The Deepest Cuts

Both federal and state funding for mental health has declined since the 1980s.  And with the recent financial and budget troubles in Illinois, mental health funding is at an all new low, according to a public record statistical compilation.

Illinois ranks 38 out of 50 states in terms of investment in mental health services.  The biggest cut to the Illinois budget happened between 2009 and 2011, according to Heather O’Donnell, vice president of public policy and advocacy at the Chicago-based community outreach program Thresholds.

These programs offer many services to individuals suffering from chronic and “significant mental illnesses,” including treatment, counseling and supportive housing, O’Donnell said. As she described, “significant mental illnesses” can mean anything from bipolar disorder to illnesses with possible psychotic episodes.

As funding for services decreased, many people with mental health issues who were under treatment lost their options.  O’Donnell likened the loss to telling a cancer patient that his or her chemotherapy was no longer available partway through the process.

Illinois Hospital Association data shows that as funding was cut, more people were hospitalized due to significant mental illnesses. Hospitalization costs then rose by 19 percent between 2009 and 2011.

The state tried to save $113 million with those funding cuts, but instead they actually cost taxpayers $131 million over the span of those three years.  Mental health treatment costs roughly $28 per day. Hospitalization costs $1,000 per day.

 “Yet the chief opposition to mental health funding reform is still the money,” O’Donnell said. “We literally have thousands and thousands of lives that are just destroyed because of this.

 “But there’s an enormous cost to the state. If these people go without the right treatment, then they spiral into disability for life.”

In the Illinois Legislature’s past session, a bill on the funding of “first episode psychosis treatment” was introduced in an attempt to prevent the spiral O’Donnell described.  “Psychosis is an early symptom of a lot of disorders,” O’Donnell said.  And with every episode, the brain is damaged.  These episodes “typically manifest before the age of 24,” she explained.

The Illinois bill, if passed, would provide secondary coverage of preventative treatment by seeking federal approval for privately covered families to receive Medicaid coverage.  “The whole goal is to keep them on their employer-provided insurance,” O’Donnell said.

Because the private sector doesn’t fund a lot of treatment options, the public sector shoulders most of the burden.  Groups like Thresholds rely primarily on whether individuals who come to them have Medicaid, “and Medicaid does not come close to paying for treatment options,” O’Donnell said.  To pay for community outreach services, payment options are Medicaid or out-of-pocket payment.

Although the organization does take non-Medicaid clients, she said it has limited services available. And not everyone is eligible for Medicaid.

Mark Heyrman, chair of public policy for the advocacy group Mental Health America in Illinois, said part of the problem is that “our mental health funding is very much dependent on continued federal support for Medi-caid.”

The University of Chicago professor said the state is also behind in strategies to keep people with mental illnesses out of the criminal justice system and out of nursing homes. Cook County sheriff Tom Dart refers to the county jail as “the largest mental health facility in the state of Illinois.”  Public records show that over 75 percent of inmates have some type of mental health issue.

Custody relinquishment is another problem.  It happens after a psychiatric lockout.  Teenagers with early signs of a mental health condition, who have tried to either commit suicide multiple times or become violent toward a family member, become hospitalized as a result of their condition, O’Donnell said.

 “The family might be afraid to take the child home or the hospital won’t allow them to take the child home,” she said.  “And when there is a lockout, the hospital has to call the Department of Children and Family Services.”

From there, the situation is investigated as if it were a case of abuse or neglect, despite being a problem of lacking treatment.  “It took a couple years, but it’s mildly better,” O’Donnell said.  “But we shouldn’t even need to be having a conversation about custody relinquishment.”

There have been some improvements, said the advocates.

Both O’Donnell and Heyrman attributed positive movement on the funding front to the Affordable Care Act (ACA) and Medicare expansion.  “That really allowed thousands of people across the nation to have access to treatment for the first time in their life,” O’Donnell said.  Both advocates fear, however, that the proposed repeal of the ACA or the implementation of Medicaid spending caps could stunt efforts to increase the availability of cost-effective treatment options.

At the state level, Gov. Bruce Rauner’s administration has recently applied for an 1115 waiver.  That means the state of Illinois is asking the federal government for an $11 billion increase in federal Medicaid money for substance use and mental health treatment.

“That effort is laudable, but I don’t want anybody to think that that’s a magic bullet,” O’Donnell said.  “It doesn’t address the commercial insurance issue.”

Illinois Rep. Patti Bellock, R-DuPage, has worked for 19 years to strengthen “parity laws.” Parity in funding is supposed to mean that commercial insurance companies are given a baseline for types of mental illnesses they must cover.  These laws typically specify a minimum dollar amount for treatment coverage.  Some drafts of parity bills prevent insurance companies from switching people from one medication to another just because the new medication is cheaper than the old one.

 “Insurers were all opposed to it because they felt that they would be bankrupt,” Bellock said of her first venture into parity legislation.  “But what we said was true, if people got therapy, we would keep them out of hospitals, give people a better quality of life and save a lot of money.”

House Bill 68, a new parity bill, is in the pipeline.  It aims to increase transparency between the public and private insurance sectors.  It would also allow the state’s Department of Insurance to better monitor private insurers’ implementation of parity requirements.

Two decades of United States Surgeon General’s Office statistics show that 1 out of every 6 people has a serious mental health condition. 

“It’s come out of the darkness some now,” Bellock said, “But there’s always been a stigma, and the stigma still exists.”

 

Stress Test

Most parents feel the safest when their child is at home sleeping.  But that’s not necessarily the case when the child has Type 1 diabetes.

 “You’re worried that they might not wake up in their sleep when their numbers go low or go high,” said Pauline Levy, whose 16-year-old son is diabetic.  

Individuals with diabetes could go into a coma if their blood sugar, left untreated, goes too far out of range for a sustained period of time, she explained.

And so begins the list of worries that starts for some families when their sons or daughters are not even 2 years old. By the time many diabetics reach their turbulent teens, parent-child tensions have created stress levels so high that depression sets in and never seems to leave.

The stress, combined with despondent thoughts of “Why me?,” can sometimes be overwhelming, according to one researcher, who adds that when adolescents start to spiral into a negative outlook, they may end up “giving up on their dreams for no reason.”            

For Levy and son Lee, parts of the scenario are all too real. “You hear a commercial for diabetes,” she said, “and it’s about all the horrible things that can happen to you when you have high blood sugar.” 

Her concern for Lee’s future increases when he doesn’t manage his blood sugar properly.

“Lee can’t wear a Continuous Glucose Monitor,” Levy said.  “His skin can’t tolerate adhesives without getting a rash.”

The device can monitor a diabetic’s blood sugar 24 hours a day, said 44-year-old Ginnie Flynn.  Flynn’s 13-year-old daughter, Caroline, has a Continuous Glucose Monitor to help manage her Type 1 diabetes.  If levels go too high or too low, it beeps and sends an alert to an app on a smartphone.

While awake, many diabetics can feel drastic changes in blood sugar.  

“When I go low, I feel shaky and lightheaded,” Caroline said.  “When I go high, I go to the bathroom all the time and have a wine-like smell to my breath.”

In addition to being conscious of how they’re feeling, diabetics also have to meticulously weigh and count how many carbs are in everything they eat. But unlike those with Type 2 diabetes, the sugar in a candy bar has the same effect as the sugar in a piece of fruit, Caroline’s mother said.

According to the American Diabetes Association’s website, about 5 percent of the population has Type 1 diabetes.  Former Chicago Cubs player Ron Santo died due to complications of this genetic condition.

While many diabetics wear Continuous Glucose Monitors, those who can’t are forced to check their levels “the old-fashioned way,” by drawing blood multiple times a day to get a blood sugar reading, Levy said.

“Lee’s a teenager now, and like most teenagers, he’s a little bit rebellious,” Levy said.  Sometimes, Lee either doesn’t take the proper amount of insulin or he refuses to catalog when his last injection was.

“We have to write everything down in our phones,” Levy said.  

That information is then relayed to Lee’s endocrine specialist, who meets with him four times a year to help monitor his eating habits.

“When his numbers are too high, we’ll ask him basic questions somebody responsible managing his disease would be able to answer,” Levy said.  And when he doesn’t have an answer, she said it “can cause a lot of stress in the family.”

Dr. Jill Weissberg-Benchell, a child psychologist at Chicago’s Lurie Children’s Hospital, said parent-child tensions are common in households with a diabetic child.  Adding to potential resistance on the part of the children, “there are any number of factors that can affect your numbers on a daily basis,” she said.  “You could be doing everything right and still be sky high.”

Because parents are worried about their child, they ask a lot of questions.  

“This can sometimes cause children to feel persecuted, even though it comes from love,” Weissberg-Benchell said.

For the teenagers with Type 1, stress is everywhere.  Mental and emotional stress is common enough in teenagers without the added burden of medical concerns.  Levy said her son frequently has to step out of exams halfway through because his levels are too low.

The stress of the condition “basically runs our whole life,” said Catherine Williams, 51, mother of three Type 1 diabetics.  John, 17, was diagnosed at age 11.  Peter, 16, was diagnosed at age 10.  Emmett, 12, was the earliest to get diagnosed, when he was 5 years old.

Peter was diagnosed shortly after his younger brother.  “His initial reaction was, ‘Now, I can do it with you,’ ” Williams said.  Emmett, who can’t remember not having diabetes, and Peter have kept fairly positive outlooks as they have gotten older.

The oldest of the three, John, has had a harder time. Now that he’s in high school, “John is in a complete and utter denial and angry phase,” Williams said.  The nurse at his school is able to monitor his blood sugar levels, but he receives Cs and Fs because “he’s just so angry,” she said.  “This illness is stopping him from living his life.”

According to Weissberg-Benchell’s research, “Teens with diabetes have a higher risk of depression.”  Doctors are unsure whether this increase is due to the stress of keeping up with their medical condition, or due to a biological shift in blood chemistry.

She said psychologists employ a practice known as “cognitive behavior therapy” to help adolescents understand their automatic reactions to distressing events. The ultimate goal is to help the child find a healthier way of looking at the situation.

“I don’t know a single diabetic who didn’t have a depression in high school,” said 33-year-old Andrea Fiore, a Type 1 diabetic since age 11.  She suspects it has to do, at least in part, with the hormonal changes that take place during puberty.

Exercise can help manage blood sugar numbers.  Fiore’s son takes swim classes, Williams’ sons all play sports, Flynn’s daughter takes ice skating lessons and Levy’s son plays basketball.  But it’s not a miracle fix.

For Fiore, puberty started a downward emotional trend that took her years to recover from. 

“I had raging hormones and the disease, my A1c’s were through the roof,” Fiore said. “It led to a depression, I beat myself up because I wanted to be perfect.”

She said she went through a period of denying she had diabetes.  That resulted in multiple seizures per year because her blood sugar was too high.  “I was hospitalized, and I self-medicated.” 

Fiore hit “rock bottom” at 21.  “I needed to get sober and get my life together.”

She hopes her son won’t have to go through the same troubles she did.  Hunter is 4 years old, but was just 22 months when he was diagnosed with Type 1 diabetes.  

“It was absolutely devastating,” Fiore said, especially because she knew what this diagnosis meant for his future.

Hunter was too small for a Continuous Glucose Monitor, so “for the first year, he was on daily injections,” Fiore said.

Fiore, Williams, Flynn and Levy all expressed hope, thanks to rapidly changing technology and a growing awareness of Type 1 diabetes.  Williams, who has 10 children, said her oldest daughter just entered medical school.  

“I’ve got several kids who want to go into medicine,” Williams said.  “They want to find a cure.”

Caroline, 13, is actively involved in raising awareness. She created a curriculum for different grade levels at her school to teach other students about the condition.

“I went through a period where I wasn’t taking good care of myself,” Caroline said.  “I was sneaking food all the time without covering for it [with insulin injections].”  

But after befriending a kindergartner with Type 1 diabetes, her whole outlook changed.

“She looked up to me, kind of thinking I was perfect,” Caroline said.  That friendship, together with her commitment to ice-skating, motivated her to take better care of her blood sugar levels.