Opinion Piece, published in The New York Times
My daughter, Lauren, turned 40 last month. She is happy and healthy. And that is nothing short of a miracle.
These brutal seizures would continue, poorly controlled, for the next 19 years, roiling her developing brain and necessitating an ever-shifting regimen of medications with punishing side-effects, of surgeries and hospitalizations. More than once, we feared we would lose her.
Lauren’s doctors finally found a cocktail of medications that would work to subdue the seizures, but the battering her brain took from the ordeal left her with significant developmental deficits.
Today, Lauren faces another battle, not with epilepsy or the toll it’s taken, but with policy changes that could deny her and others with intellectual disabilities the life they choose in concert with their families and loved ones.
The issue is federal Medicaid funding to states, which helps underwrite residential facilities for people with intellectual disabilities, and the conviction of some advocates and policymakers that larger settings like Misericordia should be discouraged.