How Families of Children with Special Needs Can File Insurance Complaints

A recent blog post from the National Disability Navigator Resource Collaborative mentioned that families who had concerns about their insurance claims can file complaints.  The blog also mentioned that Community Catalyst has new tools for consumers on how to do this.  The tools can be found in the “Resources” section at the end of this post.

What are Consumer Complaints?

Stethoscope on top of a health Insurance Claim FormIt is important for families to know and understand they can appeal or file complaints when an insurance claim is denied.  Only 1/3 of families appeal denials of insurance claims, even though half the time the denial is reversed in the favor of the consumer on the first try. Generally, a family must file an “internal appeal” with the insurance company before filing a complaint with an outside agency.

Sometimes, payment for a service is denied even though that service is supposed to be covered by the plan.  Therefore, it is important to make sure that a denial is consistent with the plan’s benefits, as spelled out in the Summary of Benefits and Coverage for that plan. Some other examples of inappropriate denials are those for benefits required by law, including “Essential Health Benefits (EHBs) covered by plans sold in the health insurance marketplaces,” surprise out-of-network bills (see our previous blog, and mental health services that should be provided on par with other types of benefits.

Many families were previously uninsured and so are unfamiliar with how the insurance claims process works.  Therefore, navigators and advocates need to make them aware of their right to appeal, and help consumers with the process.

In general, families may find help with internal appeals, contact their state Department of Insurance (DOI), or for mental health parity, contact the state Attorney General (AG).  Private insurers may be covered under ERISA, enforced by the federal Department of Labor., Public insurers are covered under the Centers for Medicaid/Medicare (CMS), and discrimination complaints can be filed with the Office of Civil Rights (see the ”Resources” section below.)

Mental Health Discrimination

A special note is needed about fairness in coverage for mental illness. Too often the term healthcare is only thought of as applicable to physical conditions.  Despite increased access to healthcare and knowledge that most mental illnesses are biologically based, there is still discrimination in this area.

Under federal law, however, insurance plans that cover mental health services must provide them on par with medical and surgical services.  This is known as mental health parity, and means that requirements and restrictions regarding mental health services – such as copays, visit limits, and prior authorization — must be the same as those applied to services for physical conditions. co-pays, annual visits, prior (Note that the Affordable Care Act requires non-grandfathered health plans in the individual and small group markets to cover mental health and substance use disorder services, including behavioral health treatment, but other plans, such as large employer plans, do not necessarily have to cover these services.)

Here again, consumers may need to contact their state Department of Insurance or Attorney General’s office for enforcement of the mental health parity law.  A recent publication on how to access mental health coverage notes that key areas of concern are financial considerations, such as co-payments, and access to care, such as a requirement to get referrals.

Woman sitting at her laptopFiling a Complaint:  Step by Step

Here are steps for consumer complaints:

  • identify the issue – raise awareness of the ability to file
  • collect information – medical bills, insurance handbook, denied claim, doctor’s note
  • check to see if the service should have been covered by the plan by checking the plan’s Summary of Benefits and Coverage
  • exhaust internal appeals – there are consumer groups that can assist with this process (see “Links for appeals/complaints contacts,” in the “Resources” section below.)
  • If necessary, file complaint with DOL, CMS, AG

Advocacy Concerns

Here’s what advocates can do to improve the process:

  1. raise awareness on the complaints process for all stakeholders, including families
  2. advocate to simplify the complaints process
  3. collect data on consumer complaints and share with policymakers
  4. identify additional areas of concern, e.g., addressing health disparities, enforcement of the mental health parity law

These tools for advocates working with families can be found in the Community Catalyst Consumer Complaints Toolkit (see “Resources,” below):

  • “Working with your DOI [Department of Insurance]: Tips for Advocates” as well as
  • “Working with your Attorney General’s Office on Parity: Tips for Advocates.”

Families of children with disabilities need to know they have the right to appeal denied claims, and, in doing so, often will be able to get the services their child needs.


Community Catalyst Consumer Complaints Toolkit:

National Disability Navigator Resource Collaborative Mental Health Parity Factsheet:

National Disability Navigator Resource Collaborative Civil Rights and Disability Discrimination Factsheet: Consumer Rights and Protections:

Centers for Medicare and Medicaid The Mental Health Parity and Addiction Equity Act:

SAMHSA (Substance Abuse and Mental Health Services Administration) Health Financing:

Links for appeals/complaints contacts

Help for consumers – appeals

State Departments of Insurance:

State Attorney General offices:

ERISA (Employee Retirement Income Security Act – private plans)

CMS (Centers for Medicaid/Medicare Services) – public plans

OCR (federal Department of Health and Human Services Office on Civil Rights) – discrimination

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