While the powers that be in Washington DC meet behind closed doors to argue over repealing and replacing the Affordable Health Care Act, here in New Hampshire a couple named Mike and Ann Sanok, who have a son, Alex, now 22, and severely autistic, have been going through health care hell.
Alex, who is over 6 feet tall, has the mind of a 7 year old, his mother says, and for the past several months he has been growing angrier by the day. His anger is increasing because there are no longer any programs for him, here in NH where care for MHMR adults is ‘minimal’ to say the least. So state care workers (whose jobs are on the chopping board in the Senate) have been driving Alex around all day, because there are no beds open in the state’s few residential care facilities. And Alex hates it.
In an article in the local weekly newspaper, Seacoast Online, Jeff McMenemy writes that Ann’s mother says Alex has been so upset he doesn’t want to leave the house, but even at home he lashes out. He’s been breaking windows a lot, and getting his hands cut.
“On the day in question he had been getting worse. He was just angry and smashed a couple more windows. He was just so agitated,” his mother said. “It was almost like he was out of his mind. He’d just glare at me. Normally we could calm him done, but we couldn’t that day.”
“I basically just walked to the phone and called 911,” she said.
And this is when the nightmare began.
Alex was taken by the police to the Emergency Room at Exeter Hospital, because the law stated no bed could be given to him unless there was a crisis. And for the next twenty-eight days, Alex lived in a closed, windowless room in the Emergency Ward at the hospital, because no bed could be found (“because there was no room at the inn?”)
Alex was on the waiting list at Hampstead Hospital, a private psychiatric facility. And social workers kept looking, everywhere.
Meanwhile, Mike and Ann Sanok visited their son three to seven times a day in his windowless holding room, just to make sure he was OK, getting more and more worried.
Finally, after twenty-eight days, a bed was found at the Judge Rotenberg Educational Center in Canton, Mass.
“It was just night and day (different),” his mother said about the care Alex is receiving now.
“Massachusetts has so many more services. You can’t believe all the stuff they have, they have computers, movies, he seems to be adjusting really well,” Sanek said.
She’s encouraged by how well Alex is doing now but remains angry that he had to endure 28 days in an emergency room waiting for the care he needs.
“I don’t think this really should have happened. It’s always the funding issue,” she said. “The lack of funding for developmental disability services is just almost criminal.”
Our Senator, Maggie Hassan, who began her career in public service advocating for people like her own son who suffers from severe disabilities, said this week that “my heart goes out to this family and their son, as well as to the medical staff at the Exeter Hospital emergency room who cared for him there.”
Why is the majority of the US Senate so deaf-eared to needs like those of the Sanok family?
My cousin has an autistic grandson, and I find myself thinking about him when I read this story. Will he one day face such a trauma? Will his devoted parents, whose lives are focused on helping their son, be left dangling when the day comes that they, because they have become frail themselves, or because Luca has become unmanageably unhappy, need to find another home for him?
What are we becoming as a nation, if we no longer believe that people like Alex are important enough to rate our protection, our intervention, our social concern?
In a long story in John’s gospel, about a young man who was born blind, the disciples ask Jesus what caused this sorrow – is this punishment for sin? Did the parents sin? Or did the boy sin before his birth?
And Jesus is emphatic: this great need, this grave sorrow, this pain, does not occur as a punishment or to underline any sin – instead, this situation exists in order for love – our love – to be shown.
Alex, in Christian faith, is on the earth to provide us with an opportunity to show our compassion in works of mercy. That is what the Judge Rotenberg Educational Center is – a place built from compassionate commitment, a place where works of mercy happen every day.
According to Jesus, the world is redeemed by the light that shines in us when we touch Alex’ life with care and love, and the world is redeemed by the light that shines in Alex when we treat him humanely, as he needs to be treated.
The sin that exists here is a choice: not to provide for the needs of people like Alex. And, instead, to drive them around all day in the car, miserable, lonely, cooped up, imprisoned by our stinginess.
I wouldn’t let a cat or a dog be consigned to spend its days in a car. No wonder Alex was angry!
The state of New Hampshire mooches from its larger neighbor, Massachusetts, begging for and receiving their mercy for its vulnerable and disabled citizens like Alex.
I suppose many a state with a smaller tax base does the same. Surely the Senate can grasp the need that the nation must fund, in order that, in every state, parents whose offspring are autistic or disabled severely in other ways, may be sheltered and provided with nurturing care.
Yet not one word like these words, not one word of Jesus’ words, have come forth during these many months of wrangling about health care.
And it isn’t just Jesus who urges this compassion upon us: Moses and Mohammed, the Hindu Vedas and the Buddha, all urge works of compassion for the needy. The Dalai Lama, venerated the world around, is also called the Buddha of Compassion. And surely Pope Francis would weep for Alex Sanok, stuck in the Emergency Room’s holding room, only slightly larger than a car, for 28 days.
For God’s sake, Senators, do the right thing.
Image: Screenshot from WMUR, NH