This left me with my trusty headlamp, my speculum, and sperm donated by an old friend from growing up — a gay man who also planned to love my baby. In what was becoming our own weird tradition, I cooked him dinner and then left to walk my dog while he ejaculated into a red plastic solo cup. After my friend let himself out of my apartment, I began “washing” the sample he left on my bathroom counter, a procedure that separates the sperm from the semen surrounding it, using a $60 centrifuge I purchased from a science supply store.

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I tried to inseminate at least twice per menstrual cycle, and it became so routine that my friend once accidentally blurted out that he needed to go jerk off at my place when a coworker asked why he wasn’t staying late for a team dinner. It was pure queer magic. I became pregnant after nearly a year of this.

My pregnancy, sadly, ended in stillbirth, for reasons totally unrelated to how I became pregnant (I contracted cytomegalovirus, a common virus that causes mild cold-like symptoms in adults but can be lethal for a fetus). Like many relationships that are tested by stillbirth and grief, my friend and I are no longer close. Certainly not close enough to resume trading a home-cooked meal for a party cup of semen.

Adoption was actually my first choice for parenting, but it is not friendly to low-income people. It often costs $20,00 to $40,000 or more for private domestic adoptions, and fostering or adopting through the deeply flawed child welfare system involves an extensive assessment process that costs around $900 to $3,000. Though grants and other forms of financial assistance are often available for the assessment itself, it’s likely that evaluators would count my poverty, my small apartment, my queerness, my disability, my background and beliefs as a radical activist, and even my sweet old pit bull as strikes against me. So for me to be a parent — for me to get to experience the sweetness of morning cuddles, the endless questions and challenges, the beautiful and mundane care work of guiding new life across a dying world — pregnancy is my best option.

However, without the ready access to fresh sperm that my friend provided, getting pregnant again will be expensive as hell. In addition to purchasing the sperm itself, which often retails for more than $850 a vial, there are storage fees ($350 per year), shipping fees ($180), and fees for viewing donor profiles ($50 for three months). All for a single attempt at insemination.

And it usually doesn’t stop at just one vial: Even for people in their 20s and early 30s, when it is generally easier to conceive, IUI has a success rate of less than 20 percent per attempt, and typically needs to be tried multiple times. In fact, in one study, only 24 percent of people had a live birth after 3 cycles of IUI, even when they attempted two IUIs per menstrual cycle. And while the birth rate rises with more IUI attempts, so does the cost.

In other words, even assuming the bare minimum cost for each IUI attempt, three attempts at IUI could cost $3,490, for a one-in-four chance of becoming pregnant.

And that’s just the sperm. Conception-related health care is also expensive, with costs for IUI in a clinic ranging from $250 to $4000 per attempt. Fertility specialists recommend moving to in vitro fertilization (IVF), which begins at $12,000 to $15,000, after three unsuccessful IUI cycles. Insurance companies, however, often demand that prospective LGBTQ parents “prove” their infertility by paying out of pocket for six or more in-clinic IUIs before providing insurance coverage for IVF (self-insemination doesn’t count towards this total). This means that, even with insurance, queer people might have to spend over $30,000 ($6,580 on sperm and another $24,000 on clinic fees) before their insurance begins to cover fertility care. (Straight, cisgender couples, in contrast, typically receive coverage if they report having unprotected sex for 6 months to a year.) For people who rely on surrogacy, the costs often start at six figures in the U.S.

These costs are obviously not an option for low-income people. So, we either don’t have kids or we get creative. Hence the duct tape.

Studies show that queer people want children at the same rate as straight people, but our access to parenthood is limited by our statistically lower incomes and, for those of us who don’t produce it, the price of sperm. The high cost of fertility treatments like IUI is often significantly, disproportionally burdensome for queer people, who are more likely than our cishet counterparts to live in poverty, especially if we are people of color, trans, gender nonconforming, or women.

Queer people like me are also more likely to have or acquire disabilities — in my case a brain injury from police brutality. Disabled people are almost twice as likely to experience poverty, with even higher poverty rates among disabled women, gender minorities, LGBTQ folks, and people of color. People who receive certain disability benefits can lose them if they ever amass assets worth more than $2000, which prevents disabled people from saving up for sperm, pregnancy, or parenting.

Sperm banking is a big business, with profits reported at almost 4.8 billion globally. Sperm banks are just one facet of the rapidly growing — and incredibly profitable — fertility industry, valued at 8 billion dollars in the U.S. alone. This industry is prone to predatory behavior, and increasingly controlled by venture capitalists.

Regulation might help with this, especially if it was designed to explicitly protect queer families and other oppressed groups. In addition, there is no reason to require people to undergo psychological evaluations (another expense) nor get a physician’s permission to purchase and receive sperm, though many sperm banks and clinics do.

Currently, just one state (New York) extends fertility coverage to people on Medicaid, the largest insurer of people living in poverty; fertility coverage for people on Medicaid must be extended nation-wide. Further, only 19 states mandate that private insurance companies cover any kind of fertility-related services. As described above, insurance industry policies often result in queer people having to pay dramatically more for care than straight couples.

A recent lawsuit against Aetna Health claimed this disparity constitutes a violation of Section 1557 of the Affordable Care Act, which bans insurance companies and health care entities from discriminating on the basis of sex. Though Aetna updated their policy within days of the lawsuit, Section 1557 should continue to be applied to ensure equitable treatment of LGBTQ health care consumers, including when it comes to building our families. I also want more legislation, such as the law recently enacted in Illinois, designed to prevent queer parents from having to pay more than our cishet counterparts to access fertility treatment.

Until we have equitable policies that protect us, queer people will care for each other, including helping each other build families. I started teaching friends and neighbors in my local queer community how to wash sperm and perform IUIs on themselves and their partners, usually in exchange for beer and pizza. Many of my friends were using known donors for the same reasons I had: cost. Even folks who were using sperm banks often wanted to do their own IUIs to save money after the outrageous amount they had spent acquiring each precious vial of semen.

I still dream of parenting, but it seems more and more out of reach as I approach 40 and my credit card debt gets worse, not better. I know I’d be a good parent, in that I would love my child hard, with the same drive that had me taping a mirror to my bathtub and processing semen in a centrifuge meant for high school chemistry classrooms. What stops me is not doubt, or even exhaustion, but the cost of being beautifully queer in a world that privileges heterosexuality.

He didn’t laugh. He didn’t rationalize why it was necessary to send me so far away, even though there were plenty of prisons on this side of the state. He didn’t tell me that the mental health of my daughters wasn’t worth protecting. I might as well have been invisible, he was so dismissive of my distress, as he said, “Your file says you’re incarcerated for armed robbery, Mr. Moore. Tell me, did you rob old people, too?”

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My ten-year-old daughter is not doing well in school. Remote learning due to COVID-19 restrictions has failed to hold her attention, and she’s teetering dangerously close to having to repeat the fourth grade. I’ve been there. One year, I was only passed with an “incomplete” because I’d caused enough trouble that the school wanted me out as quickly as possible. I’m pretty sure I could help my little girl if I was around, but I’m not. I haven’t held her since she was four, because for the past seven years, I’ve been the property of Washington’s Department of Corrections (DOC).

Even before the pandemic, trying to arrange a visit was a nightmare. Her mother would have to go to the DOC’s webpage and fill out the tedious application. She would have to submit one for herself as well (minors aren’t permitted to visit their incarcerated parents without a guardian — or somebody approved by their guardian — present). That means she would also have to request to be removed from her incarcerated cousin’s visiting list, since an individual can only be on one prisoner’s list at a time in Washington state. That process alone would take three months to accomplish.

She would have to scan a copy of a completed and notarized consent form and send it along with the application. She would have to do that part at somebody else’s house, as she doesn’t have a scanner of her own. She and I didn’t exactly part on good terms, and this is a lot of work and embarrassment to endure, so she made a deal with my daughter: Get your grades up, and you can visit your dad.

My 16-year-old wants to be a journalist when she grows up, and she’s growing up fast. Her mother is poor and I’m not much help from prison. So my teenager, sensing she’s going to need savings for impending adulthood, works at a pizza shop rather than focusing on her education. I’ve offered to help her start getting published in order to build a portfolio that could potentially earn her a scholarship someday, but she’s too preoccupied with work and high school to even go through the process, let alone think about her long-term future.

Then there’s my young ones on the opposite side of the world, in London. Visiting has always been available to them, but the expense does not permit their traveling so far to see me. A flight for one is costly enough without having to multiply it by four.

Before COVID lockdowns, prisoners could receive visits three days a week. Bulky guards would march between tables with their chests out, watching for any physical contact beyond the touch of a hand between the parents. No touching shoulders. No brushing faces. No kisses or hugs, beyond a brief embrace and peck at the beginning and end of the visit. The tables were placed so close together that free movement for children was not always an option. There was a small play area with toys and video games, but it wasn’t designed for parents wishing to spend time with their spouses as well as their kids.

As soon as COVID-19 began to reach American prisons, it got much worse. Guards weren’t mandated to wear masks until the outbreak they’d introduced into our home led to a riot. Though the vaccine is finally available to anybody who wants it, some guards are refusing to take it. Meanwhile, visits — along with all religious, educational, and self-help programming — were canceled.

More than a year after Governor Inslee declared a state of emergency, visitation finally reopened. Initially, visits were permitted once a month, for an hour at a time, for two people. I heard from my neighbors that the visit was non-contact through a plexiglass box with holes drilled about knee high. Visitors had to sit on chairs, and they bent their waists like they were about to dive as they yelled to be heard above the chatter. Children under 16 were not allowed to attend.

On August 15, 18 months after the pandemic hit the United States, three hour contact visitation for up to three guests finally resumed. The age restriction was lifted, and families all over the state breathed a sigh of relief.

I expected complaints to still fill the air as, after all, visitation would still not be what it had been. Masks were now necessary, and meals could no longer be shared. I guess most of us were just so relieved to have contact visits again that we accepted what we felt would do us and our children some good.

Upon reflection, we know that so many holidays and birthdays have passed and although it’s been a long time since we’ve seen the faces of our young, we haven’t forgotten them. Despite DOC’s actions, we are more eager than ever to see them again. It’s been too long.

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Like many of my cohorts, I was sold the line that higher education was the golden ticket to a successful life. Off I set at eighteen to Eastern Michigan University, sure of what I wanted and what I would do. But life being as it is, and plans going the way they often do, I didn’t graduate. I dropped out to have a baby, joined the Navy, was medically discharged, and left drifting without tangible purpose. This is at least in part due to my husband’s active duty status, taking us overseas. This is not unusual, as the same manifesto notes that as of 2017, 60 percent of non-traditional students are women. At least I had my Post-9/11 G.I. Bill, a college payment incentive offered for military enlistment after the 9/11 attacks, and since my life became more stable in my late 20s and early 30s, the time seemed right: I enrolled at the University of Hawai’i at Mānoa.

As a disabled veteran and mother of a teenager, I knew some of the challenges awaiting me after admission. Being significantly older than my peers and being mistaken for a graduate student or instructor were odd blows to my self-esteem. There were numerous others I’d not considered. But as I sit here three weeks from graduating at the time of this writing, I’ve realized that I’ve succeeded despite higher education institutions failing to understand the needs of non-traditional students.

The university experience in the United States is designed to pipeline high school graduates through it and into the workplace as fast as possible, even with the reality that financial success is not necessarily waiting at the other end. Our campus is full of eye-catching signs encouraging undergraduate students to finish in four years, encouraging a fifteen-credit course load if you mean to finish within four years, instead of a full-time load of just twelve. Each syllabus reminds us that we should expect three hours of outside class work per week per credit hour. A fifteen-credit schedule alone starts with fifteen hours a week under instruction. If each class sticks to only that three hours per week outside of class, you’ve racked up forty-five hours of homework. Being a full-time student is more than full time. If your only responsibility is class, and you budget your time well, that may just be doable.

As a theatre major, like many other majors, it’s also not unheard of to have to fit in many outside-of-class activities. I study stage management and playwriting, and that requires me to run shows. I am lucky to have instructors who help me find alternate routes to these requirements, but not every department is this accommodating.

Class and homework are not always the only things people are balancing.

In addition to family duties and disability status, I’m an author, which is a demanding job that comes with irregular hours, most of them unpaid. My time is valuable. My work and financial circumstance allow me to put projects on pause, to the frustration of my ambition. But I still find it difficult to keep up with the amount of self-promotion being an author requires. I was asked to choose between my GPA and my income.

My share of the responsibilities of my home life doesn’t stop for my school day, not if we want things like packed lunches and clean underwear. Even with on-campus services like the Student Parents at Mānoa (SPAM), who help to fill in gaps in childcare, there are limitations. Families need fed. Meals need planned. Perpetual chores pile up each and every day, even if you did them the day before. My family is great about sharing chores, but they have school and jobs too. Of course, traditional students often have to deal with this, as a record number of young people currently live in a household with at least one other generation, which only further emphasizes the need for more support.

And commutes! My commute of twenty miles one way is over an hour. By the time I get home, with a mountain of homework or paperwork, those languishing piles of laundry and cat boxes in need of scooping make me want to cry. Plus, between commuting, family care, instruction time, homework, paid and unpaid non-school work, sleep must happen.

As a person living with chronic pain and mental illness, I often find the demands on my time challenging. My mobility is largely unaffected, which is good, since several of the buildings I frequent lack elevators for my second and third floor classes. With chronic pain often comes chronic fatigue, and while I can make it up and down all of those stairs, it takes its toll.

Managing disability and mental health requires appointments. Appointments take time out of home, work, rest, and class since they tend to be during standard business hours. Going to school for me means staying on my medications. Keeping that medication requires monthly appointments. Many classes penalize overall grades — some as much as one-third of a letter grade deduction — for missed instruction time. If you maintain attendance and miss appointments, health issues inevitably arise, requiring more missed class hours. My teenage child also has appointments, which my spouse and I must take turns with so neither of us miss too much work or school.

Most campuses now have disability services, like UH Mānoa’s Kōkua office. For many students, knowing what accommodations to ask for is daunting. What help can they offer for missed meds and bad traffic? Even if you know what to ask for, it needs to be documented by a qualifying medical professional, which is more outside-of-class time, and the hours per week are reaching untenable.

Universities could take great steps, including encouraging communication with instructors or eliminating graded attendance, in order to address some of these issues. Integrate more one-stop offices to help non-traditional students navigate enrollment and registration. Place non-traditional students on your student governments, boards of regents, and other organizations empowered to enact policy change. Create liaison positions for non-traditional students to direct their needs. Even small things, like eliminating assignments that are little more than busywork, can be an amazing reprieve.

Like I said, I’m in the final days. I would have to try to fail at this point, and even then it may not be enough to undo what I’ve accomplished. At the end of the term, many non-traditional and later-in-life students will graduate, but our successes are in spite of these circumstances. So, I guess that toilet is going to need to wait a few more weeks.

These numbers are staggering. When you consider the impact of childhood trauma — which tells us that kids who experience or witness abuse are more likely to develop a slew of physical and mental illnesses as adults — those numbers are infuriating. And baffling. Domestic violence can be hard to escape, especially for those who have been in the mire of it for years, but once kids become involved, shouldn’t that be enough motivation to leave?

It’s this question, and the assumed answer, which drives “failure to protect” laws in child welfare programs across the United States. Essentially, failure to protect laws charge a parent with not doing enough to shield their child from witnessing or experiencing abuse. Virtually every state pursues some form of failure to protect charges within the civil child welfare system. These laws are aimed at the non-abusive parent living in an abusive household. Usually, the parent has been subject to intimate partner violence. But the laws can also be used in households in which the child is the victim of one parent but not the other.

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While these laws were written with the intention of penalizing a parent who neglects the safety and/or well-being of their children, they all too often make unsafe environments even less safe by penalizing non-abusive parents living in an abusive household, and can become the basis for temporarily or permanently removing children from the home. They rarely leave room to consider the complexities of intimate partner violence, instead relying on assumptions and stereotypes that are incapable of capturing the nuanced reality of family bonds.

In January of 1999, Sharwline Nicholson decided to end her relationship with the father of her infant daughter. He lived in South Carolina, and had been crossing state lines each month to visit Nicholson and their daughter in New York. But when she ended the relationship, he responded with violence.

She called 911 and made arrangements with a friend for the care of her two children while she stayed overnight at the hospital. The next day, Nicholson was notified by the New York Administration of Children’s Services (ACS) that both of her children had been temporarily removed from her care on the basis that she had failed to protect them from witnessing the violence that had been inflicted upon her by her former partner. At the time, this was considered a form of neglect.

Nicholson would eventually win back custody of her children, but would be placed on a child maltreatment registry. This action kickstarted a lawsuit that would eventually lead the New York Court of Appeals to rule in 2004 that a parent’s inability to prevent a child from witnessing abuse could not be a sole factor for removing a child. Child welfare reform activists celebrated the decision.

“What Nicholson actually did was not just to change the attitude toward victims of domestic violence,” said David Lansner, a civil rights and family law attorney who represented the plaintiffs in the Nicholson case. “Neglect had to be shown as a serious matter; you had to show that … there was imminent danger of serious harm and not just the possibility of harm. … [Child services] and the court had to balance the harm that would result from removal against the risk of leaving the child at home, so you couldn’t just ‘take the safer course’ because removal was harmful to kids and shouldn’t be done unless it was really necessary.”

Unfortunately, New York is relatively unique in that respect; other states, lacking a case like Nicholson, still remove children for the possibility of harm that caseworkers and judges interpret by a parent’s “failure to protect” her children from being in a household where abuse takes place.

Erin Miles-Cloud, who formerly worked as a parent attorney in New York and is currently one of the co-founders of the advocacy group Movement for Family Power, explained the ways in which some of the better-resourced, urban systems can still fail families, even today. “Because New York has this middle ground of family shelters, ACS sees it as an unreasonable option to stay in a home where intimate partner violence is occurring,” she said.

What many people don’t realize is that — in New York City — parents who access a shelter as the result of domestic abuse will automatically be moved to a different borough, meaning a change in school district for their children, not to mention the loss of access to support networks, such as friends and family or trusted child care, lack of which can easily become another maltreatment charge. There’s also no guarantee as to what type of housing the family will receive or for how long. In some cases this could mean dormitory-style living for a year or longer, with no access to even a personal refrigerator.

But even the most comfortable, “home-like” shelters remain government-funded institutions — which means they come with restrictive rules, such as nightly curfews and rigid limits on how many days a parent can be away from the shelter, even to visit family. They are also a source of constant surveillance for the families housed inside. Miles-Clouds calls shelters and hospitals among the “largest offenders” when it comes to calling in new maltreatment reports, and notes that New York ACS often uses shelters as “second or third eyes on a family” when arguing a related case in court.

Because child welfare agencies self-report their data, and failure to protect  is not an independent maltreatment category in itself (these cases typically fall under the “neglect” umbrella), it is difficult to know exactly how many non-abusive parents end up being investigated because they were victims of abuse who sought help, or because their children reported being harmed by someone else in the household. But we do know that most states do not have even the mild protections enjoyed by families in New York. That means a child can be removed if the state convinces a judge they have been or will likely be psychologically harmed by witnessing the abuse.

Some states will also pursue criminal charges against victims of intimate partner violence who have children in the home. In six states – Oklahoma, Missouri, Nebraska, Nevada, South Carolina and West Virginia – non-offending parents face potential life sentences for failure to protect charges, and in Texas the maximum penalty is 99 years. Last year, the Associated Press reported on the case of Tondalao Hall, a mother whose boyfriend was sentenced to two-years time served (meaning he had already completed his jail time while waiting to be sentenced) for beating her children, including a three-month-old infant. Hall, who was never accused of harming her kids, is currently serving 30 years in prison for not calling the authorities on her boyfriend.

Latagia Copeland-Tyronce, a parental rights advocate and the founder/executive director of the National African American Families First and Preservation Association who spoke to TalkPoverty about her experience, knows first-hand how devastating it can be to be accused of not protecting children from another person’s abuse. She first faced the traumatic confusion of a failure to protect charge in Toledo, Ohio, in 2013.

She was 26 years old and had been involved in an abusive relationship for 10 years. What she did not know, however, was that her daughters’ father was also sexually abusing her three eldest girls. When one of Copeland-Tyronce’s daughters finally disclosed the abuse to her sister, she promptly contacted child services.

Copeland-Tyronce immediately left her children’s father. She also cooperated with the criminal case that would ultimately land him a 30-year prison sentence. But this was not enough for Lucas County child protective services. They claimed she had known about the abuse and had failed to protect her children both from witnessing the violence perpetrated against her, and from the sexual abuse which they had experienced.

“My children never said that I knew anything or that I was involved in the abuse and I was never charged with a crime related to the case,” countered Copeland-Tyronce.

Less than a year after the initial removal, her parental rights were terminated and all six of her daughters were adopted to other families. When she gave birth to a son in 2014, by a different father and with stable housing in place, he was also removed from her custody.

“Because I had a [termination of parental rights] TPR, failure to protect, with my daughters. No other reason,” she said. At the time, the first TPR was still under appeal.

Candis Cassioppi, a mother based in Athens, Georgia, had her youngest child removed from her in the hospital after giving birth, she told TalkPoverty. The removal was prompted by an incident of assault by her child’s father perpetrated against her during her pregnancy.

Although she initially called the police and sought medical attention — causing those injuries to become part of her medical record — she ultimately declined to press charges or testify against her abuser. After her son’s birth, this incident became a reason to claim she was failing to protect her children from harm. Now, she is court-ordered to participate in a slew of activities, including domestic violence groups and parenting classes, in the hopes of regaining custody of her infant.

Like mandated reporting laws, which require certain professionals and institutions to report suspected child maltreatment, failure to protect laws and policies are in place, purportedly, to ensure that child maltreatment does not go unreported. “If a child dies in the home because there was a batterer who was so dangerous that the victim-partner couldn’t protect [the kids] … we’re still liable to make sure that the child stays safe,” explained Mary Nichols, a now-retired administrator at Los Angeles County’s Department of Children and Family Services (DCFS), to the California Health Report in 2015.

But she also admitted in the same article that the laws are confusingly vague: “If you look up California Welfare and Institutions Code 300 and just read the definitions of ‘failure to protect,’ you can see how broad they are … [If] somebody would like to craft legislation to make it more workable, in terms of protections for domestic violence [victims], that would be great. It’s a pretty raw tool that we have.”

As the cases detailed in this article demonstrate, the reality of domestic abuse is far too complex to address with vague, generalized laws. Instead of protecting families, these blanket laws mean that parents who experience domestic violence may end up burdened by a fear of reprisal for reporting that violence. Take Cassioppi’s case, for example. Her baby was born healthy; had she not called the police and sought medical attention after being assaulted during her pregnancy, she likely would have walked out of the hospital with her newborn in arms. And Copeland-Tyronce now asserts that if she were to ever encounter intimate partner violence again, she would “not at all” feel safe calling the police for help.

Lansner said implementation and caseworker attitudes are major problems with the way domestic violence cases are handled within the child welfare system. “The caseworkers just don’t get it,” he said, adding, “the caseworker might go to the home, find the guy there in violation of a protection order and then remove the children instead of calling the police and having him arrested, which is what [the caseworker] should do.”

Parents who experience intimate partner violence also face a number of other complexities that caseworkers and judges don’t always take into consideration when charging these parents as culpable for traumatizing their kids by proxy. For example, one study found that 99 percent of domestic violence survivors had also been subject to economic abuse, a form of financial control that can leave them stranded without the resources necessary to secure independent housing or provide for their children’s basic needs. Because lack of appropriate shelter, clothing, and food also fall under the child services maltreatment category of “neglect,” this leaves many non-abusive partners trapped between the crosshairs of a failure to protect and a failure to provide charge. Either way, they’re ending up on the maltreatment registry for neglect.

By necessitating that caseworkers identify concrete harm toward a child before removing her from the home, New York has found a way to slightly balance a system designed to punish parents simply for being unfortunate enough to experience abuse. Although their system is far from perfect — as Miles-Cloud noted, it funnels parents into a less-than-ideal shelter system, and the law still does not address the caseworker bias that concerned Lansner — it provides a template which other states could use to begin the process of clarifying these laws.

Ideally, however, survivors of domestic violence should be met with compassion and provided with services that help their families heal and thrive intact. It seems, instead, that as long as failure to protect charges exist, the child welfare system will continue to promote a culture of secrecy surrounding intimate partner violence, thus validating the very abuse it claims to condemn.

But for their son’s first few years of school, when Custen was working in Draper, Utah, attending the annual Individualized Education Program (IEP) meetings that laid out this plan could have threatened their job. To participate in meetings 40 miles away, “I would need to use PTO, and there would need to be space available in the schedule for me to leave,” they explained. “If someone else had already claimed time off that day before I had the chance to, then I wouldn’t be able to take the time off myself without receiving a strike for an absence, which would put my job security at risk.”

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Custen’s son receives his services in part through IDEA (the Individuals with Disabilities Education Act), which serves around 14 percent of public school students. IDEA guarantees a right to an IEP, which includes an evaluation of a student’s educational abilities and needs and provides a detailed plan for any support services, specialized instruction, or accommodations they may need due to a disability. These accommodations may include alternative assignments, permission to record a spoken lecture, large print textbooks, extended testing times, assistance with organizing a desk space, or access to speech-to-text software, among many others.

Parents can be crucial partners when it comes to selecting accommodations in an IEP, but Custen’s job was making it impossible to get a seat at the planning table. Meanwhile, Custen’s ex’s schedule allowed him to regularly attend — a disparity that led to family stress and communication gaps around their son’s education plan. Their son’s behavior was different when he was around his father than when he was around Custen, for example, in part because their ex struggled to accept that their son was neuroatypical.

“He would often go into meetings with unrealistically rose-tinted lenses on our son’s behavior and progress,” Custen explained. “He would skew his own perception of our son’s capabilities and milestones. For instance, he would do 90 percent of the work in getting him dressed while our son would do 10 percent of it (such as pulling up pants or sticking arms through sleeves once his shirt was already pulled on for him) and claim that our son was capable of dressing himself.” This led to confusion over what kind of assistance their son would actually need at school.

Custen’s frequent absences meant the services their son received were selected based solely on his behavior around his dad. “The fact that I was not present at these meetings meant that they were taking him for his word on our son’s at-home behavior,” Custen shared. In turn, “they would have to hear from me later and go through the process of editing notes and plans for the IEP. I can’t imagine that it was easy or comfortable for the team helping our son to be caught in the middle of such a back-and-forth between [me and] my ex either.”

Some parent advocates believe problems like Custen’s could be partly alleviated by a recent announcement from the Wage and Hour Division of the U.S. Department of Labor (DOL). The agency responded to a parent whose employer denied their request to take intermittent Family and Medical Leave Act (FMLA) leave to attend IEP meetings. The agency clarified that employees whose children have “serious health conditions” (those for which a patient receives either inpatient care or continuing care from a medical provider) requiring IEPs are able to take time off under the Family Medical Leave Act (FMLA) to attend IEP meetings without losing their job or continued health insurance coverage.  FMLA allows eligible employees to take up to 12 workweeks of leave in a 12-month period for serious health conditions or to care for family members.

According to the decision, parents can use FMLA leave to attend IEP meetings because they involve medical decisions, discussions of children’s health and well-being with respect to those decisions, and the provision of proper physical and psychological care. Notably, the DOL also said a child’s doctor doesn’t have to be present in order for a parent to use FMLA time to attend their IEP meeting.

Amanda Morin, an education writer/author, parent advocate, and former teacher, knows many parents simply won’t be able to take advantage of the clarified policy, especially if they are low-income. Seasonally, intermittently, or self-employed parents are rarely eligible for FMLA, which is restricted to private employers with 50 or more employees working for them within 75 miles of a central worksite. Employees are only eligible if they’ve worked for at least 1,250 hours across the 12 months prior to the leave and have worked for their current eligible employer for a full year.

“Even parents who do have FMLA may not always be able to afford the time off if it will have to be unpaid,” she explained. Overall, around 59 percent of U.S. workers were covered by FMLA as of 2012. That number may have shifted downward since then due to the influx of freelance positions and the rise of the gig economy.

In many ways, this decision looks like a major move towards greater equity in education. Family members work schedules are often intimately connected to their children’s IEP meetings. For researcher, writer, and former teacher Mireya Vela, IEPs have always been a part of her life — and her job choices. Vela’s son, now 25, began his IEP at four years old after his speech delays and other developmental issues became apparent.

Vela tailored her work schedule, and even her choice of career, around her son’s educational and medical needs. “From the time my son was six to the time he graduated high school, I only worked part time. I couldn’t work longer than that,” Vela said. “I often had 2-3 jobs at the same time. But all my jobs worked around my need to drop everything and run to the school.” What’s more, Vela consistently advocated for meetings longer than the customary school-requested 45 minutes, and attended them flanked by a support team of clinicians and advocates — which often meant some rescheduling.

A parent’s ability to take FMLA time off for an IEP meeting will also depend on their child’s exact diagnosis and necessary support services. Morin said “it may also be challenging for parents of kids who don’t have a medical diagnosis, but have an IEP, because getting documentation of the need for leave isn’t as clear-cut.” There might be cases where a child is in clear need of services to help them with a disability or developmental delay, for example, but their family is uninsured or underinsured or can’t afford to see a high-level specialist. In other cases, a student might have to go through an extended period of testing or medical assessment before they receive a final medical diagnosis. Without a documented specific diagnosis, a parent may struggle to prove their eligibility for FMLA leave.

Still, Morin calls the ability to use FMLA intermittently for IEP meetings “a step in the right direction,” especially because not all eligible parents may have known that they could use time off for this purpose. “I’m pleased that it shines a light on the fact that an IEP meeting is tied into a child’s health and well-being,” she said. “I think, for parents who have not been able to leave work to get to meetings, knowing this is available, and feeling confident enough to bring it to an HR department to use the new policy, has the potential to be really empowering and increase family-school engagement.”

An equal, engaged dynamic between schools and families is critical, says Morin, because parents often understand their children more intimately. Parents also have more knowledge about how a student might learn or interact in different settings, which could impact the frequency or types of services they may need.

The DOL’s recent announcement marks a potential step forward in terms of recognizing IEPs as crucial to children’s well-being, health, and quality of life, rather than positioning them as optional “add-ons” to a one-size-fits-all public school education. For Brim Custen, family-school engagement was indeed the driving factor in their son’s well-being and educational progress at school. Later, when Custen began working as the communications coordinator for the Utah Pride Center, their new employer’s greater flexibility allowed for much more active participation in the development of their son’s IEP, and they saw a sea change after becoming more directly involved.

Initially, Custen’s inability to attend IEP meetings forced both families and school administrators to wade through red tape as they struggled to come to a full understanding of exactly what Custen’s son could and couldn’t do. “When he would move to a new classroom with new teachers, there would be some growing pains as they adjusted to the fact that I would seldom be present in person at these meetings,” explained Custen, “and I would end up having to disagree with my ex and provide different perspective after the fact through email or phone call.”

No longer mired in confusion, the team working with Custen’s son was able to communicate more clearly and flesh out a comprehensive plan to help him pay attention and regulate his emotions both in and out of class. “Thanks to there being an IEP in place and a team of teachers and therapists who understood his needs and worked within them, I’m proud to say that my son is doing vastly better in his behavior, self-control, and retention of information in school than we had anticipated he’d be able to,” Custen shared.

One of the most exciting elements of the bill is its explicit callouts of disability, acknowledging the fact that 17 percent of children in America have disabilities and need child care too — but can face barriers to inclusion.

The United States is facing a dual problem of scarcity and unaffordability when it comes to child care. 83 percent of parents with children under age five report difficulty locating affordable child care of sufficient quality in their area. Challenges with paying for child care or finding a suitable provider are pulling parents out of the workforce or leading some people to reconsider parenting altogether.

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Common threads in Warren’s Universal Child Care and Murray and Scott’s Early Learning Act and the Child Care for Working Families Act include increasing compensation for child care providers; making child care free or low-cost, depending on income; and investing in quality improvements across the board. But Murray and Scott’s bill is comprehensive and inclusive: It extends services beyond child care centers and into homes and communities, addresses care from birth through age 13 for all children and up to age 18 for disabled children, and invests in full-day, full-year programming to accommodate parents with varying schedules and those who need child care services in the summer.

The disability inclusion in Murray and Scott’s bill — which includes funding for activities such as making sure facilities getting government money are accessible and providing training to staff so they can better serve disabled kids and their parents — builds on the work of the Americans with Disabilities Act and the Individuals with Disabilities Education Act. It positions such funding as a routine part of meeting quality standards — something society tends to view as “special treatment” or a “burden.” Everyone in America deserves access to child care that meets the needs of their children, and that includes disabled children, who can be excluded by inaccessible facilities, poorly trained staff, and other barriers.

As long as child care is under discussion, though, it is worth addressing the fact that disability isn’t an issue limited to children and while these bills are an excellent start, we should also be looking to the future. Disabled children grow up and build families of their own ­— 6.2 percent of parents are disabled, and disability is more common in black and brown parents — and those families, in turn, will need access to child care. Sometimes that means care for disabled children of disabled adults, and sometimes it’s care for nondisabled children of disabled adults.

“You really need [child care providers] to be on your team,” explained Dr. Kara Ayers, Associate Director at the University of Cincinnati Center for Excellence in Developmental Disabilities. Ayers is the co-founder of the Disabled Parenting Project, which studies the experiences of parents with disabilities. As part of her research, she said she sees issues like inaccessible restrooms and “just one step” entrances — doorways where a single step is all that lies between wheelchair users and entry — are common at the facilities she visits.

Mandated reporters, people legally required to report possible abuse and neglect to the authorities, may have limited experience with disabled parents. Attitudes about disability may lead mandated reporters to be concerned about disabled parents’ capability. This is an issue with doctors, social workers, and teachers, and Dr. Ayers has found that it can appear in child care as well, an issue that raises personal concerns. “If I come in and these people are weirded out,” Ayers added, “one person could decide my daughter is not safe with me and one call could start that process.”

Ayers speaks to a looming worry in the disability community: In every state, it is legal to weigh parental disability when making determinations about whether to remove a child from a home, on the argument that the parent must be “unfit.” According to a 2012 National Council on Disability study, removal rates climb as high as 80 percent in cases of intellectually disabled or mentally ill parents involved in custody fights.

Disabled parents, said Ayers, worry about admitting that they need help or having to explain that services and supports are not a good fit for them, and that hooks directly into the child care conversation — if disabled people are nervous about communicating their needs, it’s challenging to make necessary recommendations.

Comprehensive access to child care, whether accomplished legislatively or through rulemaking, must be inclusive of disabled parents. For example, funds for increasing accessibility could also be used for continuing education classes to familiarize child care providers with the disability community. For disabled parents, adaptive parenting classes –  which teach people how to navigate parenting with a disability with tips on topics like handling a baby while using a wheelchair and using braille-embossed flashcards to teach sighted children to read – could be made more readily available for expecting or newly-disabled parents through expanded funding.

Likewise, parenting equipment should be made more readily available and affordable through existing systems that already connect disabled people with adaptive tools that help them lead independent lives, such as independent living centers, community programs for new parents of all ability levels, Medicaid, and occupational therapy programs.

The United States should also consider what constitutes “activities of daily living,” the tasks that personal assistants can provide for their clients, currently defined by the Centers for Medicare and Medicaid Services using a model followed by many private insurance providers. The agency’s current definition includes things such as toileting, preparing meals, cleaning, and a wide range of other activities — but most parents would argue they should include parenting, too.

A government-funded personal care assistant “cannot do anything for child care,” said Keith Jones, president of Soul Touchin’ experiences, a community empowerment and policy advocacy group. Jones learned to change diapers with his feet as a new parent worried about being deemed unfit, and commented that it’s ludicrous to ask a personal assistant to “just ignore” a child who clearly needs attention.

As it stands now, Ayers explained, aides may not be allowed to help disabled parents, depending on the terms of their contract. If a baby is crying for attention, they can’t pick them up for a cuddle. If a parent needs help getting a child into a high chair for a meal, they can’t ask their aide for an assist. Explicitly including parenting as an ADL, says Ayers, could help disabled parents and kids alike — and it’s possible to have safeguards for those worried about parents abusing their aides as child care providers.  A regulatory change initiated by CMS could be the most effective way to address this shortcoming.

The growing understanding that child care must be a part of progressive movements is heartening to see, and it’s encouraging that lawmakers like Murray and Scott are exploring disability issues as they develop new policy. Including disability from the start in ambitious proposals like these makes it easier to build on them, creating more equity and justice for the disability community.