Perkins School for the Blind Transition Center

Navigating Medical Decision-Making and Insurance for Autistic Children in Divorced Families

Managing the care and needs of a child on the autism spectrum can be a full-time job. In addition to addressing the day-to-day care, educational, and behavioral needs of an autistic child, managing the therapeutic and medical visits can be quite involved, including such challenges as scheduling and getting to the visits, finding the right professionals, coordinating insurance approval and reimbursements, and easing the anxiety of a child at the medical visits.

Healthcare provider in front of a judge's gavel for medical decision-making

So, how are these tasks handled when parents are divorced? Some possible options will be presented in this article.

If the parents are getting along well, then the medical decision-making and handling of issues becomes easier. If, during the divorce, one parent was given the authority to have the final say in medical decision-making, the medical needs of the child could be addressed more quickly and with less conflict. This type of agreement can occur when one parent has been more involved in the day-to-day caregiving role and is more familiar with the medical needs and professionals involved in supporting the child. This is not to say the other parent is not involved, as agreements can state the other parent should be consulted regarding medical treatments, and their input should be considered in making decisions.

When both parents are or wish to be equally involved, medical decision-making may be shared 50/50. However, one or more individuals would need to be assigned to be potential tie-breakers in case the parents cannot come to an agreement. This could be different people, depending on the type of expertise needed for a particular medical. The assigned person would likely need to be identified and have agreed to take on this role. Being required to wait on a third party to make a decision when parties cannot agree on what is in the best interest of the child may potentially cause a delay, which may be an issue in an urgent medical matter.

In high-conflict divorce situations, medical decision-making authority can be a cause of friction and prolonged and expensive legal battles. Ideally, divorcing or divorced parents should put the needs of the child first rather than fight over who gets to make the decision. Perhaps each parent can have different medical decision-making authority or discuss how they can come to an agreement. Sometimes, neutral third parties such as mediators or parenting coordinators can assist parents in coming up with solutions that would be acceptable to all involved.

Sometimes, transparency and information sharing can alleviate many concerns that divorced couples may have. It is recommended that both parents have access to important medical and caregiving information in case of emergencies, but also for day-to-day routines and care. Ideally, this can be in a hard copy or electronic format that each parent can access. There are apps where information can be shared and viewed by each parent, as well as other professionals or caregivers who might need the information to support the child or parents.

Insurance coverage and administration are areas that also need to be addressed when parents are divorced. Usually, one parent is required to provide medical insurance coverage for the child. However, the person handling the paperwork aspects, such as getting insurance approvals and submitting claims, can be the other parent. So, it helps for both parents to have permission to speak to and have access to the medical professionals and insurance companies on behalf of the child. Some private health insurance companies allow a child to be covered past age 26, the usual cut-off age for dependents on their parents’ insurance. Parents should reach out to their HR or benefits department or contact their insurance company to inquire about the form to complete to extend insurance coverage for a child with a disability prior to the child turning 26 years old.

When a child on the spectrum may become eligible for Medicaid, the family can choose to keep both the private insurance and have Medicaid as the secondary health insurance. Some states allow for families of Medicaid recipients to participate in the Health Insurance Premium Payment (HIPP) Program, which provides reimbursement for private health insurance. There is an application and approval process since it must be deemed cost-effective by the HIPP program of their state to be approved.

Some parents may choose not to have private health insurance and instead just rely on Medicaid for health coverage. However, not all medical professionals and providers may accept Medicaid, so it is important to research the options prior to deciding to cancel private health insurance, which may offer more flexibility in finding or maintaining providers of their choice.

This article was written from the perspective of a Certified Special Needs Divorce Coach to share some best practices and ideas to consider, but it is not intended to provide legal advice. Parents should consult with professionals and specialists regarding the laws and programs in their state. Regardless of where divorced parents and the child may live, finding ways to work together to address the child’s healthcare needs is the goal.

Mary Ann Hughes, MBA, is a Certified Special Needs Divorce Coach, Mediator, Parenting Coordinator, and Founder of Special Family Transitions LLC. For more information and resources on special needs divorce or transitions, please visit SpecialFamilyTransitions.com and follow on Facebook, Instagram, YouTube, and LinkedIn.You can also reach Mary Ann at maryann@specialfamilytransitions.com.

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