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I Want to Start a Movement: Go Back to Basics, Money Matters but Not Alone

I have been reading up on the hot topics about intellectual disability services lately. I have this idea that I would like to learn what is currently on the minds of the great thinkers in our field, and I would like to contribute to that dialogue.

While reading, I was struck by how much we are focused on money, choice, and compliance. I can see why, but I don’t want to find myself stuck there. Over the next few blogs, I would like to offer up some ideas and get your reactions. Let’s start this week with the first idea, money. We obviously need money to pay for services. In the US, services for people with disabilities rely almost exclusively on Medicaid as the payer, and therein lies one of our biggest challenges. While there are many ways that states can tap Medicaid dollars, we have evolved our payment system to be largely fee-for-service. If you follow what is going on with health care as a whole, you will see that that the broader healthcare field has reached the conclusion that fee-for-service systems are not working for the general population. So, just as we in the IDD world have reached almost exclusively fee-for-service, we too now are finding it doesn’t work.

I have to say I never thought it would, and now I am feeling validated – the reason is just what I predicted; fee-for-service does not give you any flexibility! You need to get an authorization for a specific service code, then you need to count each one you deliver, and back it up with notes. This whole process requires tremendous energy, training, data systems, and staff hours to track. On top of everything, there are no outcome expectations, meaning a person can go for years getting the same service and be no better off than when they started! Costs go up at least 4% under a fee-for-service system, and your revenue is likely to go down 1-3%, since the provider has so many moving parts to track, which are not compensated for in the rates.

While we focused on these fee-for-service realities, we started to spend most of our time in the field on the money. Would the state budget pass? Would rates be cut? Would Medicaid be block granted by the federal government? How do we wrestle a mega-billion dollar overhaul? Where does that leave IDD services?

When I entered the field in the late 1970’s, we were all about outcomes. I had both the freedom and the responsibility to work with individuals and their loved ones to achieve their desired outcomes. For individuals receiving 24-hour care, we talked about the skills they needed in order for them to move into homes of their own. For others who really wanted a social group, we talked about Lifesharing; you can’t really have too many people in your life who love you. When someone moved to a lower cost option, we could serve more people and we had some money left over to be creative, improve quality, try new ideas, and look for new approaches. That freedom ended when fee-for-service began. When the freedom ended, so did the conversations about outcomes. We wanted to keep that focus but we got caught up in something new: compliance. While that is a tough thing to admit, the shift of the money also shifted our conversation to preventing mistakes and keeping people absolutely safe rather than making sure we are also empowering a person’s hopes and dreams.

Next week, I will talk about the negative consequences of compliance.

Serving Together,



July 27th, 2018 I Want To Start a Movement
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