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If you have a child who has been recently diagnosed with autism, you no doubt want to know what insurance options you have. Unfortunately, as with most things having to do with insurance, determining which one is best for you is complicated.
The best health insurance option for autism should cover Applied Behavior Analysis (ABA) treatment and cover many other options. Unfortunately, no national standard exists for what coverage companies should provide, so insurance options are based on the laws of the state one lives in.
You either already know or are about to learn that raising autistic children can be awfully expensive. Even though it does not seem fair that navigating the insurance system should be another burden, it probably will be. This guide is designed to help you understand why the system is so complicated and give you some tips on navigating it.
How Much Does Autism Treatment Cost?
According to a CDC estimate, the average yearly cost for treating and caring for a child on the autism spectrum is $17,000 for basic ABA therapy. Additional costs for providing care for a child with autism can bring those costs much higher. One study found that autism therapy can cost up to $60,000 a year.
Why such a discrepancy in these numbers?
- First, costs for therapy vary from state to state.
- Second, states can set their standards for what they consider as an appropriate therapy for children with autism.
- Third, States are also free to set maximum income requirements when parents must contribute to treatment.
Finally, to manage expenses and help insurance companies set rates, most states set caps on what an insurance company must pay out. These caps vary greatly, from $50,000 in Arkansas to age-based caps in Alabama ($40,000 for ages 0-9 down to $20,000 for children over 14) to a few states with no caps.
Some states have no spending caps but end coverage at a specific age, either 18 or 21. A few states have no spending or age caps. These caps only apply to state-regulated health benefit plans. If a company has a self-funded health plan, they are not required to follow their state’s autism laws.
For these reasons, determining how much it will cost to care for a child with autism is difficult.
Besides the costs of autistic-specific treatment, children who are on the Autism Spectrum Disorder (ASD):
- Visit a pediatrician 40% more than kids without autism
- Have increased psychiatric visits
- 40% of additional medication costs
- Often take part in additional therapies
The following is a shortlist of additional therapies or those a state might cover instead of ABA.
- Speech Therapy is used to help children communicate. Some therapists complement traditional therapy with assistive technology. This involves the use of tablets or communication boards to assist with communication skills.
- Social Skills and Occupational Therapy help children learn how to interact with others and provide them with the skills necessary to live as independently as possible.
Medication can be another expense. Some children benefit from medication that helps with anxiety, depression, high energy levels, inability to focus, seizures, or self-injury.
Then there are the non-medical costs, which include one parent reducing or not working and other financial burdens, not to mention the stress of having to balance work and family responsibilities.
Due to the challenges of raising a child on the autism spectrum, one would hope insurance companies would make it easy for parents. But often, that is not the case. Not only do reimbursements for treatment depend on where you live, but your insurance type also influences what will and will not be covered.
The first step to finding out what will be covered determines the kind of insurance coverage you have.
|Source of Insurance||Key Point|
|Employer||Health plans will vary based on whether the plan is self-funded or fully insured.|
|Health Insurance Marketplace||Essential health benefits and pre-existing conditions and guaranteed coverage available for plans in the Marketplace, but states can set additional guidelines. For example, not all states offer ABA coverage.|
|Individual Plan Not Purchased through Marketplace||Should provide state-mandated coverage. Not eligible for discounts offered through Marketplace.|
|State Employee||These plans are considered “state-regulated,” so they should follow state guidelines.|
|Federal Employee||All plans cover Autism services, including ABA.|
|Military||Autism services are covered under the TRICARE health care program.|
|Medicaid||States are responsible for providing Medicaid services, so eligibility and coverage vary greatly.|
Coverage Through an Employer
The type of coverage for ASB children depends on the type of plan the employer has. The plan can either be self-funded or fully insured.
Although these plans must comply with federal laws, benefits are otherwise dependent on what the employer wants to be covered and are not subject to state autism laws. This does not mean they will not cover a full range of autism-related services, only that they are not required to.
Approximately half of the companies with more than 500 employees cover ABA. Companies such as Bank of America, Home Depot, and Walmart are among those that do—consult this incomplete list of some self-funded companies that offer ABA benefits.
Speak with your company’s human resources department to find out what treatment options are covered. Ask for a copy of the plan summary so you can read the fine print. Keep the outline of your plan for potential disputes with the insurance company.
If autism services are not covered, your company might have other options. Some companies offer several choices or provide both self-funded and fully insured plans. Remember that plans are regulated by the state where they are headquartered.
If your employer has a fully insured plan, it must follow the state’s laws in which the company is headquartered. Your insurance card should indicate the state where it was issued. All states now cover ABA—up to a point. Age, income, dollar, or hours of service caps are not consistent across states.
Health Insurance Marketplace
If you will be purchasing insurance for yourself or your child, the Marketplace has an advantage in that you will be able to compare the costs and benefits of different plans. When shopping for insurance, this is significant.
It is possible to purchase a child-only plan on the Marketplace. This policy would not cover parents and consider if your employer doesn’t offer the type of benefits you need to care for your child. Grandparents who are the primary caretakers and covered under Medicare might want to use a child-only policy. Divorced parents can also take advantage of this.
Should your child be covered under an employer-sponsored plan, you can still purchase a child-only plan on the Marketplace, but you will not be eligible for Marketplace discounts.
Not all states cover ABA therapy in their Marketplace plans:
- Southern states – Alabama, Florida, Georgia, Mississippi, North Carolina, South Carolina, Tennessee, Virginia, and West Virginia.
- Midwest states – Iowa, Kansas, Minnesota, Nebraska, Oklahoma, and South Dakota.
- Eastern states – Pennsylvania and Rhode Island.
- Western states – Wyoming.
Advocacy groups like Autism Speaks continue to work with state leaders to expand coverage.
Individual Plan Not Purchased through Marketplace
If you choose to buy a plan without using the Marketplace, you need to know the following:
- Individual plans must follow mandates of the state they are headquartered in.
- You will have a more challenging time comparing benefits.
- You will not be eligible for any financial assistance or reductions in premiums.
Even if you ultimately decide to purchase a plan outside the Marketplace, you might want to consider starting there. You will have an easier time comparing plans and find out what rate reductions you would qualify for.
Reminder: you can only apply during open enrollment periods, unless you have specific life changes, such as loss of income, divorce, or separation, or had a baby.
Generally, state employee plans are state-regulated and should follow the requirements of the state. However, many states consider the plan for state employees as self-funded, so some benefits might not match state laws.
The Federal Employees Health Benefits Program manages insurance for federal employees through the Office of Personnel Management. All plans for federal employees must cover autism services, including ABA. However, there might be differences in coverage between plans, so read each plan’s fine print.
The insurance program for U.S. service members and their families is TRICARE. Many essential autism services are covered. After an autism diagnosis has been made, active-duty members should enroll in EFMP (Exceptional Family Member Program) and register in the ECHO option. Follow the link for more information about the TRICARE ACD services.
Insurance options for Medicaid depend on what the state offers. This includes income levels required for eligibility and what services and treatment options the state will pay for. Although some limited information about services is available through the federal Medicaid site, you should use your state’s website for more specific information.
If you earn too much to qualify for Medicaid, you might be able to receive some financial assistance through the Children’s Health Insurance Program, also known as CHIP. Currently, over 9 million children are enrolled in CHIP, and either CHIP or Medicaid covers more than half of all children in the U.S.
Which States Have the Best Insurance for ASD Children?
The disparities of state offerings cause some parents to move to a state that will provide more support, even if that means taking a pay cut or switching careers. If you live in a state that does not offer much help, knowing which states provide better support is valuable information.
No age limit, coverage limit, and require all insurers to cover ABA Therapy
No age or coverage limit, but not all plans have to cover ABA Therapy
Age limits, no coverage limits, and all insurance must cover ABA Therapy
- Vermont (21)
- Maryland (19)
- Mississippi (8)
Age limits, no coverage limits, but plans not required to cover ABA Therapy
- New Jersey (21)
- Connecticut (15)
- North Dakota (21)
- Ohio (21)
- Minnesota (18)
- Nebraska (20)
- Utah (10)
- Wyoming (20)
- New Hampshire (varies on age)
- New York ($45k)
- Maine ($36k)
- Pennsylvania ($36k)
- D.C. (limited to the cost of similar therapy)
- Wisconsin ($50k)
- Delaware ($36k)
- Arkansas ($50k)
- Illinois ($45k)
- Florida ($36k annually/$200 lifetime)
- Georgia ($30k)
- Rhode Island ($32k)
- South Carolina ($50k)
- Virginia ($35k)
- Kentucky ($50k)
- Oklahoma ($25k)
Cost limits based on age or insurance
- New Hampshire
- South Dakota
No law requirements
Idaho (advocacy groups are working on changing this)
As you can see, some states provide better support for parents of ASD children. For example, Georgia has a $30k annual limit, while neighboring South Carolina provides up to $50k for autism-related services. Mississippi has no yearly limits but only until age 8.
Some states with cost limits based on age or insurance provide adequate support, but if you live in one of those states, you will have to go to the state’s website to find them.
The Quality of Care
Your carrier can claim they cover specific conditions, but you might not be able to find a provider in the insurance network. This can be due because of the process a provider has to go through to join a network. Or the rates the insurance company pays makes it financially unfeasible for a doctor or therapist to work with that provider.
For example, an insurance company considers a therapist who works with an ABA program to have a skill set comparable to a caretaker in a nursing home and pay accordingly. A well-trained interventionist is not going to be willing to work for wages barely above minimum wage.
Therefore, a company can claim they cover autism yet have few providers. Some carriers do this because of the expense of therapy. Others do not understand how complex ABA therapy is and view a therapist as a glorified caretaker.
Some insurance providers focus on short-term outcomes. A child who responds to their name or greets a stranger is proof the child is showing success. However, long-term skills, such as caring for themselves, are ignored. In most states, autism coverage ends when the individual turns 18, whether that person can take care of themselves or not.
Insurance Coverage Is Confusing
Trying to determine what insurance companies will cover and how they decide whether someone qualifies for services is complicated. Take, for example, this 18-page document from Cigna insurance regarding their autism coverage. It includes the criteria that need to be met, the diagnostic criteria, literature review, and more. The document is not light reading.
Questions to Ask When Choosing an Insurance Provider?
Trying to think of what to ask can seem overwhelming, so these are the most important questions to ask:
- Is the plan copay or coinsurance? A copay plan has set service fees. Coinsurance plans, on the other hand, reimburse based on a percentage of the services.
- What is the max out-of-pocket I will have to pay? Knowing how much you might have to pay before insurance will be responsible for copays or services. Generally speaking, plans with higher out-of-pocket maximums are less expensive. People who do not expect to need much care prefer those plans.
- What are the out-of-network benefits? If you need to use a provider that is out of network, you should know what you will be responsible for. A policy might cover 50% of out-of-network fees, or you might have to pay the full cost of those services.
- What are the plan restrictions? Even though plans that you purchase through the Marketplace need to follow state mandates, if your employer’s plan is self-insured, there will be additional restrictions, such as the number of visits per year or the type of provider one can use.
Additional Considerations for ASD Insurance
Once insurance has been narrowed down to two or three companies, it is time to drill down on needs specific to autism therapy. Doing so can save you the hassle, money, and having to change insurance—and possibly providers—again.
- What are the limitations per specialty? Ask about the guidelines for Speech, Occupational and Physical Therapy. Ask not only about the allotted number of visits but the length of those visits.
- What specific therapies are covered? Most children will need speech, physical, and occupational therapy, but some may need social and behavior therapy. Be sure to ask about ABA therapy or any other therapy you want to use.
- What supplies are covered? Should your child need devices to support therapy, such as an augmented speech device, ask about that.
Be prepared to think outside the “autism box” as you apply for claims. For example, a child could be receiving physical therapy for low muscle tone (hypertonia). Ask the therapist to code the physical condition instead of solely autism.
The same is true for mental concerns. If your child suffers from anxiety, have it coded as anxiety, not autism.
Also, be prepared to become good at organizing paperwork. If an insurance company refuses to pay for a claim and you file a grievance, you will want a paper trail.
Should I Work With an Insurance Broker?
A stockbroker will help you buy and sell stocks, and a real estate broker will help you buy, sell, or find the best mortgage when buying or selling a house. An insurance broker can help navigate the confusing world of health insurance.
While insurance brokers receive commissions from insurance companies, their priority should be the consumer. After all, an honest broker wants return customers, not a one-time transaction. An honest broker’s goal is to make the client happy, providing insurance that fits that person’s needs.
Brokers are licensed and regulated by state insurance departments. Most states require they take continuing education courses to keep their license. Like stockbrokers, who can sell stocks from a broad portfolio, insurance brokers can sell insurance from most companies working in your state.
A person who sells for a specific company is not a broker, but an agent, sometimes known as a captive agent. The agent has a vested interest in selling you a policy from the company they represent. If you have a good idea of which insurance company you will use, an agent can help you pick the best plan.
Since brokers earn commissions from insurance companies, most offer their services for free. Some have begun to charge small fees during hectic times, such as open enrollment. State insurance commissions regulate those prices, so additional charges should be the same from any broker.
Finding a Health Insurance Broker
It’s easy enough to find brokers and agents on the internet. Many people use that route to find brokers. However, it has become difficult to compare services and insurance policies without providing online brokers with minimum age, the number of people, and income. Even then, the information will be general, and you will be invited to speak or email someone.
Networking with friends, Facebook groups, and discussion boards might give you some leads. Companies like Angie’s List provide feedback and reviews of brokers. The Better Business Bureau is another resource. Use the National Association of Health Underwriters website to check the credentials of brokers.
Questions to Ask Marketers of ASD Therapies
Once you have insurance and begin an online search for ASD therapies, you will be contacted by marketers trying to sell you a program or treatment option. Some of those treatments might be helpful, while others might provide no help or even be detrimental or unsafe. How does one know the difference, especially if the marketer will benefit from using the treatment?
Besides asking experts such as your doctor or pediatrician, you can consult online resources that are science-based, such as this page on Interventions on Autism. Another option is to ask the marketers a series of questions to help you evaluate the intervention.
- What scientific theory or rationale is the intervention based on? Listen beyond the scientific-sounding phrases—does the explanation sound realistic or logical?
- Where can I find scientific research that says this treatment is effective? Testimonials and articles can tout effectiveness, but just saying medically proven or peer-reviewed doesn’t mean much. Make sure they can show you how to find the research.
- How will the benefits of the treatment be measured? It’s easy to tout the benefits of a program, but they should also explain what criteria will be used to show it is working.
- What are the possible side effects? An intervention might bring up some unexpected behavioral or physical changes. How will those be monitored and addressed?
- How hard is it to implement this therapy correctly? If a parent says the treatment is not working, the marketer can say the treatment is not being implemented as it should be. An intervention should not be so easy that anyone can do it, but not so tricky that it works if implemented with complete fidelity.
Apply for Grants
Grants are often overlooked as an assistance source. If your insurance coverage does not adequately cover your child’s costs, grants can range from help with education to medical treatment.
For example, research has shown that ASD children receive behavior and safety benefits from service dogs’ interactions. A group such as Can Do Canines trains dogs to assist children with ASD. Training a therapy dog can cost upwards of $20,000, but due to donors’ generosity, those fees are waived for families who meet their criteria. Assistance Dog United Campaign is another source for therapy dog grants.
- Autism Spectrum Disorder Foundation includes grants and scholarships for Equine Therapy, a swim program, iPad assistance, and more.
- Autism Support Network has a list of over 20 grant and scholarship offerings.
- The American Autism Association lists scholarships in several categories, including education, recreation, and service dogs.
- Outreach Autism Services Network provides a list of resources on their grants page.
Many of the tips you will find on applying for grants are the typical ones—make sure your family qualifies, fill out forms accurately and honestly, don’t give up, and be aware of deadlines.
One tip that does not get mentioned as much is to include recommendation letters. Including letters from friends can go a long way to providing additional information from another person’s perspective.
Whether you are dealing with insurance from an employer or trying to buy insurance for your child, it can be complicated, confusing, and frustrating. States regulate what insurance companies must provide, and there is a lack of consistency between them. Find out what your state requires of insurance companies and work with a broker or through the Marketplace to research different companies and policies.
- NCSL: Autism and Insurance Coverage—State Laws
- Autism Speaks: Health Insurance Coverage–Autism
- HHS.gov: ACA and Autism
- MHAP: Mental Health and Autism Insurance Project
- Autistic Advocacy: Private Health Coverage for Autism Coverage
- Pew Trusts.org: Coverage for Autism Treatment Varies by State
- Forbes: What is Covered? The Insurance Landscape for Autism Services
- Beacon Health Options: Autism’s Cost
- Cigna Insurance: Intensive Behavioral Interventions
- ASAT: Questions to Ask Marketers of Autism Interventions