Thursday, February 23, 2017


It's really hard to know what we're looking at here.   

"Joseph Bishop, 18, died at Cincinnati Children's Hospital Medical Center on Feb. 11. Bishop, who suffered from Duchenne muscular dystrophy, lived with his mother and grandparents in Ludlow, Kentucky. His mother and grandparents were charged with second-degree manslaughter in his death. "

Is this really a case of neglect or are we looking at the end stages of DMD? Are we looking at criminalizing a family woefully unprepared and ill-equipped for the herculean challenge of DMD or are we looking at a disease that from early diagnosis required a "joined-at-the-hip," step-by-step coordinated effort from the medical community, school districts, and disability support agencies?

On one hand, the end stages of a very aggressive diagnosis of Duchenne Muscular Dystrophy (DMD) does not look good. I'm sure it is shocking for anyone to s
ee a person succumbing to a disease that essentially rots your muscles from the inside. Bed sores, for example, are very common because the muscle tissue is rotting as a result of the disease, not necessarily due to any lacking of care.

On the other hand, Joey's condition upon receiving the diagnosis required medical management of extensive therapies, 24/7 caregiving, alternative education opportunities, and ongoing intervention because there is no "treatment." 

In Ohio, through the coordinated efforts of familiy advocates, Hamilton County Developmental Disabilities Services, school districts, and Ohio DD, children impacted by the most serious of disabilities can live dignified, quality, and purposeful life and in many cases, bridge into community living. 

So my question remains, what happened to Joey? Why wasn't he in school? Why wasn't Children's Hospital Medical Center, certified to manage lifelong care for DMD, in communication? Why didn't the family have support services to call for help when it became clear his needs exceeded their ability to care for him? Or are they like other families caregiving 24/7 and overwhelmed, isolated, and ill-equipped just meeting the basic needs of their child or adult? 

It's a messy and complicated business caring and advocating for kids with special needs when advocating agencies and many school districts operate without adequate funding. Maybe Joey's family can help us understand what went wrong, why they were afraid to call for help, and why he wasn't in school working on a plan to transition into community life regardless of his disability which is guaranteed by ADA & IDEA federal laws.

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