Evaluation of Early Childhood Mental
Health Systems of Care
Ilene R. Berson, Ph.D., NCSP and Maria J. Garcia-Casellas, MS, University of
South Florida, Sarasota Partnership for Children's Mental Health
Joy S. Kaufman, Ph.D. and Amy Griffin, M.A. Yale University School of Medicine,
Building Blocks, Southeastern CT Mental Health System of Care
Cindy A. Crusto, Ph.D. and Meghan Finley, Ph.D, Yale University School of
Medicine, Rhode Island Positive Educational Partnership
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Setting the Context
Early Childhood
System of Care Communities
• Graduated Communities
– Denver, CO
– State of Vermont
• 2005 Cohort
– Allegheny County, PA
– Los Angeles County, CA
– Multnomah County, OR
– State of Rhode Island*
– Sarasota, FL*
– Southeastern Connecticut*
Early Childhood
SOC Communities (cont’d)
• 2008 Cohort
– Burlington, NC
– State of Delaware
– Fort Worth, TX
– State of Kentucky
• 2009 Cohort
– Alameda County, CA
– Boston, MA
– Guam
Evaluation of Early Childhood Mental
Health Systems of Care
Ilene R. Berson, Ph.D., NCSP and Maria J. Garcia-Casellas, MS, University of
South Florida, Sarasota Partnership for Children's Mental Health
Joy S. Kaufman, Ph.D. and Amy Griffin, M.A. Yale University School of Medicine,
Building Blocks, Southeastern CT Mental Health System of Care
Cindy A. Crusto, Ph.D. and Meghan Finley, Ph.D, Yale University School of
Medicine, Rhode Island Positive Educational Partnership
Acknowledgements
Building Blocks, Southeastern
Mental Health System of Care
• Kathleen Bradley, Ph.D., PI
• Sue Radway, Ed.D., PD
• Gigi Rhodes, LCSW, CS
• Deirdre Cotter Garfield, MSW
Families United
•Miralys Camelo, Eval Assistant
Rhode Island Positive Educational
Partnership
• Janet Anderson, Ed.D., PI
• Anthony Antosh, Ed.D. Co-PI
• Ginny Stack, MA, PD
• Frank Pace, MSW, CD
• Cathy Ciano, PSN RI
•Jo-Ann Gargiulo, Eval Assistant
Sarasota Partnership for Children's
Mental Health
•Chip Taylor, MPA, PI
•Sarah Cloud, RN, MS, PD
•Kristie Skoglund, Ed.D., LMHC, CD
•Kelly Lewin, FSN
Early Childhood Systems of Care (EC-SOC)
• EC-SOCs develop services and supports for children
aged birth to eight years, and their families to:
– promote positive mental health
– prevent mental health problems, and
– provide mental health interventions
• Although the rates of severe emotional disturbance in
young children is nearly identical to that in older children
(Egger, 2009), SOCs have almost exclusively served
adolescents and school-aged children (Kaufmann &
Hepburn, 2007).
• Although a growing number of EC-SOCs are being
supported, little is known across communities regarding:
– demographic and background characteristics of these children
– experiences that may have and continue to place them at risk for
or protect them from psychiatric difficulties
Building EC Knowledge Base
• In response to this gap in knowledge, the Phase V
Early Childhood sites came together to:
– work with the national evaluation team to modify/add
appropriate data elements for the early childhood
population
– select several common outcome measures so that more
relevant longitudinal data could be gathered about young
children
– agree to share data so that it could be aggregated across
sites
Purpose of Presentation
• To present data pooled from three SAMHSA
CMHS funded EC-SOC communities to:
– Better understand who are the young children aged
birth to eight years and their families served.
– Report on factors that may have increased children’s
risk for social, emotional, and/or behavioral
challenges or protected them from these difficulties.
– Examine the mental health trajectories of young
children served in these SOC communities.
– Discuss work of the Diagnosis and Eligibility
Workgroup including review of imminent risk.
– Describe efforts to validate some DC 0-3R diagnoses.
Collaborating EC SOCs
• Our three communities were funded in 2005
(Phase V)
• Range in ages served (birth through 11 years)
• Population of focus differs
• Intervention of focus differs
• Continuum of mental health services and
supports are similar
New London Building Blocks
• An initiative of the Southeastern Mental Health
System of Care (SEMHSOC) in partnership
with Families United, CT Department of
Children and Families, Child and Family
Services, United Community and Family
Services, LEARN
• Children under six years with serious social,
emotional, and mental health challenges and
their families
• Serving all of New London County with a focus
on underserved populations including military
families, Hispanic/Latino families, teen
parents, and homeless families
• 300 children and their families to receive care
coordination and a home-based intervention
that focuses on the parent-child relationship
and utilizes techniques of PBS
Rhode Island Positive
Educational Partnership (RIPEP)
• Partnership among DCYF, RIDE,
Sherlock Center, and early childhood
systems
• Integration of RI PBIS statewide
initiative, RICASSP SOC and
continuum of children’s behavioral
health services, and early childhood
systems
• Children aged birth through11 years
with serious social, emotional, and
mental health challenges and their
families
• 80 schools/ECE sites will be involved
• 700 children and families to be served
Sarasota Partnership for Children’s Mental Health
•
Comprised of representatives of the health department, mental health service
agencies, school district, early learning and care community, and numerous
other child serving organizations.
•
The population of focus includes children birth through age 8 and family
members at risk of disrupted relationships due to
a) foster care placement or risk of placement,
b) prenatal exposure to alcohol and other substances,
c) risk of expulsion or exclusion from early learning environments, and/or
d) the presence of other environmental stressors (i.e., domestic violence,
poverty, caregiver mental illness, homelessness).
The children have a DC:0–3R or DSM-IV-TR diagnosis and prognosis that
mental health challenges will last at least one year and require multi-agency
interventions from at least two community service agencies.
•
Approximately 400 children and families expected to receive care coordination
Procedure
• Descriptive Data (demographic and diagnostic)
must be collected at intake and submitted for:
– All youth and families supported and served by the CMHSfunded system of care
• Data sources:
– Administrative records
– Caregivers
– Evaluators (for specific questions)
• Family Descriptive Information collected during
Child and Family Outcome Study (every 6
months):
– Intake data reported on here
• Data source:
– Caregiver participating in Outcome study
Outcome Study Measures
Domain
Parenting/
Family Context
National Evaluation
Additional EC Measures
Caregiver Strain Questionnaire
(CGSQ)
Parenting Stress Index (PSI)
Caregiver Information Questionnaire
(CIQ)
Center for Epidemiology Depression Scale
(CES-D)
Family Life Questionnaire (FLQ)
Addictions Severity Index (ASI)
Living Situations Questionnaire (LSQ)
Trauma
Exposure
Social/
Emotional
Challenging
Behaviors
Traumatic Events Screening Inventory
(TESI)
Child Behavior Checklist (CBC)
Brief Infant-Toddler Social Emotional
Assessment (BITSEA)
Vineland Screener (VS)
Devereux Early Childhood Assessment –
Social Emotional (DECA-SE)
Columbia Impairment Scale (CIS)
Emotional
Regulation
School
Experience
Temperament and Atypical Behaviors
Scale (TABS)
Educational Questionnaire (EQ)
Early Care and Education Stability Scale
(ECES)
Findings
System of Care Community
System of Care Community (n = 728)
New London Building Blocks (NLBB)
21.8%
Rhode Island Positive Educational
Partnership (RIPEP)
21.2%
Sarasota Partnership for Children's
Mental Health
57.0%
Demographics (n=728)
Gender
Male
73.5%
Female
26.5%
Average Age at Intake
4.64 years
Age Distribution
< 1 year
2.7%
1 year
3.8%
2 years
9.1%
3 years
15.2%
4 years
17.3%
5 years
17.7%
6 years
11.3%
7 years
11.3%
8 years
11.5%
Demographics, cont.
Race/Ethnicity (n = 701)
American Indian or Alaska Native
1.1%
Black or African American
22.1%
White
60.0%
Other
12.3%
Hispanic/Latino Background (n = 701)
Yes
16.8%
Custody Status
N=370
Referral Source
(n=708)
Presenting Problems
(n=427)
Presenting Problems Reported for
Young Children (n=465)
4.10%
Feeding Problems
Disruptive Behaviors
16.30%
Persistant Non-Compliance
27.30%
Excessive Crying/Tantrums
11.00%
Separation Problems
2.60%
Non-Engagement with People
15.90%
Sleeping Problems
11.00%
Excluded from Preschl/Childcare Due to …
At Risk for/has Failed Family Home… 2.40%
5.80%
Maltreatment
4.50%
Other Problems of Child Health
7.30%
Parent/Caregiver Mental Health
7.70%
Parental/Caregiver Substance Use/Abuse
3.00%
Family Health Problems
Other Family Problems 0.80%
9.50%
Housing Problems
5.20%
Other Early Child Problems
0.00%
10.00%
20.00%
30.00%
40.00%
57.80%
50.00%
60.00%
70.00%
Educational Information
Attended an early childhood program in the last
6 months (6 and younger; n=275)
Have an IEP (n=207)
82.5%
42.0%
IEP is for Behavioral Health Issues (n=87)
75.6%
School Disciplinary Issues in the 6-months Prior to
Enrollment (n=210)
Suspended
14.8%
Expelled
2.9%
Suspended and Expelled
1.9%
Health History
Children who have:
Have a primary care physician (n=373)
95.4%
Recurring health problem (n=373)
38.9%
On medication for recurring health problem (n=370) 23.3%
Hospitalized in past 6-months for recurring health
2.8%
problem (n=351)
Family Characteristics
Children live in homes with:
Other children
M=1.43
Adults
M=1.86
Family Income:
Below Poverty
58.1%
At or Near Poverty
15.6%
Above Poverty
26.3%
Caregiver Employment:
Worked in last 6-months
58.5%
Hours worked per week
M=31.9
Child and Family Risk Factors
Caregivers Reported:
Family history of depression (n=356)
68.8%
Family history of mental illness (n=358)
46.6%
Family history of substance abuse (n=363)
52.3%
Has the child ever:
Witnessed domestic violence (n=363)
38.0%
Lived with someone who is depressed (n=361)
62.6%
Lived with some with a mental illness (n=358)
45.2%
Lived with someone convicted of a crime (n=362)
36.7%
Lived with someone w/a substance abuse problem (n=362)
39.2%
Been physically abused (n=359)
9.7%
Been sexually abused (n=355)
3.9%
Run away (n=367)
9.5%
Talked about suicide (n=373)
9.7%
Attempted suicide (n=365)
1.9%
Services Received Prior to Enrollment
Any Service
32.4%
Outpatient Services
School-based Services
Day Treatment
Residential Treatment
31.0%
23.4%
2.9%
2.2%
Substance Abuse Treatment
--
Preliminary Results from Longitudinal
Outcome Study
Procedure
• Supplemental measures to the SAMHSA required
Longitudinal Child and Family Outcome Study
–
–
–
–
Baseline, 6months, 12 months
Caregiver report
Interviews conducted by trained interviewers
Interviews conducted in caregivers’ preferred or
primary language
– Interviews conducted in family’s home or another
location
Outcome Study Measures
Domain
Parenting/
Family Context
National Evaluation
Additional EC Measures
Caregiver Strain Questionnaire
(CGSQ)
Parenting Stress Index (PSI)
Caregiver Information Questionnaire
(CIQ)
Center for Epidemiology Depression Scale
(CES-D)
Family Life Questionnaire (FLQ)
Addictions Severity Index (ASI)
Living Situations Questionnaire (LSQ)
Trauma
Exposure
Social/
Emotional
Challenging
Behaviors
Traumatic Events Screening Inventory
(TESI)
Child Behavior Checklist (CBC)
Brief Infant-Toddler Social Emotional
Assessment (BITSEA)
Vineland Screener (VS)
Devereux Early Childhood Assessment –
Social Emotional (DECA-SE)
Columbia Impairment Scale (CIS)
Emotional
Regulation
School
Experience
Temperament and Atypical Behaviors
Scale (TABS)
Educational Questionnaire (EQ)
Early Care and Education Stability Scale
(ECES)
Risk Factors and CBC Analysis
• Predictors (Risk factors):
– number of different types of trauma events
– maternal depressive symptoms
– parenting stress (total scale)
• Controlled for: child’s age and child’s gender
• Outcome: CBC total problems score at baseline, 6-,
and 12-months
Risk Factors and CBC Results
• CBC Total Problem Scores decreased over time
• At baseline
– number of different types of trauma events experienced was
significantly related to higher CBC scores
– lower levels of maternal depression were significantly related
to higher CBC scores
– higher parenting stress was significantly related to higher
CBC scores
• Parenting stress was significantly related to
trajectory of CBC scores over time
– children whose parents had higher parenting stress at
baseline improved more quickly than children whose parents
reported less stress at baseline
Protective Factors and CBC Analysis
• Predictors (Protective factors):
– DECA: Initiative, self-control, attachment
• Controlled for: child’s age and child’s gender
• Outcome: CBC total problems score at baseline,
6-, and 12-months
Protective Factors and CBC Results
• At baseline
– higher self control was significantly related to
lower CBC scores
– older children were significantly more likely to
have higher CBC scores
• Only age was significantly related to
trajectory of CBC scores over time
– older children started out higher on CBC at
baseline but exhibited fewer problems at 6
months
Discussion
• With regard to risk factors, parenting stress
was significantly related to trajectory of CBC
scores over time
– potential benefits to early intervention
– clinical vs. statistical significance
• In the examination of protective factors, only
age was significantly related to trajectory of
CBC scores over time
– older children started out higher at baseline
but exhibited fewer problems at 6 months
Translating Research into Practice:
Imminent Risk and a Public Health
Approach to Early Childhood
A Public Health Approach to Early Childhood
• Promotion of positive mental health through comprehensive service
delivery
• Prevention of conditions commonly associated with emotional
disorders, including exposure to trauma, to preserve young
children’s mental health.
• Earliest possible identification and intervention in mental health
problems, to restore positive functioning and well being.
• The approach focuses on both strengthening services and supports
for children with serious emotional disorders and their families, and
on prevention and early intervention strategies for all children.
• To achieve this public health approach, cross-system partnerships
are needed within communities to implement and sustain such
services.
Public Health Implications
• Enhance Early Childhood System of Care Eligibility
– Imminent risk
• Resilience-informed approach
– Focus: promote resilience
– Goal: reduce negative outcomes
• Future directions
– Explore additional risk factors
– Identify/design screening tools
Early Childhood Community of Practice
Diagnosis and Eligibility Workgroup
• Convened at Early Childhood Pre-Conference
meeting in New Orleans, July 2007
• Draft Concept Paper presented to the Early
Childhood Community of Practice participants at
the Training Institutes in July, 2008 in Nashville
Imminent Risk
• Cumulative risk screening that may help focus
preventive intervention where it will be most
efficient and effective (e.g. based on number of
risk factors experienced, occurring after risk
exposure and before development of problems,
in the context of service resources, etc.).
• Appropriate screening tools can be used to
identify children and get them into the services
they need to prevent young children from
developing more severe and persistent
disorders.
Resilience-Informed Approach
• Combination of high risk-status and inadequate
protective factors compound to intensify the detrimental
effect on a child’s functioning and emotional well being.
The results of our research highlight the relevance of risk
and resilience to early childhood mental health.
• Since children are impacted greatly by adult risk
behaviors (i.e., mental illness, drug abuse, criminal
activity), a complementary focus on strengthening
protective factors and promoting resilience within the
family may help reduce the negative outcomes of current
and future risk exposure.
Summary and Next Steps
• Study results support using trauma exposure and
protective factors to identify children at imminent risk for
emotional and behavioral problems.
• Early intervention efforts should focus on strengthening
protective factors and promoting resilience, which may
reduce the negative outcomes of current and future risk
exposure.
• Future directions should include the development and
application of screening tools to identify risk and
resilience for early childhood mental health.
• Ongoing research should investigate additional risk
factors (e.g., prenatal tobacco, alcohol, and/or drug use,
caregiver strain, poverty) that may place children at
imminent risk for emotional and behavioral problems.
Validation of the DC 0-3R
Developing Diagnostic
Classification Systems for Young
Children
• “Research data in preschool psychopathology are so scant
that the extrapolation of most diagnoses to preschool age is
unsupported by any convincing research data.” (Postert et
al., 2009)
• Challenges
– Preschool children are limited in their ability to self-report due to cognitive
immaturity and limited verbalizing skills
– Compared to other age groups, preschool children represent the group most
variable in developmental changes in important domains like emotional
regulation, interpersonal interactions, play, control of physical functions,
motor skills and language.
– Thresholds for the frequency of symptomatic behavior in older children are
not transferable to preschoolers if these behaviors are developmentally
normal in young children.
– In early child mental health development biological and environmental
factors closely interact requiring a dynamic model of mental health
development. However, the difficulty of developing reliable measurements of
relationship factors remains a serious empirical challenge.
Challenges of Diagnostic
Classification Systems
• DSM IV
– Offers only a small number of child psychiatric disorder categories for
young children and lack developmentally sensitive adaptations
– Lacks integrated emphasis on contextual factors influencing developmental
psychopathology in young children, i.e., child-parent attachment, parental
sensitivity and interactive behavioral patterns
• Research Diagnostic Criteria––Preschool Age
(RDC-PA)
– 2001 to 2002 task force from the American Academy of Child and
Adolescent Psychiatry (AACAP)
– Aim: devise complementary and developmentally sensitive modification to
the appropriate categories of DSM-IV-TR based on empirical data
– 17 diagnostic categories of the DSM-IV classification system were deemed
relevant to children ages 0-5 years
• Agoraphobia without history of panic disorder, social phobia, obsessive
compulsive disorder and generalized anxiety disorder have insufficient
evidence-based data to warrant a revision but their clinical relevance to
young children required their provisional inclusion into RDC-PA without
proposal for modification.
Purpose of the Diagnostic
Classification: 0-3R (DC:0-3R)
• To focus on the first 3-4 years
• To provide a developmentally sensitive diagnostic tool
for young children that frames diagnosis as an ongoing
process and leads to the development of a
comprehensive prevention and/or treatment plan
• To consider the impact of relationships and obtain a
complete understanding of a young child, in the context
of his/her family
• To consider problems/behaviors not captured by other
classification systems
• To complement other systems (e.g., DSM, ICD)
DSM–IV Axis I & II Diagnoses
Children 4-8 Years of Age
Diagnosis (n = 277)
%
Attention Deficit/Hyperactivity
30.3%
Adjustment Disorders
27.8%
Disruptive Behavior Disorders
19.5%
Anxiety Disorders
10.1%
PTSD
8.7%
Oppositional Defiant Disorder
7.6%
Mood Disorders
6.9%
Pervasive Developmental Disorders
6.1%
Other
9.1%
Because children/youth may have more than one diagnosis, percentages for diagnoses may sum to more than 100%.
[a] Substance Use Disorders include caffeine intoxication.
[b] V Code refers to Relational Problems, Problems Related to Abuse or Neglect, and additional conditions. Percentage excludes V71.09 (No Axis I or II diagnosis).
DC:0-3R Axis I Diagnoses
Children 0-3 Years of Age
Clinical Diagnosis (n = 97)
%
Adjustment Disorders
32.9%
Anxiety Disorders
14.4%
Sensory Stimulation-Seeking/Impulsive
13.4%
Hypersensitive
12.4%
Regulation Disorders
7.4%
Mixed Disorders of Emotional Expressiveness
4.1%
Sleep Disorders
4.1%
PTSD
2.1%
Other
6.1%
Because children/youth may have more than one diagnosis, percentages for diagnoses may sum to more than 100%.


DC: 0-3 R Diagnosis
ICD-9-CM Diagnosis
220
Anxiety Disorders
of Infancy and Early
Childhood
221
Separation Anxiety
Disorder
Specific Phobia
309.21
Separation anxiety disorder
300.29
223
Social Anxiety
Disorder (Social
Phobia)
300.23
Other isolated or specific
phobias
Acrophobia, animal phobias,
claustrophobia, or fear of
crowds
Social phobia
Fear of eating in public, speaking
in public, washing in public
224
Generalized Anxiety
Disorder
Anxiety Disorder
NOS
300.02
Generalized anxiety disorder
300.00
Anxiety state, unspecified
222
225

430

DC: 0-3 R Diagnosis
Sensory StimulationSeeking/Impulsive
314.01
ICD-9-CM Diagnosis
Attention deficit disorder with
hyperactivity
 Combined type
 Overactivity NOS
 Predominantly
hyperactive/impulsive type
 Simple disturbance of
attention with overactivity
314.1
Hyperkinesis with
developmental delay
 Developmental disorder of
hyperkinesis
314.9
Unspecified hyperkinetic
syndrome
 Hyperkinetic reaction of
childhood or adolescence
NOS
 Hyperkinetic syndrome NOS
313.9
Unspecified emotional
disturbance of childhood or
adolescence
Anxiety
Sensory StimulationSeeking/Impulsive
50%
50%
4.7 years
86%
14%
4.3 years
3.7-5.8 years
2.8 years
Boys
Race
Black or African
American
White
Multi-Racial
4.5-4.7 years
2.8-5.3 years
75%
86%
14%
Hispanic/Latino
Background
50%
29%
Demographics
Gender
Male
Female
Average Age at Intake
Age Group
Girls
25%
Average Scores of Child Behavioral and
Emotional Problems for Children Ages
1½ to 5 at Intake
Borderline
Clinical
Clinical
CBCL 1½-5
Average
Syndrome Scale
Score
25%
25%
64 (Range 59-79)
0%
0%
58 (Range 50-60)
Sensory Stimulation-Seeking/Impulsive
Anxious/Depressed T-Score
14%
14%
62 (Range 50-74)
Attention Problems T-Score
29%
68 (Range 57-73)
Measure
Anxiety
Anxious/Depressed T-Score
Attention Problems T-Score
57%
For the syndrome scales, T scores less than 67 are considered in the normal
range, T scores ranging from 67-70 are considered to be borderline clinical, and T
scores above 70 are in the clinical range.
Looking Toward the Future
Next Steps
• Our sites will continue to collect this data.
• Plan to submit a R01 this June to create a data
repository so that we can pool the data across
sites to allow for a more comprehensive
understanding of the characteristics of children
served and the impact of EC SOCs for young
children and their families overtime.
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Evaluation of Early Childhood Mental Health Systems of Care