Systems Generated Trauma
Janet Fluker, M.Ed., M.S.
As a parent of an adult with disabilities and an advocate in the disability community, I try to keep up with the latest research in this area. I recently read an article that stopped me in my tracks. Cerebra, a charity organization out of the UK that works with families of children with disabilities, posted their most recent research on Systems Generated Trauma.
What is Systems Generated Trauma?
“Systems-generated trauma is the harm caused by the policies and practices of the public services that families are forced to navigate. While often unintentional, this harm stems from deep-rooted problems that turn the act of seeking help into an ordeal.” The narrative around the challenges faced by families has often focused on the child’s disability and the parent’s resilience. From the research done in this study parents have shared that the biggest obstacles they face are the systems they must navigate to get the care and support they need for their disabled child.
How do these systems create trauma?
1. Different parts of the system work separately and fail to communicate which makes it incredibly difficult for parents to navigate. (I personally spent several hours last week trying to get a question answered about my daughter’s Medicaid. Each part of the system blamed the other for the issue!)
2. Parents are often met with suspicion and made to feel blamed for their children’s needs. Their expertise as parents is not honored and their requests are viewed with suspicion or entitlement.
3. The research showed evidence that agencies consistently fail to take action to reduce known harm even when the solutions are simple. Parents encounter a deep-seated reluctance to act and professional indifference.
4. The system focuses on saving money rather than giving the support that families need. This turns applications for support into a combative legal process.
The harm caused to families affects their physical and mental health, causes financial hardship, disrupts education for their child and damages family relationships. Some parents reported that the pressure led to suicidal thoughts.
There is much work that needs to be done to change the systems within which families are forced to operate to support their child. In the meantime, parents need to be aware that they are not to blame for many of the difficulties they encounter when they seek help. It is important that parents reach out to others for support as they navigate these systems. Other parents of children with disabilities are the best source of information and ways to “work the system”. There are organizations that will assist parents; The Bobby Dodd Institute has webinars that will educate you Bobby Dodd Institute: Illuminating the Possibilities in Disabilities and FOCUS (Families of Children Under Stress) offers free support groups for parents.
Also, individual or family counseling can be a helpful resource as you navigate the pressure of your situation.