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Advocacy as Art

Beate Sass Shines a Light on Medicaid Waivers and the Adults who Benefit

Carmen Hinkey | April 2015

A man with developmental disabilities gets assistance from his therapist while using adaptive equipment acquired through the Medicaid waiver program. If you look up ‘Medicaid Waiver’ on the internet, you’ll find the four primary types available to states across the nation. You’ll also find myriad links and sites available to aid the application process, and the collateral industry that has emerged to facilitate these programs. If you’re like me, you’ll soon be lost.

For parents of adult children with developmental disabilities though, waiver programs can mean the difference between hope and despair—if they’re able to navigate the system and secure the essential funding from a dwindling pot. What’s needed is more awareness, more advocacy on behalf of these families. 

As in so many situations, it’s names and faces that transform columns and figures into real people, waiting for real assistance.  John, Mona and Michael are adults with developmental disabilities in Georgia who are on waiting lists for Medicaid Waivers. Their stories, and others’, have been beautifully documented by Beate Sass on her website: http://www.realstoriesrealpeople.org/. Physical therapist, photographer, and mother of a special needs daughter, Beate Sass draws us into her world of advocacy as an art form. The photos are so beautiful they’re worth taking time out of your day to appreciate them (and share them).

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