Story and photo by JENNIFER BISHOP

Hundreds are expected in Annapolis today to support a bill to help pay for vital services for people with severe disabilities.

They’re hoping that when they tell their stories of families struggling to stay together, people will hear them.  

     State Senator Nathaniel McFadden heard them at a recent town hall meeting to discuss the Developmental Disabilities Administration’s community services waiting list. He cried after a dozen families told their personal stories. Dozens more people, many of them adults and children with significant disabilities, filled the cavernous basement of St Michael’s Church in Baltimore City on a cold winter evening. 

     Wiping tears from his face and pausing to catch his breath, McFadden said, “This, and education, are Maryland’s two worst problems.”

     “This” refers to the waiting list of more than 18,000 people with disabilities in need of essential community services through the state’s Developmental Disabilities Administration (DDA). The list has grown to crisis proportions and continues to grow at an alarming rate, as funding has failed to keep pace with need over the past 10 years.

     Maryland is the wealthiest state in the nation, and yet it ranks near the bottom– 43rd– in spending for community support for the disabled.

     Ironically, while DDA community support is not an entitlement option for families, institutionalisation is. So a family in crisis can put its disabled child in an institution, costing the state far more than the in-home or community support families need and prefer.

     Take Mountain Notter’s story. A military wife, she relocated to Maryland four years ago with her two children, while her husband, Ronnie, was deployed to Afghanistan. She has no family in town, and both of her children are autistic. Her 10-year-old daughter, Jasmine, has lots of potential, if she can get the needed intervention. But 8-year-old Noah is profoundly autistic. Sweet-faced and with an impish cowlick, he enjoys jumping and walking outside with his mother. But on a bad day, he punches holes in the walls with his head, and eats drywall. DDA support would mean behavior intervention and caregiving assistance in the home, but the wait makes this help inaccessible. Desperate and faced with only one option, Mountain put her son in an institution.

     He now lives two hours away, and she drives the four hours round trip to see him every three days. When she calls to check on him, the caregivers do not speak enough English to give her much information. When she calls two hours apart, no one remembers that she called before. Her son goes to bed without dinner if he won’t eat at the scheduled time. He wets himself when they forget to take him to the bathroom.

     Mountain Notter wants her young son back home, but she can’t manage that without DDA support. 

     “It sticks to your heart,” said Senator McFadden.

     Today, hundreds of families on the DDA waiting list are expected to appear in Annapolis to support Senate Bill 729 / House Bill 791, sponsored by Senator Rich Madaleno and Delegate Bill Bronrott. These bills propose to update Maryland’s antiquated alcohol tax structure, which dates back to 1955. The income generated from a new “nickel tax” on alcohol would begin to reduce the  DDA waiting list for the first time in a decade, as well as fund addiction recovery programs.

     How much is a nickel worth? A whole lot to Mountain Notter and 18,000 other Maryland families who struggle every day to care for their disabled children.