A Census Undercount Likely Cost Detroit $1.3 Million for Childhood Lead Prevention

In 2017 — four years after the start of the Flint water crisis — health department officials found dangerously high levels of lead in the blood of more than 1,600 children under the age of six in Detroit. That’s more than the number of students who attend an average American high school. Lead poisoning causes developmental delays, learning difficulties, weight loss, vomiting, hearing loss, and seizures, among a host of other side effects.

That year, the city applied for a $1.34 million U.S. Centers for Disease Control and Prevention grant that would have allowed the city to hire more health department staff focused on assisting the city’s ongoing efforts in preventing childhood lead poisoning. The grant would have funded city officials to test more young children for lead poisoning and collect better data that would allow them to identify the most at-risk kids.

Just months after applying, the city was denied. But the reason had nothing to do with public health. As the CDC explained, the 2010 U.S. Census counted Detroit’s population at 713,777, which was shy of the grant’s 750,000 minimum population requirement. The CDC said in a statement that it does not advance grant applications that don’t meet eligibility criteria requirements for further review.

The lost opportunity underscores the importance of having an accurate count of all people living in the United States during the constitutionally-mandated decennial Census. The count factors into how billions of federal dollars are distributed throughout the country. The number of people in your city can determine eligibility for resources needed to address lead, fix up roads, or improve schools.

It is unclear whether Detroit’s 2010 population was undercounted by exactly 36,223 people, the number of residents by which the city fell short of the lead prevention grant’s threshold. But there is a lot of evidence that Detroit’s Census population in 2010 was less than the number of people actually living in the city, and it’s probable that it would have reached 750,000 with a more accurate count. Undercounts are typical for large cities with a large number of hard-to-count populations such as renters or immigrants.

In Detroit, only 64 percent of households responded to the Census, according to Victoria Kovari, the executive director of the city’s 2020 Census campaign. In total, about 220,000 people did not send in the forms. The Census Bureau was able to track down information about some of those households after workers spoke to residents at their doors, as well as landlords, neighbors, or even the mailman.

But, according to the Census Bureau, 26,585 people were never counted, and instead represented an estimated number of people living in uncounted units, which the federal agency calculated based on a formula that includes comparable household sizes for the specific neighborhood. It is likely that the Census Bureau was off on its estimates and that the actual number was higher.

The populations in Detroit that the Census was unable to collect any information for and forced to guess about include people living in gated communities or renters such as young people and small, low-income families living in multifamily apartment buildings, Kovari said.

Kovari said it was too tough to tell whether there was an undercount, but based on the high number of people that the Census Bureau had to make a guess about, the count was likely not accurate. “It’s clear that renters in multi-family housing were not counted,” Kovari said. “I would go as far as to say we did not get an accurate count in those areas.”

For a city like Detroit, which filed for municipal bankruptcy just six years ago, those federal funds that were denied because of a likely undercount could have been critical, said Lyke Thompson, director of Wayne State University’s Center for Urban Studies, who studies lead poisoning in Michigan.

While childhood lead poisoning in Detroit has improved in recent years, its rates still surpass those in nearby Flint. In 2016, city officials found that 8.8 percent of tested kids under the age of six were positive for lead poisoning, compared to 1.8 percent of kids in Genesee County, which encompasses Flint, according to the Detroit News. The elevated levels were higher in the city’s poorer neighborhoods, including one zip code that encompasses the Atkinson Avenue Historic District and Yates Park, in which 22 percent of 686 kids tested positive.

A lot of the city’s childhood lead poisoning problems stem from aging infrastructure that makes the water undrinkable and the city’s aging housing stock, often located in poorer neighborhoods, with lead paint-covered interior and exterior walls. Children in those neighborhoods are exposed to chippings and dust that come from the walls and breathe in exposed lead after nearby homes are demolished without following environmental remediation standards.

“$1.3 million would go a long way for [city officials] to get to the houses, to measure the blood levels in those houses and to provide case management and other services to those families. They simply lose that through this process,” Thompson said. “Detroit has some of the highest percentages of children with lead poisoning of any major city in the country so they really do need the support.”

Other cities likely experienced similar lost opportunities. The U.S. Department of Health and Human Services relies on population data when distributing nearly $3 billion each year in funding and reimbursements of five of its grant programs, including Medicaid, the Children’s Health Insurance Program, a foster care program, an adoption assistance program, and a child care and development fund program, a 2018 report from George Washington University’s Institute of Public Policy found.

Those researchers identified 37 states that may have lost out on millions of dollars in federal funding in fiscal year 2015 if their populations were undercounted by 1 percent during the 2010 Census. This includes Texas by $291.9 million, Pennsylvania by $221.7 million, Florida by $177.8 million, Ohio by $139 million, Illinois by $122.2 million, and Michigan by $94.2 million.

In most cases, it is impossible to tell which communities may have lost out on federal funds because of a Census undercount due to the fact that there are many overlapping programs with different complex funding formulas that take into account statistics beyond population size, such as the age and income of an area, according to another recent report from George Washington University’s Institute of Public Policy.

Many Detroiters had no interest in being counted and the city never worked to convince them otherwise.
– Kurt Metzger

But what is clear is that undercounts do occur throughout the United States, disproportionately impacting the black population.

According to the Census Bureau’s own 2014 analysis, nearly 1 million children — 4.6 percent of all kids under the age of five in the U.S. — were not represented in the 2010 count. Children who are Latinx or black were undercounted at higher rates than white children. Such undercounts are due to children who have complex living situations, such as splitting time living between parents who do not live together, or who come from families that are considered hard-to-count, such as those who live in high-poverty neighborhoods or rental housing, according to the website FiveThirtyEight.

“The undercount of children under age five in the decennial census, and in surveys like the American Community Survey (ACS), is real and growing,” the 2014 Census Bureau report read. “This is not a new problem and has been present in decennial censuses for many decades. The differential undercount of this population across geography and demographics makes this a larger problem for some racial and ethnic groups and some parts of the country.”

It is reasonable to conclude that Detroit’s undercount was larger than the national average. The city’s population of children under five is higher than the national average and, according to research conducted by the City University of New York, several of its neighborhoods are considered among the hardest to count in the country.

In fact, the city’s population meets the very definition of hard-to-count: Areas in which less than 73 percent of its residents responded to the bureau’s first attempt to reach them.

Hard-to-count communities often include young children, racial and ethnic minorities, non-English speakers, low-income people, people who are disabled, people who are experiencing homelessness, and people who do not live in traditional housing, according to Ron Jarmin, deputy director of the U.S. Census Bureau.

Detroit has a poverty rate of 37.9 percent, 85 percent of its population are considered ethnic minorities, more than 10 percent of its population uses a language other than English at home, and 20 percent of its population is disabled, according to Census Bureau data.

To complicate matters, one in five Detroiters is evicted each year, a problem which, according to Pulitzer Prize winning author Matthew Desmond, disproportionately impacts black women, which would also lead to an undercount.

Lastly, the 2008 economic recession, which crashed the city’s economy, may have also played a part, according to Kurt Metzger, a demographer and Michigan mayor who started the local data organization, Data Driven Detroit. In 2010, city leaders, he said, were trying to address Detroit’s high unemployment rate, foreclosure crisis, and plummeting housing values as residents were underwater on mortgages and land contracts, so they were not thinking about the Census.

Metzger expected an undercount, but the end result was much worse than he anticipated, he said.

“While I have no exact undercount in mind, I was floored when I heard the 2010 count. I knew there was going to be a significant pop loss even without an undercount, but was expecting something closer to 775,000,” Metzger said in an email.

“The undercount was the reason for not qualifying for the grant. Many Detroiters had no interest in being counted and the city never worked to convince them otherwise,” he added.

The Trump administration is going to make this bad situation worse. It tried to include a citizenship question in the Census, a move that would have caused an undercount of at least 9 million people, since non-citizens and households or families with non-citizen members would fear retribution from the government if they answered. The Supreme Court ruled that the Trump administration could not include the question unless it changed its justification for adding it, which they claimed was to better enforce the Voting Rights Act.

The Trump administration shortly after dropped the question, but is still providing an inadequate supply of resources needed to ensure an accurate count. The NAACP filed a lawsuit last year against the Census Bureau and the Trump administration, claiming that their lack of preparedness for the 2020 Census violated the U.S. Constitution, since the government is required to conduct a full head count of everyone living in the country.

The civil rights organization claimed the Census Bureau was under-funded and under-prepared, hiring fewer people to knock on doors and count people that did not self-respond, and opening half the number of field offices throughout the country. Those cuts are being made while the Census Bureau rolls out, for the first time, an Internet-based survey response system.

There are widespread cybersecurity concerns related to allowing people to respond to the survey digitally, and such techniques could affect responses from communities with limited Internet access, which are often areas with a high population of people of color who are considered hard-to-count.

The Census Bureau in a statement defended its 2020 count efforts. According to the bureau, the agency is planning the most robust marketing and outreach plan in the agency’s history: It will spend $500 million on marketing, up from $376 million in 2010, advertise in “many different languages,” and is designing a “robust” outreach plan and hiring locally to engage with communities and reach hard-to-count populations.

The bureau also said that households in areas where Internet is unreliable will receive a paper questionnaire on the first mailing and all households that do not respond, regardless of the area, will receive a paper questionnaire on the fourth mailing. It added that people can respond in 12 different languages other than English over the phone or through the Internet, and enumerators will have 59 different non-English language guides among other ways of reaching out to non-English speakers.

But such threats to the accuracy of the count are real, according to Kelly Percival, a counsel at the Brennan Center for Justice’s Democracy Program.

“The 2020 Census is facing a lot of threats. A lot we have seen in past Censuses and a lot is unique for 2020,” said Percival.

“These are having a snowball effect and they could lead to an undercount in certain communities,” Percival added. “This will translate into less political power and less funding for those that need it… I think it’s an attempt to politicize the census which is not what the census is about.”

A relatively small lead prevention grant can go a long way and help a lot of children. According to Detroit officials, the 2017 grant would have enabled the city to increase the number of children under six years old who are tested for lead by 20 percent, allowed the city to collect better data so it could identify higher-risk populations, improved lead exposure outreach and education for those higher-risk populations, and better identified kids who have been exposed so they could be connected with services. It would have also provided new training for public health professionals, the lead prevention workforce, and other stakeholders who are on the front lines of the fight.

Ask the city, though, and losing out on the grant was no big deal. While, “Federal dollars will certainly assist the Department in coordinating lead related activities,” the city is doing just fine addressing the problem without it, according to city spokesperson Tamekia Nixon.

“After we didn’t receive the 2017 grant, the Detroit Health Department pursued other funding streams to allow us to provide the same scope of service intended in the grant, albeit to a somewhat lesser degree. However, at this time we are not able to quantify the exact difference in numbers,” Nixon wrote in a statement.

The 2020 Census is facing a lot of threats.
– Kelly Percival

Last week, the city received a $9.7 million grant from the U.S. Department of Housing and Urban Development to assess 120 housing units and address lead hazards in 450 homes throughout the city for low-income families with young children, among other functions.

However, the primary function of the grant is for lead abatement, not surveillance of lead poisoning, like the CDC grant would have provided, and it will not solve the issue, said Thompson. Federal funds for such prevention efforts is crucial, he said.

“It’s really hard for the Health Department to get to even a fraction of the houses and really work with the families and they lost support to do that,” Thompson said.

Members of Detroit’s Health Department spoke to TalkPoverty on background but referred questions to the city’s communications department before going on the record. The city’s communications department gave TalkPoverty basic information about its lead program after more than a week of requests, but gave vague answers about whether losing out on the CDC funds hurt the city’s lead prevention efforts in any way. At times, Nixon told TalkPoverty to “file a FOIA” (Freedom of Information Act request) for such information.

It is unclear why the city downplayed the importance of missing out on the federal grant. However, after being denied the CDC grant, the city’s former Health Department Executive Director, Joneigh Khaldun, in a July 10, 2017 appeal of the federal agency’s decision, characterized the federal funds as a “severe need.”

“Addressing lead exposure remains a critical need given the history of Detroit as a large industrial community and the subsequent ubiquity and permeation of lead in our neighborhoods,” Khaldun said.

As American cities like Detroit scrap for federal funding to address very important issues facing their communities and their residents, an accurate count in 2020 is crucial.



First Person

Catching the Flu Got Me Kicked Out of My Addiction Treatment Program

In early September 2019, I was dropped from care by my medication assisted treatment (MAT) program — a highly effective treatment for opioid addiction that uses medication to rebalance brain chemistry and mitigate withdrawal and cravings — because I had the flu.

I was biking to treatment three to five days a week in the Florida heat, and had no other transportation, so I wasn’t able to come in for dosing after I came down with a fever and a deep, phlegmatic cough. But I called in, emailed, and texted each day that I missed a scheduled day of treatment. At no point was I warned of an impending discharge; my counselor simply wished me well, and suggested I go to urgent care if I felt I needed it.

When I returned to treatment the next week, though, I learned that my provider, Memorial Outpatient Behavioral Health, had assumed I was skipping to use drugs. They dumped me without even a few days’ supply of my prescribed buprenorphine, upon which my body was physically dependent; a referral elsewhere; or a solid reason.

This was in spite of my having an active prescription from my doctor and a future appointment with her. I could also no longer access the psychiatric medication I was prescribed through the same provider.

All of a sudden, without warning, I lost all of my addiction and mental health care. As shocking as these events have been, they are not uncommon. In fact, they represent a dangerous status quo among opioid addiction treatment providers across the nation, one that defies all modern research on addiction treatment and leaves patients stranded.

“It’s an old school type of thinking which came out of how we’ve treated addiction in the past, which is that abstinence is the policy, which doesn’t make sense with a chronic relapsing disease,” said Justine Waldman, the medical director for REACH, a harm-reduction oriented health hub in Ithaca, New York. “With abstinence being the policy, once the patient isn’t able to follow the policy the patient isn’t able to be part of the practice.”

Keri Ballweber, a methadone patient and recovery specialist at Point to Point Kane County, remembers being dramatically dropped from care in 2012 by Family Guidance Center, a methadone provider in Aurora, Illinois with whom she had been a patient for roughly six and a half years. In the two years prior to her discharge, she had been gradually tapering her 160 mg dose with the goal of coming fully off methadone.

“As I got lower in my taper, it began getting harder and harder to deal with the symptoms [of withdrawal],” recalled Ballweber. “I asked them for help, but their only suggestion was to go slower. It did not seem as if there was a speed slow enough to not cause me discomfort.” Family Guidance Center declined to comment for this piece; Memorial Outpatient Behavioral Health said it does not comment on specific cases, but that “our goal is to partner with all our patients and help them heal and recover.”

Ballweber eventually turned to illegally purchased diazepam, a benzodiazepine usually prescribed for anxiety, insomnia, and seizure disorders. Mixing benzos and opioids can be dangerous, but when Ballweber disclosed the use to her counselor, she was not informed about this, nor given any harm reduction tips. She asked if she could be kicked out of the program if she continued to screen positive for the non-prescribed drug, and her counselor admitted that outcome was possible, but assured her that such a drastic action would only be taken much further down the line.

The next month, Ballweber was dismissed, and tapered from her dose within a week.

“I was very sick,” said Ballweber. “I couldn’t sleep, I was having panic attacks, muscle tremors, [and] restless leg syndrome.” Eventually, she began to experience hallucinations, which she believes were the result of sleep deprivation from the withdrawal. She was admitted to the hospital for psychosis and prescribed quetapine, an anti-psychotic medication, which helped her sleep. “I had absolutely no aftercare and cutting me off from the clinic [also] cut me off from counseling,” she said.

Ballweber also recalls seeing other patients discharged or punished with medication holds for talking back to their counselors or smoking too close to the buildings. Other MAT patients around the country have reported being dropped or threatened with dismissal for reasons such as relapsing, missing care for unavoidable reasons like being incarcerated, not attending group therapy sessions, smoking marijuana, or being unable to pay.

In my case, when the clinic refused to give me my prescribed medication, leaving me in opioid withdrawal and overcome by a sense of deep confusion and hopelessness, I did eventually use. It was a bad choice, I admit that — and I told my counselor immediately. But in many ways, the clinic itself had contributed to the outcome it had initially accused me of.

I’m afraid for any patient who has to get off MAT before they’re ready.
– Mary Jeanne Kreek

I think a part of me hoped that if I gave them what they expected — a positive toxicology screen — I would get what I needed: ongoing care. Instead, I was totally shut out and sent to navigate detoxing from both my opioid-based buprenorphine and my selective serotonin reuptake inhibitor antidepressant (also dependency-producing) at home, alone, with no medical supervision or follow-up care.

Both buprenorphine and methadone are approved by a slew of licensing bodies, including the World Health Organization, as the most effective treatments for reducing harmful symptoms of opioid addiction and opioid addiction-related deaths. Although any addiction treatment plan should be tailored to the individual patient’s needs and circumstances, these medications are designed for long-term or even lifelong use, said Mary Jeanne Kreek, senior attending physician at Rockefeller University’s addictive diseases lab and part of the team that first developed methadone as a treatment for addiction, whom I interviewed while researching a story for Filter Mag. No part of best practice includes suddenly dropping patients from care for any reason — but especially not for showing symptoms of the disorder for which they are seeking care.

“I’m afraid for any patient who has to get off MAT before they’re ready,” added Kreek.

For patients who relapse, Waldman confirmed the best practice is to “keep the patient on buprenorphine.”

At REACH, she noted, patients are not expected to adhere to an abstinence-only model of care. When patients continue to relapse, their practitioners sit down and ask the patients what they need and how they can help.

“There have only been two patients that I can think of who weren’t able to get care at REACH,” she said, “and they were displaying more violent behavior that just didn’t feel safe within our workplace.” She makes a point to add that REACH ensured those patients were placed with a more appropriate provider.

Losing access to medication also affected my ongoing child services case, switching it from a reunification track to one in which my children will be given up for adoption due to an assumption by my caseworkers and my judge that I am at fault for “failing” treatment. This doesn’t guarantee that I will permanently lose my two young daughters, but it makes it a much tougher battle to win. Now, I am no longer entitled to the little assistance I was receiving from my local child welfare agency in obtaining the services I need to reunify with my daughters. They are oriented toward settling my daughters into permanency with their grandparents.

When I told my counselor that this would happen if they dropped me from care, she responded that she thought I should get my daughters back, and was probably a great mother, but was not a dedicated enough patient.



Closing Old Jails Doesn’t Mean You Have to Open New Ones

Several years ago, I was speaking on a panel alongside a New York state senator, a Black man, who chided me for my comments about the need to take the closing of Rikers Island, New York City’s notoriously abusive prison, seriously. This was during the time when former presidential candidate and current New York City Mayor Bill de Blasio was adamant that closing Rikers was impractical and unrealistic. Their arguments were that there were too many people on Rikers to imagine the city without the jail.

One year later, in 2017, de Blasio had a change of heart, and decided that he would propose a plan to close Rikers within 10 years and build four new jails across the city in its place. Members of the #CloseRikers campaign, many of whom are formerly incarcerated, have supported the building of four new jails to replace Rikers, too.

Close one jail to build four new ones was the limit of their imagination. But it should not be the limit of imagination for people of color and especially people who spent as much as one day in jail.

The move towards opening more humane jails and state of the art “jail centers” is happening all around the country, from Sioux City, Iowa, to Spokane, Washington, to Oahu, Hawai’i. But that’s just the latest euphemism in the history of prison reform. From plantations to convict lease gangs to penitentiaries to correctional facilities, we have a collective conditioning to center confinement, even when the numbers provide a different narrative.

Reductions in the New York City jail population because of bail reform and other policy changes has made the once unrealistic idea of closing Rikers one of political pragmatism. According to statistics provided by the New York Police Department, New York City’s overall crime rate is continuing a downward trend. In fact, the homicide rate is at the lowest since the 1950s.

There is no Batman with a neverending utility-belt of crime-fighting tools intimidating the city’s underworld. Community-based programs aimed at prevention and intervention are the Caped Crusader. Crime in New York City declined at the same time that policy shifts forced the NYPD to stop using stop and frisk as its main policing tool.

The imaginations of activists, most of whom spent time on Rikers, is now being actualized.

This next step should not include the construction of another cage. If you build it, you will fill it, and according to scholar, Angela Davis, “jails and prisons always become overcrowded.” America’s prisons are already running at 103.9 percent capacity. The ACLU has been suing the state of Hawai’i since 1984 for its prison overcrowding; prisons there are now at an average of 167 percent capacity.

Prisons and jails, especially in America, are direct descendants of slave plantations. Laureates such as Ava DuVernay and Michelle Alexander have plainly made the case for this nexus.  Convict-leasing gangs were created after formerly enslaved Africans fought for their freedom in the Civil War, which were the precursors to the modern-day penitentiaries and jails.

This next step should not include the construction of another cage.

Speaking at the Smart on Crime Conference at John Jay College earlier this month, Darren Mack, a formerly incarcerated leader and member of #CloseRikers, said that a part of the plan to close Rikers and open four new jails is to have social service providers run the new facilities instead of the Department of Corrections. But replacing correctional staff with any other kind of a professional is a jail with lipstick. Los Angeles residents fought against similar cosmetic changes by winning the battle to halt the construction of $2.2 billion jail-like mental facility.

If advocates, especially those who have lived in jails, don’t use this moment to close jails, 20 or 30 years from now prison reformers will be thinking of ways to improve these same jail centers.  In 1979, the French philosopher, Michel Foucault, wrote on the subject of prison reform: “One should recall that the movement for reforming the prisons, for controlling their functioning is not a recent phenomenon. It does not even seem to have originated in a recognition of failure. Prison ‘reform’ is virtually contemporary with the prison itself: it constitutes, as it were, its program.”

Now, I appreciate that the voices of formerly incarcerated are loud and numerous on both sides of this debate. Homogeneity in any movement is a myth at worse and unrealistic at best.

So here we are. We are at a moment when we can push, prod, and perform the dreams of the abolitionists of old: freedom. The upcoming biopic of Harriet Tubman, already getting Oscar buzz, will hopefully remind us that her first goal and hurdle was to convince caged human-beings that they were not free; that a plantation with better amenities was still a plantation committed to the peculiar institution of trampling Black souls to build a greater America. Dr. Tubman, as I like to call her, left us a vital lesson to remember.

Better conditions of confinement, though a necessary touchpoint of our humanity, is not freedom. Building new jails in a moment when it is becoming vogue to reduce the prison population is a cognitive dissonance that will likely result in creative ways to suggest Black and Brown people belong in them. America always finds a way to imagine confinement for people of color. Look at how kids are caged at the Mexican-American border.

We, especially those of us committed to implementing solutions that eradicate the need for jails and prisons, should not limit our expertise and our imaginations to soluble solutions that create more cages to be filled.

We can Harriet this moment.




Getting Time Off Work To Support Disabled Kids Shouldn’t Be Hard. For Some Parents, It Is.

Brim Custen knows the importance of a school-based support services for their son, who has oppositional defiant disorder (ODD) and autism. Every year, Custen works alongside a team of therapists, clinicians, advocates, and teachers to come up with a plan that helps their son succeed in class and minimizes meltdowns, so that he can learn what he’s at school to learn.

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.”

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.

Custen saw a sea change after becoming more directly involved.

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.



Disabled People Scramble to Cope When California Kills Power to Prevent Wildfires

This week, California Democratic Gov. Gavin Newsom signed a package of 22 laws aimed at fighting wildfires and addressing the utilities that have played a growing role in the state’s wildfire season, one made more severe by climate change. The deadliest fire in modern California history started with malfunctioning electrical equipment that sparked a blaze which ultimately spanned 153,000 acres and killed 85 people, dealing out $16.5 billion in damage.

Despite hazardous conditions in the days before the Camp Fire became a conflagration, Pacific Gas and Electric company elected not to take advantage of one of the most aggressive and effective tools in its wildfire prevention arsenal: De-energization, also known as a public safety power shutoff (PSPS).

According to California’s Public Utilities Commission, in 2015, the last year for which data are available, utility lines accounted for just 8 percent of fires, but they burned 150,000 acres, more than all other causes combined. Many of the state’s lethal fires have been attributed to power equipment. Utilities may opt to de-energize their lines when a lethal combination of weather factors converge: It’s hot, dry, and extremely windy.

While utilities determine when to make the call in different ways, the National Weather Service red flag warning of increased fire risk is often a factor. More than 50 percent of Northern California alone is at “elevated” or “extreme” fire risk, putting hundreds of thousands of residents in the danger zone. California’s Public Utilities Commission is deep in the heart of rulemaking around the relatively new approach to wildfire prevention as the state also explores options like burying utility lines and more aggressive vegetation management for preventing utility-associated wildfires.

But de-energization comes at a cost. When it occurs, customers can be without power for hours or days. Utilities are supposed to provide advance notice, but some customers say that’s not happening. Instead, they complain recent Pacific Gas and Electric and Southern California Edison shutoffs have occurred with insufficient notice and been accompanied with outdated, confusing information on estimated time of power restoration, including lags in translating outage information.

This is a particular concern for customers who are electricity-dependent. In any given outage block, there may be hundreds or thousands of customers who registered with the utility to indicate they rely on medical equipment to stay healthy, and, in some cases, to stay alive.

Known as “medical baseline customers,” they may require ventilators and similar life support equipment, while others have conditions that can become uncomfortable or dangerous without medical equipment and cooling systems, or have medications that must be refrigerated. In recognition of their increased energy needs, utilities provide them with an extra allotment of energy at the base pricing tier. Other customers may have similar electricity needs despite not being enrolled in the medical baseline program, for a variety of reasons.

Utilities are supposed to be proactive about providing early and frequent notice to medical baseline customers to ensure they’re aware of the possibility of an outage. Kari Gardner, Southern California Edison’s Senior Manager of Consumer Affairs, explained that Edison, like PG&E and other utilities, has a multi-step warning process including a two-day warning that an area is being monitored, a one-day notice, and, ideally, one to four hours of notice before an area is de-energized, though rapidly-changing weather conditions can make this challenging. The utility, she said, is always working on better ways to reach customers, with a particular focus on medical baseline customers; the utility sends out door knockers for notification if they can’t get through on the phone, for example.

Jill Jones, who lives in Sonoma County near the site of 2017’s infamous Tubbs Fire, an area primarily served by Pacific Gas and Electric, is not a medical baseline customer but does have a condition called hereditary angioedema type III, which causes sudden intense swelling, including of her airways. She needs air conditioning and a low-stress life to reduce the risk of swelling episodes, and she also relies on a very expensive medication that must be refrigerated. “As soon as the air conditioner stops, the clock… when I will have an attack starts ticking fast,” she said.

Her condition was foremost on her mind when warnings of a possible shutdown started swirling in late September. Jones tried to track information about de-energization events through the PG&E website as well as social media. “They did not respond to my pleadings for them to consistently post updates. Their website and its map were either not updated and had info only from the day or two previous,” she said, noting the utility’s social media was slightly more current, but that not everyone could access it. She turned into an information conduit for those with limited computer literacy struggling for access to current information.

Lack of clarity led her to pack up and leave to stay with family outside the threatened zone, fearing that her power might be cut. “I have had to set up an emergency ‘go bag’ with a plan and network of family ready to house and come get me should we experience a Public Safety Power Shutoff. We have had to set up my parents’ RV to be ready to both run AC and safely house my medications should we lose power,” she said.

This issue isn’t just access to accurate and current information in multiple common languages about the possibility and status of a de-energization, though. The state’s information site, with language borrowed by the utilities, includes planning that is not necessarily practical or accessible for all medical baseline customers or others who rely on electricity for survival. Planning ahead for customers with medical needs is expensive, and disabled people are at a much higher risk of poverty — 26.8 percent compared to 10.3 percent for nondisabled people. In rural areas like those prone to shutoffs due to worries about vegetation on utility lines, that risk is even more extreme.

We have had to set up my parents’ RV to be ready to both run AC and safely house my medications.
– Jill Jones

Recommendations include suggestions to buy generators or backup batteries, which are costly, and not always safe or practical in apartments and some rental single-family homes. Customers are also advised to “stay with a friend,” for those who can travel and have friends with accessible homes outside the range of the de-energization. The utilities operate respite centers with power and cooling, but they’re only open during the day.

This is something Gardner says utilities recognize when making the call for a PSPS and developing resources for medical baseline customers who may be caught up in fire prevention efforts. Utilities and the state are both working on programs to increase the affordability and practicality of emergency planning. One of the new bills Newsom signed encourages utilities to provide more support; tools such as microgrids and backup batteries can help electricity-dependent customers and their larger communities.

“What needs to happen is a genuine consideration of the risks of keeping the system on versus the risks of shutting it off,” said Melissa Kasnitz, a disability rights attorney with the Center for Accessible Technology. “Right now, utilities are only focused on one side of that equation.”

Kasnitz noted that while ventilator users and others with devices that require electricity may come to mind, there are other implications for medical baseline customers. For example, like Jones, diabetics need to keep medication in the fridge. In a country where one in four diabetics reports rationing insulin due to cost, losing a supply could be devastating.

Similarly, people relying on the Supplemental Nutrition Assistance Program could lose all their food in an outage, with no budget for buying more — and the utility isn’t liable for that loss. And, said Kasnitz, people who work low-wage jobs who miss work because their employers can’t open might have to reshuffle their finances, putting prescription medication behind food or other needs.

Those customers might not necessarily be registered as medical baseline customers, highlighting the ripple effect of these outages, though she is swift to note that wildfires are also tremendously disruptive and sometimes fatal.

The debate over de-energization pits competing public health interests against each other, and it also has stakes far beyond California’s borders. Utilities in other states may begin to consider de-energization as an option in dangerous wildfire conditions with climate change increasing hot, dry weather. Disability advocates hope that consideration includes better planning for electricity-dependent customers with limited means as California learns how to navigate its new landscape. That’s something Gardener says is on Edison’s mind: “I want our most vulnerable customers to know that we do recognize that there’s additional risks when outages occur.”