Appendix: Focus Group Methodology

Recruiting families on Medicaid who are willing to participate in a two-hour focus group is difficult. These families often face financial hardships and many lack transportation. Accordingly, a targeted recruitment strategy was selected as the best approach to locate families with children on Medicaid with a serious mental and emotional disorder. Focus group participants were recruited through Families Together in New York State and the Oregon Family Support Network (OFSN), state chapters of the Federation of Families for Children’s Mental Health. Families receiving assistance from the federation’s chapters have children with serious disorders, and we believed that recruiting families who have developed positive relationships with Federation chapters would increased the likelihood that they would commit their time to participate in the study. The invitation to participate did not ask whether the families were satisfied with the services their child(ren) had received.

In addition to Medicaid eligibility, the study required that the family include children with a serious mental and emotional disorder who had received mental health services via Medicaid in the past year. Because many of these families had received support and assistance in accessing the mental health services from the Federation chapters, they represented the best-case scenario: parents who are informed about their child’s disorder, the services they needed, and on how to maneuver through the system.

We used various approaches to recruit parents, including announcements in newsletters and distribution of flyers to programs serving children with serious emotional disturbances, such as support groups, child mental resource centers and county departments of mental health. Families were screened to ensure that their children were Medicaid-eligible and that they had a diagnosis of serious mental disorder. No random selection was involved. All eligible families were invited to participate.

The focus group topic guide was developed by the Bazelon Center with input from Families Together, OFSN and the Bazelon Center’s Institutional Review Board (IRB). The topic guide included questions on the following areas: 1) identification and diagnosis of child’s mental disorder; 2) knowledge of mental health services covered under the state’s Medicaid plan; 3) access to listed mental health services; 5) amount of services received; 4) satisfaction with services received; and 6) suggestions for improving the system. A short survey asked about the participant’s relationship to the child and the child’s age, diagnoses and mental services received in the past year. The survey, topic guide, consent form and research protocol were reviewed and approved by the Bazelon Center’s IRB in January 2002.
Parents completed the survey and then participated in the focus group for approximately two hours. As is standard focus group policy, participants were paid for their time. Child care was also made available. Each of the focus group discussions was transcribed.

Focus group participants in New York discussed their experience with 40 children and those in Oregon discussed experience with 46 children. Most participants in all groups were mothers. Children were primarily male and tended to be older (ages 7-18) with multiple mental health problems. Diagnoses most often reported were:

• attention-deficit/hyperactivity disorder or attention deficit disorder;
• depression;
• learning disorder;
• conduct disorder;
• oppositional disorder/oppositional defiant disorder;
• post traumatic stress syndrome.

We compared the minority representation of our focus groups with the two states’ demographic data about children in their Medicaid programs. New York reports that African-American and Hispanic children account for 56 percent of children on Medicaid receiving services at state-licensed facilities.12 Our focus group was closely aligned, reflecting 59 percent African-American or Latino members. In Oregon’s Medicaid program, African-American or Latino children account for 28 percent of enrolled children; our focus group, having little Latino representation, included only 9 percent.13

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