THE FAMILY PARTNERS PROJECT: The Health Care Experiences of Families of Children with Special Health Care Needs CHILDREN WITH BEHAVIORAL AND MENTAL HEALTH CONDITIONS A Fact Sheet on Findings How well served are children with mental health conditions, behavioral problems, and autism in comparison to children without these conditions? Are there differences in parental satisfaction with the child’s main health plan among parents of children with these mental health/behavioral conditions in comparison to parents whose children do not have these conditions? Methods: Data on service utilization and parental satisfaction with the child’s primary health plan were compared for families of children with mental health conditions, autism (excluding mental health problems) and behavior problems (distinct from mental health problems or autism.) Families of children with any of these conditions (or any combination) and families of children with none of these conditions were also compared. Findings: Children with autism (9%), mental health problems (other than autism) (7%), or behavioral problems (other than mental health or autism) (17%) constituted a significant group within our sample of children with special health care needs (one-third of the sample for this study). Children with mental health, behavioral problems, or autism were rated by their parents as being in poorer health, having more severe conditions, and as more likely to have health care needs that were changing all the time in comparison to parents of children without these conditions. Compared to parents of children without these conditions, parents of children with autism, mental health problems, or behavior problems were in poorer physical health and had significantly lower income. However, no differences were detected with respect to education, employment or marital status between these two groups of parents.  Three-quarters (74%) of the children with mental health problems, a third (34%) of the children with autism, and over a quarter (29%) of those with behavior problems received mental health services in the year preceding the survey compared to only 8% of children without these conditions. The most common payers for mental health services for children with autism, mental health or behavioral problems (whose parents knew the payment source) were the main plan (66%), a public program (22%), and the family itself (20%). Less prevalent payers were secondary insurance plans (14%), school systems and EI programs (11%) and "other" payers (12%). About one third of these parents indicated more than one payment source for mental health services.  Children with any of the three conditions were significantly more likely to have more tightly controlled primary health plans than children without these conditions. They were also more likely to be in a Medicaid-financed primary health care plan.  Nearly half (48%) of the families of children with mental health, behavioral problems, or autism reported problems in accessing mental health services. The most common problems were finding providers with needed skills and experience, getting referrals for specialty care, getting appointments for specialty care, and coordination of care between the child’s mental health specialist and other providers of care. Over half (54%) of the parents of children with a mental health condition or with autism (53%), and over a third (37%) of those with behavior problems who received mental health services reported they had problems with these services. Among the children without these conditions who utilized mental health services, less than a third (31%) were said to have had problems accessing needed services. There were no significant differences with respect to the specific types of problems they encountered in accessing needed mental health services among those with autism, behavior problems or mental health conditions. However, parents of these children were significantly more likely to report problems finding skilled and experienced mental health clinicians, and in coordinating services between the child’s mental health provider and other clinicians than parents of children without these conditions who used mental health services.  Parents of children with mental health conditions, behavior problems or autism were significantly less satisfied with their child’s main health plan than were parents of children without these conditions (even after accounting for secondary coverage status, level of cost containment in the main plan, parental demographic characteristics, child health characteristics and child’s race).  Parents of children with autism were the most dissatisfied. Over a quarter of these parents (26%) were dissatisfied with the child’s main health care plan and over a third (37%) would not recommend their child’s plan to other families of children with special health care needs. Parents of children with autism also rated specific aspects of their child’s main health plan less favorably than parents of children with mental health conditions or behavioral problems. Parents of children with autism, behavior problems or mental health problems consistently ranked specific aspects of the performance of their child’s main plan less favorably than parents of children without these conditions. These findings remained significant when accounting for secondary coverage status, level of cost containment in the main plan, parental demographic characteristics, child health characteristics and the child’s race were statistically controlled. Additional information about the survey and its results can be obtained from: www.familyvoices.org or by contacting: Nora Wells, Family Voices nwells@fcsn.org 1/888-835-5669 Marty Wyngaarden Krauss, Ph.D., Brandeis University krauss@brandeis.edu