Summerville legislators heard from more than 100 people on Sunday about how $48 million in cuts to the South Carolina Department of Disabilities and Social Needs (DDSN) would adversely affect their families and force many to put their children into resident care facilities.
Parents made it clear that the services provided by DDSN allow them to care for their children in their own homes and allow children to live as full and functioning a life as possible.
Legislators here and across the state heard their concerns loud and clear, and on Monday, the statehouse overwhelmingly agreed to pump $173 million in enhanced Medicaid matching funds into DDSN to cover a shortfall in funding this year. The measure still needs to be voted on by the Senate and is only a temporary fix.
“At this point, what we would ask is (that people) thank their house member for the restoration (in funds),” said Lois Mole, Director of Government Community Relations with DDSN. “The action would allow us to maintain our (Medicaid) waivers.”
Despite the boost from federal funds, some $48 million in state cuts that have already been made will continue to stand, Mole said.
“There are some services that have been reduced this year (and) we will not be able to restore (them) because money was cut back in December,” Mole said.
Letters that families have received about a reduction or elimination of services due to funding cuts from last year are still in effect, unless legislators can find money from elsewhere and allot it to the department, Mole said.
Residents in Summerville urged legislators to do just that on Sunday, saying the cuts are devastating to families who are trying to do what’s best for their disabled children.
Families described the tiresome and often grueling world of caring for children with disabilities. They said their saving grace is the services provided by DDSN.
Julia Martinelli explained the elaborate process of caring for her 22-year-old son, Richard. Her son is severely mentally and physically disabled and requires 24-hour care in order to live. At 4 a.m. every morning, Martinelli and her husband take turns moving their 98-pound son from his hospital bed to a mat in the living room.
They change his diapers, insert a feeding tube into his chest and exercise his legs to help control his daily seizures.
Martinelli and her husband have both arranged their work schedules in order to be able to take care of Richard. Richard attends a medically-supervised daycare facility through DDSN for 12-15 hours each week and a state-paid qualified caretaker comes to their house each week to assist with their son’s care.
DDSN also provides regular supplies such as diapers, syringes and latex gloves to the family. The Martinellis rely on these services in order to keep their son in their home.
“Keeping our family together is our main priority,” Martinelli said. “We can do that because of DDSN.”
More than 500 people signed a petition urging legislators to continue services for the disabled. The state agency serves more than 30,000 people statewide. The Summerville meeting was held by the South Carolina Citizens for Disability Rights.
“We pay taxes (for these services),” Martinelli said. “We don’t ask for a handout. We fear that there is no help for Richard, or our loved ones.”
Ten other families told their stories, and outlined the services that DDSN provides for them, such as helping children with mental disorders, like autism, be able to function on the same level as other children.
Tabetha Hicklin, whose daughter has Cerebral palsy, explained that success her daughter has had with weekly in-home early intervention services from DDSN.
“(They) started teaching her how to move her right arm and leg and taught my daughter how to speak her first words,” Hicklin said, after pausing to wipe away tears.
“A trained professional could look at her needs that I could not. It enabled her to make significant progress.”
Hicklin said she received a letter from DDSN that those early prevention services would not be continued after April 16.
Parents said those cuts would put an extra load on the public school system, which would have to provide more special education services in order to teach these children.
“Don’t be naive to think that these cuts won’t affect the school system,” said Michelle Sherwood.
Resident Jerry Musselman said DDSN provides a group home in Summerville where his adult son can live in staffed environment and be a functioning member of society.
“He has a life of his own that greatly adds to his self-worth,” Musselman said.
Due to budget cuts, Mole said group homes will be reduced by 96 beds statewide.
She said the department will also eliminate early intervention services to children at-risk for mental disorders and will only be able to provide services to children who have been diagnosed by a doctor.
“We’ve eliminated some child development services, some respite care, in-home support, and specialized Medicaid waivers across the board,” Mole said. “DDSN had no (other) choice.”
Many parents said that if services are cut, disabled children will be forced to go to an institution or into foster care.
“It will put parents in a situation where they will have to have taxpayers pay for substandard care,” said Hank Osborne.
“They’ll be homeless on top of being handicapped,” added Jennifer Vought.
Parents suggested legislators raise taxes on cigarettes, sodas and potato chips in order to raise revenue in order to fully fund DDSN’s services.
Summerville State Rep. Annette Young said she heard the parents’ concerns and said house members were in favor of funding the department with incoming federal dollars.
“We will be fighting for you and your kids,” she said.
Summerville Senator Mike Rose said he would push to cut anything in the state budget he deems unnecessary in order to fund DDSN.
While he is in favor of the state paying to conserve wetlands, for example, “If it comes to (funding) that versus what we’re talking about (here), I’d fund this... I love art, but I’ll cut art (departments and programs).”
He said the needs of disabled children and family members should come first.
“There are no words to express out empathy (for what) we have seen and feel,” he said.
Osborne, whose 5-year-old son was born with a genetic disorder, said all parents want is to be able to continue to care for their children in their own homes.
“We do what we do (for our children) because we choose to,” Osborne said. “We love them like no one else will ever know.”
For more information about the local citizens for disabled rights group, email Julia Martinelli at JuliaBMartinelli@gmail.com or call 843-871-6883.