Colorado Gap Analysis Survey presentation by Cordelia Robinson Rosenberg, PhD, RN, Director, and Angela Rachubinski, PhD, JFK Partners.

1. Colorado Dual Diagnosis Gap Analysis
Surveys
Cordelia Robinson, PhD, RN
Angela Rachubinski, PhD
Zia Choudhury, Medical Student
Erin Hickey, Medical Student
Sterling Mclaren, Medical Student
Shamita Punjabi, Medical Student
Cordelia.Rosenberg@ucdenver.edu
303-724-7680
19/20/2013

2. Methods: A survey regarding experiences and services
for individuals with a dual diagnosis.
CHC ED Follow-up: Survey sent to caregivers of
individuals with a dual diagnosis (ages 8-18) who had
been seen in the CHC Emergency Department (ED).
Response by mail or secure web link. (COMIRB #13-1751)
GAP Analysis: Publically available survey via a secure
web link was circulated among local advocacy groups.
Surveys for Caregivers, Providers, and Adults receiving
services are available. (https://redcap.ucdenver.edu/surveys/?s=9UMnVv)
Colorado Dual Diagnosis Gap
Analysis Surveys
29/20/2013

3. Demographics
76
16
1
54
27
Male
Female
No
answer
40
30
23
0
0
0
19
8
17
27
6
4
Age 8-12
Age13-15
Age 16-18
Age 19-22
Age 23-30
Age 31+
CHC ED Follow-up (N=93) GAP Analysis (N=81)
39/20/2013

4. 66
40
24
0
6
23
0
51
26
29
5
6
15
4
Autism Spectrum Disorder
Developmental Delay
Intellectual Disability
Down syndrome
Cerebral Palsy
Other Developmental Disability
I don't know
CHC ED Follow-up (N=93) GAP Analysis (N=81)
Developmental Diagnoses
*Respondents could select more than one option*
49/20/2013

5. Psychiatric Diagnoses
*Respondents could select more than one option*
29
51
24
39
48
4
0
32
0
29
52
23
20
32
9
2
23
2
Depression
Anxiety
Bipolar Disorder
Other Mood Disorder
ADD/ADHD
Psychotic Disorder
Substance Abuse/Addiction
Other psychiatric diagnosis
I don't know
CHC ED Follow-up (N=93) GAP Analysis (N=81)
59/20/2013

6. Main reasons for ER visits
*Respondents could select more than one option*
‘Other’ responses
• Medical needs
• “We needed a break”
• “Needed medical evaluation and surveillance”
• “My child has medical problems that sometimes cannot be managed at home due to behavior -
IE, refusing to allow treatment …”
39
33
61
0
30
29
16
38
4
10
Self-injury
Thoughts of Suicide
Threat to others/property
Medication refill
Other
CHC ED Follow-up (N=93) GAP Analysis (N=81)
69/20/2013

7. IQ
70 and
Below
35
71 and
Above
29
Don't
know/No
answer
17
GAP Analysis
N=81
IQ
70 and
Below
23
71 and
Above
47
Don't
know/No
answer
23
CHC ED Follow-up
N=93
79/20/2013

8. IQ
Insurance type for individuals
with IQ < 70
35%61%
4% Public
(Medicare, Medic
aid, CHP+)
Private
(Private, Tricare)
Other
54%43%
3%
Primary
Insurance
Mental
Health
Insurance
*Respondents
could select
more than
one option*
CHC ED Follow-up
(N=23)
GAP Analysis
(N=35)
25%
42%
33%
Public
Private
Other (Other, Out
of Pocket)
Does not receive
MH services
50%
14%
24%
12%
89/20/2013

9. 29%
39%
30%
2%
44%54%
2%
Primary
Insurance
Mental
Health
Insurance
*Respondents
could select
more than one
option*
CHC ED Follow-up
(N=47)
GAP Analysis
(N=29)
Insurance type for individuals
with IQ 71+
45%48%
4%
3%
Public
(Medicare, Medicai
d, CHP+)
Private
(Private, Tricare)
Other
34%
25%
29%
12%Public
Private
Other (Other, Out of
Pocket)
Does not receive MH
services 99/20/2013

10. Services received for individuals
with IQ < 70
Yes
43%
No
57%
Yes
80%
No
17%
No
answer
3%
Yes
39%No
61%
Yes
74%
No
22%
No
answer
4%
Yes
23%
No
77%
Yes
31%No
66%
No
answer
3%
CCB Services
CHC ED Follow-up
(N=23)
Community
Mental
Health
Center
School
Mental
Health
Services
GAP Analysis
(N=35)
109/20/2013

11. Services received for individuals
with IQ 71+
CCB Services
CHC ED Follow-up
(N=47)
Community
Mental
Health
Center
School
Mental
Health
Services
GAP Analysis
(N=29)
Yes
17%
No
77%
No
answer
6%
Yes
38%No
62%
Yes
60%
No
40%
Yes
53%
No
41%
No
answer
6%
Yes
28%
No
72%
Yes
28%
No
72%
119/20/2013

12. Recurring comments for needed
services
• Wrap-around care/support
– Many families receiving services/therapies state that any
one service meets their child’s needs “a little” or
“somewhat” (data not shown).
• Access to needed care - regardless if diagnoses or lack thereof
• Support for the entire family unit
• Day Camp; Longer term camps
• Respite care with trained staff
• Family therapy/classes
• Living options for transitioning adults
• Living/other supports for higher-functioning individuals
• Need for provider training/more options for crises
129/20/2013

13. Other comments of note
• “A child's needs for services and support can change quickly.”
• “HOLISTIC approach to mental wellness is team effort, communicate effectively in a way that
honors family and they can understand. “
• “Options in metro Denver and within schools seem limited. The current private options for
school are very costly and very limited. CHC is doing a fine job with the acute care phase, but
after that working with the schools is very difficult and lacking in collaboration. Improved
information to families about 911 services and how they can be helpful in a crisis involving
a child with ASD mental health. What happens after age 18? THAT is a scary thought.”
• “Provide continuous follow up with family
• “In my experience it is near impossible to get help with low cognition and behavior problems.
Parents are left to feel desperate for help with no options for relief if the child doesn't qualify
for admission.”
• “There needs to be an option. ER is not the answer. Population misunderstood. Develop
programs to allow more family and in home crisis management. Take approach that brings
needed interventions together.”
139/20/2013

14. GAP Analysis
Provider Data
Private Practice
13%
Hospital
14%
Mental Health Center
22%
School
7%
Direct Service Provider
(DSP)
26%
Other
18%
N=61
*Providers
able to
select
more than
one type of
practice
setting*
Provider
Practice
Setting
149/20/2013

15. GAP Analysis
Provider Data
Have you had PREVIOUS
TRAINING in caring for this
population? Yes
59%
No
36%
No answer
5%
9
15
9
10
17
1
0-5 years
6-10 years
11-15 years
16-20 years
More than 20 years
No answer
Years Practicing in Current Field (N=61)
159/20/2013

16. GAP Analysis
Provider Data
Have you ever had to turn down
seeing an individual from this
patient population?
Most common reasons for refusal:
• Presenting problem not covered by Medicaid/insurance
• No insurance/lack of funding
• Already had full caseloads
Yes
56%
No
41%
No answer
3%
169/20/2013

17. Providers thoughts on barriers to serving this
population
• Lack of skilled providers
• Low re-imbursement
• Too high of caseload/burn-out from emotional
investment
GAP Analysis
Provider Data
179/20/2013

18. GAP Analysis Study
The State of Colorado is supporting a cross-systems analysis of crisis intervention services. This
analysis will look at the capacity to serve all individuals with dual diagnoses of an Intellectual or
Developmental Disability and a Mental Health or Behavioral Disorder. This population includes
individuals with Autism, Asperger’s Syndrome or PDD-NOS who have co-occurring Mental Health
or Behavioral Disorders. We are also interested in individuals with Developmental Disabilities
who, for psychiatric or behavioral reasons, have used Emergency Medical Services or been
hospitalized. We want to hear the perspectives of people in these situations even if they do not
technically have a Mental Health or Behavioral Disorder.
We invite you to take our survey online at https://redcap.ucdenver.edu/surveys/?s=9UMnVv.
The results of this survey will be reported as a summary and no one will know which responses
are yours. Please feel free to pass the survey link onto anyone you think might be interested in
responding. Our hope is that, with your help, we will be able to provide recommendations on
how to better meet the needs of this population. We will post the results of the survey on the
Colorado CANDO and JFK Partners websites.
We appreciate you sharing your experiences. Please know that every voice is heard. Thank you
for your participation!
189/20/2013