Monday, Dec. 15, 2008 | 2 a.m.
A Las Vegas woman is joining the Army, calling it the best way to get health care for her disabled infant — treatment the state is supposed to provide, but isn’t.
Emily Spahr, 25, says she expects to be in Warrior School next month, leaving her husband to care for their two children.
Nevada gets money from the federal government to provide specialized care for medically stricken toddlers such as 3-month-old Owynn Spahr.
But the program has grown more expensive for the state to operate, and officials say budget shortages are forcing them to withhold care for the young children. In fact, they say they’re hesitant to inform parents of disabled children of their legal rights — including that the caretakers could be reimbursed by the state if they get the therapy elsewhere — because of the cost to the state of providing the service.
Owynn was born with Cytomegalovirus (CMV), an infection that can cause mental retardation, loss of hearing and sight and other problems. Doctors say Owynn needs immediate therapy to ensure he reaches his full potential.
Owynn and about 450 similarly disabled children younger than 3, with such disabilities as Down syndrome, autism, cerebral palsy, blindness and hearing impairment, have been languishing on a waiting list for as long as a year for services to which they’re entitled.
Spahr says she won’t wait any longer for her son to get the help he needs — thus, this week she’s reenlisting in the Army, in which she had served before she and her husband, William, became parents.
Karen Taycher, executive director of the advocacy group Nevada Parents Empowering Parents, said the failures of the state’s early medical intervention program have created a crisis of profound proportions for families that qualify for help but are not getting it from the state. Waiting lists are not allowed under federal law, she said.
“Research shows over and over that early intervention is key to having these children develop their potential,” Taycher said. “If you catch these kids early they do not need the amount of care for the length of time than if you don’t catch them early.”
The state has been out of compliance with federal law for months. In July, the Nevada Disability Advocacy & Law Center, a federally mandated organization funded by government grants, filed an administrative complaint against the state on behalf of all children who have not received the services they require under the Individuals With Disabilities Education Improvement Act.
The law is the same one that requires public schools to provide adequate services for children with disabilities. It requires the state to develop an individualized plan to treat each eligible child, and to initiate it within 30 days. Each of the 450 children on the waiting list has an individual treatment plan prepared and is waiting for the state to enact it.
Early intervention services are vital because developmentally disabled children who go without treatment become more disabled, and thus more costly to care for, over time.
In November, the state responded to the advocacy group’s complaint, saying it didn’t have enough money or staff to adhere to the law. According to the investigation of the complaint by the Nevada Office of Disability Services, the state has increased its spending on the early intervention program every year, from $7.3 million in 2004 to $15.8 million in the current fiscal year. But the federal allocation has remained flat, rising from $4.1 million to $4.2 million in the same time frame.
Mary Wherry, deputy administrator of the Nevada State Health Division, said enrollment in the early intervention program has grown by 92 percent since 2004 and it’s difficult to comply with the federal law when the federal government does not begin to cover the costs.
The investigation report put it bluntly: “This is a classic federal unfunded mandate.”
The state’s response has not satisfied the advocacy attorneys because parents of children awaiting therapy are entitled to compensation for costs they’ve accrued out of pocket, or in case the children need extra services because the disability was compounded by the time spent without treatment.
But the state does not notify parents of their right to compensatory services, and that’s a failure in its responsibility, said Ruth Miller, a rights attorney for the Law Center.
“Our position is clear: Notify families of how many days they were without services and then tell them how many days they have a right to compensatory services,” Miller said.
Wherry said notifying parents of their compensatory rights would come with a cost: “Right now, if every family were educated about the compensatory services opportunity, we could be at risk for a significant amount of expenditure,” she said.
The state estimated that four months of compensatory costs to the families in the program would total $500,000. In today’s climate of budget cuts that would mean significant reductions to other state services, Wherry said.
The Law Center wants to help the hundreds of families on the waiting list file individual complaints to get the services they deserve, Miller said. But the organization doesn’t know the families’ identities.
The Law Center has also considered a filing for class due process, which would include a formal hearing where each side would make its case to a hearing officer.
The state is proposing its own remedies. A bill in the upcoming legislative session will propose requiring people to bill their insurance companies or pay a fee based on a sliding income scale, approaches taken in other states to cover the early intervention program costs, Wherry said.
Wherry said a more radical proposal is also on the table: refusing the federal money so there’s no obligation to follow federal law. Opting out would eliminate the risk of paying out high compensatory costs, or the risk of getting sued for violating federal law, Wherry said.
Opting out of the federal program would do little for the hundreds of children like Owynn Spahr, who needs therapy now.
William Spahr, whose jobs have included telemarketing and stocking store shelves, said he can’t get a job with benefits because of the recession, and he can’t enlist in the military because he has metal plates in his arm from an old injury.
Thus, Emily feels the urgency to go back to the Army, where she served as a mechanic for three years.
Sitting in the family’s cramped off-Strip one-bedroom apartment with Owynn on her lap, she says she has no other option but to return to the military. Emily is holding back tears at the thought of leaving for training and possible deployment.
Nevada has failed them, the couple say.
“I love the Army but it’s not what I want to do right now,” Emily Spahr said. “It’s the best I can do and I’m willing to do it, but it just doesn’t seem right that I have to do it.”