Supporting Equitable Access to Mental Health Services for People with Developmental Disabilities

If you think you broke your arm, would you be surprised to find that the x-ray would only be covered by your insurance if the bone was actually broken? If you needed surgery, would it feel unfair if insurance refused to pay because the surgeon used one brand of equipment instead of another? Would you be frustrated if your broken arm was eligible for physical therapy if you broke it in a car accident, but not if it was the result of a congenital condition? 

These situations are almost impossible to imagine for physical health conditions like a broken bone, but are all too common when families pursue behavioral health services for their child. In particular, families of children with developmental disabilities often face many barriers to equitable and affordable health care. In some locations and under some insurance plans, specific diagnostic tests are required to determine a diagnosis or authorize treatment despite tremendous wait times for specialists, pandemic barriers to valid test administration, and a wealth of evidence indicating other measures/processes are equally valid. Further, many insurers only cover certain treatments (e.g., applied behavior analysis) for children with a specific diagnosis (e.g, autism spectrum disorder) even though research suggests these treatments can help many children (such as those with intellectual disability or Down syndrome).

Image has a blue circle in the background with a white lightbulb with yellow base. Black bold Text reads: Mental Health Parity is the push for equal application of medical and mental health insurance benefits

Parity Between Physical and Mental Health Insurance Coverage

If research shows the benefits of timely diagnosis and intervention, what can be done to support families and consumers to better access available services? Mental health parity is the push for equal implementation of medical and mental health insurance benefits. As part of his Unity Agenda, President Biden recently prioritized efforts to expand and strengthen mental health parity, calling for health plans to cover behavioral health services at the same level as physical health services. Insurance plans covered by the Mental Health Parity and Addiction Equity Act (MHPAEA) passed in 2008 are required to fund both mental and physical health benefits the same way. This includes equal copays and out of pocket expenses, the same number of visits (and limitations) for behavioral health and medical care, and mandates that behavioral health care benefits cannot be more restrictive than medical benefits.

Despite the push for mental health parity, the federal, state, regional, and payer-specific limitations continue to create situations where access to evidence-based care is frequently delayed or disrupted, especially for individuals from racial and ethnic minority families, low socioeconomic backgrounds, and rural/medically underserved areas. So how do parents and professionals identify and address MHPAEA violations to improve access to care? Although not automatic indicators of inequity or violation of applicable law, concerning practices include: 

  • Limits to the number of outpatient or inpatient mental health visits per year or if the number of visits is considered objectively low
  • Deductible or out of pocket max is only related to mental health (vs. medical) care
  • Behavioral health exclusions/limitations that are more stringent that medical standards
  • Requiring a “step therapy” approach (e.g., first failing a lower level of treatment/care before accessing a more intensive service) for mental health services

What to do if you suspect a mental health parity violation

Practical tips for families

If you receive a service denial, make sure to alert your provider team so that they can work with you on response options. These may include:

  • File an appeal with your health insurance. The Council of Autism Service Providers (CASP) has a resource guide. At a minimum, your (written) appeal should include:
    • name/address/phone number
    • Insurance ID/group number, relevant claim or document number
    • Provider’s name, date of service(s)
    • Description of service(s)
    • Copy of the plan’s adverse benefit determination
    • Evidence of why service should be covered
  • Request MHPAEA Comparison of Benefits (which explains the medical surgical vs. mental health benefits) from your insurer/health plan
  • Contact your state or regional advocacy partners
    • CASP will make referral to specific consumer advocacy resources
  • Submit a complaint about coverage denial or treatment limitation

Practical tips for providers:

It can feel daunting to understand the appeals process (and find time in the midst of a busy clinical schedule). Consider tapping colleagues and professional groups for sample letters and advice, and save your own work to share with others.

  • When writing appeals, provide evidence/arguments regarding why the insurer judgment is incorrect/based on inappropriate criteria. Consider challenging whether the plan’s criteria is widely accepted best practice. 
  • Support the appeal with a letter of medical necessity, history of conditions and treatment, treatment records, address clinical criteria, and leverage MHPAEA language. When writing a letter of medical necessity, include:
    • Your treatment history with the patient
    • An explanation that other treatment courses were attempted before the treatment in question was pursued (if appropriate)
    • Your professional clinical judgment (including clinical evidence) as to why the patient needs the treatment in question, including the patient’s (lack of) progress since the denial occurred (if you are still working with them)
    • Emphasize your clinical/professional relationship with the patient. Demonstrate your expertise related to treatment recommendations compared to the insurance reviewer
  • Be mindful of timelines for peer-to-peer reviews and appeals.

It is important to be active in the advocacy process to ensure that patients and their families can access care that they have the right to receive. Overcoming a service denial directly helps an individual family, but also helps push back on entire systems so that services will be more accessible for everyone over time. Clinical providers who support youth with autism and other neurodevelopmental disabilities are also encouraged to complete the Services Parity for Autism and Neurodevelopment (SPAN) survey, which seeks to understand the most frequent and problematic barriers to mental health parity. Results from this ongoing nationwide survey will be used to support future advocacy and educational efforts. 

Authors:

Rebecca W. Lieb, PhD, ABPP, is a board certified child and adolescent clinical psychologist in the Department of Neuropsychology at Kennedy Krieger Institute in Baltimore, Maryland. She conducts comprehensive evaluations for children with developmental disabilities including Autism Spectrum Disorder. Prior to transitioning to Kennedy Krieger, she was the director of the interdisciplinary Autism Diagnostic Clinic at Akron Children’s Hospital in Akron, Ohio.

Rebecca McNally Keehn, PhD, HSPP, is an Assistant Professor and clinical psychologist at Indiana University School of Medicine where her work is focused on improving access to evidence-based services for children with autism spectrum disorder (ASD). She is the Co-Director of Indiana’s Early Autism Evaluation Hub System, a statewide network focused on lowering the age of diagnosis and improving access to diagnostic and intervention services for toddlers at risk for ASD.

Cy B. Nadler, PhD, is a clinical psychologist and Director of Autism Services at Children’s Mercy Kansas City. In addition to providing clinical services, he conducts research on the health and behavioral outcomes for youth with developmental differences and mental health conditions. He serves as a member of the Missouri Commission on Autism Spectrum Disorders and Missouri Alliance for Dual Diagnosis.

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