Mental Health Need and Access to
Services for Children with
Special Health Care Needs
Moira Inkelas1,2
Kandyce Larson1
Kathryn A. Smith2,3
Ramesh Raghavan1,4,5
Susan Igdaloff6
1UCLA
Center for Healthier Children, Families, and Communities
2Department of Health Services, UCLA School of Public Health
3USC University Center for Excellence in Developmental Disabilities, Children’s
Hospital Los Angeles
4UCLA Neuropsychiatric Institute
5National Center for Child Traumatic Stress
6Children’s Medical Services, California Department of Health Services
UCLA Center for Healthier Children,
Families & Communities
Mental Health Concerns
• Children
 Psychiatric or behavioral disorders
 Risk of psychosocial adjustment problems
associated with chronic medical conditions
• Family members
 Financial strain
 Caregiver emotional distress or depression
 Spill-over of family functioning disruption on
siblings
UCLA Center for Healthier Children,
Families & Communities
Objective
• To examine self-reported need and unmet need for
mental health care among CSHCN and their
parents/family members
UCLA Center for Healthier Children,
Families & Communities
National Survey of Children with Special
Health Care Needs (NS-CSHCN)
• Designed to describe access and quality of care for
CSHCN
• Sponsored by MCHB, CDC, and NCHS
• Random-digit-dial telephone interview
• 750 randomly sampled CSHCN (age 0-17 years) in all 50
states (and DC)
• Interviews with 38,866 parents in 2000-2001
UCLA Center for Healthier Children,
Families & Communities
Operationalized Definition of CSHCN
•
•
Having a chronic physical or behavioral condition, lasting or expected
to last at least 12 months, that causes at least one of the following
consequences:
1) Limited or prevented in ability to function;
2) Needs/uses prescription medication;
3) Needs/uses special therapy such as PT, OT, speech;
4) Needs/uses medical care, mental health, or educational
services above what is routine for age; and/or
5) Needs/uses counseling or treatment for ongoing emotional,
behavioral, or developmental problem
No diagnostic information
UCLA Center for Healthier Children,
Families & Communities
Need for Counseling/Mental Health
• During the past 12 months, was there any time when
(child) needed mental health care or counseling?
 Did (child) receive all the mental health care or
counseling needed?
• During the past 12 months, was there any time when
you or other family members needed mental health
care or counseling due to (child’s) medical,
behavioral, or other health condition?
 Did you or your family receive all the mental health
care or counseling needed?
UCLA Center for Healthier Children,
Families & Communities
Conceptual Model for Access
INDIVIDUAL
PREDISPOSING
Age
Gender
Severity
Stable vs.
changing needs
FAMILY
ENABLING
Race/ethnicity
Household
income
Acculturation
Parent education
HEALTH CARE
ENABLING
Structure
Insurance
coverage
Insurance
type
INTERMEDIATE
OUTCOME
(PROCESS OF
CARE)
EXPERIENCES
WITH CARE
Medical home
Regular
provider
(knows child
best)
Usual source
• Family
centered care
• Services
well-organized
• Family impact
• Unmet need
ACCESS AND
QUALITY
HEALTH CARE RESOURCES
AND POLICY
General pediatrician supply
Pediatric specialty supply
CONTEXTUAL FACTORS
UCLA Center for Healthier Children,
Families & Communities
Analysis
1) Prevalence of need and unmet need
2) Child and family factors associated with need
3) Child, family, and enabling health care factors
associated with unmet need
4) Variation in unmet need by
 processes of care
 region
UCLA Center for Healthier Children,
Families & Communities
Reported Need for Counseling/Mental
Health
• Need
 25% of CSHCN
 13% of CSHCN have a parent/family member with need
• Greater rates of need among older children
 Three times as frequent among CSHCN 6-17 years
than 0-5 years
 Twice as frequent among their parents/other family
members
• Greater rates of need among boys
UCLA Center for Healthier Children,
Families & Communities
Determinants of Mental Health Need
Child
Child’s condition severity
High
Stability of child’s health needs
Sometimes changing
Always changing
Number of CSHCN in household
More than one
Child’s race/ethnicity
Hispanic (English)
Hispanic (Spanish)
African-American
Household income
200-299% FPL
At or above 300% FPL
Family member
2.75**
3.31**
1.25**
1.72**
1.44**
2.20**
1.12*
1.24**
0.89
0.70*
0.83*
0.84
0.76
0.69**
0.67**
0.62**
0.97
1.02
Shows adjusted odds ratios. Logit model includes child gender, child age, maternal education.
* p<0.05
UCLA Center for Healthier Children,
** p<0.01
Families & Communities
Reported Unmet Need for Counseling/
Mental Health
• Unmet need, among those with a reported need
 16% of children
 20% of parent/family member
UCLA Center for Healthier Children,
Families & Communities
Adjusted Odds Ratios: Unmet Need for
Counseling/Mental Health
Child
Condition severity
High
Stability of child’s health needs
Sometimes changing
Always changing
Child race/ethnicity
Hispanic (English)
Hispanic (Spanish)
African-American
Household income
100-199% FPL
200-299% FPL
At or above 300% FPL
Insurance
Public
Uninsured
Family member
1.63**
1.60**
1.29*
1.62**
1.44*
2.19**
0.64*
0.86
1.48*
0.84
2.29*
0.91
0.79
0.50**
0.40**
0.94
0.97
1.02
0.92
3.97**
0.77
3.55**
Shows adjusted odds ratios in logit model including child gender, child age, maternal education.
* p<0.05
UCLA Center for Healthier Children,
Families & Communities
** p<0.01
Health Care Factors Associated with
Unmet Need
• Having a provider who knows child best
 Greater odds of unmet need among children
lacking personal provider, both with usual source
of care (OR 1.95) and without usual source (OR
6.90).
 Lack of usual source associated with unmet need
for parent/family member.
• Unmet need associated with experiences with care:
 Family-centered care
 Health services not always easy to use/well
organized.
UCLA Center for Healthier Children,
Families & Communities
Limitations
• Parent self-report may underestimate need.
• Relying on consumer-based elicitation of need, which
may not reflect need as evaluated by providers.
• Some parents may report need as unmet when the
care is ongoing.
• Children with primary behavioral or psychiatric
disorders are combined with children having medical
conditions for which behavioral/emotional problems
are secondary (e.g., adjustment).
UCLA Center for Healthier Children,
Families & Communities
Conclusions and Implications
• Mental health/counseling needs of CSHCN are
inadequately addressed.
• Regional and supply issues are implied by regional
disparities that persist, even adjusting for family and
health care factors.
• Strategies to improve access and reduce disparities
may include improvements in:
 Screening
 Coordination and family-centeredness of primary
and specialty care
 Reimbursement
UCLA Center for Healthier Children,
Families & Communities