“We Can’t Afford to Treat Our ADHD”
Many parents and adults with health insurance still struggle to pay for ADHD diagnosis and treatment. Here’s what more than 600 readers, who took our survey, told us about meeting those challenges.
A Severna Park, Maryland, office assistant sometimes borrows pills from her boyfriend. She has ADHD but no health insurance, so she can’t afford her own medication.
A health counselor in Bloomington, Illinois, who has two daughters diagnosed with ADHD and is on Medicaid, recently moved into a cheaper apartment so she can spare funds for their psychiatrists’ copays.
A commercial real estate consultant in Seattle, Washington, with a small, limited health plan, has put off retirement due to the $60,000 she and her husband have spent out of pocket, to date, on private school, therapists, and medication for their son.
The High Costs of Treatment
Managing ADHD, for yourself or your child, has always been a pricey proposition. But it’s worse than ever these days, as insurance firms have hiked out-of-pocket costs, including monthly premiums, yearly deductibles, and office visit copays.
Many of the more than 600 U.S. participants who took our survey on managing the cost of ADHD care, conducted online, told of scrambling to pay for therapists and medication for themselves and their kids, even though most of them pay for health insurance. More than 16 percent of the respondents reported that the costs of managing ADHD exceeded 10 percent of their family’s income.
“Taking care of my kids properly should not cost more than my monthly house payment,” writes one respondent.
Nearly a quarter of the survey participants who had insurance said their plans paid for less care last year than previously. Only about 8 percent said their plans paid 100 percent of costs for medication and treatment. Just over 7 percent said their plans paid none of these costs.
Many Americans have been paying more to cope with a range of health challenges in recent years, even as overall access to care has increased under the 2010 Affordable Care Act (aka Obamacare). The sweeping law promised boons to Americans in general and to those struggling with mental disorders in particular. It required health insurance plans sold in state-run marketplaces to cover mental health services, prevented all plans from denying coverage for pre-existing conditions, and obliged all plans to cover children on their parents’ policies until age 26. The law has provided health insurance to an estimated 20 million previously uninsured Americans.
These gains have come at a cost, however, as the insurance industry and employers have pushed more of the costs for health care on to consumers. At the same time, a shortage of mental health professionals is also squeezing people diagnosed with ADHD and other mental disorders, even when they have insurance, according to Dania Douglas, the state advocacy manager at the National Alliance on Mental Illness (NAMI). With so many potential clients and so little competition, many practitioners do not accept insurance. “This means that many people seek treatment ‘out-of-network,’ which drives up out-of-pocket costs,” says Douglas.
Sixty-five percent of ADDitude’s survey participants, with and without insurance, said the costs for care had affected their ability to treat their ADHD. Twenty-three percent said it had greatly affected that ability, limiting, and sometimes eliminating, treatment options.
“My son desperately needs help, but we can’t afford it,” says Shawna Clark, a stay-at-home mother of two in Martinsville, Indiana. Clark’s husband earns $20 an hour working in the parts department of a truck repair firm, which puts the family over the income limit for Medicaid. Yet Clark says the family can’t afford full-coverage health insurance offered by his employer, which has recently increased from $1,200 to $1,600 a month for a family of four.
A learning specialist in a private school, in New Orleans, tells a variation on this story. Both she and her two children have been diagnosed with ADHD, but her insurance plan pays only 60 percent of her family’s health expenses, making it impossible to pay for services like occupational therapy, speech, and behavior therapy for her two children. She estimates that she spent more than $5,400 out of pocket on medications and therapists in 2016.
In her job, she says, she often talks to wealthy parents “who come to me crying” about the high costs of paying for ADHD treatment, making her worried about the comparative pressures on parents with fewer resources.
Other survey respondents take “creative” measures to get care. One says she sees a general practitioner, rather than specialists, to cut down on costs; another visits the therapist every other week, rather than weekly. One mom dropped after-school care to pay for her son’s tutoring.
“It really stinks to have to not take meds consistently,” writes one respondent. “I am not getting the full benefits I could have with a more consistent medication routine.”
A 2012 study, published in the Journal of the American Academy of Child and Adolescent Psychiatry, estimated the annual costs of caring for ADHD at up to $2,720 for children and $4,120 for adults. Our survey suggests that this understates the costs. Survey respondents said that, on average, they spent $2,125 out of pocket just for ADHD doctor and therapist appointments for children in 2016. For adults, it was $1,493. On average, they said they also spent $935 for medications for children, and $735 for adults.
A majority of families reported paying for non-medical strategies that they associated with ADHD care, such as coaching, private schools, neurofeedback, and non-prescription vitamins and supplements. These costs totaled an average of $3,509 in additional annual expenses.
ADHD Care on Your Own Dime
ADHD experts note that these averages underestimate the costs of coping with the disorder, given that people with ADHD usually have higher general health care costs, due to common co-existing conditions such as anxiety, autism, depression, sleep disorders, drug and alcohol addiction, and a heightened risk of accidents. (To learn more about the costs incurred by survey respondents, see “Survey Says?” below.)
Several survey participants who either lacked health insurance or had plans with limited coverage described strategies they use to stretch their health-care dollars. Some say they only see doctors willing to fight with insurance representatives. Others request free samples of medication from their doctors, or use manufacturer coupons and pharmacy discounts. Several say they have taken on another job or cut back in other areas of their life to help pay the costs of care for themselves or their children.
“I’ll do anything to get the care my kids need,” writes one mother. One respondent says she has cut back on heat and new clothes to afford health care for her child.
Unfortunately, these hardships aren’t likely to improve anytime soon. In March the Trump administration failed in its effort to repeal the Affordable Care Act and replace it with a plan that would cut subsidies for low-income families and benefits for some costly conditions. President Trump promised to let the ACA “explode,” fanning fears that costs will continue to rise.
“I’m afraid to listen to the news these days,” says Erin O’Malley, the health counselor with two daughters diagnosed with ADHD, who lives in Bloomington, Illinois. “There just aren’t enough resources for parents as it is.”
Budgeting for ADHD
More than 82 percent of our survey respondents said they haven’t found any strategies to help cover costs of ADHD care. But nearly 18 percent did and, together with ADHD experts, offered some tips below.
1. Know the Territory
Taking the time to educate yourself can save you time and money down the line — in particular, by helping you avoid spending scarce funds on bogus “remedies.” There are many good free online resources, including the National Alliance on Mental Illness (NAMI; nami.org), Children and Adults with Attention-Deficit/Hyperactivity Disorder (CHADD; chadd.org), understood.org, and ADDitudeMag.com.
> “I do a lot of research to try to make up for the lack of therapy.” —Caiti Weiggands, Woodbridge, Virginia
> “I read anything I can on Kindle Unlimited and try to apply strategies I learn. I also look to Pinterest for occupational therapy and visual spatial activities. I watch webinars hosted by ADDitude.”
2. Don’t Waste Money on Unnecessary Procedures
You could find yourself paying $4,000 or more for a neuropsychological workup that may not be needed, or $2,000 or more for a “diagnostic” brain scan, despite the consensus of mainstream scientists who call such scans a scam.
> “Do not get snookered into expensive, unnecessary medical tests or brain scans!” says psychiatrist Edward Hallowell, M.D., author of several bestselling books on the disorder. Hallowell says a skilled pediatrician or internist should be able to diagnose ADHD at a cost covered by insurance.
3. Find Savings Online
Several survey participants said they’ve been helped by sites such as goodrx.com, which offers price reductions of up to 80 percent on prescription drugs. Sometimes manufacturers of brand-name drugs offer their own discounts. Be careful, however: One respondent said he had to stop buying one brand-name medication from Canada after learning it was illegal to import the drug to the U.S.
Several people mentioned using patient assistance programs offered by drug makers to reduce medication costs. These programs are for people who can’t afford the prescription drugs they need. To get the process started, mail in an application that you can download from the drug company’s website. Nonprofit organizations and states also have patient assistance programs. NeedyMeds (needymeds.org), a nonprofit, maintains an extensive database of information about patient assistance programs. You can search online for assistance programs in your state. These programs are typically called “state pharmaceutical assistance programs,” or SPAPs.
> “I always check websites of drug manufacturers to see if they offer discount coupons for medications. I haven’t found a medication yet that doesn’t offer a discounted rate with the use of their coupons.”
> “With the manufacturer (Novartis) patient assistance program, my Focalin prescription is only $5/month.”
4. Ask Your Doctor or Pharmacy for Medication Samples and Discounts
Sometimes all you need to do is ask.
> “Intuniv samples sufficient for the full prescription were provided by our psychiatrist for a full year.”
> “When we start a new medicine, I ask the doctor for as many samples as I can get for both myself and my son. This way, if the medicine doesn’t work well for me, I am not out too much money.” —Marjorie Sostak, Groton, Connecticut
5. Use a Generic Medication
Many respondents acknowledged that generics are much cheaper than brand-name drugs. Several respondents said they had to try a few generics before finding one that worked as well for them as the brand name (and many were dissatisfied with the generic, but took it anyway because of the lower cost). Some noted that their insurance would cover brand-name drugs only after trying generics.
> “We would have more consistency in my son’s medication if we chose brand-name medication, but it is much more expensive.”
> “After trying generic Ritalin, which didn’t work, we found that Evekeo worked well. Our insurance has a $60+ copay for non-generic drugs, so I applied for the drug maker’s discount card, which cut the cost almost in half each month. Generic drugs are $15 or less per month with my insurance.”
6. Shop Around for Insurance
Most, but not all, plans now cover mental health. If you work for a company with a plan that doesn’t, it may make sense to buy supplemental coverage.
It’s also worthwhile to learn about the Mental Health Parity and Addictions Equity Act passed by Congress in 2008. It requires health plans that offer mental health coverage to provide it on the same terms as other benefits. If you suspect your health plan isn’t covering your mental health as required by law, you can learn more by visiting the White House Parity Portal: hhs.gov/about/agencies/advisory-committees/parity.
> “We will be reevaluating our health plan soon in hope that another plan will help curb the financial burden. But we anticipate paying quite a bit more in premiums.”
> “I switched him from his father’s health plan to Medicaid.” —Courtney Culkin, New York, New York
> “We worked with the local County Developmental Disabilities office to file for Medicaid as secondary insurance for my son. We are excited because we could begin occupational therapy again with this help to cover the copays and deductibles, and it would also cover the cost of the visit with the naturopath.”
7. Start a Flexible Spending Account (FSA)
Your employer may offer this benefit, which allows you to estimate and set aside a certain amount of money to pay for out-of-pocket health care costs for the year. The amount is deducted from your paycheck before taxes, so it should reduce your tax liability. Be careful not to overestimate the amount you’ll spend on health care, however, as most FSAs have a “use it or lose it” clause. This means the funds expire at the end of the calendar year or set period.
> “Flexible Spending Accounts and visiting therapists every other week help us save money.”
8. Shop Around for a Collaborative Doctor
Make sure your doctor is willing to work with your budget, including helping with insurance claims. Some doctors are willing to consult by email for some questions, rather than insisting on an appointment. Teaching hospitals are good resources; many offer sliding scale payment plans. Keep an eye out for clinical trials, too.
> “We have participated in two free research projects through local universities — one for sibling communication and one for Qigong.”
9. Lean on Your Public School
Under federal law, schools must provide equal access to education for all students. This means they are obliged to offer special resources to children with serious learning challenges through an IEP or 504 Plan, although parents often have to fight and put in a lot of time and effort to get one.
10. Join Support Groups
It’s a lot cheaper than private sessions, and you make more friends.
11. Start Moving and Keep Moving
Aerobic exercise, such as swimming, running, and bicycling, can be cost-free and is well documented to help keep you more focused. Lots of studies have found that kids who take part in a regular physical activity program showed important enhancement of cognitive performance and brain function.
When ADDitude seeks the scoop on a topic affecting those diagnosed with ADHD, we go to the true experts — our readers. We wanted to know if you are getting the care you need to manage symptoms, how much it costs, if it is affordable, and, if you can’t afford care, the workarounds you have found to manage the disorder. ADDitude’s editorial staff developed a comprehensive online survey about the costs of ADHD. Here are some of the key results:
Who Needs Coverage
> 65% had expenses for a child (or children) with ADHD
> 49.6% had expenses for an adult
Type of Insurance Plan
> 56.5% had insurance under a large employer plan
> 16% had a small-employer plan
> 4.2% had a health plan purchased through a state health marketplace
> 5.7% were on Medicaid
> 1.1% had no insurance
Extent of Insurance Coverage
> 33% estimated that their plan covered 50% or less of their costs for ADHD diagnosis, treatment, and medications. About 8% said it covered none of these costs
> 16% said the medications they take are not covered by their health insurance
> More than 50% said they had been limited by insurance in taking the medication they wanted
> On average, respondents said they had to pay $2,199 for their deductible before their health plans would cover expenses
> On average, respondents with a child (or children) with ADHD estimated the following out-of-pocket costs:
> $2,684 — ADHD evaluations and diagnoses (one-time)
> $2,125 — Ongoing appointments for treatment (annual)
> $935 — ADHD medications (annual)
> On average, respondents who had expenses for themselves or another adult with ADHD estimated the following out-of-pocket costs:
> $1,689 — ADHD evaluations and diagnoses (one-time)
> $1,493 — Ongoing appointments for treatment (annual)
> $735 — ADHD medications (annual)
> On average, respondents estimated $3,509 in annual expenses for “non-medical” costs that they associated with ADHD care, such as vitamins or supplements; gadgets or apps; private school or tutors; social skills groups; or ADHD coaching
How Cost Affects Treatment Options
> 42% said the cost of care affected their household’s treatment options to some extent
> 23% said the cost affected their household’s treatment options greatly, yet only 18% of all respondents had found any strategies or workarounds to help their households cover the costs of ADHD care
> 84% said their household was living with one or more diagnosis (such as anxiety, depression, or learning disabilities) in addition to ADHD