Nevada does not currently allow paid family caregivers for children who are profoundly autistic, but it does for dementia.
Darian Garcia gave up a good warehouse job last month to stay home with his 8-year-old son.
Rico is profoundly autistic, which leaves him with the mental age of a toddler. He’ll need 24/7 intensive support for the rest of his life.
“My husband had to quit his job to stay here with Rico,” Letty Garcia said. “Now we’re down to one income.”
They’re nearing bankruptcy and may lose their Spanish Springs home. If Nevada had paid-caregiver laws like other states such as Colorado and California, the family might not be sinking financially over their son’s disabilities.
“Because he’s legally responsible for Rico, he can’t get paid to be his caregiver in Nevada,” Garcia said of her husband.
But if Rico got placement in a residential facility outside the home, the state of Nevada would have to pay for it — at a much higher cost. It makes no sense to Garcia why the state would have a policy that costs more money.
“If we lived in California and Dad stayed home, we did the math and it would be like $4,000 to $5,000 a month that he would get paid, and that would be cheaper to the state than sending him to an institution,” she said.
Profound autism: Shortage of Nevada disability services threatens to sink Sparks family
Allowing paid family caregivers would require action by the Nevada Legislature, which begins its every-two-years session in February.
If state lawmakers made this relatively simple change, Garcia said, it would improve her family’s life and thousands of others in Nevada who have a profoundly autistic child.
How paid family caregivers could help profoundly autistic children
Having family members be paid caregivers may sound strange, but it’s not uncommon. About 10 states have such programs, and it keeps those with disabilities in their own homes with the people who love them rather than in a facility where they’re one of many patients.
A new Nevada law went into effect this year that allows family members to be paid caregivers for Medicaid recipients with dementia.
Garcia thinks the law should be updated to include families with profoundly autistic children because not only would it help stave off the financial ruin her family faces, but it would be a win for the state, too.
“We’re in the midst of filing bankruptcy and (my husband) can’t get paid to be Rico’s caregiver,” she said. “But if Rico were to go to a placement somewhere, they would pay somebody there to take care of him.”
Colorado is among the states that pays family members to care for profoundly autistic children, in part because, like Nevada, it doesn’t have the facilities and staff to care for all kids who need help.
“I think all families should be demanding that they’re compensated,” said Michelle Linn, a Colorado mom who gets paid $7,300 a month to care for her profoundly autistic son.
“It sounds like a lot, but it’s less than minimum wage.”
Because her son needs 24-hour care seven days a week, her stipend works out to about $10 an hour.
“There aren’t other individuals or businesses willing to do it for that rate, but it’s amazing for the families,” Linn said. “You can make your mortgage payment for your child and then, like, plan for when you die to provide care when you’re gone.”
She said if she got in an accident and couldn’t care for her son anymore, the state of Colorado would view her paid-caregiver role as a bargain.
“There aren’t really even any institutions in Colorado (that could care for her son) so they’d have to send him out of state, which would cost a heck of a lot more,” she said.
To qualify, Linn took free night classes for about a month to become a certified nursing assistant. Then she was hired by a third-party company that oversees about 25 such caregivers. It inspects her home, monitors medication administration by phone app and conducts other oversight to make sure she’s caring properly for her son every day.
“It really helps a lot of families that otherwise would be destitute because you can’t work,” Linn said.
Other ways Nevada could help profoundly autistic children
The Garcias would love it if they could get “respite” care. It provides a break for live-in caregivers by having a professional come into the home and take over for a while.
Rico qualifies for Medicaid, a joint federal and state program that covers medical costs for low-income adults and people with disabilities. Medicaid doesn’t cover respite care, but states can offer waivers that include coverage for respite.
Nevada, though, has restrictions tied to the poverty line, Garcia said, and although filing for bankruptcy, her family makes too much to qualify.
“What Nevada is doing is unique in the way they’ve designed their respite,” said Judith Ursitti, founder of the Profound Autism Alliance and mother of a profoundly autistic son. “The income restriction shouldn’t be there because it leaves out everyone who really needs it. It really should be based on the qualifying disability of the person — and that could be fixed by the state legislature.”
She added that Garcia’s son is never going to make money.
“He is forever individually impoverished because of his disability,” Ursitti said. “That should be recognized. It’s definitely an easy fix that the federal agency over Medicaid would approve right away because most states fund respite care not based on income but on how intense the support needs are.”
Ursitti’s son Jack gets 15 hours of respite care a week. Combined with a public school that takes care of him during weekdays, this allows Ursitti to not only do grocery shopping but to have a job.
“That makes me a taxpaying citizen,” she said.
Could Nevada schools provide better services for children?
Rico is not enrolled in Washoe County School District after a couple of bad experiences, Garcia said, one self-injury left his head gashed open and another where a teacher’s aide was injured.
Ursitti had similar challenges with the schools in Texas where she lived.
“When my son Jack was diagnosed, we struggled to even get our school district to acknowledge he had autism or to provide any kind of support,” she said. “They wouldn’t do anything.”
By federal law, free and appropriate public education must be provided for all children, even those with profound behavioral issues, regardless of whether the school can afford it or how it might affect the overall school system.
“It’s the Individuals with Disabilities Education Act,” Ursitti said, referring to federal law and emphasizing the word “individuals.”
“Funding is an issue and schools struggle. That’s a reality I don’t want to minimize, but this population (of profoundly autistic children) is just being pushed aside.”
When Ursitti got no support from the school system or the state of Texas, she had to make a decision that she said lots of parents face.
“Do I spend a lot of money on attorneys fighting the schools or do I use that money to provide services for my child right now,” she said.
Many parents can’t afford to go up against school districts with their own legal teams, and they can’t wait for years for their cases to work through the court system, she said. So they often keep their child home and deal with the situation in silence, alone.
“The system is completely stacked” against parents, Ursitti said.
She went with a third option. Her husband received a job opportunity in Massachusetts, which has among the nation’s best resources for kids like Jack and Rico.
Within three months of arriving in Massachusetts, the local school had placed Jack in a program for profoundly autistic students with one-on-one support that included behavioral support, speech therapy, physical therapy, everything he needed.
“What it took was moving across the country, away from all of our family, away from our Southern heritage, to a different world,” she said. “To make that move was daunting financially.”
One reason Massachusetts has better services — and something Ursitti suggests Nevada consider — is a special education law that’s stronger than federal law.
“The school districts are aware of that,” she said, “and the services here are better because of it.”
Mark Robison is the state politics reporter for the Reno Gazette Journal, with occasional forays into other topics. Email comments to mrobison@rgj.com or comment on Mark’s Greater Reno Facebook page.
