Whoever decided that ADHD is not a serious illness requiring the same level of insurance coverage as any other mental disorder has never visited the Monarch School in Houston, Texas. There, about 65 kids — most of them with worst-case ADHD — struggle to make sense of their lives.
My son, TK, is a Monarch student and began there four years ago as a mentally confused, socially impaired child who forgot everything he learned and responded to nearly every situation on impulse — whether that meant punching his desk because the work was too hard or shoving another child for invading his space.
Fortunately, Monarch built into its program daily individual and group therapies that, combined with structured approaches at home and medicine prescribed by his doctor, have made TK into a new, well, man.
At fifteen, he has talent and goals (computer science), leadership ability (he serves on the school's leadership council), wisdom (he formally mediates disputes among other students), a quest for excellence (he got two A's this quarter), and a record for behavior his teachers call "outstanding." He says "no" to drugs, "yes" (most of the time) to Mom and Dad, and "maybe" when he needs more time to consider all sides of an important decision. We are blessed.
Right now, Ann Webb is struggling to get the same kind of results for her daughter, Elizabeth, who is 10. But Elizabeth attends public school and therefore all of her mental health services are delivered by private healthcare providers. Elizabeth's psychiatric care is covered under her mother's previous insurance plan because Ann's current plan provides only minimal benefits for ADHD.
Ann has been shopping around for a better policy. She thought she'd found one at Texas Children's Hospital (TCH), which provides excellent services for ADHD children like Elizabeth. TCH also offers low cost health insurance for children, so Ann was anxious to review the plan. "When I got to the mental health benefits, I was appalled," Ann says. "Twenty visits per year allowed. Everything after that is 100 percent out-of-pocket, with a lifetime maximum of $20,000.
"For the plan set up by this institution to make such a distinction between mental health and medical coverage infuriates me."
Elizabeth's situation is not unique. Says Ann, "We blow through probably 50 visits to mental health professionals a year. She sees her psychologist weekly, her psychiatrist three times a year, and I am trying to enroll her in the TCH Teammates program, group therapy which runs for 17 weeks. It is ludicrous for TCH to offer programs that don't even fit under its own insurance umbrella."
Laurie and Michael Pontoni have no umbrella. The two own a restaurant in Holland, Michigan, a small business that qualifies for a group health policy only if at least five full-time employees enroll. The Pontoni's have not been able to get enough employees to sign up, and therefore had to explore purchasing an individual family policy. The cost: $900 a month, about the same as their house payment. They decided to forego insurance and pray that they had no emergencies. Like the Pontoni's, 41 million Americans have no health insurance.
All three Pontoni family members have mental health needs, mostly treatment for ADHD which runs in the family. They're all on medication, and need regular psychiatric treatment, medication checks, and ongoing psychotherapy. The last time Laurie Pontoni added it all up, they were paying $1100 a month for mental health services and medication. The insurance policy, at $900 a month, would have included only a very limited portion of their mental health care (if any) — so their out-of-pocket medical expenses would likely have approached nearly $2,000 a month. The Pontoni's don't have that kind of money but they still don't qualify for Medicaid — just barely.
"It's really frustrating for me to go to work and work really hard and know that all the money I'm making is going for another prescription or another doctor's visit," says Laurie. "We're the typical working poor — the family that doesn't qualify for Medicaid but can't afford reasonable insurance for our mental health needs."
Sometimes she feels desperate. "If worse came to worst, I could stop taking my medication and just do the best I could, but I would be taking so many steps backwards because the medication helps me succeed at work."
But there's no way she's going to take her teenage son, Jeff, off medication. "He's made so much progress over the last couple of years," Laurie says. "If we took him off medication he would be in trouble, failing his classes, losing his temper. He would certainly be out of control."
Laurie, at least, is not as bad off as Janis Adams, a Waynesville, Missouri mom whose son Caleb has ADHD and a host of comorbid disorders. Last fall, Caleb threatened to kill himself - but the cost of private psychiatric treatment was more than the monthly income of his parents. To get her son adequate psychiatric treatment, Adams had to relinquish custody of her 13-year-old boy to the state. That way he could qualify for Medicaid.
Adams is lucky to have gotten even that much. A study done by the group, Missouri Children, shows that there are 52,903 children with "serious emotional disturbance" who could qualify for state services, but the state is only able to serve about 20 percent of them. "This leaves about 42,000 families with children struggling with private insurance or Medicaid, reluctant schools, the juvenile justice system, or going without services altogether."
TK was born with the type of severe ADHD that, if not treated proficiently can land kids in juvenile detention and prison. In fact, he's a case in point that if we don't pay for ADHD treatment at the front end, we're going to have to pay for it at the back end. One recent Illinois study found that nearly 80 percent of the youths in juvenile detention in the state had undiagnosed, untreated ADHD.
It would be hard to quantify exactly how much our family has spent to help transform this confused and aggressive little boy into a popular, responsible, goal-oriented young man. The tuition at Monarch is about $24,000 a year, and although the therapeutic components can be submitted for insurance benefits, most parents, including us, find their insurance plans offer minimal financial help.
Not being classified as a "Serious Mental Illness" (SMI), such as major depression or obsessive compulsive disorder, ADHD is exempt for my state's (Texas) mental illness parity law that requires most insurance companies to provide a minimum of 45 days of inpatient coverage and 60 days of outpatient coverage for SMI's. Like Ann Webb, we get reimbursed for fewer than two months of therapy sessions a year. Many other parents get minimal reimbursement because their plans carry large deductibles and co-pays. Even if we lied (as many do) and said TK had major depression (an SMI), Texas' insurance parity laws would allow for only 60 days of outpatient coverage — better, to be sure, but certainly not enough.
For the uninformed, which may include most legislators, there are many degrees of ADHD. They go from the shy little girl who has trouble paying attention in class but still does okay and has nice friends; to the brilliant young scholar who blurts out answers in class and is so socially inept that his teachers and peers can't stand him; to the children like mine and Ann Webb's, whose ADHD comes with multiple learning disabilities, lack of impulse control, frequent confusion over what they're supposed to do and where they're supposed to be, and a frightening inability to control their behavior with future consequences in mind.
Fortunately, there are excellent treatments that work for all degrees of ADHD. It's just that some need more treatment than others. Unfortunately, they all get lumped together as non-SMI's, which qualify only for the most minimal coverage. Few families can afford the services their kids need for the rest of the year.
It's only because of the financial sacrifices that my husband and I have been fortunate enough to make that a child so seriously impaired has finally emerged from the darkness in which thousands with serious ADHD may spend the rest of their lives. Untreated ADHD can very well lead to a serious depression or other SMI in adulthood. Parity legislation must be a priority.
Cutting Healthcare Costs
While it's difficult to find adequate insurance policies and medication plans you can afford, it always pays to dig deeper. There are many alternative sources of insurance and of medication at a discount. Here are thetop solutions.
Group Health Insurance for Freelancers, Part-Timers, Contract Workers and Temps:
The "new" economy has created a rapidly growing class of uninsured workers. For many in this group, individual and family health care policies are financially out of reach.
Nowhere was this situation more critical than New York City, where a combination of sky high health costs and limited insurance choices left huge segments of the city's population without any health insurance.
Enter Working Today, a nonprofit insurance organization that forms its own group and then buys insurance for it from HMO's such as HIP (Health Plan of New York). The large group can demand affordable premiums, even for those who are ill. The New York Times tells of one freelance writer with multiple sclerosis whose premium is only $235 a month. A family of four pays about $750 a month — comparable to if not less than the cost of corporate group insurance. For information, go to workingtoday.org
Canadian Prescription Drugs Delivery Service, Inc. For a variety of reasons, prescription medicine is a lot cheaper in Canada — and now there's little to prevent you from purchasing your medication there. Canadian Prescription Drugs Delivery Service assists American citizens with Canadian medication purchases — with one caveat. You can't buy controlled medications (such as stimulants or narcotics).
If you or your child takes a non-stimulant medication for ADHD, there can be huge differences in price. And even though you may not be able to purchase stimulants through the program, the money you save on other medications will help make it more affordable to purchase prescriptions that must be filled in the U.S.
Finally, many U.S. drug companies offer (but rarely announce) discount programs for certain uninsured patients. It never hurts to check with a company to see if such discounts are offered and if you or your children qualify.