No, it’s not the life we envisioned for Lauren the day she was born, a seemingly healthy, bright-eyed little girl. But looking back at the obstacles she’s faced, she’s thriving in ways that once seemed impossible.
Lauren shares an apartment with two other women in a bustling dormlike setting on a pleasant, leafy campus. She and her friends walk to nearby shops and restaurants. She has vocational activities and jobs on campus and off, which have given her a sense of worth and responsibility. She sings and signs in a choir, takes art and cooking classes, and hits the fitness center or pool every day.
While she has the care and supervision she continues to need — and always will — she also is more independent than we ever could have hoped.
Most of all, she is happy. Genuinely happy.
I wish that were the end of the story.
But 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.
The debate is rooted in an ugly history. For generations, Americans with intellectual disabilities were too often sent to large institutions where they were warehoused, abused and deprived of the opportunity to live their fullest possible lives.
I am profoundly grateful for the disability rights movement that has waged a decades-long battle to shutter such institutions, many of which were run by the states, and to win for people with intellectual disabilities the right to live in small apartments and homes with services in residential neighborhoods.
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