Who are adults with IDD requiring behavioral supports? Julie - - PowerPoint PPT Presentation

Who are adults with IDD requiring behavioral supports?

Julie Bershadsky & Stephanie Giordano

Human 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
• f 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), 2011-2012

data 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

8 National Core Indicators (NCI)

FINDINGS

National Core Indicators (NCI)

Behavioral supports

10 National 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 support needed Don't know/Missing

Behavioral supports

11 National 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%

12 National Core Indicators (NCI)

Characteristics: Gender

• Females slightly less likely to require supports

13 National 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

14 National 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 - None Level of supports - Some Level of supports - Extensive

Characteristics : Level of ID

• Those with no ID or milder ID label less

likely to require supports

15 National 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

16 National 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 Down syndrome Down syndrome 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

17 National 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/finger spelling Communication aid/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

18 National 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

19 National 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-based group residence

• Ind. Home/apt

Parents/relatives Foster care/host home

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

Characteristics : Staffing

• Those with 24-hr staffing more likely to

require supports

20 National 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%

21 National 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%

22 National 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%

23 National 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

24 National 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……………….

25 National Core Indicators (NCI)

Psychotropic medication use among adults with IDD

Julie Bershadsky & Stephanie Giordano

Human 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

27 National Core Indicators (NCI)

Takes medications to address:

28 NCI 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.

29 National Core Indicators (NCI)

Residence type and medications

30 National 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

31 National 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

32 National 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

33 National 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
• bese persists after controlling for other

personal characteristics (mobility, residence, ASD, CP, Down syndrome, age)

34 National 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

36 National Core Indicators (NCI)