advocacy · parenting · politics · special needs parenting

Why Is Medicaid Such A Big Deal for People With Disabilities?

When people think of Medicaid, they think medical insurance.  Medicaid is insurance, which is important, to be sure, but it is also is so much more.

My husband works for the state, he has a good healthcare policy, so while medical expenses do add up, we have a safety net to ensure that we won’t have to succumb to the financial strain of medical bills.  Even so, I fought a huge battle to get Ben onto the Children’s Waiver program so that he could get Medicaid benefits even though our income (my husband is in law enforcement, and I make a little money here and there with writing, so we aren’t exactly rolling in it) is above the threshold for our disabled children to receive Medicaid.  Here is a list of things that Medicaid provides that we couldn’t provide in another fashion or which has been burdensome to provide.

  • Respite.  We have had friends occasionally volunteer to care for Ben, and my mom helps out as much as she can, but that said, in order to have regular breaks from caregiving, we would need to pay an adult caregiver at least $15/hour (that’s on the stingy end of the spectrum), if not more to care for Ben.  Why?  Because he’s catheterized for urine, has bowel flushes, gets meds 3x/day, and has violent outbursts that require cautious intervention.  Respite means that we can have a professional caregiver who is equipped to do those things and we can give much needed attention to our other children, and just get time to collect ourselves so that we can continue to give high level care.
  • Community Living Supports.  I have written about taking Ben out in public, it’s a crapshoot at best.  It is guaranteed that he will have minor issues, such as running off or taking things off store shelves, but there are times, about 50/50 that things are trickier and the interventions for such behaviors result in a major meltdown.  Community Living Supports will provide a trained person to help Ben learn to cope with going out and all that it entails, giving him a fuller life where he will be less isolated, especially if his behavior improves and we can take him on family outings.
  • Autism benefits.  ABA therapy, which will also help minimize Ben’s negative behaviors and maximize positives.
  • Medical copay/deductible coverage.  As I have said, we have good medical insurance, but every single year Ben maxes out his copays, deductibles, and out of network costs.  It’s thousands of dollars.  Anyone who has a typical family knows what it’s like to have a major surgery, hospitalization, or ER bill suck your savings dry.  For us, even though we plan on it, and max out our flexible spending account, we still also have enough expenses, over and above what we have set aside in our flex spend, to be a budget buster.  Every, single, year.
  • Incontinence supplies.  Ben is incontinent of bowel and bladder.  Even though we catheterize him, and flush his bowel, his incontinence is severe enough that he must wear briefs in order to avoid soiling his clothing.  This is another budget buster, and another item that Medicaid will furnish for him.
  • Psychiatric care and counseling.  As well as other mental health benefits.

This is what will benefit us.  It’s no small list.  Additionally, Medicaid pays for school therapies, and many more services that will help Ben transition to adulthood with the supports he needs.

While we have always just used Children’s Special Healthcare Services, which covers some, but not even close to all, of Ben’s medical expenses, and paid the rest, it will be an enormous relief and benefit to alleviate that financial strain and hopefully have a savings account that won’t take constant hits.  But that’s just the icing on the cake.  What we really need is the wraparound supports that Medicaid, and Medicaid alone, can provide.  It will benefit every member of our family, and maybe, just maybe, we’ll be able to breathe again.  I wonder if we remember how…

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