Three times on Friday and Saturday, I told the story of the death of my son.
It never gets easier. It’s emotionally exhausting, yet I work to find places to speak and people willing to listen because his is the face of the injustice inherent in our so-called health care system.
I stood alone outside the federal office building in Asheville Friday at noon as people at the stoplight honked their approval (this was the first time I’ve done this that no one flipped me off or said rude things). Then I packed up and went to a “listening” session sponsored by the NC Department of Health and Human Services, which is trying to put the best face possible on the legislature’s planned dismantling of Medicaid here in North Carolina.
The right-wing agenda of the legislature has been the shredding of our social safety net ever since they took power in 2010. They have refused to even consider expanding Medicaid and have chosen instead to privatize it, to farm it out to their corporate friends, who will line their pockets with some of the limited funds meant to help people in need.
I listened to a woman who is blind talk about losing her job, and with it, her access to health care, because North Carolina refuses to allow access to health care to people who live below the federal poverty level.
I listened to another woman talk about trying to recover from a horrible accident while having no access to care because, even though she has obvious disabilities related to the accident, she has been denied both Medicaid and disability. I heard her vow, tearfully, to continue her fight.
Like these two women, my son was not lazy, nor was he to blame in any way for his condition. He didn’t choose to have a birth defect that left him vulnerable to colon cancer. He didn’t choose not to buy insurance — that was decided for him by greedy corporate hacks who saw no profit in him. In fact, no one saw a profit in him until he had stage 3 colon cancer and needed chemotherapy. That’s when he became eligible for Medicaid (but only after he left his wife), and the drug companies collected more than a half million dollars while my son waited for approval for disability. He would not live to see a penny of it — his approval took 37 months and he was dead nine days when his first check arrived.
This state destroyed a decent mental health system a dozen years ago when it privatized services. I know because I was the one reporter in the state who covered it from the beginning. I watched as people who needed help were denied services. I watched as the state made change after change after change to the system, never allowing it to stabilize. I watched as people died.
When I returned to work after the death of my son, I found an e-mail telling me about the deaths of three young men who died within weeks after being released from state psychiatric hospitals without follow-up plans. One of them was released and dropped off at a homeless shelter that had been closed for months. He landed in a fleabag motel, where, in utter despair, he took his own life.
No policymakers cared until the day the story ran. Then they announced a policy change: No one would be released from a state psychiatric hospital without a follow-up appointment with a psychiatrist and enough medication to carry them over to that appointment.
It took more than the three deaths — it took public outrage over those three deaths — to change policy.
Stories are powerful. Stories matter. That’s why I continue to tell my son’s story.
I told his story again on Saturday, at a Town Hall to which Mark Meadows, our member of Congress, was invited, but to which he didn’t come.
I talked about Mike’s experience not getting what he needed, even from the emergency room. I explained that the ER only has to stabilize patients, not look for or address the root cause.
Two women came up to me after I spoke and told me I was wrong. I explained again how the ER only has to stabilize patients and they insisted what my son got was treatment.
“No, he didn’t,” I said. “He left the ER with the wrong diagnosis, the wrong medications and a big bill three times. What he needed was a diagnosis of the malignant tumor that was blocking his colon.”
“I’ve studied this,” one of them said to me.
“I’ve read the laws and written about it for three decades,” I told her. “You are wrong.”
She tried again to tell me I was wrong, and I just turned and walked away. Some people refuse to hear the truth and I can’t waste my time trying to get through to them.
After that, as I stood fuming about how ignorant people can be, a woman walked up to me and said, “You’re probably going to think I’m crazy, but I have a message from your son. He’s really, really proud of you. He stands behind you as you speak, and he’s smiling.”
I decided to not think she’s crazy. I need to feel his presence whenever I can. I need for him to not be completely gone from me.
So, I tell his story. In his memory, I work for access to health care for every human being, and I won’t stop until we’re done.
It looks like Trumpcare is dead in the water.
It’s fine to take a little time to breathe a sigh of relief, but this fight is far from over.
The thugs who want to destroy the Affordable Care Act are still busy wreaking their havoc.
Already, the occupant of the White House has directed the IRS not to enforce the mandate to buy insurance. That means the law will fail as young and healthy people bail out because they won’t face consequences for doing so, and that alone is enough.
Sure, the thugs didn’t get their tax breaks for the wealthiest Americans, but they have plenty of time to do that.
Even if 45 is impeached for his collusion with the Russians, and he’s removed from office, we have to deal with Pence, who is every bit as dangerous. If it turns out Pence was involved in the Russian scheme and he goes, too, that leaves us with the sociopathic Paul Ryan.
Sociopaths and psychopaths seem normal. They appear healthy, but they have no empathy. They can only feel what affects them directly. That’s what made Ryan able to have his drunken college frat boy fantasies about pulling the rug out from under people in need. And his peers consider him to be the smart one. This brain malfunction is how he can call himself a “Christian” but follow none of Christ’s teachings. Because Christ never actually said, “I got mine, get your own.”
The Republicans who were going to vote against Trumpcare, members of the so-called Freedom Caucus, were doing so because it didn’t go far enough. It allowed poor people access to addiction treatment and mental health care. Apparently, my representative, Mark Meadows, head of the so-called Freedom Caucus, thinks more people should die from lack of access to care, not fewer.
They still want to change Medicaid to a block-grant program, which would offer set amounts to the states, and those amounts won’t grow even as the need does. That means fewer people will be served and more will die.
They still want to close women’s health clinics, which for many low-income women are their only lifeline to health care. Without these clinics, the women who use them will have no access to birth control, to mammograms, Pap smears and other diagnostic tests. They won’t have access to safe abortions, and if you really want women to bear every child that’s conceived, shouldn’t you want them to have access to care so those babies will survive? Apparently not.
This crowd also wants to de-fund WIC, which provides pregnant and nursing mothers and their babies the nutrition they need. It is one of the most efficient and successful of all the government programs, but these thugs want it gone.
And, then there’s Meals on Wheels, which 45 de-funds in his budget. Yes, it gets most of its money from private donations, but it still needs the money it gets from the government.
These thugs have an agenda. One tiny piece of it has been thwarted, and we can and should be happy about that, but they have any number of means to achieve their goals. They are not done. We can not claim victory until they are gone.
So, stay active. Register people to vote and then help them get to the polls. Run for office yourself if you can — any office, including city council or school board.
And above all, stay woke. That means pay attention to what’s going on. The thugs are not done.
I think it’s important to talk about Moral Mondays here, to explain why I got involved, why I got arrested on May 13, and why I continue to go for the rallies.
First of all, let me say in response to those who say we can’t accomplish anything with these demonstrations, I wouldn’t have gone if I didn’t think we could make a difference, and I am willing to tolerate the vitriol of people who would discourage us because I think they are afraid of us and what we stand for.
I go because I feel a moral obligation to protest the General Assembly’s and the governor’s refusal to expand Medicaid under the Affordable Care Act. Their ideological decision puts a half-million lives at risk in this state, and estimates are that at least 2,000 will die prematurely because of this decision,
Those lives matter to me. Each one of them matters. I don’t care if it is a homeless person who is addicted to drugs and alcohol. I believe each life has worth. If you don’t believe the same, please don’t call yourself pro-life in front of me.
My primary passion is health care, but when we take away unemployment compensation from more than 70,000 people, it has consequences. Most of them also lack access to health care because you can’t pay for COBRA if you don’t have any income, and most adults aren’t eligible for Medicaid here in NC.
When we de-fund schools, we rob children of the chance to rise out of poverty and provide for themselves and their families. They also will be the ones most likely to not have access to health care later on.
These issues are deeply connected to each other. Living wage impacts poverty, and all the stresses that come with it. People who have enough to live on are healthier overall because they don’t have the stresses associated with poverty.
I have visited my legislators repeatedly to educate them on the importance of access to health care and about the lower costs associated with access to care. My representative voted against Medicaid expansion. He voted to cut unemployment benefits. He supports a voter ID law that is a thinly disguised poll tax.
I am frustrated beyond words. I cannot fathom the reasoning behind barring access to health care for 500,000 people.
Our state’s computer system is their first excuse. It isn’t up to the task, they say. But then they decline to mention that we turned down federal money to upgrade the system.
When I reminded them of that, they said we have to fix Medicaid first. Well, North Carolina’s Medicaid system was a national model until its funding was slashed two years ago. Restore the funding and the system will be a model again. Instead, though, they are going to try and privatize it the way they did with the mental health system a decade ago. That “reform,” you may recall, was an unmitigated disaster.
When I explain that, they usually have a meeting they have to rush off to.
They aren’t listening, and it frustrates those of us who oppose what they’re doing. My heart breaks for people who will die because of these misguided decisions; it breaks for the families of those casualties.
Unless you have held the hand of a loved one as he or she dies unnecessarily, you can’t know the pain.
As a person of faith, I take seriously the Bible’s instruction to care for “the least of these.” And it is not just Christianity that requires this of people; it is a basic tenet of every major religion, and it is important to just about every atheist I know.
That’s why nearly 400 people have gone into the Legislature Building and been arrested. Dozens of them are clergy. Some are teachers and professors, students, old, young, black, white, Asian, hippies and lawyers. This is a diverse crowd, and its members are passionate about justice for all North Carolinians, not just the wealthiest.
As the ones being arrested go into the building, they are cheered by a crowd of thousands. Hundreds of people move to the side of the building to await the departure of prison buses filled with people who are not afraid to speak truth to power.
When I was arrested, those cheering voices assured me I was doing the right thing. They gave me courage and hope.
I do not go to Moral Mondays for political reasons; I go for moral reasons. I go because if I do nothing, I am as much to blame as those taking the immoral actions.
I go because every life has worth.
No longer content to just badmouth and vilify hardworking Americans, it seems the right has started actively trying to kill them.
In NC, the legislature has voted to deny 600,000 people access to health care by refusing to expand Medicaid, even though it would bring down billions in federal dollars and create 25,000 jobs, not to mention save lives.
This move will mean more suffering among the more than half-million people who can’t gain access to health care. We’re talking about more heart attacks and strokes, more complications from diabetes — kidney failure, blindness, limb amputations — more advanced cancers, more intractable mental illnesses, more asthma emergencies … the list goes on.
The legislature’s choice of a twisted ideology over compassion and decency will increase medical costs and people will still suffer and die unnecessarily.
And if you’ve been unlucky enough to have your job shipped overseas, that’s too bad too because the legislature has voted to overhaul unemployment insurance by slashing benefits and the amount of time people are eligible to receive them. North Carolina now has the shortest compensation time in the country — in some cases just 12 weeks.
Not to mention that when people lose their jobs they also lose their health benefits, but our legislators don’t care about that.
My inbox is full of e-mails begging me to sign one petition or another to prevent the North Carolina GOP from de-funding education, raping the environment, rigging taxes so the rich pay less and the rest of us pay more, punishing workers for wanting to make a living wage, making a naked power grab by firing everyone on state regulatory commissions …
I can’t keep up with it all, and that’s just in North Carolina.
In Washington, the GOP is still refusing to cooperate with anything the President wants to do.
They’re filibustering against Chuck Hagel’s appointment as Secretary of Defense; they’re saying they’ll block a minimum wage increase, they’re slowing down gun safety laws, and the House GOP is still trying to repeal the Affordable Care Act.
I’m exhausted from e-mailing and calling and traveling to try and get these people to listen to reason about the Medicaid expansion, but I’m just met with a stone wall. My own representative doesn’t answer my e-mails, not does Gov. Pat McCrory.
McCrory did answer an e-mail from my friend, Eileen McMinn, though. He sent her a form e-mail asking if she would donate money to him.
They’re ignoring us, and I suppose they have reason to believe they can get away with it because we seem to be lying down and playing dead.
How many of us have e-mailed, called or snail-mailed our state representatives or governor over these issues? How about our federal representatives? Have we thanked the ones who are doing the right thing? I e-mailed Sen. Richard Burr, a Republican, to thank him for voting in favor of the Violence Against Women Act.
There’s a lot at stake here. You may not think you’ll ever need Medicaid, but if your job gets shipped overseas and you get just $350 a week for 12 weeks, what then? How long can you keep making house and car payments? What if you get sick on top of all that?
We are all at risk here, and we all need to take action. Democracy is participatory. If we don’t participate — and by that I mean becoming educated about the issues and voting according to our convictions — this is what we get.
If you don’t know who your representative is in the US House, visit www.hoismyrepresentative.com.
If you don’t know who your state senators or representatives are, you can visit www.ncleg.net or call your county’s board of elections.
If you’re one of those who say, “I’m just not interested in politics,” shame on you! You’re part of the reason we’re in this mess.
First the NC House voted to cut unemployment compensation and make it more difficult to qualify, ensuring more North Carolina families will lose everything when they get laid off. The top weekly compensation will be just $350 a week if this becomes law.
Then the NC Senate voted to reject the expansion of Medicaid, which would bring in nearly $15 billion from the federal government to insure more than a half-million people, including those unemployed people who are about to get royally screwed. Estimates of the number of people who will not gain access to care range as high as 650,000. The Senate also voted to reject partnering with the federal government on a health benefits marketplace, which will cost even more money.
This state ranks 38th in health outcomes (cancer deaths, heart disease, low-birthweight babies, infant mortality, etc.), and we’re about to drop even lower as federal money to reimburse hospitals and other providers gets cut (the expansion of Medicaid was designed to replace this money by covering low-income people with Medicaid).
So now, more than a half-million people in this state are at risk of dying from preventable causes. We will see more advanced cancers, more heart attacks and stroke, more serious complications from diabetes (blindness, kidney failure, limb amputations), more intractable mental illness, more life-threatening, antibiotic resistant infections … And more funerals for people who shouldn’t have died.
It will cost us dearly in both money and human lives.
Now the NC Senate has voted to fire every public servant on several critical boards and commissions to they can be replaced with like-minded ideologues who will rape the environment and offer big business everything it wants. We will see less safe workplaces, more food-borne illnesses, more corruption and much, much less protection of any kind for the people of this state.
The reason the terms on these boards are staggered is to prevent them being stacked with ideologues by corrupt politicians. But a few appointments wasn’t enough for the Teapublicans in the Senate; they want it all. They want to run everything with no opposition from anyone.
Gov. Pat McCrory, who ran as a moderate, has a chance to veto all of this, but he hasn’t indicated whether he will. He likely will sign the raid on unemployment and he has said he doesn’t think now is the right time to expand Medicaid (When IS the right time, Governor?).
I hope he sees that this power grab is unconscionable.
We need to let our legislators know how important these issues are to us. To e-mail a legislator, it’s email@example.com (example: firstname.lastname@example.org). You can go to www.ncleg.net for more contact information Their phone numbers are listed there. To contact Gov. McCrory, visit http://www.governor.state.nc.us/contact, tweet @PatMcCroryNC, call 919-733-5811 or snail-mail:
Office of the Governor
20301 Mail Service Center
Raleigh, NC 27699-0301
Do it now and then do it every day until the issues are resolved. If these things go through, e-mail every day to let them know they’re going to be unemployed in 2014 (or in the governor’s case, 2016).
OK, first off, the Protestants aren’t going to be happy, especially those furthest to the right think neither Mormons nor Catholics are “real” Christians. There are some over there who don’t even think Methodists are real Christians.
Then there are the few moderates in the party who will bail out at the thought of a Tea Partier as VP.
And those on the far right likely are unhappy already because Mitt distanced himself from the Medicaid debacle.
We on the left are pretty pleased, of course, because the Ryan budget hasn’t been very popular and we can (and will) exploit what it would do to seniors, to people with disabilities and to people who happen to be both poor and sick.
And just as the Affordable Care Act is gaining some popularity among the millions of people it has helped already:
- 2.5 million young adults who are on their parents’ insurance policies,
- 5 million children with pre-existing conditions like asthma or a birth defect,
- 14 million seniors who received help with prescription drug costs or other aspects of the new law,
- 50,000 people with pre-existing conditions such as a history of heart disease or cancer,
- women who no longer have to pay out-of-pocket for cancer screenings or contraception.
I’ve actually heard the word, “Obamacare” spoken with some affection, and these two are smiling, waving and promising to repeal the whole thing.
Then there’s the Ryan tax plan what gives even more money to the wealthiest while increasing taxes on the working class. This “deficit hawk” has a budget that would increase the deficit while robbing the poorest Americans of everything.
While Romney and Ryan have been trying to paint everyone who’s poor as lazy or evil, many of us know people and families who would be devastated by cuts — people like Rebecca Demmer, whose two sons both have autism and need state services. Cuts in Medicaid would affect this innocent family by taking housing and work support away from them.
Medicaid rates are so low already that many service providers refuse to work in the system, making it difficult to find care for people who depend on Medicaid.
But those people don’t matter to someone who idolizes Ayn Rand, an author with a survival-of-the-fittest philosophy. Rand’s philosophy says that people who can’t “contribute” will not survive. Tell that to Rebecca Demmer, who loves her sons and will argue that they contribute greatly to the lives of the people around them.
Some of my Republican friends are worried about this choice. They see how it looks to moderates and progressives, and they know most unaffiliated voters are pretty middle-of-the-road, and those are the voters who will decide this election.
I’ve been really dismayed the last week or so as people post on Facebook and Twitter how we need to cut spending, and they insist it can’t come from the “job creators.” There’s no room for debate: we have to stop carrying the lazy, unemployed bums and others who won’t work and give breaks to the wealthiest on the off chance they’ll somehow find it in their hearts to create jobs.
Facts and history aren’t persuading these folks that we can’t keep on this way. In fact, there’s a sizeable chunk of people out there who think it would be good to default on our debt so we would have to cut programs that help people in need.
The debt ceiling wasn’t such an issue when Congress voted to raise it seven times during the George W. Bush administration. In fact, Vice President Dick Cheney said, “Debt doesn’t matter,” as he and his cronies started two wars with no idea how they would be paid for, and then cut taxes on the wealthiest Americans.
Now, all of a sudden, debt matters. That’s because we’re running out of money from the debt THEY ran up. We have to cut spending, they say, not increase taxes.
So, who do we cut?
Medicaid is pretty much pared to the bone already. Come 2014, it’s supposed to cover all Americans who earn up to 300 percent of the federal poverty level; I’m hoping it still will be around then.
Already, most single adults are excluded from Medicaid. Even with Stage 3 cancer, my son Mike wasn’t eligible until he and his wife split. I was asked to write and sign a letter saying they had split and had no intention of getting back together when we thought Mike’s only option was to live with me (his best friend invited him to live with him, offering him somewhat more of a sense of independence).
People who use Medicaid often are denied the best drugs and treatments because Medicaid doesn’t cover it. If you have diabetes, you will get medication, but not the newest meds that really help control blood glucose. If you have a psychiatric illness, you won’t get the drugs that work the best, so your illness will be more difficult to stabilize.
The people served by Medicaid aren’t just “welfare mothers” and “bums” as so many Americans lucky enough to have jobs and good health believe. People with serious disabilities get services such as physical, occupational and speech therapy. Even the places they live, which offer the skilled care they need, are paid for by Medicaid. If we cut more, some of them will be placed in nursing homes with no therapy, no activities, surrounded by people with whom they have nothing in common.
OK, so do we cut unemployment compensation? Does it really keep people from looking for jobs?
Historically, no one has objected to helping people who have lost their jobs through no fault of their own. We give tax breaks to huge corporations when they ship jobs overseas and then criticize the people who lose their jobs as a result, plotting to punish them instead of the corporate bigwigs who took the jobs away.
So, let’s shave some dollars from the Pentagon budget. I think Halliburton and their ilk can afford to lose some revenues, especially since the’ve been allowed to wantonly rip off the American people with shoddy workmanship and overpriced, no-bid contracts for a decade now. Those billions could have fed the nation’s hungry children or fixed our crumbling national infrastructure.
Let’s cut some of the benefits we give members of Congress. No more free ride on health care. No more lifelong pensions — or jobs, for that matter. If we limit the amount of time people can spend there, maybe we can go back to citizen rule instead of a country run by corrupt corporate shills.
I’m really angry about how many Americans believe the lies they’re being fed by a bought-and-paid-for media, and how many really think it’s OK to let the Right have its way and destroy our lives and our country.
No more cuts to programs ordinary people need to get by. None. Not one cent. Tell your member of Congress today.
That’s a question I recall hearing again and again during the 1980s and 90s as a reporter covering family issues, social justice issues and education. It came mostly from upper-middle class people in good school districts who were concerned about their children’s welfare, class size, access to computers at school and with limiting kids’ access to such horrible things as dirty words and suggestive song lyrics.
They were genuinely concerned about their own children, especially the ones who decided to run for the school board. All of them claimed they were running “for the children.” One even said, “I’m doing it for the kiddles.” I asked if she really wanted that quote to go under her photo alongside “Reason for running:”
Some ran so they could work to get their Evangelical views into the classroom. I usually recognized the buzzwords they used, such as “intellectual freedom to teach different ideas,” and of course, “intelligent design.”
One of my colleagues once said in the midst of the campaign season, “I wish just one person would be honest and tell us he’s running so he can have power over something.”
At least people wanted to be involved. Today, some school boards have vacancies they can’t fill. Schools are being attacked, as are most other institutions that help children.
While some of the nation’s wealthy seem to see public education as a form of welfare, programs that protect the welfare of children in every respect are being slashed.
Medicaid, which offers health care to the nation’s most needy, is about to be cut, compromising the health of millions of children; subsidized children’s health care for families that can’t afford insurance now has waiting lists so long it’s effectively shut down to new people in several states.
After-school programs, which keep children in a safe place until their parents can be home with them, are being defunded.
Parents are working several part-time or two full-time jobs just to make ends meet while child care subsidies are being slashed. That’s because in every city in the United States it takes at least two full-time jobs at minimum wage to make ends meet on even the most modest budget (no cable TV, no meals out …).
A few years ago, here in Western North Carolina, a working mother left her child in the car because she had no other option to care for him and she needed her job as a CNA in a nursing home to keep their small apartment. Her shifts were not the same as most child care center hours, so she had nowhere to leave him safely. She opted to leave him in the car and check on him periodically, rather than leave him home alone. The child died and the mother was villified. Most of my colleagues were outraged that a mother would endanger her 4-year-old like that.
But I remember being a single mom, struggling to pay my bills and find a safe place for my children while I worked. I had a boss who would let me bring them to the office with me if I had to work late or on Saturday. I had an upstairs neighbor who would look after my older son if he needed anything — he was a latchkey kid when he was 8 because I couldn’t afford to pay for care for both my boys and I couldn’t get a subsidy unless I quit work and went on welfare.
Today, one in five children lives in poverty, likely not getting the nutrition they need to stay healthy or the intellectual stimulation they need to overcome poverty when they get older. They are less likely to have access to a computer, or even good books. They are more likely to have health and/or behavioral problems, to drop out of school, to turn to crime and to remain poor as adults.
Even so, as we “negotiate” how to cut government spending, children’s needs once again are on the table, but not the wants of the wealthiest 1 percent of Americans who control a staggering 40 percent of the nation’s wealth. Heaven forbid we ask for shared sacrifice from them or from behemouth corporations that pay little or no tax.
So, what about the children?