Tuesday, October 17, 2006
The Next Wave of FRD
As an advocate for people with developmental disabilities, I am always comforted by new information that may increase the quality of life for those with disabilities. This can include health research or support services that encourage inclusion and increase a person’s ability to live as independently as possible.
For instance, in the 1920’s, a person with Down’s Syndrome had a life expectancy of 9 years, whereas in the 1900’s, due to the advancement of medicine and the ability to diagnose at an earlier age, a person with Down’s Syndrome can now expect to live into his/her 60’s.
For parents, educators and other professionals, this is good news. Alas, this is where some of the good news sputters and stops and this is where the Center for WLL’s recent research and coinage of “Family Responsibilities Discrimination” emerges.
A recent study shows that children with disabilities are more likely to live with a single mother than other children (Philip Cohen and Miruna Petrescu-Prahova, "Gendered Living Arrangements Among Children with Disabilities." Journal of Marriage and Family 68:630-638, August, 2006). The study further shows that single mothers care for 17 percent of children without disabilities, while 24.5 percent of children with disabilities are raised by single women.
This is not good for single, working mothers who have a child with a disability. Support services such as speech and language therapists, or neurologists, employ the typical “9-5” workday, forcing women to take time off to accompany their children and advocate for their best care. In addition to the stigma associated with having a child with a disability, a mother could very well alienate herself further from her employer by taking time off during the workday.
Unfortunately, most children with developmental disabilities have associated medical conditions which require more than one ancillary service. For example, a mother with a child diagnosed with Down’s syndrome might expect her child to require a pediatric cardiologist (about half of those with this diagnosis have congenital heart failure, as well as other physical and intellectual difficulties), or a child with autism may have language and sensory challenges.
With the enforcement of Section 504 of the Rehabilitation Act (the legal mandate requiring educational agencies to provide special educational services to a child with a disabilities), mothers have a directive in the annual IEP (Individual Education Plan), requiring supports and services needed by a particular child. However, if employers are unwilling to provide flexible work schedules for these mothers, they will be forced to choose between their employment and their child with special needs.