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No money, no treatment
State says it can’t pay for the therapy hundreds of Nevada children need
Sam Morris
William and Emily Spahr share a small apartment in Las Vegas with baby Owynn and his sister, Devon. Owynn, who is three months old, needs specialized therapy for an infection he was born with that can cause mental retardation, loss of hearing and sight and other problems. The state is obligated under federal law to provide or pay for the treatment, but says it lacks the money. To get the therapy for Owynn, Emily Spahr has reenlisted in the Army and will soon be leaving for Warrior School.
Monday, Dec. 15, 2008 | 2 a.m.
Related story
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.”
Discussion: 15 comments so far…
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How much of the governor's salary could cover this child's needs? Because I'll be happy to do the governor's job for free and donate the salary. All our governor is capable of doing, literally, is saying "cut budgets." A 4-year-old can do that; it's nothing special. He does not merit the pay he gets, and that pay should go toward those who really need it.
Parents and guardians of children with disabilities:
There is a new parents' organization starting up in Las Vegas called SNEAK (Southern Nevada Educational Advocates for Kids). 702-773-8808. We are a group of experienced advocates and educators who want to give parents information. In some cases we can provide assistance with IFSP meetings and due process complaints. The special education law (IDEA) says that Nevada Early Intervention Services MUST help infants and toddlers with disabilities. "No money" is not a legal excuse. We are a non-profit organization, and there is no charge for our services. Please call us at 702-773-8808 for more information.
How about Buckley's salary? I heard she makes $300,000 a year by having the state "contribute" millions to her non-profit. Could be true...worth looking into.
By the way the state's total biennial budget is $18 billion...where is that money going?
They shoud reduce Lord Rogers higher ed budget to pay for this.
Lord Rogers just resigned a football coach who has a losing record each year for over $500k.
Also there is this dude that has been caught stealing from the state. Lord Rogers refuses to fire this dude that has been indicted for stealing from the state. There is plenty of evidence against the dude. The dude took a paid vacation for over a year. The dude came back and there were 2 people doing the same job for over $100k each. Then we found the dude in the past spent time in prison for stealing somewhere else. Now the dude has been indicted for stealing again. Guess what....he is back on paid vacation again!!!!!!!
They also can use money from SNWA which is so flush with cash that they are running all kinds of ads promoting their political views on water solutions.
The Convention Authority which has a budget that is 20x bigger than any other Convention center on the planet has cash to spare especially now for they should be delaying all their big building plans.
The fire fighters in Clark County have cash to spare to. Most of them take home over $100k a year and get regular annual raises over 7% per year.
Well according to Guidestar's 2006 990 form for Buckley's non-profit she was paid $170,000 in salary and benefits in 2006.
$670,000 in funding came from government grants.
$2.1 million came from filing fees charged to clark county.
Sounds like a conflict of interest.......
Horsford lives off the government, too, does he not?
Why are you going after firefighters? They risk their lives and keep us safe. Another instance of going after the people who protect us to forward some bizarre political agenda.
Volunteer fire fighters protect lives too.
So do fire fighters working for private or non-unionized departments.
Very few of them make $100,000 to $240,000 a year.
Maybe, oh just maybe, that had something to do with the very high salaries?
and Jfnance,
as far as I can tell, Horsford works for the Culinary Union. His wife runs a non-profit that works with the Culinary Union doing job training. I wouldn't be surprised if government money is funneled to one or both organizations, but I do know that the Culinary Union is the biggest contributor to Horsford's wife's non-profit organization.
I will help put my neighbors house fire out for FREE and we have AMR to take me to the hospital. Firefighters are needed, but at 120K each (plus benefits equates to 240k each) We do not! They work for us and we need to pay them a decent wage and they need to work 20-24 days a month like the rest of us.
Don't any of you public sponges come back at me and say that you make less than the private sector as a government employee. If so, then support the next privatization of your department. I did not think so!
"Steven Horsford is Chief Executive Officer and President of the Board of Trustees for Nevada Partners, one of Nevada's largest employment training and career preparation organizations. Steven also oversees the Culinary Training Academy (CTA), "
http://www.insightcced.org/index.php?pag...
"Nevada Partners" is one of those job training companies that gets tons of money from the government to retrain dislocated or recently unemployeed people.
I am sure that he is going to ride a money train for the next couple of years.
On their partnership page they list:
City of Henderson
City of Las Vegas
City of North Las Vegas
Clark County
Clark County Juvenile Services
Clark County School District
Communities in Schools of Southern Nevada
Department of Employment, Training & Rehabilitation
Governor's Workforce Investment Board
University of Nevada, Las Vegas
Way to go Emily! Finally a parent who is willing to be responsible and do what it takes to provide and protect her family. What a great soldier she will be. It is young Americans like her that make our country what it is and what it will be. Selflessness, duty, honor and committment. She should be proud! I am proud of her.
"Selflessness, duty, honor and committment [sic]."
You, sir, have utterly missed the point, and done so quite spectacularly.
I just wonder Emily has to be the one to re-enlist - is there a reason her husband can't enlist in the Army - call me old school but I believe the man should be the provider and the woman the nuturer. Now if their kid was from some foreign country the doctors, hospitals, drug companies etal would be falling over each other to provide free services so they can get a news story on tv and be touted as 'hero's'. All I can say is shame on the medical field for not being willing to help American children first and foremost.
Just another good reason why we need to stop spending billions where our help is not wanted- Iraq. Forget the Big Three- it's time to bail out the average American struggling along without decent health care.
Yeah I'd say the ole shoe throwing incident and the reaction of the Iraqi masses afterwards tells us what they REALLY think of America now doesn't it? It's time they learn to fend for themselves and I wouldn't give a dime to rebuild any of their country. We gave American lives for THEIR freedom and this is the thanks we get (from them) Send the troops back to America - they'd be better used on our Borders.