All interaction with the insurance company, including phone calls, needs to be documented in writing. Email is okay as long as it’s clear that any information shared comes directly from the insurer. The Mental Health Parity and Addiction Equity Act of 2008 (MHPAEA) requires insurance companies to cover mental, behavioral, and substance use care equal to/in the same way as physical health care. For example, under this law, if an insurance plan pays 80% of the cost of seeing a clinician within their insurance network, then by law it wouldn’t matter if that provider was a PCP, an ear-nose-and-throat doctor, or a psychiatrist. The Mental Health & Autism Insurance Project works to explain the MHPAEA and ensure that this law is enforced. In September, 2024, the U.S. Departments of Health and Human Services (HHS), Labor, and the Treasury released new final rules implementing MHPAEA. While the practical implications of these changes will require greater explanation before they are implemented in January of 2025 and 2026, there’s a fact sheet with some details available now. Do all insurance plans have to follow the MHPAEA? There are still some insurance plans that are not required to follow the mental health parity law. These include: Medicare U.S. Department of Defense/Tri-Care some Medicaid plans (fee-for-service plans) some non-federal government plans some workplace plans that have fewer than 50 employees plans that have been active since before March 2010. The National Alliance on Mental Illness (NAMI) has information on mental health parity. This includes a list of benefits and services that must be covered equally. For autism, there are also state-by-state mandates. Recognizing disparities in mental health coverage Even though the law requires the same level of coverage for mental and behavioral health and physical health care, it’s clear from the list above that many plans aren’t required to cover mental health, while other plans have been effectively avoiding it or under-covering it. People with Medicaid coverage can use this interactive map with contact information for the Medicaid Director in each state. ParityTrack is an organization that follows mental health parity compliance state by state. It provides information on laws passed in each state and how they affect the mental health services delivered. For example, a 2018 Iowa law requires insurance companies to cover telehealth visits. The U.S. Department of Labor (USDOL) is responsible for ensuring that insurance companies comply with the MHPAEA. The USDOL has advice about mental, behavioral, and substance use benefits, and explains how the organization enforces the mental health parity law. Read the news release about the Department of Labor’s 2022 report to Congress on insurance companies and mental health parity. If care is denied, file an appeal It takes effort to appeal an insurance claim, but if a claim is denied, appealing is one way of petitioning for coverage. When a claim is denied, the written notification will include instructions for filing an appeal and a contact number for questions. All interaction with the insurance company, including phone calls, needs to be documented in writing. Email is okay as long as it’s clear that any information shared comes directly from the insurer. If there’s proof an insurance company has broken the law in denying rightful mental or behavioral health care, another way to take action is to report the violation to The Kennedy Forum. Advocate for enforcement and more for autistic people Register to be part of the Grassroots Advocacy Network at Autism Speaks. This network works to raise awareness of the needs of people with autism and enforce laws that protect autism care. Visit the Mental Health America Advocacy Network for a toolkit to improve compliance by contacting state legislators, and more. For valuable information about appeals, consult the Autism Law Summit’s ABA Authorization and Appeals Playbook.

For an autistic person on a parent’s health plan, part of managing adult health care is researching and understanding the options for health insurance as age 26 approaches. Adult health care insurance under a parent's plan usually ends at age 26 For an autistic person on a parent’s health plan, part of managing adult health care is researching and understanding the options for health insurance as age 26 approaches. The significance of age 26 Under U.S. law, insurance plans are required to pay for the care of dependents (someone who depends on a parent’s income) up to age 26. This is true even if that person: gets married gives birth or adopts a child is working, unemployed, or in school lives in another location, not with the parent is not listed as a dependent on the parent’s taxes is eligible to get health insurance through their own employer. For more information about staying on a parent’s plan until age 26, visit the Healthcare.gov site for people under 30. Staying on a parent’s health care policy after 26 Dependents with a diagnosed disability are often able to remain on a parent’s health insurance plan past age 26. A formal medical diagnosis of autism spectrum disorder (ASD) counts toward this exception and requires proof of disability from a medical provider, such as a pediatrician, primary care provider, or psychiatrist. The insurance company will provide a form for the clinician to complete, and if there is guardianship in place, providing proof of guardianship can also help establish eligibility. The adult dependent’s permanent address should match the policy holder’s. Key language: The medical provider should include language that the disabled dependent has “lack of substantial gainful employment” (i.e., the autistic adult cannot work full-time due to their disability), and thus cannot access employer health insurance and must remain on the parent’s health plan. The insurer usually responds with a letter approving the dependent’s status, and employers may request a copy of this document to confirm this extended coverage for their company files. The approval letter will often state that the extended coverage is valid for a specified length of time. Keep in mind that the insurer can require proof of eligibility at any time, so be sure to keep any related paperwork organized and accessible. Key notification: Be sure to notify the insurance company as soon as possible of the plan to keep an autistic adult on a parent’s insurance after age 26. It often takes months for the insurance company to grant final approval, so discussions with the insurance company should start when: the autistic adult turns 25, and the open enrollment period for the parent’s insurance plan is approaching. If the parent with the insurance changes jobs or insurance carriers, coverage for the disabled dependent usually continues; however, you may need a new approval. Check with both the current and new insurance companies to ensure continuity of care. Getting back on a parent’s policy after 26 Once an individual is removed from a parent’s health insurance policy, it is extremely difficult to get back on. This is something to consider carefully, as it may make sense for an autistic adult to stay on a parent’s policy longer, rather than be removed and unable to rejoin if necessary. Private insurance plus Medicare and/or Medicaid When an adult over age 26 is on a parent’s private insurance policy and also has Medicare, the private insurance is usually primary (claims go there first) and Medicare is the secondary insurance. If the autistic adult is also on Medicaid, that insurance is the third option and is called tertiary insurance. In this instance, the clinician or hospital files insurance claims in this order: Private insurance, then Medicare, then Medicaid If the private insurance doesn’t cover a claim, it is sent to Medicare, then to Medicaid. Any rejected claims will arrive in the mail (these are usually marked “this is not a bill” but appear as such), but no payment should be forthcoming until an actual bill arrives from the provider confirming that the claim has been through all possible insurance processes. This can take weeks or even months. The small employer exception If the parent works for a small business that has 100 or fewer employees (20 employees for people over 65), then Medicare is the primary insurance for the autistic adult. In this case, claims processing will flow in the following order: Medicare, then private insurance, then Medicaid The claims process is handled entirely through the provider, but more often than not, processing and approval takes months rather than weeks. Again, it is best to wait until an actual bill arrives before paying the claim or filing an appeal. Learn more about young adult insurance coverage from the U.S. Department of Health & Human Services. Individual health care insurance from the Affordable Care Act (ACA) health insurance marketplace Autistic adults who opt to leave their parent’s health care coverage (if they qualify) and are not employed or are opting out of their employer’s health coverage can apply for health insurance plans through the U.S. health insurance marketplace at Healthcare.gov. Just as with an employer’s insurance plan, changes to Affordable Care Act (ACA) coverage are typically offered once or twice a year during specific enrollment periods. Visit the Healthcare.gov Quick Start Guide to learn more about how to find plans and when to enroll. Anyone qualifying as having a special health care condition (which may include autism) may be eligible to get insurance at a lower cost through Healthcare.gov. Learn more about insurance for people with special health care needs. Healthcare.gov offers specific advice about health insurance options for young adults. What happens when a younger disabled adult becomes eligible for Medicare? See the Insurance Resource Center for Autism and Behavioral Health’s fact sheet. (Note: the fact sheet says it’s for Massachusetts, but most of the information on it also applies to people who live outside Massachusetts.)

All 50 states have laws that say insurance companies must pay for autism treatment, although what is covered can vary. For those with private insurance coverage, the first step is... All 50 states have laws that say insurance companies must pay for autism treatment, although what is covered can vary. For those with private insurance coverage, the first step is to find out what your plan is and then look up what kind of coverage for autism each state requires. The National Conference of State Legislatures provides information about autism coverage in each state. In addition: Get more information on state regulations for health insurance plans from Autism Speaks. Find the local Autism Society to research healthcare options. Medicaid or Medicare? Understand the differences between the two in our article on medicare and medicaid for autistic adults. The reason this page doesn’t include links to Medicare coverage for adults with autism is that Medicare does not, at this time, cover the same behavioral health services covered under Medicaid. The best way to get the most up-to-date information about Medicare coverage is to contact them directly at 1-800-MEDICARE. Find the Health Insurance Marketplace website for each state The Department of Health and Human services explains how the Affordable Care Act works regarding autism coverage. Healthcare.gov explains health insurance options and how to qualify for Medicaid or requalify if coverage has lapsed. Locate the nearest Developmental Disability Council Every state has a Developmental Disability Council with useful resources on insurance and more. The National Association of Councils on Developmental Disabilities has a directory that leads to the Council in each state. Find the local Medicaid director People with Medicaid coverage can use this interactive map with contact information for the Medicaid Director in each state. Check the U.S. Department of Health & Human Services The U.S. Department of Health & Human Services Interagency Autism Coordinating Committee (IACC) offers a range of helpful information on state resources for autism, insurance, and health coverage. Some are for children, but many apply to autistic adults, too. For national and state-specific information see the IACC’s Agencies and Organizations page. For Massachusetts families – and beyond The Insurance Resource Center for Autism and Behavioral Health, part of the E.K. Shriver Center at UMass Chan Medical School, has helpful information and resources on their website, www.massairc.org. They primarily assist Massachusetts residents, but much of their information is also helpful for those who live outside of the state. Advocate for better coverage! It’s also a great idea to advocate for better coverage from private insurance, Medicare or mental health parity. Help improve the system – start by contacting legislators through the National Conference of State Legislatures.

For caregivers whose autistic adults already have Medicare or Medicaid, any change in insurance must be reported to Medicare as soon as possible — even if it is simply changing from one employer’s insurance to another. Medicare requires current information for all guardians of adults on Medicare or Medicaid. Medicare age requirements Medicare is the U.S. government health care program for adults ages 65 and older. It is also available to adults ages 18 to 64 who have certain disabilities. There are many special circumstances that can affect Medicare enrollment. Regardless of the age when applying, everyone should consult the Medicare guide for beginning coverage. The two most common times to enroll in Medicare are: at age 65 (when many people retire). The enrollment period starts three months before the 65thbirthday, and ends three months after that. after age 65, when employer insurance coverage ends. The current deadline is eight months after coverage ends, so it’s important to apply before that window closes. Autistic people who did not qualify earlier in life (as well as their caregivers) are eligible for Medicare once they turn 65. Learn how Social Security benefits are linked to Medicare. What happens when a younger disabled adult becomes eligible for Medicare? See the Insurance Resource Center for Autism and Behavioral Health’s fact sheet (the sheet says Massachusetts, but most of the information applies to people who live outside of Massachusetts). Important: For caregivers whose autistic adults already have Medicare or Medicaid, any change in insurance must be reported to Medicare as soon as possible — even if it is simply changing from one employer’s insurance to another. Medicare requires current information for all guardians of adults on Medicare or Medicaid. Find the date you can sign up for Medicare. Learn the basics of Medicare. What does Medicare pay for? Medicare covers specific health care expenses. The parts of Medicare include: Medicare Part A – Everyone who signs up for Medicare receives Part A, which covers hospital care, nursing care, and hospice. Medicare Part B – Everyone who signs up for Medicare also receives Part B, which covers medical expenses such as seeing a clinician or other health care provider. Medicare Part C – Additional insurance to cover what Medicare Part A and Medicare Part B do not cover. You can choose a Medicare Advantage plan from a private insurance company. It is still Medicare, but a private insurance company oversees it. Medicare Part D – Optional insurance to help pay the cost of prescription drugs. Medicare Advantage plans usually include a drug coverage plan. The Medicare site has a page that explains how it works with private insurance and who pays for what. Signing up for Medicare Visit www.Medicare.gov or this sign-up page. Still have questions and want to talk to a person? Call 800-MEDICARE (800-633-4227).