In Florida, people are quitting their jobs to get insurance
“Maybe if you quit your job, you could qualify for Medicaid, and get the full benefits.”
My wife and I live in Tampa after growing up in Seattle, and have had multiple sons with medical issues. Ezra, our first born, was diagnosed with neuroblastoma cancer in 2010, and died in 2011. He was an incredible boy. His brothers Price and Charley were twins, and born very premature at 26 weeks. Price lived only a week.
Charley is a vibrant 5 year old who has his own medical battles to fight from being born so early and spending 7 months in the NICU. He has cerebral palsy, which for Charley means some of his muscles get really tight. He has physical and occupational therapy to train his body how to move. He wears leg braces to help him walk, and has a G-tube which he gets his food through — some by mouth, but most of his food is formula which a pump gives directly into his stomach.
We seem to be prime candidates for dealing with insurance issues. When Ezra was diagnosed with cancer in 2009, we learned through the help of great social workers the insurance system is a mess. When Price and Charley were born, in March of 2010, “Obamacare” hadn’t yet been approved, and the fact the twins were born so premature meant (according to insurance) they were “disabled” (anyone born under 2lb was considered disabled, a “pre-existing condition,” and couldn’t qualify for insurance). Which meant they didn’t qualify for private insurance, and Medicaid was our only option.
Medicaid brought it’s own suite of issues. Many doctors / practices wouldn’t take them, and still others had once a month or every other month “Medicaid days” where they would set aside a single day to focus on patients with Medicaid, ignoring them the rest of the time. Still, Medicaid has paid for Charley’s entire treatment, and for that we’re grateful.
But the system is a mess. Florida actually has a great program called Florida KidCare, which was reauthorized in 2009, and essentially says kids under 19 must have access to insurance in Florida. Once you get into the details it starts getting intense. The Department of Children and Families decides if you’re eligible for Medicaid or not (income-based). If you are, that’s what you get. If you aren’t, The Agency for Health Care Administration sets up MediKids — a state-subsidized low-cost insurance plan — for kids age 1–4. For kids age 5–18, The Florida Healthy Kids Corporation handles your insurance through the government-funded HealthyKids program. But, if your child is special needs, like Charley is, The Department of Health administers CMS, yet another program geared toward special needs. Oh, but guess what? If your income is over double the Federal Poverty Level ($24,250 for a family of 4, so if your household makes more than $48,500 annually), you can’t qualify for CMS, period. Also past 4 years old you’re excluded. So you go back to one of the other two.
Confused yet? Us too.
It gets worse. Within those various programs like MedKids, HealthyKids, and CMS, are organizational providers who actually handle the insurance. So, for instance, Sunshine Health could be your designated insurance provider within HealthyKids. Or Staywell Kids (which is actually Wellcare). And over these past 6 years, both Ezra’s and Charley’s insurance changed multiple times. Reasons were never clearly given — a letter would show up in the mail notifying us of changes, and within a month or two (often less), we’d have a new insurance provider. Mind you — usually nothing changed on our end to cause these changes.
We had Medicaid for years with Charley and Ezra, then suddenly one day were told we no longer qualified for Charley due to our income being higher than double the poverty level (our income had not gone up since we started on Medicaid).
And nearly every time we’d get a new provider, all our services would stop for a week to a month while new providers needed to get authorizations. (This is more straining than you may imagine — remember Charley’s 4x week therapies are included in that, his feed supplies, and many weekly needs.) Our medical information would need to be consolidated and transferred to the new provider. Our services would alter slightly, or we would have to change to a new provider if the new insurance didn’t pay our current providers. New companies would then need to re-learn Charley and get back “up to speed” with his treatments. For therapists, this could take a month.
This month, we received a letter from Independent Living (which provides Charley’s in-home therapies — physical, occupational, and speech):
Dear Parent/Guardian,
Independent Living, Inc.- Pediatrics was recently informed that your child’s insurance plan, Healthy Kids, is making some changes that will affect their therapy. We are no longer allowed to provide home visits effective 11/1/15 and your child must be seen in one of our outpatient clinics. We have four locations for you to choose from: Citrus Park, Wesley Chapel, Central Tampa, St. Petersburg and can be seen in their daycares. We understand that this may be inconvenient for some parents and we will attempt to accommodate your schedule in every way possible.
Another change that Healthy Kids is imposing is a limitation of 60 days of therapy unless there is a diagnosis change. Some children have more than one diagnosis and we will try and use a different diagnosis every 60 days in order to lengthen their duration of treatment if therapy is still recommended after 60 days. If your child will most likely require more than 60 days of therapy, we are recommending that you contact Children’s Medical Services and attempt to be accepted onto their plan, or choose another insurance provider. The Marketplace (Obamacare) open enrollment period is from 11/1/15–12/15/15 for people who want to change their insurance plans or obtain new plans for 2016.
Then, we were told Sunshine Health, the provider which we were recently pushed over to, would not be paying Independent Living at all, and we would need to find a new therapy provider. BUT, only from Nov 1st through Dec 31st. As of Jan 1st 2016, they would pay them again. This is the type of confusing thing that happens every few months. Robyn once spent 22 hours in a single week on the phone trying to make sure Charley’s recent change (at that time) didn’t stop his feed supplies from being delivered. This is excessive for us, but 5–10 hours a week is normal. And each person we speak to is 100% sure someone else is responsible, on and on and on. For years.
Were we to qualify for Medicaid again (we don’t currently, due to income), we’d have all of this covered. All the families that get Medicaid (paying zero — 20 dollars a month for health insurance) are getting hour-long therapy sessions, while we pay $300 a month for Charley’s insurance and are getting 30 minute sessions with a co-pay.
I don’t mean to say $300/mo for Charley is excessive. It’s probably more than you pay for one of your kids’ monthly insurance (I’m actually unsure on that — care to share?), but he has a lot of needs and if $300/mo covers them, wow, we’re pleased. The problem we have is all this nightmare that surrounds it — constant changing and removing of services, support who has no clue what’s going on or how to help when issues do come up, 5-10 hours a week of Robyn’s time to make sure services are continuing, and more.
We are told by the providers that some families quit their jobs so they can get Medicaid and get the services their kids with special needs deserve. This certainly isn’t making Florida’s economy any better. At first, we thought it was a joke from the provider, until in a waiting room just this month the lady next to Robyn confessed:
I quit my job and moved in with my parents, and now we have full benefits and get a check from Social Security each month!
I suppose if the difference were a matter of a few hundred dollars a month, quitting one’s job and removing all this hassle would make perfect sense. This is a ridiculous option, but evidently one people are being forced to make. And one providers are actually suggesting to frustrated patients or advocates like ourselves as a solution.
Major change needs to happen to the healthcare system. We all know it, and we have all been saying it for years, and it’s a big ship to turn. Systems need to be built to improve inter-agency communication. Government agencies need to be consolidated, or at least the responsibilities granted to each. As a patient advocate (as the parents of our son), navigating these systems is nearly a full time job, and is discouraging and difficult. Often, families do give up, and kids lose services they need, because it’s so hard to work within the system, or understand it. We are years into this, and still unsure often — there are such frequent changes, once you learn one thing it’s changed.
Much of this is true on the federal level as well, although our experience is in the state of Florida. Through Because of Ezra and our work with hospitals around the country, we get intimate looks inside the workings of the healthcare system all over the US. There needs to be less ambiguity involved. We have to define a central source, or at the very least a standardized format, for our records. Switching healthcare providers (such as an occupational therapist) should be as easy as us authorizing the information to be shared, and one organization sending a file or granting access to the other. It should take a minute or two to initiate, less than that to receive, and a day or less for the human involved to verify (if that’s even necessary).
In the meantime, we keep soldiering on.
