who are adults with idd requiring behavioral supports?€¦ · nci powerpoint template wip 28 53%...

Who are adults with IDD requiring behavioral supports?

Julie Bershadsky & Stephanie GiordanoHuman Services Research Institute

NADD, 10/24/2013

WHAT IS NATIONAL CORE INDICATORS (NCI)?

• Multi-state collaboration of state DD agencies

• Measures performance of public systems for people with intellectual and developmental disabilities

• Assesses performance in several areas, including: employment, community inclusion, choice, rights, and health and safety

• Launched in 1997 in 13 participating states

• Supported by participating states

• NASDDDS – HSRI Collaboration

National Core Indicators (NCI)

WHAT IS NATIONAL CORE INDICATORS (NCI)?

• Currently 35 states, the District of Columbia and 25 sub-state regions (including all CA Regional Centers)

National Core Indicators (NCI)

NCI State Participation 2012-13

WHAT IS NCI?• Adult Consumer Survey

• Family Survey Adult Family Survey (person lives at home; 18 and older)

Family Guardian Survey (person lives out-of-home; 18 and older)

Children Family Survey (child lives at home; under 18 years old)

• Provider Survey Staff Stability

• System Data Mortality

Incidents

National Core Indicators (NCI)

WHAT IS NCI?Adult Consumer Survey

• Standardized, face-to-face interview with a sample of individuals receiving services Background Information

Section I (no proxies allowed)

Section II (proxies allowed)

• No pre-screening procedures

• Conducted with adults only (18 and over) receiving at least one service in addition to case management

• Section I and Section II together take 50 minutes (on average)

National Core Indicators (NCI)

Methods, Measures and Sample:Data Source

• Adult Consumer Survey (ACS), 2011-2012data collection cycle

• 19 states, one regional council

• Total N: 11,224 individuals

National Core Indicators (NCI)

Methods, Measures and Sample:Behavioral supports

• Source: three items from Background Section Does the person need support to manage:

• Self-injurious behavior (Refers to attempts to cause harm to one’s own body, for example, by hitting or biting self, banging head, scratching or puncturing skin, ingesting inedible substances, or attempting suicide)

• Disruptive behavior (Refers to behavior that interferes with the activities of others, for example, by laughing or crying without apparent reason, yelling or screaming, cursing, or threatening violence)

• Destructive behavior (Refers broadly to externally-directed, defiant behavior, for example, taking other people’s property, property destruction, stealing, or assaults and injuries to others)

National Core Indicators (NCI)

Methods, Measures and Sample:Behavioral supports

Response categories:

• No support needed

• Some support needed; requires only occasional assistance or monitoring

• Extensive support needed; frequent or severe enough to require regular assistance

• Don’t know

8National Core Indicators (NCI)

FINDINGS

National Core Indicators (NCI)

Behavioral supports

10National Core Indicators (NCI)

74%

17%

5% 4%

Self-injury behavior

58%29%

8%4%

Disruptive behavior

72%

17%

6%

4% Destructive behavior

No support needed

Some support needed

Extensive supportneededDon't know/Missing

Behavioral supports

11National Core Indicators (NCI)

• Overlap:

63% of people who need supports for self-injurious behavior also need them for destructive behavior; 47% of them also need supports for disruptive behavior

91% of people who need supports for destructive behavior also need them for disruptive behavior

Behavioral supports

• Any support needed: 45%

• Level of behavioral support needed:

Some: 73%

Extensive: 27%

12National Core Indicators (NCI)

Characteristics: Gender

• Females slightly less likely to require supports

13National Core Indicators (NCI)

53%58%

34% 32%

13% 10%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Male Female

Level of supports -None

Level of supports -Some

Level of supports -Extensive

Characteristics : Guardianship• Those independent of guardianship less

likely to need behavioral supports

14National Core Indicators (NCI)

62%

50% 48%

29%33%

37%

9%16% 15%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Independent Limited guardianship Full guardianship

Level of supports -NoneLevel of supports -SomeLevel of supports -Extensive

Characteristics : Level of ID

• Those with no ID or milder ID label less likely to require supports

15National Core Indicators (NCI)

64% 63%

54%

44% 43%

27% 29%34% 39%

38%

9% 8%12%

17% 19%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

No ID Mild ID Moderate ID Severe ID Profound ID

Level of supports- None

Level of supports- Some

Level of supports- Extensive

Characteristics : Diagnoses

16National Core Indicators (NCI)

65%

35%

58%

32%

53%

68%

54%

62%

27%

45%

32%

43%

34%

26%

34%

29%

8%

20%

10%

26%

13%

6%

13%9%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

No MI MI No ASD ASD No Downsyndrome

Downsyndrome

No CP CP

Level of supports - None Level of supports - Some Level of supports - Extensive

Characteristics : Expression• Those with spoken expression less likely to

require supports

17National Core Indicators (NCI)

58%

45%42%

58%

32%37%

43%

25%

10%

18%15% 17%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Spoken Gestures/body language Sign language/fingerspelling

Communicationaid/device

Level of supports - None Level of supports - Some Level of supports - Extensive

Characteristics : Mobility• Those who are self-mobile more likely to

require supports

18National Core Indicators (NCI)

54%58%

63%

33% 33%27%

13% 10% 10%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

W/o aids W/ aids Non-ambulatory

Level of supports - None Level of supports - Some Level of supports - Extensive

Characteristics : Residence• Those living independently or with family

less likely to require supports

19National Core Indicators (NCI)

39% 40%

66%71%

50%

40% 42%

26%23%

38%

20% 18%

8% 6%

12%

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

Institution Community-basedgroup residence

Ind. Home/apt Parents/relatives Foster care/hosthome

Level of supports - None Level of supports - Some Level of supports - Extensive

Characteristics : Staffing• Those with 24-hr staffing more likely to

require supports

20National Core Indicators (NCI)

42%

63%

71%76%

41%

28%24% 22%

17%

9%5%

2%0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

24-hr Daily on-site Less than daily As needed

Level of supports - None Level of supports - Some Level of supports - Extensive

Differences between those requiring supports and not

• Those requiring extensive supports are younger:

None – avg. 43.8 yrs, Some – 44.2 yrs, Extensive – 41.0 yrs

• Less likely to use spoken communication:

None – 80%, Some – 73%, Extensive – 65%

• More likely to use gestures/body language:

None – 16%, Some – 22%, Extensive – 30%

• More likely to be self-mobile:

None – 74%, Some – 78%, Extensive – 81%

21National Core Indicators (NCI)

Differences between those requiring supports and not

• More likely to live in group residence: None – 28%, Some – 49%, Extensive – 58%

• Less likely to live independently: None – 15%, Some – 10%, Extensive – 8%

• Less likely to live with relatives/parents: None – 44%, Some – 24%, Extensive – 58%

• More likely to have 24-hr staffing: None – 41%, Some – 68%, Extensive – 80%

22National Core Indicators (NCI)

Differences between those requiring supports and not: Selected outcomes

• Those requiring extensive supports less likely to have friends: None – 72%, Some – 69%, Extensive – 63%

• Less likely to be able to see friends: None – 80%, Some – 78%, Extensive – 73%

• Less likely to be able to see family: None – 82%, Some – 77%, Extensive – 73%

• More likely to be lonely: None – 38%, Some – 41%, Extensive – 47%

• Less likely to participate in self-advocacy meetings: None – 32%, Some – 31%, Extensive – 25%

23National Core Indicators (NCI)

Differences between those requiring supports and not: Medications

• 68% of those requiring extensive supports take meds for behavior problems and 64% for mood disorders

24National Core Indicators (NCI)

0%

10%

20%

30%

40%

50%

60%

70%

80%

90%

100%

None Some Extenstive

22%

54%

64%

17%

41%

52%

7%

43%

68%

9%

26%

42%

33%

74%

87%

For mood disorders For anxiety

For behavior problems For psychotic disorders

Any

Speaking of medications……………….

25National Core Indicators (NCI)

Psychotropic medication use among adults with IDD

Julie Bershadsky & Stephanie GiordanoHuman Services Research Institute

NADD, 10/24/2013

Measures and Data Source

Adult Consumer Survey

Background Section

“Does the person take medications to address”:

Mood disorder

Anxiety

Psychotic disorder

Behavior

27National Core Indicators (NCI)

Takes medications to address:

28NCI PowerPoint Template WIP

53% of people with IDD receiving services are taking medications for at least 1 of these conditions: mood disorders anxiety behavior challenges psychotic disorders

Most common condition medications are taken for is mood disorders (38%).

14% of those taking at least one medication are taking them for all 4 conditions.

39%

29%

18%14%

Takes medications for….

1 condition 2 conditions 3 conditions 4 conditions

Takes medications to address:

88% of those with a co-occurring psychiatric diagnosis (MI) were taking medications for mood, anxiety or psychotic disorders.

However, 30% of people without a psychiatric diagnosis (MI) were also taking medications for mood, anxiety or psychotic disorders.

29National Core Indicators (NCI)

Residence type and medications

30National Core Indicators (NCI)

0%

5%

10%

15%

20%

25%

30%

35%

40%

45%

50%

6%

35%

6%

18%

22%

7%

1%

5%

0%

6%

19%

3%

17%

47%

5%

1%3%

0%

At least one med

No meds

Other disabilities

31National Core Indicators (NCI)

0%

5%

10%

15%

20%

25%

30%

ASD CP Seizure

disorder/

neurological problem

Physical

disability

Alzheimer's/

dementia

Down

syndrome

13%

10%

23%

8%

2%

5%

7%

20%

25%

12%

1%

13%

At least one med

No meds

Other differences

• Those who take at least one medication are also:

Slightly older

Slightly less racially diverse

Less likely to be diagnosed with profound level of ID

32National Core Indicators (NCI)

Health differences• Those who take at least one medication are:

Less likely to be in very good or excellent health

More likely to use tobacco products

More likely to be obese / less likely to be of normal weight

33National Core Indicators (NCI)

0%

5%

10%

15%

20%

25%

30%

35%

40%

Underweight Normal Overweight Obese

4%

29% 30%

37%

8%

35%

28%29%

At least one med

No meds

Health differences

• Higher likelihood of being overweight and obese persists after controlling for other personal characteristics (mobility, residence, ASD, CP, Down syndrome, age)

34National Core Indicators (NCI)

Contacts

Julie Bershadsky: jbershadsky@hsri.org

Stephanie Giordano: sgiordano@hsri.org

• NCI website: www.nationalcoreindicators.org

• HSRI website: www.HSRI.org

• NASDDDS website: www.NASDDDS.org

National Core Indicators (NCI)

Questions

36National Core Indicators (NCI)