Brent Debnam wants nothing more than to live on his own, but he needs a nurse?s help ? and more than 17,000 people are ahead of him on a waiting list for developmental disability services.
“I do have dreams, and for most of our life, it?s been just me and my mom,” said the 18-year-old Montgomery College student Wednesday.
“She?s had to handle a lot of heavy lifting, like lifting me into bed, and it?s taking a toll on her. I want to take some pressure off her and let her live her life.”
He was among a group of advocates from the “End the Wait Now!” campaign who met at the Nupps residence in Ellicott City to discuss the challenges they face without state funding for critical services, such as in-home caregivers, behavioral services andemployment.
The advocates, who are expected to testify today in Annapolis, are asking Gov. Martin O?Malley to provide $10 million in his supplemental budget and commit to five years of funding to whittle down the waiting list.
Maryland ranks 44th in the country in spending on development-disability services, and the waiting list has grown by 900 in just the last six months.
“There?s talk of cuts to the small amount of money we already get,” said Cristine Marchand, executive director of the ARC of Maryland, an advocacy organization.
The state provides $2.7 million for about 51 percent of people on the list who are categorized as “in crisis” and most in need of services. Other people can expect to wait a decade for services, Marchand said.
Kim and John Nupp, both 37, have been waiting for five years. Their two sons Benjamin, 9, and Jacob, 6, have Smith-Lemli-Opitz syndrome, a developmental disorder characterized in part by small head size, learning disabilities and behavioral problems.
The parents pay a total of $10,000 a year to accommodate their special needs. Jacob only can eat pureed baby food, and Benjamin uses a hearing aid. Both boys need diapers.
“We spend so much on the things we need, that we can?t afford to send them to camp and let them just do the things other kids their age are doing,” Kim Nupp said.
Marchand said the $10 million, though it would be matched by the federal government, is still not enough. Advocates originally asked for $40 million.
“These people aren?t asking for handouts,” she said.
“The list is growing, and the longer the state puts this off, the greater the need there is.”
