Neurodivergent Children Often Come With Medical Costs: How to Plan as a Parent

When you have a neurodivergent child, there may be some unexpected medical costs. Here's how to support your kid while balancing your budget.

Parents typically prepare for many expenses before having children. When you have a neurodivergent child, however, you may face some medical costs you never planned for. How to budget and pay for a child's individualized care varies from family to family. But there is a little bit of prep you can do to help minimize costs—or at least plan your yearly budget.

First, what is neurodiversity?

A neurotypical person has a brain that functions without deviation from the "norm," whatever that norm might be as determined by society. Most diagnoses that fall under the mental health umbrella can be called neurodivergence, which refers to differences in brain function among different people.

Neurodivergence is often and incorrectly used as a synonym for autism. While autism is a type of neurodivergence, the term encompasses attention deficit hyperactivity disorder (ADHD), obsessive-compulsive disorder (OCD), processing disorders, anxiety, depression, epilepsy, traumatic brain injury, and many other common and uncommon conditions—either on their own or in combination with others.

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Get a neurodivergence diagnosis

If you suspect your child has a condition that falls under neurodiversity and would like to help them navigate a world built for the neurotypical, see your child's health care provider for information on how to get a formal diagnosis.

There's a financial reason for this. "It is not uncommon for parents to hesitate in seeking out a diagnosis for various reasons; however, if a child has a formal medical diagnosis, insurance plans may offer more benefits," Aimee "Caitlin" Sanschagrin, MS, OTR/L, founder of Bright SpOT Pediatric Therapy, tells Health. If a diagnosis of neurodivergence is made, you'll be able to use the resources available to you.

Access public services

Once you know your child is neurodivergent, you can obtain services through your local school district. For babies and kids younger than kindergarten age, free services are available through the Early Intervention program. Once kids go to kindergarten, they may get services from your district's special education department. They might have an individualized education plan (IEP) or a 504 plan, both of which are governed by the Individuals with Disabilities Education Act. Remember, every child has a right to free and appropriate education.

Additionally, "Many parents do not realize that social security disability benefits are available to children from birth until they graduate high school," Amanda McDonald, founder and president of Unbound Disability Claims, tells Health. These benefits "help cover treatment that insurance would not normally cover," she adds, and they help cover household bills for parents who are unable to work due to their child's medical impairment.

Supplement with private (paid) services

While your child can take advantage of public services, you may also choose to supplement these services with private providers. Many types of medical support for kids with disabilities fall under neurodivergence, including various therapies, as well as psychiatrists or nurse prescribers, if your child takes medication.

If you are insured through your job, the marketplace, Children's Health Insurance Program (CHIP), or Medicaid, many of these services are covered. However, some types of therapy aren't covered by all insurance plans—it varies widely based on your particular plan.

Get the most out of your insurance

Know your plan or potential plan well. "Parents need to carefully review what their insurance plan covers related to mental health benefits, which is usually a separate benefit from medical services," Pamela Berger, practice administrator at Sundstrom Clinical Services, tells Health. "If the parent wants to know whether a specific service or drug is covered by the plan, 'member services' is a valuable resource at the health plan and can provide that information to the member." Speak on the phone with your provider as many times as you have to so you fully understand your and their financial responsibility.

If you have insurance through your job, "talk to your employer about a Health Savings Account (HSA) or Flexible Savings Account (FSA), which you can fund with pretax dollars from your paycheck," Michael Botta, who has a PhD in Health Policy from Harvard, tells Health. "If your employer doesn't offer one, create one on your own or talk to your employer about sponsoring one for employees."

Pick the right plan

If you get to choose your plan through your employer or the marketplace, double-check with both the insurance company and your health care providers that your plan has them in-network.

"Typically, a PPO plan is going to have the most access to various in-network providers," says Sanschagrin. However, that doesn't mean parents should shy away from seeking services with an out-of-network provider, she advises, since some out-of-network providers will bill your insurance. Then, the parent can submit a claim with the insurance company in order to get reimbursed for a percentage of the cost.

Budget for therapies and other services

Once you have a plan, "get specific clarification, not only on which therapies are covered (speech therapy, occupational therapy, physical therapy), but also how much therapy your child can receive in a year," says Sanschagrin.

She suggests that parents ask whether the number of visits covered is a "hard" or "soft" number—aka whether a therapist can request more services due to need. If the number of visits is "hard," your insurance will only pay for a certain number every year. If the number of visits is "soft," the provider can submit paperwork to the insurance company telling them you need more visits, and the insurance company may pay for more.

For budgeting purposes, "knowing this number is also helpful in that parents may be able to stretch their visits by reducing sessions to every other week rather than weekly, if appropriate," Sanschagrin says. If your child sees specialists that have an associated deductible, plan to hit that—and be pleasantly surprised if you don't—or meter out your visits to fit your budget.

Troubleshoot billing issues

Insurance companies and doctor's offices make mistakes, but "therapists should be able to easily explain why a particular code was billed, and why it is appropriate for the child," says Sanschagrin. Keep records of billing and payments for at least seven years after services to make sure you're only charged what you owe.

Set up an estate plan

We hope beyond hope that our children outlive us, so you need to plan for your child's future after you're gone. An estate lawyer and/or financial planner can help you set this up. "Be sure to have an estate plan in place, including health care documents," Patrick Hicks, head of legal and an estate planning attorney with TrustandWill.com, tells Health.

Hicks also suggests setting up a supplemental trust to ensure your child's care. This "is a tool that lets you better protect a disabled loved one without putting their eligibility for government-offered benefits, like Supplemental Security Income (SSI) and Medicaid, at risk," he explains. Money from some types of trusts can be used by your children, the trustees, while you are still alive.

The big picture

All kids deserve to live in our world with every opportunity available. Unfortunately, our society is not perfect, and deviations from an arbitrary norm aren't always accommodated. Yet the world is always changing, and stigmatization of mental health care is on the outs.

While the world may not support your amazing, unique child in all areas, you can do what every parent should strive to: Help them grow up by giving them the best care you can. Seeing your neurodivergent child thrive in the care of highly trained and skilled professionals is worth every penny.

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