff? Other?

6. What do we mean by ID/DD? (a few words about acronyms!)

7. Intellectual disability A neurological condition, diagnosed before the age of 18, which substantially limits the daily adaptive functioning of an individual and is expected to continue indefinitely. Historically, an IQ level of 70 or below used for determination. Examples: Down Syndrome, Fragile X Syndrome, Prader-Willi Syndrome, Angelman Syndrome

8. From “Faces with Fragile X” campaign

9. Down Syndrome in modern life

10. Some images of people living with Prader Willi

11. Individuals with Angelman’s Syndrome e

12. Developmental disability A neurological condition, originating in the brain, diagnosed before the age of 22, severely impacting the daily adaptive functioning of an individual and expected to continue indefinitely Examples: Cerebral Palsy, Autism Spectrum Disorder, Sensory disabilities (blind, deaf, etc.)

13. Two women shattering the stereotypes associated with Cerebral Palsy

14. On the Spectrum

15. Sensory disability Adaptations across the world are used frequently by people who are blind

16. Sensory disability Individuals who are deaf still have a LOT to say

17. Traumatic Brain Injury (TBI) Often also known as Acquired Brain Syndrome, Traumatic Head Injury

18. Let’s take a look at some sobering statistics (excerpted from the U.S. Department of Justice 2012 National Crime Victimization Survey)

19. In the United States Annually, approximately 15 women out of every 1000 experience violent crime Annually, approximately 16 out of every 1000 men experience violent crime While approximately 26 women with disabilities out of every 1000 will experience violent crime While 23 men with disabilities out of every 1000 will experience violent crime

20. Rape/sexual assault, robbery and aggravated assault Account for more than 50% of the violence against people with disabilities

21. Moving beyond crime, abuse of all types is reported every year involving 5 million vulnerable adults 2 million elders 1 million children

22. This means that adults with disabilities are abused almost twice as often as children and elders combined

23. 2012 National Survey on Abuse Against People with Disabilities Findings First ever of its kind! Spectrum Institute National Disability and Abuse Project (personal disclosure)

24. 7289 responses! 2/3 of all people with intellectual/developmental disabilities have been victims of abuse 8 out of 10 of these people were verbally/emotionally abused More than half were physically abused Over a third were sexually abused more than once 9 out of 10 who were abused were abused multiple times in multiple ways Only one third reported it

25. Reasons for Not Reporting 58% believed that nothing would happen 38% had been threatened or were afraid 33% did not know how or where to report

26. Nearly half did not recognize abuse when it occurred because it was so common in their lives and environment

27. What Happened to Those Who Did Report? Nothing, for nearly 53%, who said that their reports were screened out at the local or state level Arrests of the alleged perpetrators happened in less than a tenth of the reports rising to criminal level Only half of these were successfully prosecuted

28. Only one third of victims receive any kind of therapy for their abuse experiences

29. More than 70% of the abuse against individuals with intellectual/developmental disabilities is perpetrated by someone known to the victim!

30. Let’s Bring it Home

31. 11,840 ELDER ABUSE REPORTS RECEIVED IN 2012

32. This is what 11,840 people (total number of reports) look like

33. 78% of abusers were known to the victim: 9235 Most often the abusers were the spouse, child or other relative

34. This is what 9000 people (number known to victim) looks like

35. 68% were female: 8051 32% were male: 3789

36. 8730 SUBSTANTIATED

37. That is a 77 % substantiation rate

38. This is what 8372 people, the total number of substantiations look like

39. The national average of adult protective services cases substantiated is not quite 40%

40. Congratulations? Illinois

41. TYPES OF ELDER ABUSE REPORTED 6,870 Financial Exploitation 5,308 Emotional Abuse 4,449 Passive Neglect 2,323Physical Abuse 1,353 Willful Deprivation 795 Confinement 420 Sexual Abuse Victims generally experience more than one type of abuse, e.g., financial exploitation is the type of abuse reported most frequently (58% of reports), and is highly associated with emotional abuse, reported in 45% of cases.

42. www.state.il.us/aging//

43. In Oregon… More than 18,000 individuals receive developmental/intellectual disability services yet only 1538 abuse reports (adults and children) were assigned for investigation--though the national average tells us to expect 9435—12,450 775 of those investigated were substantiated

44. 775 people representing the number of Oregon substantiated cases

45. In Oregon, 253 were referred to law enforcement as suspected crimes (approximately 4625 based on national average) Law enforcement chose to become involved in only 33% of those which were referred to them Approximately one third of those which law enforcement investigated were successfully prosecuted, with sexual assault cases accounting for most of those

46. This is what 11 people, or the number of perpetrators of abuse against individuals with intellectual/developmental disabilities successfully prosecuted in Oregon in 2012 looks like

47. Some things to consider Illinois is the 24th largest state in size, but it has the 5th largest population in the US It also has one of the slowest growing populations in the nation. Chicago is the 3 rd largest city in the country.

48. Something else to Consider Approximately 12,897,625 people live in Illinois Approximately 380,000 children with intellectual/developmental disabilities are born each year (3% of total population) These children will age into the seniors/elders service delivery system

49. Nationally, a tsunami of adults with I/DD are aging into the senior service system each year, creating a concurrent rising need for the provision of protective services

50. Why does this epidemic of abuse exist?

51. “The biggest disability is negative attitudes toward disabilities” People First Devaluing Distancing Demeaning Denying

52. Ignorance and lack of familiarity with individuals who have intellectual and developmental disabilities creates a lack of access to equal justice

53. Myths (garbage) vs. Facts Which Lead to Cultures of Abuse

54. Your turn Small Group discussion and brainstorm 15 minutes

55. 1) Myths and Stereotypes heard about people with intellectual or developmental disabilities 2) Facts which might lead to the creation of and/or continuation of the culture of abuse

56. Fact or Garbage? Abusers often target individuals with intellectual/developmental disabilities as “easy prey” because they know the system often will not see them as credible reporters

57. Fact or Garbage? People with Autism are super sensitive to stimulus which causes them to act out in violent ways

58. Fact or Garbage? Non-verbal people are not reliable witnesses because they cannot communicate with others

59. Fact or Garbage? Very few individuals with intellectual/developmental disabilities are taught about their legal rights

60. Fact or Garbage? Someone who is non-responsive and/or paralyzed does not feel pain as we know it

61. Fact or Garbage? People with intellectual/developmental disabilities don’t understand the concept of sexual orientation so are not likely to know what their preferences might be

62. Fact or Garbage? Limited social contacts lead to loneliness which exacerbates risk for all types of abuse

63. Fact or Garbage? No one wants to voluntarily have sex with someone with a severe cognitive disability, especially if they also have physical disabilities

64. Fact or Garbage? People with intellectual/disabilities are at higher risk of abuse because the current system perpetuates long term dependency on others

65. Fact or Garbage? Parents and family members of people with intellectual and/or developmental disabilities are saints to put up with what they have to put up with

66. Fact or Garbage? Many individuals who experience physical disabilities have communication challenges which make it difficult for them to share what is going on

67. Fact or Garbage? People with intellectual disabilities aren’t really interested in sex, they just want to have a boy/girlfriend

68. Fact or Garbage? The abuse reporting system is not easily accessible for the average person and a majority of abuse reports are screened out by people who may or may not have a thorough knowledge of and a consistent application of the abuse rules

69. What did I miss? …the things you all came up with that are not in these slides

70. Questions? Concerns? Closing thoughts?