Using National Core Indicators Data to Understand the Experiences of Adults with Intellectual and Developmental Disabilities in Oklahoma

1. USING NATIONAL CORE INDICATORS
DATATO UNDERSTAND THE
EXPERIENCES OF ADULTS WITH
INTELLECTUALAND DEVELOPMENTAL
DISABILITIES IN OKLAHOMA

2. Intellectual and Developmental Disabilities
(IDD)
• Developmental disabilities, including intellectual disability,
are severe lifelong disabilities attributable to mental and/or
physical impairments.
• Intellectual disability (previous term: mental retardation)
• Originates before the age of 18
• Characterized by significant limitations in both:
• Intellectual functioning: includes reasoning, learning, and problem solving.
• Adaptive behavior: collection of conceptual, social, and practical skills that
have been learned and performed by people in their everyday lives.

3. Prevalence
• 13.87% of children aged 3-17 have
a developmental disability
• ≈ 8 million Americans of all ages
have an intellectual disability
• 1 in 10 families affected by an intellectual disability

4. Services for Oklahomans with IDD
• Developmental Disabilities Services (DDS): Division of
Oklahoma Department of Human Services (OKDHS)
• DDS serves persons ages 3 and up who have a primary
diagnosis of intellectual disability. Persons served may
also have other developmental disabilities (e.g., Autism
Spectrum Disorder, Cerebral Palsy, Down Syndrome) in
addition to intellectual disability.
• DDS’s mission is to help individuals with intellectual
disability and their families help themselves to lead safer,
healthier, more independent and productive lives.

5. DDS Waiver Services
Home and Community Based Services (HCBS) Waivers
• Community Waiver
• Provides services (e.g., residential, direct care staff, transportation)
for adults with ID to live in the community
• In Home Supports Waiver
• Provides non-residential services for children and adults to live in
the family home
• Waiting List
• 6992 children and adults
• Working applications received in 2005

6. Quality of Life for Persons with IDD
• NCI Indicators (e.g., rights, inclusion) are
rooted in Quality of Life domains that indicate
an individual’s well-being:
• Interpersonal relations
• Social inclusion
• Personal development
• Physical well-being
• Self-determination
• Material well-being
• Emotional well-being
• Rights
• Deinstitutionalization
• Normalization
• Inclusion: education, community, and social

7. What is National Core Indicators (NCI)?
• Voluntary, multi-state collaboration among:
• National Association of State Directors of DD Services (NASDDDS)
• Human Services Research Institute (HSRI)
• State Development Disability Services (DDS)
• Measures a standard set of performance and outcome
measures of public services
• Used to:
• Track a state’s performance over time
• Compare results across states
• Establish national benchmarks

8. 2013-14 NCI Data Collection
• 40 states (including Washington D.C.)
• 22 sub-state entities participated in NCI

9. NCI Adult Consumer Survey
• Sample of 400 individuals required from each participating
state
• In-person conversation with adults receiving DDS
services.
• Survey gathers information about individuals’ experiences
and opinions
• Keyed to important person-centered outcomes that
measure system-level indicators related to:
• Employment
• Choice
• Relationships
• Case management
• Inclusion
• Health (Physical & Mental)

10. Oklahoma 2013-2014 Sampling Strategy
• Adults (18 and over)
• Receiving residential services through
• Community Waiver (Non-Class Members)
• Homeward Bound Waiver (Members of Plaintiff Class in
Homeward Bound v. Hissom Memorial Center/Class
Members)
• No pre-screening procedures

11. Oklahoma 2013-2014 Sample
• Total Sample: N = 986
• n = 400 individuals randomly selected from those
receiving residential services
• n = 302 Non-Class Members
• n = 98 Class Members
• n = 586 Class Members not included in random sample

12. Adult Consumer Survey:
Data Collection Procedures
• Standardized, face-to-face surveys with the individuals
receiving services
• Background Information (Case file/Direct Care Staff)
• Section I (no proxies allowed)
• Section II (proxies allowed)
• Surveys are conducted in the individual’s home by trained
OSU undergraduate and graduate students

13. DEMOGRAPHICS
Profile of the 986 survey participants

14. Demographics
Females
40%
Males
60%
n = 986
American Indian
8.5%
Black
13.2%
Other
0.9%
White
78.6%
Gender Race

15. Age
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
18-29 yrs 30-39 yrs 40-49 yrs 50-59 yrs 60-69 yrs 70-79 yrs
11.2%
32.7%
35.1%
12.1%
1.2%
7.7 %

16. Severity of Intellectual Disability
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Mild Moderate Severe Profound Unspecified
Level of ID
21.2%
17.7%
26.3%
1.0%
33.7%

17. Communication & Mobility
Primary Means of Expression
n = 986
Verbal
66%
Gestures/Body
Language
16%
Other
14%
Communication
Device
1%
Sign
Language
3%
Mobility
Moves
Without Aids
65%
Moves With
Aids or Uses
Wheelchair
Independently
24%
Non-Ambulatory
11%

18. Type of Residence
1% 1%
13%
7%
15%
1%
5%
n = 985
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Private
ICF-ID
Group Home
1-3 People/
Agency Operated
Housing
Group Home
4-6 People
Group Home
7-15 People
Parent or
Relative Home
Foster Care or
Host Home
Oklahoma
National
Average
2%
7% 8%
82%
35%

19. Participation in Section 1:
Capturing the individual’s perspective
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Mild ID Moderate ID Severe ID Profound ID Unspecified
ID
Yes, completed
Section 1
No, did not complete
Section 1
Unwilling to
complete Section 1
0.6%
83.7%
9.1%
7.2%
44%
46.9%
30%
(n = 332) (n = 259)
(n = 10)
96.1%
3.3%
9.1% 6.9%
86.1%
6.9%
70%
(n = 209) (n = 175)

20. EMPLOYMENT
What participants do during the day

21. NCI Employment Categories
• Integrated Employment
• Paid job in a place where most other workers do not have disabilities
(e.g. competitive or supported employment, enclave, work crew)
• Unpaid Community Activity
• Unpaid activity in a place where most other workers do not have
disabilities (e.g. volunteer activities, skills training)
• Paid Facility-Based Work
• Paid job in a place where most people do have disabilities (e.g.
workshop, activity center)
• Unpaid Facility-Based Activity
• Unpaid activity in a place where most people do have disabilities (e.g.
day habilitation, seniors programs)

22. 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Integrated
Employment
Unpaid Community
Activity
Paid Facility-Based
Work
Unpaid Facility-
Based Activity
28.1%27.3%
15.2%
5.5%
Employment & Other Daily Activities

23. A closer look at employment
• Individuals in integrated employment:
• 13% also took part in unpaid community activity
• 9% also had a paid facility-based job
• 34% of individuals were not in integrated employment,
unpaid community activity, paid facility-based work, or
unpaid facility-based activity.
Hours and Wages
• Similar number of hours worked for integrated
employment (M = 22) and paid facility-based (M = 21).
• Wages significantly higher for integrated employment
(M = $5.57) than paid facility-based (M = $2.66).

24. INCLUSION & CHOICE
• The individual is integrated in and fully accesses and engages
in the greater community
• Facilitates individual choice of services and supports and who
provides them
• Optimizes autonomy and independence in making life choices

25. Life Decisions Scale
• The Life Decisions Scale refers to choice of residence,
work, day activity, staff, and roommates.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Involvement in Life Decisions
Oklahoma
Adjusted
Average
(n = 978)
NCI National
Average
68%
57%

26. Everyday Choices Scale
• The Everyday Choices Scale refers to choice of: daily
schedule, how to spend money, and free time activities.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Involvement in Everyday Choices
Oklahoma
Adjusted
Average
(n = 985)
NCI National
Average
86%84%

27. Community Inclusion
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Community Inclusion Scale
Oklahoma
Adjusted
Average
(n=968)
NCI National
Average
19.9%
13.3%
• The Community Inclusion Scale measures regular participation in
integrated activities in the community, including shopping, errands
and appointments, entertainment, eating at restaurants.

28. Community Inclusion
0
10
20
30
Shopping Errands Entertainment Eating Out
Oklahoma
NCI Average
4.95.7
Average
Number of
Times in a
Month
Type of Community Involvement
4.0 2.7 3.62.85.34.1

29. RIGHTS
• Ensures right to privacy, dignity, and respect and
freedom from coercion and restraint.

30. 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
No Sometimes, or
some staff
Yes, all staff
always
N/A - person does
not have staff
Don't know, no
response, unclear
response
Does your staff treat you with respect?
(n = 598)
3.2%
88.1%
2.2%4.3%
2.2%

31. 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
No Sometimes Yes Don't know,
no response,
unclear
response, or
people do not
come into
your house
Do people let you know
before coming into your
home? (n = 616)
5.0%
85.9%
2.6%
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
No Sometimes Yes Don't know,
no response,
unclear
response, or
people do not
come into
your bedroom
Do people let you know
before coming into your
bedroom? (n = 615)
6.2% 7.0%6.5%
73.8%
13.0%

32. 0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
No, would like
more privacy
Yes, has enough
privacy
N/A - lives alone Don't know,
unclear, no
response
Do you have enough privacy at your home?
(n = 612)
73.5%
9.3%
14.2%
2.9%

33. HEALTH & WELLNESS

34. Medical Visits
Total Sample Percentage
Primary Care Doctor 99%
Complete Physical Exam 98%
Dental Exam 86%
Eye Exam 69%
Hearing Exam (last 5yrs) 46%
Sample over 50:
• Colorectal Cancer Screen 18%
Females
• Pap test (last 3yrs) 59%
• Females over 40: Mammogram (last 2yrs) 70%

35. Overall Physical Health
Very Good
46%
Fairly Good
36%
Excellent
14%
Poor
4%

36. High Risk Factors
BMI
Normal
Weight
34%
Chew or Smoke Tobacco
No
91%
Yes
9%
Underweight
4%
Overweight
31%
Obese
31%

37. Mental Health Diagnosis and Medication
This graph presents the percentage of participants who have mental health diagnoses, in addition to an
intellectual disability. The graph only represents the number of “Yes” responses for each mental health
diagnosis, as well as the percentage of participants who are taking psychotropic medications. Some
participants fall into multiple categories.
0%
10%
20%
30%
40%
50%
60%
70%
80%
90%
100%
Mood Disorder Anxiety Disorder Behavioral
Challenges
Psychotic Disorder
OK Mental
Health Dx
OK Medicated
NCI Mental
Health Dx
NCI
Medicated
44%
56%
38%
33%
23%
25%
31%
27%
12%
17%
27%
43%
37 %
30%29%
14%

38. Future Directions
• Changes made to 2014-15 data collection
• Self-Awareness
• Behavior Plan
• Knowledge of Disability
• Inclusion of all individuals transitioned out of NORCE/SORC
• Planned changes for 2015-2016 data collection
• Gather more specific data to answer current questions
• Changes to sampling strategy
• Employment
• Mental Health Diagnosis & Medications
• Self-Determination Measure for Individuals
• Family Quality of Life Measure

39. OSU NCI Team

40. Questions

41. For more information, contact:
Jennifer L. Jones, PhD
Assistant Professor
jennifer.jones@okstate.edu
(405)744-8348
Kami L. Gallus, PhD, LMFT
Associate Professor
kami.gallus@okstate.edu
(405)744-8351
NCI website:
www.nationalcoreindicators.org
Genny Gordon
Director of Quality Assurance
genny.gordon@okdhs.org
(405) 521-4968