ISDD

Background:

In 1998 we started an interdisciplinary program for children with cerebral palsy at the Hughes Spalding Children’s Hospital in downtown Atlanta. The impetus for starting this clinic came from the fact that the State of Georgia’s Title V Program for Children with Special Health Care Needs was closing their clinical program and the children and their families would not have an alternative place where they could receive comprehensive, coordinated services in a setting that would come close to being a “Medical Home” as promoted by the America Academy of Pediatrics.

In 2002 we received funds from the Ward Family Foundation and set about reviewing the information we had gathered over the nearly 4 years since starting the clinic. We used a CDC questionnaire and reviewed and analyzed the data.

The findings informed us that our clinics had seen almost 250 children in that time, slightly more boys than girls and with a wide age range but predominantly in the school age. There were additional findings on the types of CP, nature of additional impairment, presence of medical and surgical complications, etc. Most of the information was relatively familiar to professionals who know about CP. However, the most striking findings were in the realm of the demographics and psychosocial factors. We found that most of the infants were born prematurely and that they tended to have more severe medical and developmental problems. There was a disturbingly high prevalence of prenatal substance abuse among the mothers and a strikingly clear relationship between maternal substance abuse during pregnancy, and birth weight – the more likely the mother abused substances during pregnancy the more likely the infant would be premature, and the more premature the infant would be and the more severe the medical and developmental complications. We also found that most children were living in single parent families with mothers and that a significant number of children (about 20%) were living in foster homes most often with their grandmothers or other relatives but also in unrelated foster homes.

Cycle of Disadvantage and Disability:

These findings forced us to look more deeply into the relationship between social and economic disadvantage and the prevalence and severity of childhood disability. Indeed the literature was replete with research information and commentaries on the subject of poorer outcomes for children who grew up in less advantageous circumstances and information was strong that the benefits of early intervention to the children and their families and educational support for the children would improve the outcome for the children. Although information on educational and social outcomes of children was plentiful, information on specific disabilities was not as rich.

We found:

The prevalence of disabilities as well as severity and complexity is higher for children living in circumstances of social and economic disadvantage
Maternal behavior before and during pregnancy significantly contributes to the likelihood of prematurity and low birth weight, both of which are significantly associated with a greater risk for developmental disabilities
There is a significant increased set of needs associated with developmental disabilities and chronic medical conditions
There is a paucity of support services available to these families and their children thus reducing the likelihood that the children will have the necessary and appropriate developmental, educational and social services to enable them to grow into their full potential
These children then grow in to young adults who are likely to remain in the adverse circumstances and go on to become pregnant in their teenage years and thus repeat the cycle
See Cycle of Disadvantage and Disability chart below:

For this group of infants and mothers, identifying risks as early as possible, providing strong early intervention programs, and offering programs that provide the mothers with rehabilitation and educational opportunities are critical. Because mothers who have had premature infants are likely to become pregnant again and are more likely to have additional premature infants, they need support on delaying further pregnancies. Mothers need to feel more secure in their role as parents and to appreciate the importance of caring for their infants. They need to know that someone cares about them and is encouraging their success.

Incorporation:

As a result of our findings and supportive evidence from the literature we decided to form an Institute that would be dedicated to exploring the relationship between social and economic disadvantage and childhood disability and to help to develop strategies of prevention and intervention that would serve to reduce the likelihood that children would have adverse physical, medical, developmental, educational, behavioral and social consequences. In addition, it appeared that there was a cycle of disadvantage and disability that perpetuated the problems in successive generations and that, although the pattern appeared to be grim, there were clearly ways in which the cycle could be interrupted and a positive outcome assured. It was up to us to develop strategies to make this happen. Thus, after much research and planning the Institute for the Study of Disadvantage and Disability was formed and incorporated in September 2004.