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Pam and Michael Burke cared at home for their son, Ryan, until he was 16. He then entered a group home. Ash Daniel photo
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Ivan Alzuro, with daughter Cameron, turned his house into a group home for her long-term care. Jay Paul photo
It's not easy to stand in front of a Henrico County Juvenile and Domestic Relations Court judge and calmly explain why it's sometimes OK to wrestle your 19-year-old daughter to the ground in a headlock.
Ivan Alzuro found himself doing exactly that, appearing in May before Judge N. Kendall Newsom while facing an assault charge.
"Not guilty," said Alzuro, uttering the well-worn phrase in a strong, clear voice nearly two months after his arrest on charges that he'd allegedly attacked his autistic daughter, Cameron Alzuro, while a petrified home-health-care aide watched.
Sidebar The Mysteries of Autism
Luckily, the hearing passed quickly, unlike the months that followed as Alzuro has sought to rebuild his life and business after television reports of his alleged crime. The judge admonished prosecutors and dismissed all charges against Alzuro.
"Thank God," said Alzuro, an edge of defiance in his voice as he sat with supporters and family in a North Side restaurant hours after the dismissal, nursing a soda. His phone rang between bites of hummus on pita bread. His ex-wife, apprised of the judge's verdict, had decided not to seek custody of Cameron. In fact, she would be bringing "Cammy" home immediately.
To say Cameron looks just like any other girl is to ignore the obvious. Big-boned, with a swimmer's powerful build, she has piercing dark eyes that stare just beyond what she's looking at. Her slight overbite is made more pronounced by the fact that her mouth is nearly always open. She's uninhibited, lolling on the ground, her face partly obscured by a shock of curly, almost black hair.
Diagnosed as autistic when she was 2, Cameron talks, but only in quick, often cryptic bursts. She's shy even around those who've known her for years, but she lights up with enthusiasm when listening to music or surfing the Web.
When she was younger, her father describes being helpless to stop her occasional piercing screams that sounded "like Jurassic Park dino raptors." She also bangs her head and frequently runs off, two autistic symptoms that help explain what Alzuro did to his daughter that led to his arrest and courtroom drama.
That drama ended about as well as Alzuro could have expected, he says, but he worries that societal misunderstandings like the one that left him staring down a legal nightmare should be of concern to other parents caring for now-adult children with autism.
"I want to thank the people at Adult Protective Services for trying to prove a point," Alzuro said months later, referring to the county agency that initially had him charged with assault.
Hovering over a pot of meatballs that would be Cameron's dinner for the evening, he was circumspect about the plight of families who are forced to use tactics on 19-year-old kids like he had to use on Cameron.
"When you're chasing after her, screaming at her because she's going to get hit by a car, what does that look like?" Alzuro asked, answering his own question: "Old guy, going to beat his kid."
It's easy, he says, for people to judge. But at the end of the day, there's nobody left taking care of Cameron but him.
So who takes care of Cameron, and the thousands of other Virginians diagnosed with an autism spectrum disorder when their parents are too old to do it? And how do you make society understand why a seemingly full-grown adult with autism might need to be disciplined like a child?
Alzuro and parents like him aren't the only ones losing sleep over questions like these. State and mental health leaders are facing a looming issue of how to ensure quality long-term care for an expanding population.
The bucolic grounds of St. Joseph's Villa are a Mediterranean-style respite from the North Side hustle and bustle off busy Brook Road. Cameron Alzuro and a few dozen other autistic children play and learn in a low-slung building toward the front of the property, incongruously plain among the granite-walled and green tile-roofed architecture of the rest of the facility.
Cameron is on the floor with one leg kicked up in the air to show off her shiny new boots: "Black combat boot!" she repeats enthusiastically. Other kids sit quietly watching Lion King in a nearby room. In yet another room, an older teen entertains himself, barking and slapping the backs of his hands together before letting loose with a wordless song: "du-du-de-du-du-de-du-du-du-du."
St. Joseph's Villa is one of a handful of nonprofit organizations that offer support to parents of children with autism. Kids like Cameron are high-functioning — her dad hopes that one day she'll live independently in a group home. Others enrolled in work-study programs through St. Joseph's are so advanced that they likely will never be identified later in life by their co-workers or neighbors as autistic.
For the boy singing in the lobby, a less certain future awaits.
"One of the frustrating things is all these kids have such great support until they age out [at about 23] — and then the funding just dries up," says Bruce Cauthen, spokesperson for St. Joseph's Villa. "We as a society need to figure out how we're going to ensure quality of life for these people."
The quality of homes for people with autism as they grow older is on the minds of state and private mental health professionals.
Based on the increase in autism spectrum disorder diagnoses, Virginia and the nation have a hefty societal and financial burden heading their way. At least one recent study cited by the Centers for Disease Control estimates the lifetime cost to care for an individual with autism spectrum disorder at $3.2 million.
In a 2007 study published in the Archives of Pediatrics & Adolescent Medicine, Dr. Michael L. Ganz estimates that autism costs "our society upwards of $35 billion in direct … and indirect costs to care for all individuals diagnosed each year."
The Autism Society sets that figure even higher, estimating an annual cost of $60 billion, while predicting $400 billion yearly a decade from now.
And it's easy to see why parents feel the financial burdens of caring for their children nearly as acutely as the emotional ones.
Several thousand Virginia families have applied for state waiver money that can be applied toward private services, but many remain on the waiting list because there are only but so many waivers made available by legislative mandate. Currently about 9,300 people are aided by the state waivers, and 6,000 or so are on the state's waiting list. Waivers were created as a means of getting people out of institutions where, in decades gone by, they often were warehoused and forgotten by society at large.
In July 2009, the Virginia General Assembly's Joint Legislative Audit and Review Committee produced a study of available autism services and laid out 21 recommendations for the future. How services are delivered remains a confounding process, the study found.
"Although multiple programs and funding sources support Virginians with [autism spectrum disorders], they tend to be inadequately coordinated at the state, community, and individual levels," the report reads.
It's a conclusion that Lee Price doesn't dispute. As director of developmental services with the Virginia Department of Behavioral Health and Developmental Services, he has his own difficulties navigating the system.
"At one point in time, I was describing our system to a class at VCU, and many [students] were parents of children already experiencing this system," Price recalls, recounting a course where he was explaining components of the complex waiver system used by the federal and state governments. "One [student] raised their hand and said, ‘Look, I don't understand it already, so how is the general public supposed to understand it?' "
Another JLARC report finding said that "Virginia has lacked a mechanism through which to develop public policy that supports its vision for serving individuals with [autism spectrum disorders], ensure that resources are used as efficiently as possible across programs and agencies, promote the effectiveness of services, and address service gaps."
"There's a glut coming," says John Toscano, president of Commonwealth Autism Service, predicting that society is going to have to play a lot of catch-up, or its current lack of resources will swiftly overwhelm it.
Among the JLARC recommendations, Toscano says, was developing protocol and training for first responders who, when encountering someone with autism, can't always expect that individual to act as they'd expect or to follow simple commands or instructions.
"If you think about people out in the community once they're adults and think about who they might encounter, it's easy to see how it may go awry," Toscano says, recalling one instance "years ago" in California when police confronted a man in an alley who refused to respond to verbal commands, panicked and charged police. "The police discharged [a] weapon. Sadly, you just get tons of those cases."
But with training, bad outcomes have been avoided, he says, pointing to a recent case in Virginia Beach where police encountered an autistic man in his underwear snapping off car antennas on Atlantic Avenue.
"In a situation like that, there's a temptation to do a takedown," Toscano says. Instead, "the officer was trained, and she consulted her training. The story ended nicely."
Ironically, Toscano says, even though misunderstandings like the one that led to Alzuro's arrest are caused by a lack of societal understanding, overall ours is a community that is far more aware of people with autism spectrum disorders simply through exposure. Nearly everyone knows a family that is in some way touched by autism.
"In an odd way, that's sort of the good news," says Toscano, who himself was in the field for 18 years before his own grandson was diagnosed with autism. "We're probably more tolerant now because of the prevalence."
Vast improvement in diagnosis as well as in legal protection through federal laws like the Individuals with Disabilities Education Act that mandates "mainstreaming" of students with disabilities in regular classrooms means more kids with autism receive higher levels of education, understanding and services. Early intervention and treatment for high-functioning people with autism can eventually lead them to high-paid professional jobs, independent living and families of their own. But not all parents with autistic children can expect the best-case scenario.
Michael Burke speaks softly in clipped tones tinged with a wistful sadness of one whose life is on a far different path than the one he'd planned.
"It literally almost killed me, almost put me in the grave," Burke says about the years he and his wife, Pam, spent raising their now 24-year-old son, Ryan.
The family room of their Henrico County home is spotless and well-decorated. Nearly every shelf contains smiling family pictures of Michael and Pam with Ryan.
It wasn't too many years ago that the walls of the Burke home remained bare, the photos kept tucked away. Ryan's parents, stretched to the breaking point, were sleep-deprived and at wit's end just to keep him safe.
"He would throw the worst temper tantrums," recalls Pam, who struggled to watch her son have fits where it appeared he was in horrible pain, clutching at his ears. "Once on I-64, he jumped out of the back seat and started choking me. I lost my temper and told him to sit down and shut up. My son is mostly nonverbal, but that day he said to me, ‘I can't — I just can't.' He was letting me know, ‘Mom, I would if I could.' "
It's hard to judge exactly what level of understanding the Burke's only child has of the world around him. A tall, lanky man who still has the gawky but handsome features of a teenager, Ryan lives in an assisted-living group home near the Lakeside area of Henrico. Dressed in jeans and a yellow shirt, with a neatly parted head of dark hair, it's easy to assume he has no developmental problems, but then you catch the repetitive thumb-tapping, the rocking back and forth from foot to foot and the frequent outburst of high-pitched laughter.
"He's still not potty trained fully," says his father. "That's been a real problem over the years."
Michael and Pam worry endlessly about what will happen to their son when they die.
"He's a great kid, but there's no future for him," Michael says, sadly. Both say they're currently happy with the house Ryan shares with four other adults, each of whom lives with some form of autism spectrum disorder or mental disability. The home is one of about 1,070 privately operated group homes in the state, a reflection of Virginia and the nation's move away from institutional settings and toward a "community-based model" of care, in which residents are more integrated in the community where they live.
Trouble comes in the way of management inconsistencies. "Over the years, we have been pleased, and we have been very displeased," Burke says. "The key to a successful group home: It's all about who are you going to hire, how much are you going to pay these people, how much are you going to train these people."
Burke estimates that turnover at the home where Ryan lives currently comes about every six months or so. "Everything's happy right now, but six months from now? God, help us all ... I'm just telling it like it is."
Folks at the Faison School are thinking about this need for appropriate residences. "We want to build a community where everyone can live together and help each other," says Wendy Kreuter, vice president of operations at Faison, outlining the school's vision for a 45-apartment complex on West Broad Street near Willow Lawn on the site of the former Executive Motor Lodge.
The planned apartment complex really would be like nothing else in Virginia, says Toscano, lamenting the scarcity in Virginia of residential-placement options for people with autism compared to the projected need.
According to Kreuter, Faison's plan draws somewhat on a mixed-use community concept. The mix of uses wouldn't be residential and commercial, but instead all residential, with some units set aside for nonautistic residents.
"We want folks with developmental disabilities to be able to live with typical peers," she says, envisioning "teachers and police officers and firefighters and typical folks in helping professions" choosing to live in the apartment complex alongside autistic clients of the school.
For its autistic residents, a variety of therapeutic services would be available.
Those services might be somewhat underwritten by rent payments from nonautistic residents.
It's unclear whether the opening of new group homes can or will keep pace with demand, or whether available waivers will increase sufficiently to help defray costs for cash-strapped parents.
Before the Burkes were able to get a waiver that covers most of the cost of Ryan's care, they say they teetered near bankruptcy. There's no particular reason why they didn't receive a waiver before Ryan turned 16, Burke says, a common story for anyone seeking a waiver. While the application process to receive a waiver includes a variety of income and need qualifiers, the process is stalled for many by the simple fact that only so many waivers are available.
And rather than expand to meet increasing need, budget cuts at the state and national levels have meant, in some cases, fewer resources. At St. Joseph's Villa, the weekend respite program that once gave the Burkes much-needed breaks from Ryan's care has been trimmed from more than 700 hours a year to less than 500 hours a year. Since Ryan has moved to a group home setting, the Burkes no longer use this service, but they expressed concern that it was less available to other families.
"We wouldn't have made it without weekend respite," Michael Burke says.
There's an explanation, even if it might not be a good reason, for reducing those hours — cost.
"If you want to look at the cost — the average cost of a ... waiver is going to be about $40,000 per year, per person," says Price of the waiver his department administers, which is used to pay for all manner of care up to but excluding residential placement. A similar state waiver program administered by a different department includes the cost of residential placement. Those waivers can cost taxpayers as much as $76,000 per year.
But the old alternative costs far more, Price says. The state still maintains institutions for the most difficult cases — accounting for fewer than 1,100 patients statewide — where annual treatment costs $216,000 per person.
Price, who entered the mental health profession in 1972, right as the community model of care was gaining prominence, says that even with its weaknesses and its confusing bureaucracy, keeping people tied to the communities where they're from and to the people that they know and love remains the right track.
"We've learned more about how to support people over the years," he says, suggesting that future budgetary constraints will have to be balanced with improvements in efficiency of how care is delivered. "We know that all people can learn. People with intellectual disabilities can learn and develop skills. People with autism can learn and develop skills."
But most of all, says Michael Burke, society's acceptance and understanding will dictate the future for children like Ryan and Cameron.
"It's natural for people to react the way they do," he says, pulling up to a McDonald's drive-through window just as Ryan lets loose from the back seat with a loud machine gun-like fit of laughter and repetitive, awkward hand motions. The attendant in his black visor and drive-through headset turns away, waiting for Ryan to calm down, giving Michael even longer to philosophize: "They're naturally afraid of things they're not familiar with, and they want to look the other way."
Exchanging his cash for two apple pies and a large ice tea for Ryan, he says he just hopes society at large doesn't look away, too.
"I don't think there's enough funding available for all these kids in the future," he says.
His wife agrees, lamenting the most for the families still waiting for funding and for societal acceptance to catch up with their children.
"It breaks your heart for the autistic person, and it breaks your heart for their family," Pam says, remembering a younger version of herself, recently married and on vacation at the beach.
At a restaurant, she remembers staring for a long time with pity at a couple who had a child with a disability. "I remember thinking to myself, I could not do that. I still sometimes stop and think to myself to this day: I can't believe we had an autistic son."
As for Alzuro, he and Cameron are moving on with their lives.
In November, he took a major step toward securing Cameron's future. Before his arrest, Alzuro had been working with the state to have his Henrico County home certified as a residential group home. More recently, he says, he found the right person to oversee the house.
"I asked her, ‘Cammy, how soon do you want me to leave?'" Alzuro says of a conversation with his daughter. "She didn't even hesitate: ‘March.'"
It's a unique solution, and Alzuro says he's happy to have the financial breathing room to make it happen. Most of all, he says, he's relieved in knowing that by placing Cameron in her own home, no group home administrator will be able to determine that Cameron's head banging disqualifies her from living there. "This will be her house."