Background

In 1996, a new federal law was passed that made significant changes in the Supplemental Security Income (SSI) program. These changes altered the definitions and procedures for families with children with serious emotional disturbances to receive cash benefits on behalf of these children. For many families, these changes mandated reviews to re-determine the eligibility of children with emotional or behavioral disorders who previously qualified for SSI benefits, thereby jeopardizing an important support to families. In response to these changes, the Research and Training Center for Children’s Mental Health at the University of
South Florida, with support from the federal Center for Mental Health Services, SAMHSA, and the National Institute on Disability and Rehabilitation Research, initiated a study to increase understanding of the impact of this policy change on families. Specifically, this study was designed to complement some of the more cross-sectional quantitative research on the impact of the SSI changes by using qualitative research methodologies to study a sample of families over time and in depth. Such an approach goes beyond looking at aggregate numbers and seeks to provide an understanding of the impact of the policy change in more human terms.

The study followed 40 families over a 22 month period, through a combination of in-person interviews and telephone interviews every three months. The families participating in the study came from rural eastern Kansas, New York City, and west central Florida. All had received a letter from the Social Security Administration (SSA) either in the spring or summer of 1997 notifying them that their child’s eligibility for benefits was being reviewed. In addition to the 40 families who participated in the individual interviews, a series of focus groups was held in the three communities to gain additional perspectives on the impact of the SSI changes.

The study used a longitudinal design, making it possible to describe the sequence of
events that happened after the families had received the letter from SSA. However, there is no comparison group (e.g., families with a child with a serious emotional disturbance who did not receive letters from SSA), and it is not possible from a scientific standpoint to clearly establish a causal relationship between the policy change and outcomes in the family. However, many of the families reported on what they believed the effect of the SSI changes to be, and, as researchers,
every attempt was made to capture as accurately as possible the views of the parents involved. Therefore, while this study is basically a descriptive study it does include the views of the parents of the effects upon them and their family members of the changes in the law. The quotes included are illustrative comments from parents who participated in the study.