All posts by Susan Sered

On-going Zika Crisis in Brazil: Lessons for the U.S.

A report released this week by the Human Rights Watch documents the ongoing tragedy of Zika in Brazil. The Brazilian government has declared an end to the national public health emergency. Yet pregnant women are still becoming infected with the Zika virus, babies are coming into the world carrying the effects of Zika, and families will continue to care for their Zika-affected children for years to come. More broadly, the social, economic and environmental conditions that gave rise to and then exacerbated the Zika outbreak in Brazil have not changed. Sadly, many of these conditions are present in the United States as well. And while Zika has not wrecked havoc in the continental US (Puerto Rico has experienced significant Zika outbreaks), these same conditions are fertile ground for a multitude of public health disasters.

Environment and Infrastructure

I spoke with Margaret Wurth, a children’s rights researcher who spent a year interviewing nearly fifty women and girls who were pregnant or gave birth in two of the states most affected by Zika. She learned that Brazilian authorities warned women to spray their homes with insect repellant and to cover open water jars, “but there is only so much as individual can do.” In communities with erratic water supplies, people have no choice other than to fill tanks with drinking water. But these same tanks can quickly become breeding grounds for mosquitoes. The Human Rights Watch report also describes, “Untreated sewage flowing into open, uncovered channels, storm drains, roads, or waterways.”

Wurth recalls meeting a pregnant sixteen year old who did everything she could to protect herself and her fetus. She wore long sleeves, doused herself and her home with insect repellent and covered water jars in and near her house. She did not know, however, that Zika can be transmitted sexually. And she could not, of course, single-handedly clean up the standing water and sewage in her favela.

In the United States most communities have covered sewage disposal systems and household running water. Yet the American Society of Civil Engineers graded the country with a D+ in wastewater management in 2017. Their assessment is that more than $105 billion is needed for wastewater funding. With Congress stalled and no real plan for investing in infrastructure, this kind of funding seems unlikely. And while some states have reasonably good water and sewage systems, in other states – most notably Alaska and Mississippi – significant numbers of households lack both.

Reproductive Health and Rights

One in five of Brazilian mothers raising children with Zika syndrome are under the age of twenty. These young women were unlikely to have access to birth control. Given Brazil’s prohibition on abortion, women may turn to dangerous “backstreet” abortions. A young woman who especially touched Wurth’s heart underwent a clandestine abortion at the age of thirteen; she had become pregnant as a consequence of rape. Wurth met women who had used caustic acid to induce abortion. Facing the terror and the stigma of bearing a child with Zika-syndrome, these women risked their lives. Not all survived.

In the United States access to contraception and abortion are increasingly under attack. The Republican health care bills would further reduce access to reproductive health care through defunding Planned Parenthood and removing birth control from the list of basic services insurance must cover.

In Brazil, government efforts to educate about Zika are disproportionately aimed at women, implicitly absolving men of the responsibility to prevent transmission or to help raise children living with Zika-syndrome. “Mothers are overwhelmingly the primary carers for kids with Zika syndrome. It’s very challenging. They can’t continue working or going to school. They often need to travel long distances and fight with agencies and officials to get the services they are entitled to,” according to Wurth.

In the United States family planning is similarly delegated to women, especially in communities that do not allow comprehensive sex education in schools. An abstinence-only curriculum does not prepare young men to be responsible sexual partners. And, like in Brazil, American mothers – especially low income mothers – face suspicion when they request government services. Republican demands that food stamp and Medicaid recipients work at paying jobs will hit hard at mothers of disabled children.

The Way Forward

There are measures that should be taken in the short and long terms to prevent future outbreaks of diseases like Zika, and to support those who are most affected. Developing and maintaining safe water distribution and sewage systems in all communities is crucial. Women and girls need access to the full range of medical services, including contraception and abortion. Men must be educated to shoulder their share of the responsibility for sexual safety, family planning and child rearing. And families and communities must be able to rely on ongoing support to care for ill and disabled individuals.

It’s unclear if the Brazilian government’s declaring the Zika crisis over was naively optimistic or blatantly political. In any case, it is eerily reminiscent of the declaration that “America has the best health care system in the world” when all data show health care in the US ranking last among developed nations. There are important lessons for the US both in the underlying causes of the Zika disaster in Brazil and in the Brazilian government’s response. We ignore them at our own peril.

The Women of Can’t Catch a Break: Early Summer 2017 Update

I’ve finally had time this summer to try to touch bases with all of the forty-eight women who started in this project eight years ago.

Seven women have disappeared from (my) sight. None of their old addresses or phone numbers are still good. None of the people we knew in common have heard from them. I couldn’t reach any of their family members. And I couldn’t find any trace using Google searches (I tried various nicknames and known aliases).

Five women are dead.

Only three women are currently housed, sober and employed (or stay-at-home moms whose husbands are employed), and have been so throughout most of the eight year period. 

The rest of the women continue to cycle in and out of housing, jobs, detox and rehab, hospitals, and jail. Some of these women have stable housing but are on Disability. In some cases, they are unable to do any kind of work. More commonly, they cannot find a job that for which they are qualified and that allows them sufficient flexibility to take care of children, health problems or mental health crises.

I’ve been reminded again and again that I cannot predict how any particular woman will be faring at any given time. Just this week I went to jail to visit a woman whom I never dreamed would end up incarcerated again. At just about the same time, I learned that a woman whom I assumed would continue to bounce between prison and the streets is now stably housed and raising her children. 

To read previous updates click on:  January 2017   Summer 2016   New Years 2016   Summer 2015   Christmas 2014 / 2015    Fall 2014 


Andrea passed away.  The fifth woman for whom we’ve written a Eulogy, Andrea was the only one whose death was described as “natural.” Two others were murdered (see Eulogy for Elizabeth and Orange-Frosted Hostess Cupcakes), one died with a needle in her arm (see Eulogy for Nicole), and one died of complications of HIV/AIDS (see Eulogy for Junie). Andrea had a congenital heart defect, but I can’t help but wonder whether the decade she lived in homeless shelters contributed to her death.

Andrea loved working out while watching exercise shows on television. For years, she urged me to do the same. I would smile and nod my head, and tell her that I’d try. Finally, this spring, not long after she died, I started going to a zumba class. I wish I could tell Andrea about it.


Carly (see “A New Home for Carly“) is still homeless. Though she has a voucher for Section VIII (subsidized housing), she cannot find an apartment in the permitted price range. DCF (child welfare department) has not returned her baby to her custody. She’s been told she needs to see a therapist (she is) and attend a parenting class (she is waiting for DCF to run one), but the reality is that without an apartment she is unlikely to get her child back. She has been focusing a great deal of her attention on reaching out to the baby’s father. He is incarcerated, so it’s not clear to me how she expects him to become involved with the child.


As of this writing, Erin is no longer using drugs and seems to have settled down. “One day I just decided to stop. I can’t live like this again. I knew if I kept using I’d die.” She continues, however, to experience memory lapses, “probably [caused by] the drugs. I used to be on anti-psychotics, mood stabilizers. I was diagnosed bi-polar but I think they freely throw that [diagnosis] around. My problems are more because of how I lived.”

Erin’s husband died last year. She now is living with a man whom she has known for many years. He is employed, and she makes a bit of money selling cosmetics. Her main concern at this time is her back. She suffers from degenerative disk disease that interferes with her sleep and with her ability to stand up straight.


Two months ago Francesca (see “The Bitch at the Welfare Office“) had major surgery on her neck. Both before and after the surgery her doctors prescribed large amounts of Percocet, an opioid that has always been her drug of choice. There were a few weeks during which I was worried that she was going to slide right off the slippery slope of monitored pain medication use back into drug abuse, but she seems to have weathered the worst of the post-surgical pain and is doing a good job of going about her life. She still lives with her son and granddaughter, works part-time, and is involved with a man who does not seem (to me) to be abusive.


Ginger (seeThe New Price of Freedom) called me every single day when my father was in the hospital back in January. She never intruded – she’d just call to say that she is thinking of me and is available if I need to talk. It amazes me that she has this much compassion — and consistency in showing compassion — when she herself is homeless.

The last time we spoke she was optimistic about getting housing. She’s been working with a case manager at a housing agency and had been told that she is high on the housing list. But as of this writing I haven’t heard from her for a month. Her phone number is no longer working and I don’t know where she is.


Isabella (see “Failure by Design: Isabella’s Experiences with Social Services“) is back in jail. Though still unemployed and grieving for her late husband, she seemed to be managing her life. She had a reasonable place to live, was consistent about going to the methadone clinic for her daily dose, and had re-established good relationships with her family.

Then, a few months ago she was in a car accident (it was not her fault). She was knocked unconscious at the time of the accident. She woke up in the hospital — handcuffed to the side of the bed.

It turns out that when the police checked her identification on their computer system they found that she had outstanding warrants on a number of old drug charges. Because she had moved frequently, she had not received the summonses to appear in court.

After a week in the hospital, she was transferred to jail, where she detoxed from methadone. The detox process led to major weight loss and seizures. She now is feeling better and is happy to be off the methadone. She would like to enter a drug treatment program to get support in staying clean.

In the meantime, she has lost her apartment as well as all of her belongings (from jail she couldn’t arrange to transfer her clothes and furniture to a storage locker.) No one in her family has written or come to see her.


Kahtia (See “Prostitution, Decriminalization and the Problem of Consent“) continues to work with DCF to regain custody of her children. Each time it seems that the matter is resolved, something else comes up.

She is still going to all of the required appointments and programs, still volunteering at  soup kitchen, and still seeing her children once each week.

Unfortunately, her health has deteriorated. She has trouble breathing, carries oxygen with her, and struggles to go up the four flights of stairs to her apartment. Most days she only goes out one time so that she won’t have to navigate the stairs more than once. It’s unclear to me how she’ll manage when her children come back home.

This week she was too sick to go to her volunteer job. At this writing, she is sitting in the emergency room waiting to see a doctor.


Melanie – a woman who had worked steadily for the first seven years I knew her, is now on Disability because of mental health challenges. She desperately wants to go back to work.


Patricia has overcome a great deal in her life. Her mother died of an overdose and her father is serving time in a European prison for drug trafficking. She began drinking in her early teens, and ended up in prison because of a string of DUIs.

After her stint in prison she trained as a medical assistant and worked fairly consistently for the past six years. At this point she feels that she is a functioning alcoholic, though there are times she drinks too much and has to phone in to miss work. Unfortunately, she recently lost her job at a clinic.  “A doctor behaved inappropriately to me. The clinic fired me, not him, because he brings in the clients and the money.”  As of this writing, she has been collecting unemployment for several months.

Even with all of that history, Patricia looks and sounds like a soccer mom! She relishes hosting pajama parties and going to her kids’ school events. Patricia is one of the few women who has never been homeless. An attractive woman with a friendly and pleasing manner, she has always had a boyfriend, a “sugar daddy” (her words) or extended family to stay with. She and I agree that the fact that she has never been forced onto the streets or into the shelters is a function of how she looks and sounds (middle-class) as well as the reason that she continues to look and sound so very well.


Paula, a white woman in her early fifties, had fallen off our radar for a number of years. A few years ago she was arrested on a drug charge. Last year we heard through the grapevine that she died of an overdose. It turns out that she, in her words, “almost died”.  Paula explains, “I caught pneumonia and I was using hard, so I got septic and my lungs acquired ARDS – a fatal lung disease. I was on life support for 6 weeks.”

Just last week she told me, “I’m OK, I guess. I’m clean but lost both parents and am dealing with an alcoholic husband. We’re living in a low rent room in [central Massachusetts]. I have been out of prison now for two years and have lived in five different spots. It sucks.”

On the positive side, “I passed my driving test and bought my first car. I never thought I’d actually have a car!”


Life is unpredictable for all of us – the reality of impermanence is one of the four noble truths of Buddhism. But the women of Can’t Catch a Break seem especially vulnerable to shifts in public policies and in social service programming as well as to the vicissitudes of luck and fate, and the challenges of their own mortal bodies.

 

Will Massachusetts Pass Meaningful Criminal Justice Reform Legislation?

I wish to thank Jean Trounstine for contribution to this post.

On June 19, 2017, I spent the afternoon and early evening at the Massachusetts State House listening to testimony regarding several bills aimed at reforming incarceration policies. The large Gardner Auditorium was packed with people wearing T shirts calling for the end to mass incarceration, solitary confinement, mandatory minimum sentencing, and parole reform, and for “jobs not jails.” The members of the Joint Committee on the Judiciary listened intently to testimony from criminal justice experts, legislators, sheriffs, attorneys, physicians, and people personally impacted by criminal justice policies. With the exception of a representative of the association of Massachusetts District Attorneys, speakers from all over the Commonwealth spoke to failures of current policies to keep people safe, to safeguard human rights of prisoners, and to provide appropriate health care services to justice-involved individuals.

It all seemed so promising. If only this whole crew hadn’t been there before.

Nearly all of the bills have been proposed in the past (albeit sometimes in slightly different forms). None of the bills seemed terribly controversial, at least to me. None proposed a complete overhaul of the criminal justice system. Rather, the bills, cumulatively, addressed several of the most obviously ineffective or inequitable current practices.

House Bill 74 – implementing programs to reduce recidivism

The first bill introduced, House Bill 74, calls for implementing the recommendations made as part of an extensive review conducted by the Council of State Governments Justice Center and chaired jointly by Governor Baker, the Lieutenant Governor, Senate President, Speaker of the House of Representatives, and Chief Justice of the Supreme Judicial Court.

As a sociologist, I often find political discourse and machinations to be a bit confusing. In this case, it was hard to get my head around reiterations that “all the players” were involved in crafting this legislation.  Other proponents expressed pride that “all justice partners”; that is, representatives from all three branches of state government, worked on the bill. I also heard the term “all the stakeholders”.  However, there did not seem to be any representation of incarcerated or formerly incarcerated men and women on the committee that crafted the bill. Surely “all the stakeholders” include the people most directly affected by these policies. Indeed, I’d argue that they – not politicians or bureaucrats — have the most at stake in decisions regarding prison policy.

Though many people involved with the court and prison systems had hoped for far-reaching recommendations from this review and committee, the bill focuses rather narrowly on reducing recidivism. While that certainly is an important goal, it does not speak to disrupting the school-to-prison pipeline or to other policies and social conditions that send people into the prison system to begin with.

The recommendations to reduce recidivism center on prisoner education, opportunities for early release for good behavior, and post-release supervision. A centerpiece of  the bill calls for rewards for good behavior (for example, completing vocational training programs). The rewards consist of shaving days off the sentence and adding them to the period of parole (community supervision). I strongly support efforts to reduce incarceration rates, but I am concerned that lengthy and intensive supervision on parole can lead to re-incarceration due to technical violations of the conditions of parole. In my own ongoing research with criminalized women in Massachusetts, I’ve seen intensive supervision with requirements for frequent meetings with parole officers, urine tests, proof of attending programs, etc. interfere with the ability to hold down a job and manage the myriad other responsibilities that are part of modern life.

H.74 emphasizes expanding programs of various sorts: pre-trial, during incarceration and post-incarceration. Programs can be good, bad or indifferent, but programs are not a substitute for the material resources most justice-involved people desperately need: Housing, decent jobs that pay living wages, family reunification. I am particularly troubled by a lack of clarity regarding mandatory program attendance for pre-trial individuals. Given that people who are awaiting trial have not been found guilty of a crime, it is be problematic to require them to attend any sort of program.

The consensus at the hearing is that the measures to reduce recidivism outlined in this bill should be the start, not the totality, of criminal justice reform in Massachusetts. No one testified against the bill but many said in their testimony that it did not go far enough.

S819 and H741 – bills eliminating mandatory minimum sentences for low level drug crimes

More substantively, Senator Creem spoke to S819 and H741 – bills eliminating mandatory minimum sentences for low level drug crimes. She, and other supporters of the bills, made the important points that mandatory minimums have not been effective in reducing drug use; they have led to mass incarceration; they have ruined lives of young people locked up for years on trafficking chargers for what essentially amounted to sharing illicit substances with friends; and they clearly have disproportionately impacted racial minorities. There were also panels of sheriffs, defense attorneys, impacted people, and Senators Evandro Carvalho and Sonia Chang-Diaz, both who represent districts where mandatory minimums are levied with unrelenting consistency.

Collectively, they made the point that mandatory minimums undermine the American system of justice by putting power in the hands of prosecutors rather than judges. Prosecutors decide whether the charge will be one that automatically triggers a mandatory minimum or not. And prosecutors can use the threat of mandatory minimums to encourage people to “choose” to plead guilty to a lesser charge. Opponents of this practice argued that prosecutors in essence function as judges, taking away from individuals the right to a trial in front of a judge who hears arguments both from the prosecution and the defense, and who can evaluate the particular circumstances of the individual and the case.

The only opposition to ending mandatory minimums came from DA Conley of the District Attorney’s Association. Conley argued that judges are “out of touch with what goes on in communities” and that prosecutors should properly have sentencing discretion. Many people testifying after the DA rebutted his claims, some of which were not based in fact.

House Bill 3121, Senate Bill 779, An Act Related to Parole

A panel of lawyers, activists, and two formerly incarcerated testified about the importance of reforming the broken parole process in Massachusetts without which packed prisons keep expanding. They spoke of how the Parole Board needs more expertise from sociologists, psychologists, addiction and mental health specialists, and juvenile justice experts. In other words, to judge the fate of our prisoners, our Board needs more than criminal justice backgrounds. Two formerly incarcerated men talked of how the process had been daunting and almost impossible to deal with without attorneys. Massachusetts currently has a dismal paroling rate which is also costing the state $53,000 for each prisoner who could be concluding their sentence in the community, going to school, working, and at least aiming to give back to their communities.

H.2248 and H.2249 – bills limiting the use of solitary confinement

Speakers testified regarding a bill to reform (oversee, control and minimize) the use of solitary confinement in Massachusetts jails and prisons. Attorneys, advocated and families of prisoners described its overuse in the Commonwealth; to the long-lasting damage it causes prisoners; and to its utter failure to make prisons or communities safer.

A representative of Maine’s ACLU testified that six years ago Maine passed solitary confinement reforms similar to those proposed in Massachusetts. In that time, Maine reduced the use of solitary confinement by 90%; prisons have become safer; and medical and emergency rooms visits have been reduced.

H719, H720, H721, H2248, H2249 – bills regarding treatment of mentally ill prisoners

Rep. Ruth Balser introduced five bills regarding the treatment of mentally ill and addicted prisoners. Among other measures, she called for Department of Mental Health oversight of mental health services in Department of Corrections facilities.  (These services currently are outsourced to private companies.) The bills generated little discussion. I’d like to believe that this reflects a clear consensus regarding the important issues addressed in the bills.

H 3494 — creating a medical parole board to consider medical release from prison

This bill would allow for early release of people with extremely serious or terminal conditions. Physicians testifying in favor of the bill spoke of paraplegic prisoners, prisoners undergoing intense chemotherapy, and prisoners with blood terminal disorders developing infected sores from the use of shackles. No opposition to the bill was voiced at the hearing.

Two bills regarding women were heard

H.3586 – An act relative to justice-involved women

Representative Kay Khan presented H.3586 which brings together a call for careful collection and analysis of data, policies and programs for justice-involved women.

The bill requires the commissioner to evaluate the program delivery system for existing programming for parenting skills and related training for incarcerated women and the effectiveness of these programs. In my own research I see women repeatedly cycle through programs of various sorts. I have found it near impossible to learn whether these programs are proven effective. Often, no data are available at all. At best, data regarding the completion rates of programs are available. Completion rates, however, do not get at whether programs actually contribute to individuals going on and implementing the skills taught in the program.

The bill also calls on the commissioner to develop programs with a focus on family preservation and reunification. In my research I have seen that a great deal of the programming for justice-involved women encourages women to “put yourself first” and “do you!” Given that the vast majority of justice-involved women are mothers – and that all justice-involved women are daughters, sisters, cousins, etc. – it is appropriate for program emphasis to be placed on family preservation and reunification. Let me be clear, these goals are not simply a matter of instilling the right attitude in women or even teaching them skills. These goals require that concrete, material resources such as appropriate housing are put into place for justice-involved women and their families. Many of these women need affordable housing, comprehensive day care and after school programs, and hiring practices that make it feasible for parents with criminal records to be become employed.

 Senate Bill 770, An Act providing community-based sentencing alternatives for primary caretakers of dependent children who have been convicted of non-violent crimes

Late in the day, way past school pick-up time, dinner time, kids’ bath time and homework time, we got to hear testimony from formerly incarcerated mothers and their children.

When mothers are sent to prison, their children become collateral captives, following their mothers into the institutional circuit and often ending up in foster care or living with an extended family member who may be less able to parent than the incarcerated mother.

In many cases, the children of incarcerated mothers are given into the custody of family members, a scenario that is not without problems. Often, the caregiver is a grandmother who, while well-intentioned, is not physically able to keep up with young children.  Children hear relatives speak ill of their incarcerated mothers, or feel forced into choosing loyalty to their mother or to another family member. In a few cases, custody actually has gone to a family member who sexually abused the mother when she was a child, or who implicitly or explicitly allowed that abuse to go on.

Foster care, of course, carries its own set of problems, ranging from frequent changes and churns to the well-documented overuse of prescribed psychotropic medications. For mothers, separation from children is experienced as a severe and ongoing trauma. These mothers frequently describe feelings of extreme helplessness, powerlessness, guilt, anxiety and panic, often leading to increased prescriptions of psychotropic medication.

The testimony of formerly incarcerated mothers and the testimony of children of incarcerated parents made it clear that it is in the interests of families to keep mothers at home, in the community, with adequate support (except, of course, in those few cases where mothers have engaged in acts of violence.) Creating community based sentencing alternatives for primary caretakers of dependent children will allow many more children to benefit from the on-going presence of their mothers at the same time as it will allow mothers to develop the resources, skills and support networks that they need in order to be effective parents.

This bill, too, has been heard before. Lining up to testify felt a bit like a reunion. Maybe this time we’ll see some real change.

 

The GOP’s Comprehensive Plan to Undermine Women’s Health Care

(Published June 20, 2017 in the Huffington Post)

As Senate Republicans continue to craft a healthcare bill behind closed doors, a Trump Administration’s reported plan  would exempt many employers from including contraceptive coverage in health insurance plans. While the Administration has framed their executive order as a protection of “religious freedom,” it is just one part of a frightening new wave of policies that will particularly harm women.

According to the Congressional Budget Office, millions of Americans will lose health insurance under the American Health Care Act (AHCA), already passed by the Republican House of Representatives. Low- and moderate-income Americans will lose the most because the plan decreases insurance subsidies and will eventually eliminate the Medicaid expansion.

This is especially troubling for women. Consistently, year after year, American women earn less than men. And according to the Department of Labor, women are more likely than men to be among the working poor. At the same time, women use more medical services and spend more on health care than men. They make more visits each year to primary care physicians and are more likely to take at least one prescription drug on a daily basis.

Under the House version of the AHCA and the Trump Administration’s order, women’s access to care through their insurance will decline. The bill eliminates the Affordable Care Act’s requirements for insurance plans to cover “essential benefits” like birth control and maternity care. Worse yet, this move will reduce the largest health safety net for women in the country. The Republican House plan singles out Planned Parenthood, prohibiting federal funding for one year after the law goes into effect.

Reduced access to birth control will lead to more unwanted pregnancies. Yet under the Republican House bill, qualified health plans cannot include abortion coverage except for pregnancies that present life-threatening physical risks and pregnancies that resulted from rape or incest. Not only does this reduce access to a needed medical procedure, but it also leaves questions about how to determine if a pregnancy is life-threatening or how to confirm if it’s a result of rape or incest. And it could potentially force women to prove—to the satisfaction of an insurance company—that she indeed was raped. This would certainly delay performing the abortion. Delays, in turn, present health risks to women.

The Republican House bill does allow insurance to pay to treat “any infection, injury, disease or disorder that has been caused or exacerbated by the performance of an abortion.” But legal abortions performed by a qualified medical provider in a suitable medical setting are extremely safe. While it is unlikely that the House’s intent is to encourage illicit abortions, this provision seems to acknowledge that an increase in unsafe abortions may be a consequence of the policy.

The Administration’s order and the Republican House bill will have devastating effects for women’s health in the United States. Our maternal mortality rate is already the highest among all developed countries.  And while this rate is decreasing in nearly every other nation, it continues to rise in the U.S. Our high maternal death rate is in part the result of unplanned pregnancies – more than half of all pregnancies in the U.S. – and a health system that makes accessing care difficult, especially for new mothers. The President’s order, together with Congress’s “repeal and replace” bill, will only lead to more tragedy. Now, the Senate has the chance to take out these harmful provisions and reaffirm the value of women’s health.

The “Price” of Health

 I’ve spent far too much time over these past months trying to understand why the current administration does not seem to understand (or care about?) basic health care facts:
  1. All people get sick and injured over their lives; all people feel pain; human experience is unpredictable and none of us knows when disaster will strike; and all (or at least most) people try hard to manage their pain, disabilities and illnesses so that they can continue to engage in the normal activities of daily life.
  2. All people need the help of medical experts in order to minimize the damage caused by disease and injury. In the twenty-first century, expert help and procedures and remedies involve substantial expenses.
  3. Even with careful planning, most Americans cannot save up enough money to cover these expenses, especially in cases of long-term or chronic health challenges.
  4. Health “insurance” that requires people to guess what care they will need (so-called “more choice for the consumer”) presumes that people can prophesy the future and / or avoid all illness and injury.
  5. When members of our communities cannot access appropriate health care there are consequences for everyone: Infectious diseases spread; people miss work and vital businesses and services become understaffed; production drops; kids fall behind in school; and some people turn to illicit substances (including alcohol) in order to self-medicate.
  6. See point #1.

These points are consistent with what most people observe and experience in their own families and communities and should, one might think, serve as the basis for health care policy. That, however, is not the case. As regarding many other issues, the current administration invokes an alternative set of “facts” regarding the nature of health and health care. These “facts” do not tend to be articulated in a coherent statement, yet they do emerge as a sort of sub-text in a variety of situations.

Ebola Winners and Losers

Last week newspapers reported on Health and Human Services Secretary Tom Price’s first trip overseas to Liberia, the West African country where more than 4,800 people recently died from the spread of the Ebola virus. A new Ebola outbreak seems to be emerging at this time but Secretary Price did not address that. Rather, he made a point of praising survivors of the earlier outbreak, declaring that: “We celebrate their victory over Ebola.” Now, from my perspective as a medical sociologist, it’s hard to see that those who survived Ebola are deserving of any particular praise. Is Price’s (unspoken) implication that these survivors somehow worked harder than those who died? That they were smarter or made better choices? That they were more morally deserving to live? And in praising the survivors was Price implicitly criticizing those who did not survive?

“Waging war” is not the solution this country needs

At the time of the first outbreak, I critiqued the U.S. rhetoric of “waging war” on Ebola. I voiced concern that we have come to rely on our military as the only governmental agency capable of responding to any sort of crisis. And I pointed out that our America inclination to frame social problems in terms of war underpins our troubled history of crusades to stamp out vices and diseases (the two words often are used interchangeably) ranging from alcoholism to obesity to cancer. Declaring war on disease sends the message that the sufferer is somehow at fault and wars on disease too easily turn into wars on those who embody the disease. Our racially driven “war on drugs,” more aptly described as a “war on drug users,” and has led to local police departments being armed with military equipment (including tanks) and to the highest rate of incarceration in the world.

Bleak Binary Terms 

In the era of Trump and Price the rhetoric of “victory” takes on whole new levels of significance. From the start, the Trump campaign framed the world, and the people of the world, in bleak binary terms of “winners” and “losers.” Famous Trump remarks include “Believe me. You’ll never get bored with winning. You’ll never get bored!” and “Work hard, be smart and always remember, winning takes care of everything!” Candidate Trump’s comment that best sums up the winners vs. losers world view concerned Senator John McCain: “I supported him, he lost, he let us down. But you know, he lost, so I’ve never liked him as much after that, because I don’t like losers…He’s not a war hero…He’s a war hero because he was captured. I like people who weren’t captured.”

The Price of Winning and Losing

In the world of health and health care, this paradigm is dangerous. It comes close to the rhetoric of the eugenics movement (developed in the United States and most famously and energetically adopted by the Nazis) – the idea that some people are inherently better than others (the winners) and that those people deserve social praise, resources, and encouragement to reproduce themselves. Losers, in contrast, should be marginalized and discouraged from reproducing.

Today, the Trump Administration unveiled its first budget – a budget that rewards strength and punishes weakness. According to the New York Times, “The document, grandly titled ‘A New Foundation for American Greatness,’ encapsulates much of the ‘America first’ message that powered Mr. Trump’s campaign. It calls for an increase in military spending of 10 percent … [It also] calls for slashing more than $800 billion from Medicaid, the federal health program for the poor, while slicing $192 billion from nutritional assistance and $272 billion over all from welfare programs [over the next decade].”

Winners and losers, indeed.

 

See  the following for more on winner/loser paradigm, the health care system, and the rhetoric of war on the Ebola outbreak:

Pink Ribbon Extravaganza

Health Insurance Roulette: The House Always Wins

Why Can’t the US Help Solve Ebola Outbreak without “Waging War” and “Sending Troops.”

Eulogy for Andrea

Andrea* was one of the most focused people I have ever known. From the first time we met at the Women’s Center at St. Francis House in Boston (she kindly participated in a five year project following the lives of women who have struggled with homelessness or incarceration) she clearly articulated her goals in life: She wanted an apartment of her own and she wanted to work in order to “keep busy.”

Andrea never liked lazing about, but the unfortunate combination of chronic heart disease, an employment landscape not suited to people with any sorts of disabilities, and dependence on social service bureaucracies that lacked the resources and the flexibility to help her find a long-term job placement kept her stuck in a cycle of short, dead-end, job training programs. “I have to stay focused,” she told me. “I’m forty-six. I don’t have time for [messing around] anymore. When you are sixteen or seventeen, bee-bopping around – that’s fun. But not at forty-six.”

Andrea was born in Mobile, Alabama, and moved to Massachusetts as a child. Raised by loving grandparents, she attended a school for kids with developmental disabilities. Andrea loved that school. One of the first times we met she told me that, “I wish I was back there now.” Looking back, I think she was longing for the sense of community and of having a place to go every day. Many times during the first years of our acquaintance she reminded me that her mother and grandparents had died and now she was alone. “I had four funerals in a row,” Andrea reiterated.

Andrea never seemed depressed, but she often felt sad or frustrated. “That is because my housing situation is messing with me. I don’t feel like myself. I’m lonely, discouraged. I sit down and cry and I see other people here [at the homeless shelter] get to leave and go home or go to different programs and I say ‘when am I going?’ I have nowhere to go. I pray to the Lord everyday to help me.” One time I asked her whether God gives her what she asks for. “He does, but on His timetable, not mine. But if I ask politely then I will get it, ‘ask and ye shall receive.’” I also remember her asking me to pass her concerns along to Mayor Menino. She was sure if he could hear her problems he would help her get housing!

Over the eight years that I knew her, Andrea completed numerous job training programs. Typically, these consisted of her being sent to work as a dishwasher or chambermaid for a few months, until the “training” ended. Then, after a waiting period, her social worker would send her to another training program. For the most part, Andrea saw these trainings for what they were: boring, somewhat exploitive, dead ends. But I recall one program that she loved. She worked for a few months in the cafeteria of a school for disabled children. She told me how much she liked going to work each day where people knew her and said good morning to her, and she liked asking the kids what they want to eat and serving them.  “I joke around with the kids and they joke around with me.” Like her other job training programs, this one did not lead to a “real” job. Still, for the months the job lasted she felt “lucky to have this job. I’m not bored.”

One of my favorite memories of Andrea came early in our acquaintance. Though she never was a drug user, she had been sentenced to drug court because someone staying in her apartment was arrested for selling drugs. The drug court protocol involved regular attendance as well as documentation of participation in Narcotics or Alcoholics Anonymous meetings. At drug court graduation each member of her drug court class was asked to stand up and say a few words. One by one, the others thanked the judge, parole officers, counselors, AA, family members and God for helping them in their recovery. Andrea, going last, thanked herself “for making it through this court.”

A few years ago Andrea finally moved into a studio apartment of her own. Still, she kept her eye on the prize – she wanted a “real” apartment, a one bedroom so that she could invite friends to sit in her living room.  But in the meantime she loved being able to watch television in her own space. Andrea was an avid exerciser and loved working out with exercise programs on television. She also loved to make up her own exercises, and often urged me to exercise more (she was quite right about that!) Back when she was in school she was quite an athlete: She even ran relays and hurdles in a local Paralympics. Up to the weeks before her death, Andrea continued to take great care styling her own hair and manicuring her nails. My own lackluster grooming was a frequent source of amusement to her!

As her health deteriorated, Andrea began to spend lengthy stints in the hospital and in nursing homes. I remember that one of the last times I visited her in the hospital she told me how much she liked being there: “They take good care of me. The nurse even said that if I’m bored I can come and sit by the nurses’ station.”  Andrea explained that she loves the food: “I can ask for whatever I want in my salad!” And while she rarely had a visitor, “the woman in the next bed told me that when I smiles it lights up the whole floor.”

A few months ago when I called her she told me that she was in a nursing home. “I hate to tell you, Susan, but my heart and lungs are not doing so well, so they brought me here. There’s nothing they can do for me at the other hospital. But I’m fine – I’m holding my own. I can still tell jokes and whatnot.”  A few weeks later she was sent back to her apartment. “No more hospitals. They can’t do anything for me. But I’m all right, Susan.” That was the last time we spoke.

Of all of the women who participated in our research project, Andrea was the most consistent about calling and staying in touch. Despite struggles with literacy and the lack of secure housing, she never lost my phone number or forgot to make the monthly call to arrange a time to meet. Still, I don’t think I ever really got to know her. Andrea craved social relationships yet was an intensely private person. To this day I do not know whether she saw me solely as a hoop she needed to jump through in order to get the T (mass transit) passes we distributed to participants in our study, or whether she actually liked having the opportunity to chat with someone who really wanted to listen to her. I don’t know why it bothers me so much not to know, but it does.

Andrea left behind a brother, a son, several nurses who gave her excellent care over the years, and a few close friends. I do not know if she counted me among those friends, but I do know that I will never forget her.

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*”Andrea” is a pseudonym. In consultation with the Institutional Review Board at Suffolk University, I maintain the confidentiality of study participants who have died.

Click here for more about Andrea and the other women of Can’t Catch a Break. Also see “Eulogy for Junie”  “Eulogy for Nicole”  “Orange Frosted Hostess Cupcakes (Eulogy of Linda)”   “Eulogy for Elizabeth”

2017’s Best & Worst States for Children’s Health Care

The following are responses I wrote as part of an article on children’s health care by Richie Bernardo in WalletHub, April 2014. The article includes wonderful state by state comparisons of a variety of indicators of children’s health.

What are the most important steps parents can take to help their children grow up healthy?
Unfortunately, parents tend to be blamed when their children grow up to have health problems, but most parents cannot control the economic and environmental factors that allow kids to grow up in good health.

I’d like to say: provide a healthy diet, make sure your kids get plenty of fresh air and exercise, keep them away from known pathogens. Yet it’s important to realize that many — perhaps even most — parents cannot afford a consistently healthy diet and/or are working too many hours in order to pay bills for them to have time to cook healthy meals everyday. Similarly, parents don’t control the levels of air pollution and water pollution that their kids are exposed to, and many parents raise children in neighborhoods in which there are no safe, green spaces for kids to play. And, given that most kids grow up in households where all adults need to work in order to get by, parents cannot avoid sending their kids to school when they are a bit sick.

I do think that most parents can restrict their kids’ access to the most nutritiously unsound foods (for example, sweet soft drinks, candy, processed meats) and can encourage kids to participate in gym and other school activities. I also think parents can and should make their voices heard in their communities and to politicians. If there is garbage on the streets in your neighborhood, bug the City to improve garbage pick-up. If nearby factories are shooting toxic chemicals into the environment, organize a protest.

Another piece of advice I’d give parents (and I am speaking as a mother of four as well as in my role as a sociology professor) is to help your kids find something that they love doing: drawing, singing, playing ball, doing math equations — whatever your kid likes. When we do things that we enjoy we feel better about ourselves and about the world, and that feeling leads us to want to make healthy choices. And something that nearly every American parent can and should do – vote, so that we can build policies that nurture kids’ health.

Do you believe children are prescribed too much medication in the US today?
Yes. I am especially concerned about the over-prescription of psychiatric medication in order to control the behavior of kids. While some kids are in fact deeply troubled and need medication, we shouldn’t be drugging kids for being “too” active or “too” disobedient. I also am concerned about the over-use of over-the-counter medication for colds and coughs. Oftentimes, what kids (and adults) need is rest and soup, but television ads encourage us to purchase quick fixes for ailments both major and minor.

Do you think the government should ensure all children have health insurance coverage?
Yes, absolutely. It is devastating for parents not to be able to take their kids to the doctor, and untreated illnesses cause kids to fall behind in school and in overall physical, emotional and cognitive development.

In evaluating the best states for children’s healthcare, what are the top 5 indicators?
Since S-CHIP is a federal program, there is not a huge amount of difference between the states in children’s access to care. However, there are enormous differences among the states in adults’ access to care. In states that expanded Medicaid eligibility under the ACA, most adults now have healthcare coverage. In those states that did not expand Medicaid, the numbers of uninsured adults have remained higher.

While all parents do their best to raise healthy kids, parents who are struggling with their own poor health have the cards stacked against them. So, I’d say the number one indicator at this time in the U.S. is the overall rate of health care coverage for all people — children and adults. Other factors that I see as important include well-resourced school nurse programs, strong immunization programs, strong oral health care programs, strong vision and hearing screening and programs.

Repeal and Replace is a Women’s Issue

The Republican plan to eliminate or change substantial portions of the Affordable Care Act is likely to have a disproportionately deleterious impact on women. This is why.

 Women compared to men use more medical services and spend more on health care. Thus, any reduction in government support for health care will affect women more than men.

Women make more visits each year to primary care physicians than do men and are more likely than men to take at least one prescription drug on a daily basis.  According to the Health Care Cost Institute, “In 2015, spending was $5,684 per woman and $4,581 per man. …  From 2012 to 2015, the difference in spending between genders rose from $1,071 per capita to $1,103 per capita.  Per capita spending for women was higher than for men on every type of service, except brand prescriptions.”

Given women’s higher healthcare needs, the ACA protected women by requiring all plans to meet a minimum level of coverage that includes a basic basket of necessary services. The Trump administration has announced that they will reduce the price of premiums so that Americans can have more “choice” to select less expensive insurance.  Less expensive insurance typically covers less, which disproportionately hurts people who have need of more medical services. Lower premiums also may come with higher annual deductibles, meaning that people need to spend a large sum of money out-of-pocket before insurance will pay. Again, this places a particularly heavy burden on people who need more healthcare services.

In particular, women are more likely than men to suffer mental health challenges and women make substantially greater use of mental health services. Beginning in 2020, the GOP plan would eliminate the current requirement that Medicaid cover basic mental-health and addiction services. This roll back of mental health parity requirements will disproportionately hurt women.

 Women are less able than men to afford health care.

According to the Department of Labor, women earn less than men. In 2014, for example, women who worked full time in wage and salary jobs had median usual weekly earnings of $719, which was 83 percent of men’s median weekly earnings ($871).

The Republican plan emphasizes tax credits and health savings accounts, both of which are irrelevant to low-income Americans.

According to the Department of Labor, women are more likely than men to be among the working poor. This is the group that has the most to lose with the Republican plan to decrease subsidies and eventually eliminate the Medicaid expansion.

The Republican approach to Medicaid disproportionately impacts women.

Nationally, women make up 56% of Medicaid recipients (in 2015). In states that did not expand Medicaid under the ACA, women are an even greater proportion of Medicaid recipients. In South Carolina, for example, 67% of Medicaid recipients are women. In Nebraska 66% are women. Thus, phasing out the Medicaid expansion will disproportionally hurt women.

The ethos of suspicion directed at Medicaid recipients will further hurt women. For example, the Republican plan requires states to re-determine Medicaid eligibilities “no less frequently than every six months.” Given that women bear the greater share of responsibility for arranging health care in American households, the need to frequently recertify eligibility will place an increased time burden on women to keep track and show evidence of eligibility.

Near elderly women are at particular risk of losing coverage under the Republican plan.

Women are less likely than men to be insured through their own job (35% vs. 44% respectively) and more likely to be covered as a dependent (24% vs. 16%), a disparity that reflects the fact that women are more likely than men to work at part-time jobs in order to carry out duties as primary caregivers for children, sick and disabled family members, and elderly parents.

At the same time, many American women are married to men who are slightly or significantly older than they. This means that when the husband retires and becomes eligible for Medicare, the wife loses the “dependent” coverage she had while her husband was employed, but she herself will not yet be Medicare eligible.

This age group has particularly high healthcare needs that may become exacerbated while waiting for Medicare eligibility.

Under the A.C.A., plans can charge their oldest customers only three times the prices charged to the youngest ones. The Republican plan allows insurers to charge older customers five times as much as younger ones and gives states the option to set their own ratio.

Planned Parenthood

The Republican plan singles out Planned Parenthood, prohibiting federal funding for Planned Parenthood for one year beginning with the enactment of the law. This will have a disproportionately negative impact on women.

Two and a half million women and men in the United States annually visit Planned Parenthood affiliate health centers for a variety of healthcare services. Most of these people are women who would stand to lose a wide range of primary healthcare services including, but not limited to, contraception.

 Abortion

Under the Republican plan, qualified health plans cannot include abortion coverage except for pregnancies that present life-threatening physical risks (not mental health risks) and pregnancies that resulted from rape or incest.

This provision not only reduces access to a needed medical procedure, but it also seems to require some sort of process for determining whether a pregnancy is life-threatening or confirming that a pregnancy is a result of rape or incest. This potentially could force women to prove (to the satisfaction of an insurance company) that she indeed was raped, and it certainly would delay performing the abortion – a delay that in and of itself presents health risks to women.

The Republican plan does allow insurance to pay to treat “any infection, injury, disease or disorder that has been caused or exacerbated by the performance of an abortion.” Since legal abortions performed by a qualified medical provider in a suitable medical setting are extremely safe, this provision seems to be set up for women who have resorted to “backstreet” abortions. While it is unlikely that the plan’s intent is to encourage illicit abortions, this provision seems to acknowledge that an increase in unsafe abortions may be a consequence of the plan.

This analysis was prepared by Susan Sered on March 8, 2017. Healthcare legislation currently is highly volatile with many changes proposed. Stay tuned – I will come back and update this analysis as more information becomes available.

Related articles: Uninsured in Texas, Then and Now     Faces of the Newly Insured      Health Insurance Roulette: The House Always Wins

The Women of Can’t Catch a Break: January 2017 Update

Life is never boring for the women of Can’t Catch a Break. Over the past months they’ve faced serious health problems; they’ve struggled to care for their children and grandchildren; they’ve suffered at the hands of violent men; and they’ve remained trapped in an institutional circuit that often seems to present more hurdles than actual help. Yet that is not the whole story. Many of the women continue to build and draw upon social networks that provide them with places to stay, help with childcare, emotional support, and medical advice.

See Summer 2016 Update to catch up on the women and to help put the January 2017 update into context!

 

Andrea has not been well. Though trim and fit-looking (she’s an avid fan of exercise tapes), she’s been having trouble breathing and her body has been retaining fluids for almost a year. By December 2016, after a string of hospital stays, she was placed in a nursing home. When we spoke she told me, “I hate to tell you but my heart and lungs are not doing so well, so they brought me here. There’s nothing they can do for me at the other hospital.”

I’ve known Andrea for almost a decade and I still can’t tell whether it’s stoicism, fatalism, optimism and / or complete trust in modern medicine, but she was far more upbeat than I imagine that I would be in her situation. As always, she is comfortable staying in a medical institution — perhaps more comfortable than staying at home. Unable to read (she has had mild cognitive disabilities all her life), she finds navigating daily life on her own to be a challenge. In the hospital or nursing home she is looked after, there are professionals around who can explain things to her, and with her friendly demeanor she can always find a nurse or other staff person to chat with her for a bit. “I’m fine, Susan,” she told me. “I’m holding my own. I can still tell jokes and whatnot.”

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Carly (see “A New Home for Carly“) still has not received her baby back from DCF (child welfare department.) Without the baby, she is no longer eligible for the housing subsidy for her two bedroom apartment. For several months after losing her apartment she was on the streets. As of this writing she is couch surfing with a “friend”. (I put “friend” in quotes because Carly has a long history of being taken advantage of and even robbed and raped by so-called “friends”).

Since the baby was taken away, she has become extremely distressed, tormented by hostile spirits, suspicious of conspiracies to hurt her and to steal her baby, and hospitalized (voluntarily and involuntarily). During one hospitalization, “I was shot full of drugs – of Haldol. That’s why I won’t go back there.”

Through all of this, she remains focused on getting her baby back and attends frequent meetings and appointments with social workers, court-appointed psychologists, lawyers, and doctors. She carries around a large pack with her everywhere she goes. The pack contains “all the papers that prove that the baby is mine and that I took care of her properly. I have her umbilical cord, her footprint from the hospital, and records showing she had her infant check-ups.”

I have spent a great deal of time with Carly and honestly cannot figure out how much of what she does and says has to do with her deeply held belief in the active presence of good and evil spiritual powers in this world; how much may be symptoms of mental illness — even psychosis; and how much may be simple naivete. I can say that from what I’ve seen she took proper care of her baby, but I acknowledge that Carly likely tries to show me that she is stable and competent. I don’t envy the DCF workers, psychiatrists and judges who ultimately will decide whether the child is better off with Carly or in foster care.

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Daisy remains limited in her ability to care for herself, but both of her children have stepped up and are able to help her out. Her son has arranged for a supermarket to deliver food to her at regular intervals. She is not up to cooking (she is allowed to use the kitchen in her rooming house), but can prepare simple breakfasts and frozen meals for her lunch and dinner. She continues to enjoy the program for disabled adults that she attends three days each week, and considers the other people there to be her friends. And, “I do my laundry every single weekend.” She sees her daughter at regular intervals and her son and his wife took her along on a road trip to Ohio to visit her in-laws for Thanksgiving.

She does feel lonely much of the time (on the days she does not go to her program she rarely talks to anyone), and spends more time than she’d like cooped up in her room watching television.

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Francesca (see “The Bitch at the Welfare Office“) is still living in a working-class suburb with her son and younger granddaughter. She is busy raising the child and has landed a part-time job at a local supermarket. She does not earn enough to be independent, and continues to rely on her son and boyfriend (she has been in several serious relationships during the past year) for financial support. Unfortunately, that support comes with strings attached. In the case of her son, the strings are expectations that she take on the lion’s share of child care. In the case of her boyfriend, the strings are a matter of exerting control over her time and activities. But overall she is happy with her current life and posts encouraging comments on Facebook at least once a day.

One of Francesca’s greatest assets is her ability to nurture social ties. Over the years she has maintained a strong relationship with the mother of her older grandchild. That relationship is paying off now as the two women help one another with child care. All in all, Francesca has managed to create a safe, cozy and loving family and home for her granddaughter.

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Ginger (seeThe New Price of Freedom“) is back in touch with me on a regular basis! In the summer and early fall she was living on the streets. When I ran into her she told me she was smoking a lot of crack and staying with her “trans mother” (an older woman who had helped her come out as trans when Ginger was in her teens.) A mutual friend told me that he saw her fish around in the garbage and take out a cup and then sit down on the sidewalk with the cup in front of her to panhandle.

A few weeks later she called me from a “safety” phone that she had been given by an agency that helps homeless people. She had moved in with her Aunt after “a homeless man from the Boston Common hit me in the head.” She had a concussion and spent three days in the hospital. When we got together for coffee she told me that she actually had been beaten up three times by the same homeless man who called her “ugly names” because she is trans. When she went to the police they told her they wouldn’t do anything because they told people to stay out of the Common at night. She also had her ID stolen. When she went to meet with a housing advocate he told her that she needs to get her ID first. For Ginger, this is a pretty overwhelming task, involving visits to various offices and paying fees that she cannot afford to pay.

Throughout late fall and early winter she has stayed off crack, resumed her beloved weekly bingo games, and returned to the excellent doctor who has helped her with anti-depressants and hormones over the years.

In November she moved in with an old boyfriend who lives in a rooming house (SRO) but, “We got into a domestic dispute. He hit me over the head with a lamp.” I asked her if she called the police. She said she couldn’t “because I’m a known trespasser [in his building] and they’d arrest me.” For now, she is staying with his brother and trying to move forward on getting her own housing.

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Isabella (see “Failure by Design: Isabella’s Experiences with Social Services“) continues to grieve for her late husband. Over the past months she’s lived in several different apartments, each of which turned out to be problematic. She has come close to getting a job but in the end things have fallen through. She continues to help out friends and acquaintances who need to get into detox or who need help managing their methadone regimes or other drug-related health problems.

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Joy continues to cycle through psychiatric wards throughout the Commonwealth of Massachusetts. In September I visited her in a locked psychiatric ward where she’d been taken after attempting suicide. She told me that she had overdosed. “I just tried to end it. But someone found me and here I am. I woke up in the hospital with tubes everywhere. They told me I almost died. … I had not used drugs for a long time. I got high that one night to kill myself.” The person who found her called 911, and then stole her phone.

A long chain of miserable events had led her to the point of wanting to end her life. Both of her parents have been unwell and may not be able to care for her daughter for much longer. She did not have a place to live and had been staying with a man who constantly criticized her and told her that she can’t do anything right. And she’d spent the previous month in prison. “A drunk woman started fighting with me [in the street.] I slapped her to get her to let go of my hair, and the police arrested me. I was still on probation from [an old] charge of soliciting a police officer [for sex] so they locked me up. I asked them to take me to a hospital and the police refused. When I saw the judge after a month he said to me, “You’ve been in my courtroom at least twenty times. I see that you have paid all but $260 of your restitution and fees [on old charges]. That’s enough. I’m releasing you on time served and remitting the remaining payments. Your probation is terminated.” Joy plead guilty (she told me she didn’t know why) “and that was that. I was released.” Unfortunately, on that same day a former boyfriend who had beaten her up (badly) was in court on the domestic violence charge. Because she had to come to court for her own hearing she was not able to go and testify at his hearing, and he was released. She asked to be able to go and testify but “I was told that wouldn’t be possible because I had to appear at my own hearing.” After he was released, Joy said, he told people that he would track her down wherever she went. She is terrified of him.

While we chatted at the hospital I noticed that her eyes were puffy and her speech slightly slurred. She said she was given Librium to help detox from alcohol – she had begun drinking over the summer and had become addicted. She’d also been put on Haldol and a few other psychiatric medicines.

Her hospital caseworker joined us and we talked about where Joy would go after the hospital releases (at some point in the next few days.) The caseworker had been tasked with setting up Joy’s outpatient therapy, not with finding her a residential program. Joy made her own call to a rehab program she’d been in previously and was told that they couldn’t take her unless she detoxes there first. “But I’ve already detoxed here! They told me to get high and then come to detox and then I could get into the program.” The caseworker confirmed that this is indeed the case, and told Joy that, “You need to do what you need to do to get into a program.”

We asked the caseworker about getting Joy into a group home under the auspices of the Department of Mental Health (DMH). The caseworker explained that group homes only accept people coming from state mental hospitals and Joy is not sick enough to need to go to the state mental hospital. I pointed out that Joy has repeatedly tried to kill herself. She replied, “Joy is high functioning and does not fit the criteria for a state hospital. What you need to do, Joy, is go to a homeless shelter. They will work with you to help you save money so that you can get an apartment. You need to get a job and then the shelter will reserve a bed for you. You need to go to your outpatient appointments and see the doctor. It’s a lot of work but you have to do it. It’s up to you to do the work.” Incredulous, I pointed out to the caseworker that Joy cannot get a job or an apartment. She has three felony convictions, has been homeless since age 18, and has already been in just about every shelter and program in the state.

We then asked what will happen if no placement is found for her when she is discharged. “You will be given two weeks supply of your medication and we’ll set up an appointment for you with an outpatient psychiatrist.” Joy pointed out that it takes longer than two weeks to get an appointment.

The caseworker was not being mean-spirited. Rather, she was a very young woman with no concept of the realities of life faced by someone like Joy. My sense is that she truly believes that if Joy tries hard she’ll make things work.

By November Joy was in another locked ward in another hospital – her third of the fall. When we spoke on the phone her speech was slurred from the medication they gave her. “They are discharging me today – couldn’t find a program or placement. They’ll pay for a taxi.” She told me that she would be going back to [the emotionally abusive] man she’d been living with when she’d tried to kill herself in September. She knew this wasn’t a good solution, “but I have nowhere else to go.”

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Kahtia (See “Prostitution, Decriminalization and the Problem of Consent“)

Throughout the first part of the fall Kahtia was doing well – volunteering everyday at a soup kitchen and attending multiple AA and NA meetings each week. With pride in her voice, she told me how many people the soup kitchen feeds each day and how much the staff appreciates her dedicated work. Most important, the family court judge told her that if she continues doing what she has been doing she will get her daughters back from DCF custody in a few months.

Her daughters were not doing as well. They had been taken away from their third foster home because the foster mother hit one of them. Now in foster home number four, one of the girls had become very introverted. The new foster mother took them for haircuts, which she is not supposed to do without Kahtia’s permission. “She gave them yuppy hair cuts. I mean, they look cute but it’s not what I would have done.” Kahtia expressed concern that the girls will become accustomed to living in a wealthier household and will resent her when they come back home to her.

Later in the fall Kahtia called to tell me that, “I am going through the worst thing in my life. DCF entered a charge of sexual and physical abuse against my husband [the girls’ father]. They haven’t told me any details and they’ve canceled home visits for the girls.” The story, as best as she can figure it out, is this: Quite a while ago, before she lost the girls, they told her that “Daddy touched me”. She took them to the hospital where they were examined but there were no physical signs of rape and no follow-up inquiry. Several months into their foster care time they said the same thing – that “Daddy touched me” (apparently referring to the same incident.) The girls spoke with their therapists but nothing more was said and nothing else happened. Then, almost a year later, in their third foster home, they mentioned it again. “They sent them to a  trauma specialist – I don’t even know what that is – and now the whole thing is under investigation. I don’t know why they talked about this now. Did something new happen in foster care that triggered them to say this? I don’t know what is going on. I don’t know if my husband really did hit or sexually abuse the girls. I feel guilty for not protecting them. Or if the whole thing is made up by DCF? I don’t know. I’m devastated, Susan, especially, you know, because I was a victim of incest and of rape.” She told me in tears, “All I ever wanted was a family, a husband and my children, a house with a white picket fence and a dog in the back and a cat on the window sill.”

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Melanie‘s doctors seem to have stopped looking into her medical problems and are concentrating solely on her PTSD. She has been placed on Disability (SSDI), which does not please her. But she is allowed to work part-time and has arranged to return to the shelter where she had been working, albeit as a “relief” staff rather than a shift supervisor.

Her big news is that — after several tries — she passed her test for her learner’s permit. She feels that she is able to drive, but because of her learning disabilities she’d “bombed” the written test. This time she was allowed to take the test with pencil and paper (instead of on the computer), and the person who administered the test was nice, which allowed Melanie to relax and focus on filling in the right answers. “I feel that everything is coming together!”

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Tonya (see “Knowledge is Power“) is still living in the same apartment. She is dedicated to raising her son and helping out with her grandchildren. Much of her time and resources are eaten up by  family members who come to her for a place to stay and assistance of various sorts.

Her son is now in school and there is no role for her there as a volunteer. “I need something to do but don’t know what to do.”

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Vanessa, now a grandmother, is staying at a homeless shelter. She has not had stable housing for several years. She looks forward to holidays when she can come stay with her mother for a few days. Other than those visits, she seems to be holding steady — no major disasters but no progress in terms of housing or employment.

 

To read previous updates click on:  Summer 2016  New Years 2016   Summer 2015   Christmas 2014 / 2015    Fall 2014 

 

 

Uninsured in Texas, Then and Now

In previous posts, I shared stories of Americans who had been uninsured when I first met them a decade ago and who, in the wake of the ACA, now are insured. These stories were inspiring, encouraging and – in a few cases – disappointing in that health insurance alone cannot make up for a lifetime of sub-par living conditions, harmful working conditions, and the cumulative ill effects of inadequate health care.

As the president-elect and Republican congressional leaders are reiterating promises to repeal the Affordable Care Act, it’s crucial to remember what it’s like for Americans to try to scrape by without dependable access to health care. The experiences of people living in states that elected NOT to expand Medicaid eligibility under the ACA serve as a wake-up call for what things were like during the bad-old-days. In this article published in Health Affairs I share the story of Texas parents valiantly struggling to care for a child with disabilities, even while their own health deteriorates due to lack of medical attention.

I ended that article with a section I called “Playing Prophet.”

For the time being, at least, it seems unlikely that the Texas health care landscape will change. The barrage of anti-Obamacare radio, television, and billboard ads I heard and saw when I visited Texas during my research represent a well-financed campaign that, unfortunately, has convinced even those people who would benefit the most from the ACA.

Luis and Daniela’s situation probably won’t change much, either. Luis will get older, still working long shifts driving trucks and loading and unloading them. Daniela will age, too, still lifting Alexa. Alexa will never be able to care for herself. And her brother, now a teenager, will age out of CHIP and either become one of the lucky few in the Rio Grande Valley who finds a job that offers insurance or hope and pray that he remains healthy enough not to need much medical care. It’s likely that the next time I visit them, either Luis or Daniela, or possibly both of them, will have become too disabled to continue working and finally will have health care coverage through Disability—which will come at the price of a substantial drop in family income as well as a blow to their self-esteem as providers. It’s hardly an ideal solution for their family or for Americans overall.

Post-election, this prophecy actually feels overly optimistic. In light of Republican promises to privatize Medicare — as well as the president-elect’s mocking impromptu performance and history of unethical practices regarding people with disabilities — I fear that the family’s worry that Daniela will end up in a horrid, underfunded institutional will happen sooner rather than later.