Not Silent: Demographics, Quality-of-Life Outcomes and - - PowerPoint PPT Presentation
Not Silent: Demographics, Quality-of-Life Outcomes and Circumstances of Nonverbal Adults with ID/DD June 24, 2014, AAIDD Annual Meeting Julie Bershadsky, HSRI Dorothy Hiersteiner, HSRI Agenda Agenda Data source Methods, Measures
June 24, 2014, AAIDD Annual Meeting Julie Bershadsky, HSRI Dorothy Hiersteiner, HSRI
Agenda
National Core Indicators (NCI)
intellectual and developmental disabilities
employment, community inclusion, choice, rights, and health and safety
National Core Indicators (NCI)
HI WA AZ OK KY AL NC PA MA TX AR GA NM NJ MO NH OH * IL LA NY Wash DC FL CA* S D OR MN UT CO KS MS TN SC WI MI IN VA D E MD
State contract awarded in 2013-14 through AIDD funding
CA*- Includes 21 Regional Centers OH*- Also includes the Mid-East Ohio Regional Council
39 states, the District of Columbia and 22 sub-state regions
ME
whether they are working
they receive (e.g., with case managers, ability to make choices, self-direction)
involvement, safety
National Core Indicators (NCI)
In-person conversation with a sample of adults receiving services to gather information about their experiences Keyed to important person-centered outcomes that measure system-level indicators related to: employment, choice, relationships, case management, inclusion, health, etc.
Mail surveys – separate sample from Adult Consumer Survey
National Core Indicators (NCI)
National Core Indicators (NCI)
Disability
NASDDDS and state participating agencies
younger adults with physical and other disabilities on waivers
National Core Indicators (NCI)
winter 2014
source, residence, program
comparisons
National Core Indicators (NCI)
receive them
system responsiveness
National Core Indicators (NCI)
National Core Indicators (NCI)
What Do NCI Data Show Us About Respondents Who Communicate Verbally & Those Who Communicate Nonverbally? NCI 2012-13
National Core Indicators (NCI)
deficits in their ability to communicate.
individuals who communicate nonverbally
National Core Indicators (NCI)
sample of individuals receiving services
anyone out of the sample.
receiving at least one service in addition to case management
(on average)
National Core Indicators (NCI)
safety, respect & privacy, relationships
National Core Indicators (NCI)
(AL, AR, CT, FL, GA, HI, IL, IN, KY, LA, MD,
MO, MS, NC, NH, NJ, NY, OH, OR, PA, SC, TX, UT, VA, WI and the Mid-East Ohio Regional Council)
National Core Indicators (NCI)
National Core Indicators (NCI)
26% 84% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% Nonverbal Verbal
National Core Indicators (NCI)
26.2% of nonverbal had valid responses to Section I 84.3% of verbal had valid responses to Section I Percentage of Respondents with Valid Responses to Section I
National Core Indicators (NCI)
Primary means
communication Percent of total Communicate verbally 76 % Communicate nonverbally 24% Total (N=12,949) 100 %
84% 6% 3% 6%
Of those who communicate nonverbally……
Gestures/Body language Sign language/Finger spelling Communication aid/Device Other National Core Indicators (NCI)
those who communicate nonverbally differ significantly in various demographic characteristics.
National Core Indicators (NCI)
5% 6% 6% 46% 15% 35% 32% 10% 42% 3% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Nonverbal Verbal
Level of Disability
n/a- No ID label Mild ID Moderate ID Severe ID Profound ID
National Core Indicators (NCI)
13% 11% 19% 5% 4% 26% 15% 14% 11% 7% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Mood Disorder Anxiety Disorder Behavior Challenges Psychotic Disorder Other Mental Illness/Psych. Diagnosis
Other Diagnoses
Nonverbal Verbal
National Core Indicators (NCI)
19% 26% 38% 11% 8% 7% 10% 11% 19% 5% 3% 10% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Autism Spectrum Disorder Cerebral Palsy Seizure Disorder/
Limited or No Vision Hearing Loss: Severe/Profound Down Syndrome
Other Diagnoses
Nonverbal Verbal
National Core Indicators (NCI)
55% 18% 28% 83% 14% 3% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Moves self around environment without aids Moves self around environment with aids or uses wheelchair independently Non-ambulatory, always needs assistance
Mobility
Nonverbal Verbal
National Core Indicators (NCI)
63% 19% 8% 2% 9% 47% 15% 14% 4% 19%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
24-hour on-site support or supervision Daily on-site support Scheduled, less frequent than daily support As needed visitation and phone contact None of the above
Amount of Staff Support Needed
Nonverbal Verbal
National Core Indicators (NCI)
National Core Indicators (NCI)
8% 41% 45% 6% 14% 45% 37% 4% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Excellent Very Good Fairly Good Poor Reported Health Status Non-Verbal Verbal
2% 7% 39% 6% 34% 11% 4% 6% 38% 17% 33% 2% 0% 20% 40% 60% 80% 100% Other Foster care/host home Parents/relatives home Independent home/apt Community-based residence Institution
Type of Residence
Verbal Nonverbal
National Core Indicators (NCI)
2% 19% 12% 50% 18% 24% 31% 41%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Paid Community Job Unpaid Community Activity Paid Facility-Based Job Unpaid Facility- Based Activity
Participated in Work/Day Activity in Past Two Weeks
Nonverbal Verbal
National Core Indicators (NCI)
those who communicate nonverbally also differ significantly in various outcomes
National Core Indicators (NCI)
family or staff or best friends
specific activities in the community in the past month
without permission and to not be able to use phone/or internet without restrictions
National Core Indicators (NCI)
in choosing:
National Core Indicators (NCI)
National Core Indicators (NCI)
been influenced by these priorities
National Core Indicators (NCI)
their everyday lives, including: housing, roommates, daily routines, jobs, support staff or providers, what to spend money on, and social activities.
Section II of ACS. Proxy respondents are allowed.
National Core Indicators (NCI)
following choices:
National Core Indicators (NCI)
National Core Indicators (NCI)
21% 19% 52% 62% 59% 49% 65% 88%
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% Choosing Home Choosing roommates Choosing staff Choosing schedule
Respondents had at least some input in....
Non-verbal Verbal
National Core Indicators (NCI)
77% 33% 65% 51% 95% 65% 94% 62% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Choosing what to do in freetime Choosing day activity Choosing what to buy Choosing case manager
Respondents had at least some input in....
Non-verbal Verbal
Had At Least Some Input in Choosing Home: Nonverbal
2% 21% 53% 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Average: 21.4%
National Core Indicators (NCI)
expression (verbal vs. nonverbal)
which individuals who communicate verbally and nonverbally differ.
National Core Indicators (NCI)
ALL of the dependent choice variables.
exercise choice.
National Core Indicators (NCI)
access the choices and opinions of individuals who communicate nonverbally
NCI Adult Consumer Survey
advocates to forge future policies and supports for individuals who do not use words to speak.
National Core Indicators (NCI)
choice
National Core Indicators (NCI)
What Do NCI Data Reveal About Individuals With Intellectual and Developmental Disabilities Who Need Behavior Support?
June 24, 2014, AAIDD Annual Meeting Stephanie Giordano, HSRI Cheryl Sartori, HSRI
National Core Indicators (NCI)
demonstrate challenging behaviors
National Core Indicators (NCI)
differ significantly from those who do not use such supports in various demographic characteristics.
National Core Indicators (NCI)
support
least some behavior support*:
behavior
behavior
behavior
*Note that these categories are not mutually exclusive and therefore exceed 100% when combined.
57% 43%
Support Needed for Behavior Challenges
No Support Needed Some or Extensive Support Needed National Core Indicators (NCI)
55% 45% 61% 39% 0% 20% 40% 60% 80% 100% Male Female
Gender
No Support Needed Some Support Needed
behavior supports compared to those who did not were:
National Core Indicators (NCI)
behavior supports were diagnosed with an intellectual disability than those who did not need support:
found by level of disability
7% 14% 17% 29% 29% 4% 8% 9% 11% 27% 37% 7% 0% 20% 40% 60% 80% 100% Unspecified/ Unknown ID Profound ID Severe ID Moderate ID Mild ID No ID
Level of ID
No Support Needed Some or Extensive Support Needed
National Core Indicators (NCI)
14% 9% 3% 5% 3% 33% 21% 31% 15% 10% 0% 20% 40% 60% 80% 100%
Mental Illness Diagnosis
No Support Needed Some or Extensive Support Needed 81% 28% 56% 49% 47% 37% 64% 0% 20% 40% 60% 80% 100% Prader-Willi Syndrome Down Syndrome Alzheimer's or Other Dementia Limited or No Vision Seizure Disorder/ Neurological Problem Cerebral Palsy Autism Spectrum Disorder
Other Diagnoses
Respondents Who Needed Some or Extensive Behavior Supports National Core Indicators (NCI)
significantly from those who do not use such supports in various health, medication, and wellness outcomes.
National Core Indicators (NCI)
87% 43% 54% 53% 73% 33% 43% 56% 92% 50% 60% 62% 77% 36% 47% 63% 0% 20% 40% 60% 80% 100% Annual Physical Exam (past year) Dentist Visit
(past 6 months) Eye Exam (past year) Hearing Test (past 5 years) Flu Vaccination (past year) Pneumonia Vaccination (ever) Pap Test (women, past year) Mammogram (women, 40 and over)
Health Screenings
No Support Needed Some or Extensive Support Needed National Core Indicators (NCI)
34% 77% 0% 20% 40% 60% 80% 100% No Support Needed Some or Extensive Support Needed
Takes at Least One Medication for: mood disorder, anxiety, behavior
challenges, psychotic disorder
28% 48% 44% 55% 8% 7% 17% 21% 0% 20% 40% 60% 80% 100% Psychotic Disorders Behavior Challenges Anxiety Mood Disorder
Reason for Medication
No Support Needed Some or Extensive Support Needed
National Core Indicators (NCI)
a significantly higher rate than individuals who do not require such supports.
National Core Indicators (NCI)
6% 8% 8% 11% 0% 20% 40% 60% 80% 100% All Ages Age 50 and above
Chews or Smokes Tobacco
No support needed Some or extensive behavior support needed National Core Indicators (NCI)
significantly from those who do not use such supports in where they live and their satisfaction with their living situation as well as what they do during the day.
National Core Indicators (NCI)
3% 21% 4% 17% 47% 5% 1% 2% 6% 39% 5% 11% 36% 9% 1% 3% 0% 20% 40% 60% 80% 100%
Type of Residence
No support needed Some or extensive behavior support needed National Core Indicators (NCI)
92% 89% 23% 72% 86% 86% 30% 62% 0% 20% 40% 60% 80% 100%
Likes Home Likes Neighborhood Wants to Live Somewhere Else Talks With Neighbors
Satisfaction With Home
No support needed Some or extensive behavior support needed National Core Indicators (NCI)
need behavior support were:
paid community or facility-based job
in unpaid community or facility-based activities
17% 20% 28% 41% 11% 56% 25% 47% 0% 20% 40% 60% 80% 100% Paid Community Job Unpaid Community Activity Paid Facility- Based Job Unpaid Facility-Based Activity
Employment and Day Activity
No Support Needed Some or Extensive Support Needed
National Core Indicators (NCI)
significantly from those who do not use such supports with regard to rights, respect, and safety.
National Core Indicators (NCI)
88% 75% 87% 89% 93% 84% 91% 93% 0% 20% 40% 60% 80% 100% Can Use Phone and Internet Without Restriction Can Be Alone at Home With Visitors People Ask Before Entering Home Has Enough Privacy
Rights and Respect & Safety
No Support Needed Some or Extensive Support Needed
require behavior support reported lower rates of:
with visitors
entering their home
and internet
National Core Indicators (NCI)
15% 13% 11% 22% 18% 15% 0% 20% 40% 60% 80% 100% Scared at Home Scared in Neighborhood Scared at Work or Day Activity
Safety
No Support Needed Some or Extensive Support Needed
behavior support were significantly more likely to feel scared in their home, neighborhood, and/or day program than those who do not require support.
National Core Indicators (NCI)
showed significantly less autonomy in everyday choices and life decisions and reported fewer close relationships.
National Core Indicators (NCI)
55% 49% 61% 45% 35% 54% 0% 20% 40% 60% 80% 100% Chose Home Chose Roommates Chose Day Activity
Life Decisions
No Support Needed Some or Extensive Support Needed 59% 57% 85% 90% 79% 64% 61% 88% 92% 84% 0% 20% 40% 60% 80% 100% Chose Staff Chose Case Manager Chooses What to Buy Chooses How to Spend Free Time Chooses Daily Schedule
Everyday Choices
No Support Needed Some or Extensive Support Needed
National Core Indicators (NCI)
National Core Indicators (NCI)
79% 85% 39% 73% 82% 45% 0% 20% 40% 60% 80% 100% Has friends Can go on dates without restrictions Ever feels lonely
Relationships
No Support Needed Some or Extensive Support Needed
significantly less likely to report that the staff who worked with them were nice and that their staff have the necessary training to help them.
National Core Indicators (NCI)
95% 93% 91% 91% 0% 20% 40% 60% 80% 100% Staff are Nice Staff Have Needed Training
Staff
No Support Needed Some or Extensive Support Needed
National Core Indicators (NCI)
to partake in a religious or spiritual practice in the past month and go on vacation in the past year. However respondents who require behavior support were more likely to go out for exercise in the past month.
National Core Indicators (NCI)
National Core Indicators (NCI)
52% 56% 47% 44% 60% 44% 0% 20% 40% 60% 80% 100% Religious service or spiritual practice Exercise Vacation in past year
Community Integration
No Support Needed Some or Extensive Support Needed
demographics and valued outcomes:
policies and supports for individuals who need behavior supports.
National Core Indicators (NCI)
National Core Indicators (NCI)
National Core Indicators (NCI)