By LAURA SCHWARTZMAN, Capital News Service
ELLICOTT CITY - Kim and John Nupp, both 37, haven't had a good night's sleep in years.
Their sons, Benjamin, 9, and Jacob, 6, have a rare genetic disorder that disrupts cholesterol absorption, which affects their sleep. But that isn't the only thing keeping them up at night.
"I would say that we're making do with things as they are right now, but my concern is five, 10, 15 years down the road," said John Nupp, whose sons need full-time supervision because of their disabilities. "Just financially and emotionally."
They've been on the state's developmental disability assistance waiting list for five years and rely heavily on help from Glen Mar United Methodist Church, where John is an associate pastor, and from friends and family, including their 12-year-old daughter Emily Nupp.
Their situation, according to advocates, isn't unusual. As of January, there were 17,250 children and adults on a state waiting list for support services such as care or employment programs, according to the Maryland Developmental Disabilities Council.
Maryland's disability spending ranks 44th in the nation when viewed as a portion of statewide personal income, according to a University of Colorado study.
A number of families are planning to rally for more support in Annapolis Thursday at a House of Delegates budget hearing. Advocates will testify in support of a 5-year commitment from the governor to eliminate the waiting list, although a strained state budget could make the initiative a difficult sell.
Several state officials could not be reached for comment Wednesday evening.
Michele Hart of Hunt Valley, who has two special needs children, said she hears "lots of tragic stories" from families who have few resources. She had to hire private help after the birth of her second child, despite eligibility for state services.
In the Nupp's living room, their blonde-haired, blue-eyed boys mingled with advocates at a press conference and banged on a piano with a yellow WWW.ENDTHEWAITNOW.COM banner taped to it.
Moving is not an option for most families, said Hart, who has considered relocating to a state with better services. She and other advocates are especially dissatisfied with the state for spending money on institutions.
"We don't see institutions as a choice," she said. "It makes all-around economic sense to provide people with in-home support."
Kim Nupp, who stays at home with her children, said securing outside funds to assist in their care is in itself a "full time job." She recently received $1,500 from United Healthcare for Jacob's dental surgery, which was not covered by their insurance, but the family is still strained financially.
Medicine, special foods and other costs related to the care of her sons come to about $10,000 a year, she said.
Although disappointed with the waiting list, John Nupp praised the state's public education and access to specialized health care at the National Institutes of Health and Kennedy Krieger Institute in Baltimore, two of only a few centers nationwide that study the boys' disorder, Smith-Lemli-Opitz syndrome.
John and Kim Nupp have lived most of their lives in Maryland and have no plans to relocate.
"There are a lot of good reasons to be here," John Lupp said.