Navigating the Healthcare Minefield of Special Needs Patients

Parents caring for a special needs child are thrust into a 24/7 world providing direct care for their child, while also navigating an increasingly complex healthcare system that can sometimes seem indifferent to the special requirements for their child. Parents must constantly interact with a wide variety of individuals to ensure their loved ones get proper care. Additionally, their particular situation has its own set of unique challenges that will continue during their child’s lifetime, further frustrating parents as they try to get necessary, ongoing, sustainable support. This stress can quickly become an emotional powder keg for parents of special needs children or adults, as the parents and their child age.

Patent Care Partners’ first case is a relatively straightforward situation. It involves a 50 year old female who has cognitive difficulties from fetal alcohol syndrome. She is able to live independently and works part time. Her adoptive parents (since birth), who are in their mid 80’s, want to ensure she continues to receive the support she needs, particularly after they are gone. 

They have other adult children who, while supportive, live across the country and are busy with their own careers and families They have set up a trust for their daughter, so she is financially stable. Currently, we meet with her monthly, but are there if her needs increase. Parents are very appreciative of this ongoing support and communication with family regarding how patient is doing.

The second case involved a young boy who needed specialists for his condition, went through the proper channels for referrals, yet the parents were rejected by their insurance company multiple times. It required a significant amount of effort and patience, including navigating deliberate dead ends put up by the insurance company, but the claims were eventually approved. 

This is a very frustrating story for way too many patients today, but when you compound it with a special needs child, the stress can become unbearable.

The third, and significantly more complex case, involves an autistic child who suddenly developed a debilitating condition with his nervous system. 

If the child makes sudden movements, he can set off a reaction that can lead to a severe stroke or even death. He has already suffered one stroke. Consequently, he is in a full body brace, designed to limit movement. 

His parents are desperately trying to deal with this and communicate effectively with their son’s healthcare team. Requests for staff members to sign off on parent’s specific directives were misinterpreted. Additionally, the patient’s neurosurgeon had taken on the task of case management. 

He very much welcomed our involvement. We coached the parents on how to effectively communicate their wishes to the healthcare staff on subsequent visits and care is progressing more smoothly.

Parents are empowered to more effectively advocate for their son. Medical care is appropriately patient-centric, with parents being heard and all appropriately supported.