STATEN ISLAND, N.Y. -- Barbara and Billy D’Amora have three children, but their oldest son, Nicholas, 13, takes up a lot of their attention. Nick has autism.
“Everyone needs a piece of me,” Mrs. D’Amora said. “But Nick needs the most.”
The D’Amoras are one of the thousands of families affected by autism on Staten Island who depend on services funded through Medicaid and other programs to make life a little easier — and Nick is one of the many people with autism here who depend on those services to make his life brighter.
But as more and more children here and nationwide are diagnosed, wait lists for these services are only growing — and funding for programs like Medicaid are continually under threat of cuts or administrative changes.
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Nationwide, one in 110 children have autism, according to Centers for Disease Control estimates. The city Health Department does not track the amount of people living with autism spectrum disorders in New York City, but based on the amount of births each year in the borough and the CDC figures, they estimate that as many as 1,100 people on Staten Island from ages 0 to 21 have an autism spectrum disorder.
Unlike many autistic adolescents here, Nick has the services he needs now — but when he ages out of them at 21, Mrs. D'Amora fears there will be no resources for him and the huge population of autistic children who will soon be autistic adults.
"The services are a lifeline to him," Mrs. D'Amora said. "They afford a family some respite in their life from a disability that does not take a vacation."
Mrs. D'Amora has her master's degree in special education, but even for her, it's hard to balance caring for Nick — a happy, dark-haired young man — with paying enough attention to her other two children, Christian, 8, and Natalie, 7, and nurturing a marriage.
When a respite program worker visits her home, Mrs. D'Amora has a chance to make dinner. When a community habitation worker is helping Nick practice setting the table or buying something at a nearby deli, she can help Christian and Natalie with homework. When Nick's at a day trip with On Your Mark — a program for which he sat on a waiting list nine years, until this summer — she can spend some time with his siblings, or her husband.
But that isn't why the services matter to her.
"It's about dignity and respect for the person who has the disability," she said.
And that's why she's afraid for the future.
BUDGET CUTS
Most people think Medicaid is for the poor, Mrs. D'Amora said. But many states, including New York, offer waivers that provide Medicaid to children with developmental disabilities, like autism, regardless of their parents' income.
Medicaid funds pay for many of the services her family gets, like respite and community habilitation services, and recreation programs. But a change to the state's waiver system, and the perennial threats of cuts to Medicaid funding in Washington have her worried.
A new law signed by Gov. Andrew Cuomo this week will force private insurance providers to cover the treatment of autism spectrum disorders — a big help for many families who must pay for therapies or diagnoses out-of-pocket. But the law applies to things like physical, occupational and speech therapies, not programs administered with Medicaid funds like those provided by the Office for People with Developmental Disabilities. It doesn't apply to the services Mrs. D'Amora is most worried about — respite and community rehabilitation for families, day or quality residential programs for autistic adults, who often do not have private insurance.
"It does nothing for the lifespan of services that people need and deserve," she said.
And as the population of children diagnosed with autism continues to balloon, wait lists for those programs grow longer and longer for families on Staten Island. Nationally, at least 1 million people with intellectual or developmental disabilities nationwide are on waiting lists for services they may never get, according to The Arc's 2011 Family and Individual Needs for Disability Supports (FINDS) survey.
Nick won't be entitled to the services he gets now once he turns 21. Mrs. D'Amora has already started putting him on wait lists for adult day programs so he will have something to do each day when he is grown.
"Without these services, there's no quality of life," she said. "How would you like to be home with your parents your whole adult life?"
THE CUTS HURT
Families are already reporting that the cuts have hit home: According to the FINDS survey, 62 percent of families report services being cut in their communities, and 43 percent said services were cut at their schools. Nearly half of parents and caregivers — 46 percent — said they had more responsibilities than they could handle.
To Mrs. D'Amora, and to many parents like her, the math just doesn't add up: Funding for services for those with autism is in danger of decreasing, while the population increases.
"It's our responsibility to take care of them. You don't cast them aside. The days of Willowbrook are over, and we should never go back to anything like that," she said. "And you should not cut budgets on the backs of those who are less fortunate, the most disabled members of society who cannot take care of themselves."
Mrs. D'Amora is especially worried about how an upcoming change to the New York's administration of Medicaid funds for the developmentally disabled, known as Medicaid Waiver 1115, might affect Nick's current services. According to the Office for People with Developmental Disabilities, the waiver would create "specialized managed care models" to provide medical and long-term services for the developmentally disabled.
But Mrs. D'Amora and others are concerned the change will take away the many choices parents have now about where to seek services for their children, undoing 40 years of progress. And few parents have been attending hearings on the change, she said.
Mrs. D'Amora said little concrete information has been provided to parents about the change — but she has been told that different services paid for by Medicaid, from recreation programs to medical costs, will be pooled together and subject to a cap. She recently discovered Nick's medicines cost up to $1,500 a month, when her pharmacy notified her the family had reached its prescriptions cost limit under their private insurance.
"If my son is using $1,500 a month in the medical part, where does this leave room to have benefits for community rehabilitation, respite, recreation?" she asked. "They can't answer me."
MAKING PROGRESS
The services and technology Nick receives —many of which Mrs. D'Amora has had to fight hard to get, and some of which she seeks out and pays for herself — are vital to his continued progress, Mrs. D'Amora said.
Nick has learned to use a DynaVox — imagine a much clunkier iPad —as his voice. He touches words on the screen of the device's screen, and it says them aloud. Then he repeats the words. Nick loves to eat and cook, and the device is loaded with kitchen phrases and ingredients so he can help make the salad at dinner time.
"We'll say, 'What do we have to do, Nick?'" Mrs. D'Amora said. "He'll make the entire salad."
For a long time, Mrs. D'Amora thought her son was a visual learner. But a trip to Texas, where she and Nick worked with autism education innovator Soma Mukhopadhyay, helped her realize that the reason her son always listened so well to instructions was that he is an auditory learner. They read Nick a story about the history of the Greek marathon, then asked him what 'marathon' meant.
"He spelled out on his device, 'to run for a cause,'" Mrs. D'Amora said. "We were just floored."
Mrs. D'Amora felt like she came home from Texas with a different son. She stopped talking to him in short sentences. He let her know his favorite color is orange, and he's too old to trick or treat this year.
Like any child, Nick ought to be able to have fun, too, Mrs. D'Amora said. Thanks to day trips with On Your Mark, and a teen night at the G.R.A.C.E. Foundation — an organization Mrs. D'Amora helped found — he's made friends. He had his first pool party this summer, and a dozen friends from the teen night came.
"It's so nice for me to be able to tell you my son has friends," she said.
Knowing that her son can have these little bits of normalcy make Mrs. D'Amora rest a little easier. But she still worries about what will happen to him after she and her husband are gone.
"It's no joke when the parents like myself say we need to live forever," she said. "I fear what will happen when I die."
Most days, Mrs. D'Amora and her family roll with the punches, she said. But when she thinks about dying, autism hits her right in the face.
"That can be something that makes you want to not get out of bed in the morning," Billy D'Amora said.
So they work hard to ensure Nick grows into as independent a young man as possible, into someone who is happy and flourishing.
On a recent afternoon, as dinner time neared, Nick opened the refrigerator and looked. Mrs. D'Amora and a community habitation worker asked what he wanted, an Nick gestured to leftover pasta.
Mrs. D'Amora asked him to say what he wanted. He repeated after her, one word at a time: "I want pasta.".
But first, he had to set the table. He made sure to count out five plates, five utensils, and five napkins.