Get back to living in your own home

Front view of modern residential home during early autumn season in Northwest of United States. Maple trees beginning to change leaf colors.

We’re going to make-believe for a moment.  I want you to think about your happy place – home usually comes to mind.  Whether it’s laying around on the couch eating potato chips and watching movies, or outside working in your garden, some of our fondest memories happen at home.  Home is a place where you feel most comfortable and can say or do whatever you want, whenever you want.  Did your mind drift to your happy place?  (If it didn’t, think about home until it does give you happy thoughts – don’t think about your mounds of laundry and dishes – that thought doesn’t make anyone happy.)  Now, that you’re finally in your happy place, imagine waking up in a room of cinderblock walls painted in a pale color with florescent lighting – a room that greatly resembles a hospital room, yet isn’t.  Why are you there? What happened? Where is home? Does this thought make you happy? (Most people would agree that the thought of this gives very unpleasant thoughts.  If that’s the way you feel, I think we’re on the same page, so keep reading.)

You’ve found that you’re in this unknown place and you know no one around you.  You aimlessly walk the halls looking for someone who can give you the answers you are looking for – where am I? How did I get here? How do I get out of here?  You find a kind woman with a name badge and ask her these questions.  She tells you you’re in the nursing home because you had a stroke (insert any health condition of your choosing) and unfortunately, you’re unable to return home because there isn’t anyone at home to help you.

Now, at this point you may be thinking, “this could/would never happen.”  The sad reality is that this does in fact happen and happens far more than most people realize.  Never for one second believe this couldn’t be your life.  Know that this story is not make-believe at all.  This is an actual person that this has happened to.

This is where the Olmstead Decision becomes a critical part of this “story”.  In 1999, a lawsuit was filed in the State of Georgia (Olmstead v. LC).  The Supreme Court held that individuals with disabilities have the right to receive state-funded supports and services in the community rather than in institutions.  In addition the Americans with Disabilities Act (ADA) fundamentally changed the landscape of forced institutionalizations with a clause which states, “Goods, services, facilities, privileges, advantages, and accommodations shall be afforded to an individual with a disability in the most integrated setting appropriate to the needs of the individual.” (

Between the ADA and the Olmstead Decision, opportunities have greatly expanded allowing individuals with disabilities the opportunity and fundamental right to receive services in their home rather than in an institutional setting such as a nursing facility where individuals with disabilities are essentially segregated from society.  The purpose of this entire blog is to point out that these opportunities and rights are being revoked in the State of Missouri.  Lawmakers are reducing some community-based services by up to 40% for individuals.  It’s time to use your imagination again…

Imagine you have a significant disability and require assistance to get out of bed in the morning, get dressed, bathe, cook your meals, etc.  You have a choice:

  • You can go into a nursing home where unfamiliar aides can get you up, dressed, feed you whatever is on the menu for that day and decide if or when you are going to take a bath that day
  • You can stay in your own home, hire someone who you know and trust to provide that assistance and decide what you want for breakfast, lunch, and dinner and when you are going to bathe

I can’t imagine that too many people would choose option #1 and if you truly believe you would, you can stop reading any further.  But if you choose option #2, read on to better understand the dilemma in the State of Missouri.

In Missouri, qualifying Medicaid (MO HealthNet) recipients can move into the nursing home and Medicaid is willing to pay $3,318.46 per month for your care.  In theory and according to Olmstead and the ADA, Missouri Medicaid should also be willing to an amount EQUAL to that for home care services (remember Option #2?).  But Missouri is only willing to pay UP TO 60% of the total cost of the nursing home for an individual to receive home care services in their own home.  Yes, that’s right – Medicaid will pay $3,318.46 for a nursing home bed for each month, but will only pay $1,991.07 to keep you out of a nursing home.  Take a moment to let that sink in…

So, if an individual needs home care services in excess of $1,991.07, their ONLY OPTION is moving to a nursing home to receive that care?! Yep! Of course, there are a few waivers out there if you happen to qualify and IF they are available.  But the greater majority of individuals would be forced into a nursing home if the cost of their care is greater than $1,991.07.  Trust me, I’m scratching my head over this too.  If the Show-Me State is willing to pay $3,318.46 for nursing home care, why wouldn’t they also be willing to pay the same for home and community-based services?  Institutionalization is an ARCHAIC method of disability segregation and it’s time to end it here in Missouri.  It’s time for our lawmakers to “Show-Me” they are serious about inclusion, acceptance, and diversity.


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