Tagged States

Advocates Say Arkansas Should Serve As Cautionary Tale For Other States Looking At Medicaid Work Requirements

Michigan has been approved by the federal government to add in the restrictions next year, but advocates say the thousands of people dropped from Arkansas’ rolls should be a warning to the state. Medicaid news comes out of Tennessee, Iowa and Connecticut, as well.

Newsom Diverges Sharply From Washington With Health Care Budget

SACRAMENTO, Calif. — Gov. Gavin Newsom on Thursday unveiled his first state budget, one that leads California down a very different health care path than the one Washington has forged.

The progressive blueprint embraces a state health insurance mandate, beefed-up insurance subsidies, coverage for undocumented immigrants and six months of paid parental leave — not unexpected from a Democrat who campaigned on expanding health care and criticized President Donald Trump and congressional Republicans for eroding the Affordable Care Act.

The new governor declared his $209 billion state budget proposal, of which health care accounts for nearly 30 percent, “a reflection of our values.”

Newsom’s 2019-20 budget plan is just the starting point. He must negotiate with the legislature on a final budget by June 15 — so some of these proposals are certain to change or be eliminated.

“These are first-in-the-nation, new steps to provide new help for people to afford access and coverage,” said Anthony Wright, executive director of Health Access California. “That’s a good thing.”

Lee Ohanian, a senior fellow at the conservative Hoover Institution and an economics professor at the University of California-Los Angeles, countered that California would need to cut costs if it wants pay for Newsom’s initiatives.

“Newsom has a long list of very expensive things he would like to do,” Ohanian said. “He’s going to have to take money from something else.”

While the Democratic legislature is generally supportive of expanding health care coverage, there are both political and financial obstacles to the sweeping proposals that Newsom has laid out.

The governor’s plan to create subsidies for middle-class Californians, for example, relies on lawmakers approving a financial penalty on the uninsured, which was an unpopular provision in the Affordable Care Act. Newsom estimated the penalty would raise roughly $500 million a year.

The estimated subsidies would be modest. For an individual who earns between 250 and 400 percent of the federal poverty level — or between about $30,350 and $48,560 — the subsidies would average about $10 a month, said Newsom cabinet secretary Ana Matosantos. Although these Californians already qualify for a federal tax credit under the Affordable Care Act, many still can’t afford their insurance.

For individuals who make between 400 and 600 percent of the federal poverty level — or between about $48,560 and $72,840 — and therefore don’t qualify for federal tax credits, the state subsidy would come to about $70 a month on average, depending on location and premium costs, Matosantos said.

“It will certainly be a help to some people,” but doesn’t do a lot to address overall affordability, said Larry Levitt, a senior vice president at the Kaiser Family Foundation. (Kaiser Health News, which produces California Healthline, is an editorially independent program of the foundation.)

Congress eliminated the federal tax penalty for uninsured people, effective this year, as part of its 2017 tax bill. In response, New Jersey, Vermont and the District of Columbia have passed their own mandates in an effort to keep healthy enrollees from dumping coverage. A third state, Massachusetts, already had a state mandate.

Newsom argued during his budget briefing that, unlike the federal tax penalty, the California penalty would not be considered a tax and would only need a simple majority to win legislative approval.

“California does not need to go in the direction of the rest of the country,” he said.

Whether lawmakers will embrace the penalty is unclear, even though Democrats have supermajorities in both houses. California voters last year recalled a Democratic state senator who voted for a gas tax increase.

Assembly Health Committee Chair Jim Wood acknowledged the vote could be “a difficult one.”  The Healdsburg Democrat, who is carrying a bill to create state-based subsidies, said he is hopeful his colleagues will consider all the governor’s health care proposals as a revenue-neutral package.

For example, the executive order that Newsom signed earlier this week that directs state agencies to work together to negotiate prescription drug prices could save the state hundreds of millions of dollars, Wood said. Those savings, along with the revenue from the health insurance penalty, could help pay for subsidies, or for coverage under Medi-Cal for unauthorized immigrant young adults, he said.

“It’s kind of a three-dimensional chess game right now in trying to put all these things together,” Wood said.

Lawmakers last year considered extending full Medi-Cal benefits to both young adults and seniors who are in the country illegally. But the proposals were dropped during budget negotiations, in part because former Gov. Jerry Brown balked at the cost.

Medi-Cal is California’s version of the federal Medicaid program.

Newsom’s budget includes $260 million to pay for Medi-Cal for undocumented immigrant adults ages 19 to 25. California already covers all kids up to age 19, regardless of their immigration status. Newsom described the expansion as the right thing to do from both a moral and a financial standpoint.

U.S. Sen. Bill Cassidy (R-La.) on Tuesday announced he would introduce legislation in Congress prohibiting California from using federal dollars to provide Medi-Cal to undocumented immigrants. However, Newsom’s budget would use state dollars to pay for the expansion, just as state funds pay for undocumented children’s coverage. Cassidy’s spokesman did not return an email seeking comment.

Among the health-related proposals that still need more vetting is Newsom’s plan to expand the state’s paid parental leave program from six weeks to six months.

Details were scarce, and the governor said a task force is studying how to pay for it — whether through increased taxes on employers or using general fund dollars. That too could be a sticking point among lawmakers.

“I am a big proponent of parents spending time with newborn children,” said Assemblyman Jay Obernolte, the ranking Republican on the Assembly Budget Committee. “However, I am absolutely opposed to forcing employers to do that.”

Newsom’s budget also includes several other health-related initiatives, including:

  • $25 million to improve the detection and treatment of early psychosis, which includes symptoms such as hallucinations and disorganized thoughts and behaviors.
  • $10 million to provide clean water, including bottled or hauled water, to communities during emergencies.
  • $100 million for programs that coordinate health and social services and help provide housing for people with mental illness.
  • $60 million to increase developmental screenings for children at 9, 18 and 30 months of age.
  • $342.3 million to restore recent cuts in the In-Home Supportive Services program, which provides in-home care and transportation to low-income older people or those with disabilities.


This story was produced by Kaiser Health News, which publishes California Healthline, a service of the California Health Care Foundation.

Podcast: KHN’s ‘What The Health?’ New Year, New Health Proposals

The new Democratic majority in the House of Representatives took its first steps on health care — voting to intervene in the appeal of a Texas-led lawsuit that found the Affordable Care Act unconstitutional in December. And around the country, Democratic governors and mayors unveiled new initiatives aimed at making health care cheaper and more accessible.

In Washington, the partial shutdown of the government has left most health agencies untouched but shuttered major parts of the Food and Drug Administration and the Indian Health Service.

This week’s panelists for KHN’s “What the Health?” are Julie Rovner of Kaiser Health News, Margot Sanger-Katz of The New York Times, Anna Edney of Bloomberg News and Rebecca Adams of CQ Roll Call.

Among the takeaways from this week’s podcast:

  • Much of the attention on the impact of the federal judge’s decision in Texas to invalidate the ACA has centered on how it affects people with preexisting medical conditions. But the ruling is much more far-reaching and could affect broad swaths of health care in the country.
  • The partial government shutdown has had only a small impact on the Department of Health and Human Services, which already received its funding. But the FDA, which is funded through the Agriculture Department’s appropriations bill, is affected. Officials there say they are trying to keep up with high-risk food inspections and may bring some employees back to work.
  • The FDA receives a substantial part of its budget through the fees paid by pharmaceutical companies for review of their products. But during the shutdown, the agency is not allowed to accept more fees, so it will run out of money for drug application reviews in about a month, officials said.
  • Recent efforts by some Democratic state and local officials highlight the intraparty debate over health care. New California Gov. Gavin Newsom has proposed expanding insurance premium subsidies to people making up to 600 percent of the federal poverty level (about $72,800 for an individual) — up from the law’s current 400 percent (about $48,500) — while Washington Gov. Jay Inslee wants to set up a government-run plan that would be an option for people buying their own insurance. And in New York City, Mayor Bill de Blasio wants to offer coverage to people who are in the country illegally.
  • The latest government enrollment figures show that more than 11 million people signed up for coverage offered in the ACA marketplaces. That is down a bit from prior years, but still more than industry watchers predicted given the tax penalty for not having coverage expired this year.
  • The small slippage in enrollment in the past two years, following changes made by the Trump administration and a Republican-led Congress, may signal challenges in the future, especially in small markets where getting competition has been tough.

Also this week, Julie Rovner interviews KHN senior correspondent Jordan Rau, who investigated and wrote the latest “Bill of the Month” feature for Kaiser Health News and NPR. It’s about a skiing accident that required repeat surgeries — and bills for the patient, although she did nothing wrong. You can read the story here, and its update here.

If you have a medical bill you would like NPR and KHN to investigate, you can submit it here.

Plus, for extra credit, the panelists recommend their favorite health policy stories of the week they think you should read, too:

Julie Rovner: Rewire.News’ “There’s Almost No Data About What Happens When Catholic Hospitals Deny Reproductive Care,” by Amy Littlefield

Rebecca Adams: The Washington Post Magazine’s “Life, Death and Insulin,” by Tiffany Stanley

Margot Sanger-Katz: Vox.com’s “A $20,243 Bike Crash: Zuckerberg Hospital’s Aggressive Tactics Leave Patients With Big Bills,” by Sarah Kliff

Anna Edney: The Washington Post’s “The FDA Is Still Letting Doctors Implant Untested Devices Into Our Bodies,” by Jeanne Lenzer and Shannon Brownlee

To hear all our podcasts, click here.

And subscribe to What the Health? on iTunesStitcher or Google Play.

Study Finds Link Between Increase In Bullying In Trump Country And President’s Inauguration

“It is obviously difficult to demonstrate a causal link between statements by a public figure and schoolyard bullying. Nevertheless, there are incidents in which youth made threats and jeering statements that closely matched language used by President Trump,” the study found. Other mental health news comes out of New Hampshire, Texas and Louisiana.

Innovative App Would Detect Opioid Overdoses, Developers Say. Would People Turn It On, Though?

Researchers tested the experimental gadget at North America’s first supervised injection site in Vancouver, British Columbia, and found it correctly identified breathing problems. Other news on the opioid crisis focuses on a call for more federal funding, a dismissal of lawsuits against Purdue Pharma, attempts to measure pain, a deadly new mix of drugs and more.

Some States Mull A Medicaid ‘Buy In’ As More Palatable Solution To Politically Polarizing ‘Medicare For All’ Plans

States have begun exploring the possibility of a Medicaid “buy in” as an attractive option for people who are struggling to find affordable coverage. With the strategy comes a plethora of questions, though, such as, who would be eligible and what benefits would be offered.

Despite GOP Losing Control Of The House, Anti-Abortion Advocates Aren’t Worried About Movement’s Momentum

With Justice Brett Kavanaugh on the court, the anti-abortion movement is eager to see cases move through the judicial branch. “Our agenda is very focused on the executive branch, the coming election, and the courts,” said Marjorie Dannenfelser, president of the anti-abortion organization Susan B. Anthony List. Abortion news comes out of Louisiana, as well.

Despite GOP Losing Control Of The House, Anti-Abortion Advocates Aren’t Worried About Movement’s Momentum

With Justice Brett Kavanaugh on the court, the anti-abortion movement is eager to see cases move through the judicial branch. “Our agenda is very focused on the executive branch, the coming election, and the courts,” said Marjorie Dannenfelser, president of the anti-abortion organization Susan B. Anthony List. Abortion news comes out of Louisiana, as well.

Every NYC Resident To Be Guaranteed Health Coverage As Part Of Mayor’s Expanded $100 Million Plan

The NYC Care plan, which Mayor Bill de Blasio said would be funded without tax increases, is an expansion of the city’s existing MetroPlus plan that covers hospital bills for low-income residents. “No one should have to live in fear. No one should go without the health care they need. Health care is a human right. In this city, we’re gonna make that a reality,” de Blasio said during a news conference. The plan would also cover immigrants who are living in the country illegally. Meanwhile, Washington Gov. Jay Inslee announced plans to offer residents a public option which would be a step toward single-payer health care.

Where Abortion Fights Will Play Out In 2019

With Democrats now in control of the U.S. House of Representatives, it might appear that the fight over abortion rights has become a standoff.

After all, abortion-rights supporters within the Democratic caucus will be in a position to block the kind of curbs that Republicans advanced over the past two years when they had control of Congress.

But those on both sides of the debate insist that won’t be the case.

Despite the Republicans’ loss of the House, anti-abortion forces gained one of their most sought-after victories in decades with the confirmation of Justice Brett Kavanaugh to the Supreme Court. Now, with a stronger possibility of a 5-4 majority in favor of more restrictions on abortion, anti-abortion groups are eager to get test cases to the high court.

And that is just the beginning.

“Our agenda is very focused on the executive branch, the coming election, and the courts,” said Marjorie Dannenfelser, president of the anti-abortion organization Susan B. Anthony List. She said the new judges nominated to lower federal courts by President Donald Trump and confirmed by the Senate reflect “a legacy win.”

The Republican majority in the U.S. Senate is expected to continue to fill the lower federal courts with judges who have been vetted by anti-abortion groups.

Abortion-rights supporters think they, too, can make strides in 2019.

“We expect 25 states to push policies that will expand or protect abortion access,” said Dr. Leana Wen, who took over as president of the Planned Parenthood Federation of America in November. If the landmark 1973 Supreme Court decision Roe v. Wade is eventually overturned, states will decide whether abortion will be legal, and under what circumstances.

Here are four venues where the debate over reproductive health services for women will play out in 2019:

Congress

The Republican-controlled Congress proved unable in 2017 or 2018 to realize one of the anti-abortion movement’s biggest goals: evicting Planned Parenthood from Medicaid, the federal-state health insurance program for people who have low incomes. Abortion opponents don’t want Planned Parenthood to get federal funds because, in many states, it functions as an abortion provider (albeit with non-federal resources).

Though Republicans have a slightly larger majority in the new Senate, that majority will still be well short of the 60 votes needed to block any Democratic filibuster.

Because Democrats generally support Planned Parenthood, the power shift in the House makes the chances for defunding the organization even slimmer, much to the dismay of abortion opponents.

“We’re pretty disappointed that, despite having a Republican Congress for two years, Planned Parenthood wasn’t defunded,” said Kristan Hawkins of the anti-abortion group Students for Life of America. “This was one of President Trump’s promises to the pro-life community, and he should have demanded it,” she added.

Another likely area of dispute will be the future of various anti-abortion restrictions that are routinely part of annual spending bills. These include the so-called Hyde Amendment, which bans most federal abortion funding in Medicaid and other health programs in the Department of Health and Human Services. Also disputed: restrictions on grants to international groups that support abortion rights, and limits on abortion in federal prisons and in the military.

However, now that they have a substantial majority in the House, “Democrats are on stronger grounds to demand and expect clean appropriations bills,” without many of those riders, said Wen of Planned Parenthood. While Senate Republicans are likely to eventually add those restrictions back, “they will have to go through the amendment process,” she said. And that could bring added attention to the issues.

With control of House committees, Democrats can also set agendas, hold hearings and call witnesses to talk about issues they want to promote.

“Even if the bills don’t come to fruition, putting these bills in the spotlight, forcing lawmakers to go on the record — that has value,” said Wen.

The Trump Administration

While Congress is unlikely to agree on reproductive health legislation in the coming two years, the Trump administration is still pursuing an aggressive anti-abortion agenda — using its power of regulation.

A final rule is expected any day that would cut off a significant part of Planned Parenthood’s federal funding — not from Medicaid but from the Title X Family Planning Program. Planned Parenthood annually provides family planning and other health services that don’t involve abortion to about 40 percent of the program’s 4 million patients.

The administration proposal, unveiled last May, would effectively require Planned Parenthood to physically separate facilities that perform abortions from those that provide federally funded services, and would bar abortion referrals for women who have unintended pregnancies. Planned Parenthood has said it is likely to sue over the new rules when they are finalized. The Supreme Court upheld in 1991 a similar set of restrictions that were never implemented.

Abortion opponents are also pressing to end federal funding for any research that uses tissue from aborted fetuses — a type of research that was authorized by Congress in the early 1990s.

“It’s very important we get to a point of banning” fetal tissue research “and pursuing aggressively ethical alternatives,” said Dannenfelser.

State Capitols

Abortion opponents having pushed through more than 400 separate abortion restrictions on the state level since 2010, according to the Guttmacher Institute, an abortion-rights think tank. In 2018 alone, according to Guttmacher, 15 states adopted 27 new limits on abortion and family planning.

“Absolutely some [of these are] an exercise in what they can get to go up to the Supreme Court,” said Destiny Lopez, co-director of the abortion-rights group All* Above All. “Sort of ‘Let’s throw spaghetti against the wall and see what sticks.’”

But 2018 also marked a turning point. It was the first time in years that the number of state actions supporting abortion rights outnumbered the restrictions. For example, Massachusetts approved a measure to repeal a pre-Roe ban on abortion that would take effect if Roe were overturned. Washington state passed a law to require abortion coverage in insurance plans that offer maternity coverage.

The Federal Courts

The fate of all these policies will be decided eventually by the courts.

In fact, several state-level restrictions are already in the pipeline to the Supreme Court and could serve as a vehicle to curtail or overturn Roe v. Wade.

Among the state laws closest to triggering such a review is an Indiana law banning abortion for gender selection or genetic flaws, among other things. Also awaiting final legal say is an Alabama law banning the most common second-trimester abortion method — dilation and evacuation.


KHN’s coverage of women’s health care issues is supported in part by The David and Lucile Packard Foundation.

To Get Mental Health Help For A Child, Desperate Parents Relinquish Custody

When Toni and Jim Hoy adopted their son Daniel through the foster care system, he was an affectionate toddler. They did not plan to give him back to the state of Illinois, ever.

“Danny was this cute, lovable little blond-haired, blue-eyed baby,” Jim said.

Toni recalled times Daniel would reach over, put his hands on her face and squish her cheeks. “And he would go, ‘You pretty, Mom,’ ” Toni said. “Oh, my gosh, he just melted my heart when he would say these very loving, endearing things to me.”

But as Daniel grew older, he changed. He began to show signs of serious mental illness that eventually manifested in violent outbursts and nearly a dozen psychiatric hospitalizations, starting at age 10. Doctors said he needed intensive, specialized care away from home — institutional services that cost at least $100,000 a year.

The family had private insurance through Jim’s job, and Daniel also had Medicaid coverage because he was adopted. But neither insurance would pay for that treatment. Exhausted and desperate, the Hoys decided to relinquish custody to the state. If they sent Daniel back into the foster care system, the child welfare agency would be obligated to pay for the services he needed.

“To this day, it’s the most gut-wrenching thing I’ve ever had to do in my life,” Jim said. He went to the hospital and told Daniel, then 12, that they were legally abandoning him so child welfare could take over. “I was crying terribly. But it was the only way we figured we could keep the family safe.”

Two-thirds of states don’t keep track of how many families give up custody to help a child get mental health services. But a study by the Government Accountability Office found that, back in 2001, families in 19 states relinquished nearly 13,000 children.

Today in Illinois, state records show that dozens of children enter state custody this way each year, despite a 2015 state law aimed at preventing it. And new data collected by the University of Maryland for the federal government finds that Illinois is not alone in failing to address this issue.

Mental health advocates say the problem is one of “too little, too late.” Even when states try to help children get access to treatment without a custody transfer, the efforts come too late in the progression of the children’s illnesses.

The advocates blame decades of inadequate funding for in-home and community-based services across the country — a lack of funding that has chipped away at the mental health system. Without that early intervention, children deteriorate to the point of being needlessly hospitalized and requiring costly residential care.

Until that underlying problem is addressed, child advocates say, the problem of families trading custody for treatment will never truly be solved.

Out Of Options

Daniel grew up as the youngest of four children in Ingleside, north of Chicago. As a baby, he had been severely neglected in his birth family — starved and left for dead. The early trauma Daniel experienced very likely affected his brain development, doctors said.

Toni home-schooled her children until she had to return to work full time in 2005. She said Daniel, who was 10, just fell apart.

“After six weeks of being in a public school classroom — something kids do every day — he couldn’t emotionally handle it and had his first hospitalization,” Toni said.

Daniel’s post-traumatic stress disorder and severe anxiety manifested in violent outbursts.

“He held knives to people’s throats,” Toni said. “He tried putting his fingers and his tongue in the light sockets. He broke almost every door in the house.”

In the car, there were times he’d reach over and grab the wheel while Toni was driving, to try to force the car into oncoming traffic. Other times, he would lash out at his siblings.

“At the same time, he’s a little boy,” she said. “He didn’t want to be that way. He didn’t like being that way.”

Despite Toni and Jim’s efforts to help their son with therapy and medication, the violence escalated, and Daniel was repeatedly hospitalized.

Although his doctors and therapists said he needed residential treatment, which would run at least $100,000 a year, both the family’s private health insurance, and Daniel’s secondary Medicaid coverage, denied coverage.

So the Hoys applied for a state grant meant for children with severe emotional disorders. They also asked for help from Daniel’s school district, which is supposed to cover a portion of the costs when students need long-term, off-site care. They were denied both.

“We were told we had to pay out-of-pocket for it,” Toni said.

Then one night, Daniel picked up his brother Chip, threw him down the stairs and punched him over and over before their dad pulled the boys apart.

Daniel went back to the hospital for the 11th time in two years. That’s when the Illinois Department of Children and Family Services gave the Hoys an ultimatum.

“[They] basically said, ‘If you bring him home, we’re going to charge you with child endangerment for failure to protect your other kids,’” Toni remembered. “‘And if you leave him at the hospital, we’ll charge you with neglect.’”

“If any of our other kids got hurt once we brought him home, they would take the other kids,” Jim said. “They put our backs against the wall, and they didn’t give us any options.” So the couple left Daniel at the hospital.

Once the state’s child welfare agency steps in to take custody, the agency will place the child in residential treatment and pay for it, said Robert Farley Jr., a lawyer in Naperville, Ill., another Chicago suburb.

“So you get residential services, but then you’ve given up custody of your child,” Farley said. “Which is, you know, barbaric. You have to give up your child to get something necessary.”

Taking It To The Courts

The Hoys were investigated by DCFS and charged with neglect. They appealed in court and the charge was later amended to a “no-fault dependency,” meaning the child entered state custody at no fault of the parents.

They didn’t know where Daniel was for several weeks, until he phoned from the group home where he had been placed to tell them he was OK.

Losing custody meant Toni and Jim could visit Daniel and maintain contact with him, but they could not make decisions regarding his care.

Over the next three years, Daniel lived at three residential treatment centers. One was five hours away by car. His parents visited as often as they could.

Toni spent months reading up on federal Medicaid law, and she learned the state-federal health insurance program is supposed to cover all medically necessary treatments for eligible children.

The Hoys hired a lawyer and, two years after giving Daniel up, they sued the state in 2010.

Six months later, they settled out of court and regained custody of Daniel, who was 15 by then. They also got the money to pay for Daniel’s care on their own.

Around the same time, Farley, the attorney, decided to take on the issue on behalf of all Medicaid-eligible children in the state. He filed a class-action lawsuit, claiming Illinois illegally withheld services from children with severe mental health disorders.

“There [are] great federal laws,” he said. “But someone’s not out there enforcing them.”

In his lawsuit, Farley cited the state’s own data, showing that 18,000 children in Illinois have a severe emotional or behavioral disorder, yet only about 200 receive intensive mental health treatment.

As part of a settlement, a federal judge ordered Illinois Medicaid officials to completely overhaul the state system so that kids get home- and community-based treatment in the early stages of their illness.

The deadline for the state to roll out those changes is this month.

A Law That Didn’t Fix The Problem

While these legal battles were taking place, Illinois lawmakers began their own work to ensure that parents no longer have to relinquish custody to get their kids the help they need.

The Custody Relinquishment Prevention Act, which became law in 2015, ordered six state agencies that interact with children and families to intervene when a family is considering giving up custody to get access to services.

“I think the question is: Shouldn’t government be stepping in and doing their job? And they’re not,” said Democratic state Rep. Sara Feigenholtz. “We just want them to do their job.”

B.J. Walker, head of Illinois’ child welfare agency, said the reasons for custody relinquishments are complex.

“If law could fix problems, we’d have a different world,” she said.

In some places, waitlists for residential treatment beds for kids in crisis can be months long.

But even when beds are available, Walker said, some facilities are simply unwilling or unable to take a child who has a severe mental health condition or a co-occurring medical condition.

Out of desperation, some parents will give up custody in the hope of getting their child to the top of the waiting list. But that doesn’t necessarily solve the problem.

As ProPublica Illinois reports, many foster children languish for months in psychiatric wards that are ill-equipped to provide long-term care because the state is unable to place them in an appropriate therapeutic setting. Walker’s agency is being sued for allegedly forcing children to “remain in locked psychiatric wards, causing immense harm,” for weeks or months after they’ve been cleared for discharge.

The Underlying Issue

Neil Skene, spokesman for Illinois’ child welfare agency, said there are more options for families like the Hoys today than there were a decade ago. That includes a crisis-stabilization program launched in 2017 that helps families get access to services.

When the child welfare agency is blamed for this problem, Skene said, it’s like when a pitcher comes in at the end of a losing game to save the day and gets tagged with the loss.

Some mental health advocates agree it’s not fair to fault the state’s child welfare agency for a problem that stems from a chronically underfunded mental health system.

Heather O’Donnell, a mental health advocate who works for Thresholds, a behavioral health treatment provider in Chicago, blames years of inadequate funding in Illinois and across the U.S.

Early-intervention services are either not available or not accessible because insurance companies deny coverage.

“If these kids had leukemia or diabetes, they would’ve gotten help long, long before,” O’Donnell said. “It’s because they have a mental health condition that causes their behavior to be challenging and erratic. And as a society, we sweep these conditions under the rug until there’s a crisis. We just wait for tragedy.”

“What Illinois needs to put into place is a system that helps these families early on, so that these kids never get hospitalized,” O’Donnell said.

Beth Stroul, who has been studying the problem of custody relinquishment for decades, agrees. She is the lead researcher on a new study — commissioned by the federal government and carried out by the University of Maryland — that explores why the problem persists.

Stroul said other states, including Georgia and New Jersey, have passed laws and stepped up efforts to help children get treatment while in parental custody.

“But those strategies, in and of themselves, are not sufficient unless there are home- and community-based services available that provide the supports and treatment needed to keep children and families safe in the community,” Stroul said.

The Difference Treatment And Family Can Make

Daniel Hoy is now 24 and has been out of residential treatment — and stable — for six years.

He said treatment was tough, and he would not have gotten better without his parents’ love and support. “It was never a question in my mind that my parents would always be there for me,” he said. “Sometimes it’s so hard to do it for yourself. It almost helps to know that I’m doing it for myself, but I’m also doing it for my family and for our relationship.”

Daniel now works nights for a shipping company and lives with his girlfriend and their toddler daughter in central Illinois, not far from his parents.

“I just love having a relationship with him,” Jim said. “I feel so privileged that [when] he’s having a bad day, he comes over and talks to us about it.”

Toni said, looking back, it’s shameful that families get torn apart by a system that’s supposed to be supportive.

She is grateful they made it through intact. Other families that have gone through this same thing, she said, have lost touch with their child forever. “Kids do need services,” Toni said. “But they also need the support of their families.”

This story is part of NPR’s reporting partnership with Side Effects Public Media and Kaiser Health News. A longer version of this story appears in The Workaround podcast. Christine Herman is a recipient of a Rosalynn Carter fellowship for mental health journalism. 


KHN’s coverage of children’s health care issues is supported in part by the Heising-Simons Foundation.

In Montana, Neither Republicans Nor Democrats Want To End Medicaid Expansion But They Differ On Path Forward

Republicans are arguing for new restrictions, such as work requirements, as lawmakers begin to work toward a compromise to keep Medicaid expansion alive in the state. “If I was a betting man, I’d think Medicaid will pass in some form,” said state Senate President Scott Sales (R-Bozeman). Medicaid news comes out of Louisiana, Idaho and Virginia, as well.

Wis. Republican Lawmakers See Bumpy Road Ahead For Legislation Protecting Preexisting Conditions Coverage

The state’s Senate and the Assembly have struggled in the past to find common ground. “I don’t want to overpromise on that right out of the gate,” Senate Majority Leader Scott Fitzgerald of Juneau said, even as Assembly Speaker Robin Vos of Rochester announced his chamber would be taking up a bill protecting the coverage. Other health law news comes out of Connecticut and California, as well.