Tammy Green had always been a good student and was pleased and proud when she successfully finished her training to be a Paralegal. She moved from her small hometown, to a large city to take a well-paying job in a large law firm. While living in the city, Tammy met a young man, John, and they started dating.
After several months, Tammy was pregnant. The couple was thrilled and began planning a wedding for the following spring. Their excitement was interrupted, however, when John’s National Guard unit was called up and deployed to Iraq. John suggested that they get married before he left, but Tammy was determined to have her dream church wedding.
Tammy was excited about the baby, but a little sad that she would be so far from her family at a time when she needed supports. She knew, however, that her income in the city would be much higher than any kind of work in her hometown. As she waited for her first born and her fiancé’s return, Tammy began planning for how she would continue her career after the baby. Then tragedy struck. Tammy was notified that John was killed in action in Iraq. Since they were not married, she was not eligible for any benefits from John’s civilian job. She was now on her own to await her baby’s birth.
Tammy’s son, William, was born very early—at 29 weeks of her pregnancy. He spent weeks in the intensive care nursery. Tammy had to return to work before he could come home—she needed the income and she had health insurance for William and herself through her employer. She spent her evenings and weekends with William at the hospital. Finally, he was ready to come home.
Tammy’s first challenge was to find child care for him—he was so frail and several child care providers were afraid to take him in. She did, however, finally find someone. But soon, William was having a variety of health problems and was not developing as expected. Williams’pediatrician sent him for a full developmental and medical evaluation and Tammy was overwhelmed to hear that William was diagnosed with cerebral palsy (CP).
William needed to go to many appointments. Tammy was directed to early intervention services to help her develop a plan for William and connect them with the services they needed. He had medical appointments and also needed to receive services from physical and occupational therapists. However, getting this help meant going to appointments and meetings and missing work.
Finally, Tammy’s boss called her in and told her that her frequent absences were affecting her performance. Tammy asked if she could work part-time on a flexible schedule, but her boss said that would not work for the firm. Tammy regretfully resigned from her high paying job. Tammy’s situation was similar to 27.9% of single, black mothers of children with special health care needs who have had to cut back on working or stopped working due to their children’s health needs. In addition, families of children with cerebral palsy are significantly more likely to have to cut back on work than those of children with other special health care needs. (See graph below). Tammy’s family back home was also struggling and could not give her any financial help.
Percent of Children Whose Conditions Cause Family Members to Cut Back or Stop Working
Children with Special Needs and the Workplace: A GUIDE FOR EMPLOYERS
Initiatives Regarding Inclusion of Children with Special Needs in Child Care
Tammy started working part time at a local convenience store, since the owners were understanding of her situation. Tammy applied for and got Medicaid coverage for William—like 61.2% of black non-Hispanic children with special health care needs with a single mother, she and William were now living at less than 200% of federal poverty level. (In comparison, only 29.3% of white, non-Hispanic children with special health care needs with single mothers lives below 200% of the federal poverty rate.) See graph.
Percent of CSHCN Living In Families Headed by a Single Mother Living Below 200% of FPL
Within all black families of children with special health care needs, those that are headed by a single mother are much more likely to be poor (under 200% of federal poverty level)—75.7% of single mother headed families are poor compared with 41.2% of all other family structures. (See graph)
Tammy considered moving back home where she would have more help from her family, but decided against that idea. William needed many special services and her home town had none of the specialty doctors needed. She would have had a hard time traveling back to the city every time William had an appointment.
Percent of Black Children with SHCN Living Below 200% of FPL
Information about CSHN in rural areas
Rural Medical Home Improvement Project, Communities of Excellence Reports:
Tammy wonders how her dreams for her future evaporated so quickly. If she could find some reliable child care for William, she might be able to return to her profession.
More importantly, if she could have some help in both his day-to-day care and in coordinating all the appointments and meetings, she could again work at a job that would better support her and William. She also worries about her dreams for William’s future and with good cause. According to the 2005/2006 National Survey of CSHCN, children with special health care needs of single, black mothers are far less likely than children from all other family structures and from all racial groups to receive necessary services for transition to adulthood.
The following questions can be used to discuss the issues raised in this Data Vignette:
