In parts I through IV, we've discussed in detail all of the struggles a low-income child with special needs can face trying to get their health care costs covered when they age out of the quite comprehensive Medicaid program called the Early and Periodic Screening , Diagnosis, and Treatment (EPSDT) program. But what we have not discussed is what those costs can actually look like they should fail, like so many do, to find the coverage they need. In short, the out-of-pocket expenses for many relatively common disabilities can absolutely cripple a young adult's ability to make ends meet.

Costs Increase Even With Coverage

To begin with, people with disabilities pay more to get through the average day than a fully -abled person even with health care coverage. One study showed that roughly half of all families supporting an insured adult with intellectual or developmental disabilities pays more than $ 5000 annually for costs not covered by their health insurance. There are a vast number of minor expenses that insurance does not cover, from the obvious (co-pays and deductibles) to the minority (transportation to and from therapy, a hired homemaker to assist with daily activities like making food.)

An Issue of Use

The simple fact is that people with special needs simply use health care services more than those without. How much more? According to a summary of several studies that took place over the last decade, low-income insured families with no children and no adults with disabilities spend approximately 2.2% of their family income on medical expenses. Low-income insured families with no children and with an adult with one or more disabilities averaged 5.6% of their income spent on medical needs – more than 2.5x more than the first group.

(And if 5.6% of your income does not seem like a huge deal to you, remember that these families typically live with near-zero wiggle room in their budgets – when your 'surplus' income after necessities and expenses numbers in the dozens of dollars per month, the difference between $ 1500 / year and $ 3750 / year is huge!)

No Coverage? You May Pay the Ultimate Price: Institutionalization

Perhaps the most dire risk faced by newly-mined adults with special needs is the risk of losing out on all of the home- and community-based services (HCBS) that the EPSDT program offers. For many of these folks, if they can not find the means to pay for their no-longer-covered home care aides out of pocket, their only remaining option is institutionalization – giving up everything they know and going to live in a full-time home for the disabled. It's an option so frightening that many young adults choose to instead live on their own knowing that their health care needs are going unmet.

Yes, Medicaid does offer a waiver that allows states to provide HCBS coverage, but the HCBS system is currently undergoing drastic changes because, while States love it's reduced costs, the Federal government has not even noted those reduced costs staggeringly high. We'll talk about the details of that situation in the next post.