As a heart-driven educator and single mother to a non-verbal child diagnosed with severe autism + global developmental delays at age 2, I understand first-hand the trials of navigating our health care system. Like many others in Central Florida, my income is deemed "too high" for federal and state programs designed for children with special needs, leaving my daughter without essential services. As of Aug 1st 2024, my daughter will still be considered as disabled by Social Security, but will no longer receive the medicaid benefits that cover her ABA services due to my teacher salary that pays for our necessities.

Florida is 1 of 13 states who have yet to include an "Essential Health Benefits" package to the marketplace plans (Autism Speaks, 2022). The Essential Health Benefits is a package that allows coverage for essential services, such as ABA therapy. This leaves employer-insurance and medicaid as the ONLY two options for Florida families of children with disabilities. For those who do not have an employer that covers these services in their area, parents are left to make the choice between making enough money to pay for housing or making a low enough amount to qualify for medicaid so that their child can receive services. 

The reality is that while my gross income may exceed those federal and state income limits, the financial strain of providing the necessary care for my child is enormous. My daughter medically qualifies for CMS and SSDI because of her disability and how it impacts her daily life, but my income as a teacher makes her ineligible for these programs that support her needs. The federal Kidcare program is another healthcare option, but the full pay plan does not cover any ABA services. My choice to become a teacher and work enough to provide the necessities for my daughter should not be barrier that prohibits her from receiving necessary services. 

As teachers, we often emphasize the importance of early intervention...but because I am paid a teacher salary, I can't get those services for my own child. Why does it work that way? If I was unemployed, my daughter would have the 1:1 ABA services that she NEEDS to improve in areas that drastically impact her quality of life. Her ABA therapy not only assists her in meeting milestones and goals but also provides me with valuable strategies to manage and reduce her behaviors. This support has been vital in helping me address and work through her challenging and self-injurious behaviors effectively.

According to the Catalyst Center, nearly 1 in 5 households across the nation have a child with special health care needs, and roughly 20% of these households are like mine – above the income threshold to qualify for any support programs. Despite contributing to society through our hard work, we are denied assistance due to outdated and unfair income-based parameters. This results in a devastating gap in accessible and affordable care for children like Aaliyah who rely upon these services for their growth, development, and wellbeing. 

It's time to redefine these outdated systems and work towards building more equitable healthcare options for special needs families, regardless our job titles or annual salaries. We call on our representatives, both at the state and federal level, to make a change to this struggling system and create a more inclusive framework that supports the hardworking families raising children with special health care needs. 

If hearing that the only income waiver for children with disabilities in FL has an average waitlist time of 8-10 years does not express the need for change, I do not know what does. Please stand with me to demand more accessible healthcare options for the working special needs families in Florida. Signing this waiver can help to create a future where healthcare is a right, not a reward. Let's make a change for myself and other families in similar situations!! 

Sincerely,

Kathleen Egan