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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: [email protected]
Stephanie Giordano: [email protected]
• NCI website: www.nationalcoreindicators.org
• HSRI website: www.HSRI.org
• NASDDDS website: www.NASDDDS.org
National Core Indicators (NCI)
Questions
36National Core Indicators (NCI)