The purpose of this petition is to gain the attention of Florida legislators and try to bring about change to the policies of Medicaid and the waiver programs offered for children with special medical needs. These medical needs can range from Autism and Down Syndrome to children who are immunocompromised, have cancer or the hundreds of other severe diagnosis that exist. There are major flaws to the eligibility requirements that are costing children their insurance. One main reason medicaid is important to families with these wonderful children is private insurance is unavailable to them. Almost all private insurance companies, wether they’re through an employer or purchased directly, consider these children to have pre-existing conditions and will not accept them as patients. If they do have a plan for these kids the premiums are outrageously expensive to the point that parents can not afford it.

In 24 states the Katie Beckett waiver has been enacted in some form. Most of these 24 states put a limit on the number of patients accepted onto the waiver at any given time. This limit creates a waitlist that, in some states, is almost 10 years long. Florida has a modified version of the Katie Beckett waiver called iBudget. The iBudget waiver has a cap of roughly 41,000 people and a waitlist close to 22,000. Those closest to being added to the waiver have been waiting just shy of 10 years. Both the Katie Beckett and iBudget waiver do not count household income as an eligibility requirement. This is a true needs based waiver when all other forms of Medicaid are income based. Medical trauma is not prejudice. It does not seek out the low-income families only.

My daughter suffered a traumatic brain injury prior to birth causing her to be born 3 months early. She will forever be medically complex and immunocompromised. Why does her health and our ability to care for her need to suffer because my income is more than 200% of the federal poverty line? To put that into perspective 200% of the FPL is only $53,016 for a family of four. Even if I made $500k a year it wouldn’t be enough to pay for all of her doctors, specialists, home equipment or hospitalizations. From birth to age 3 Medicaid spent almost $3 million on her.

My wife and I believe that it takes the unaffected person to make the change for those that are affected. I am asking you, wether you know someone with a disability or not, to please sign this petition. Call or email your Florida representatives and governor and demand they rewrite their health insurance policies, remove the income limit for children with developmental delays, and remove the limit to how many children can be accepted onto the iBudget waiver.

In today’s political environment we are more focused on human rights than ever before. The rights, and lives, of all children with childhood disabilities and medical complexities are depending on you to see them, love them and advocate for them. They can’t all do it themselves. Their parents need your help. I need your help.

The following links are to websites with the data that is referenced above.

Florida Healthy Kids income requirements

Florida Medicaid waiver programs

Katie Beckett waiver for the state of Georgia