Our colleagues in North Carolina did an exceptional job this week summarizing and articulating the issues and concerns involving managed care models for individuals with intellectual and developmental disabilities. Below is a summary of what was said and her testimony:

On Wednesday, January 15th, the Medicaid Reform Advisory Committee met to hold its second of three meetings. This advisory committee was formed to address three objectives that were mandated by the legislature:

Create a predictable and sustainable Medicaid program for NC taxpayers

Provide care for the whole person by uniting physical and behavioral health care

Increase administrative ease and efficiency for NC Medicaid providers.
The agenda for the meeting included a welcome to the public from Secretary of DHHS Aldona Wos followed by a presentation on Medicaid spending trends. The bulk of the meeting was dedicated to public comment from a variety of stakeholders who either work with or are served by Medicaid in NC. The Arc of North Carolina’s Interim Executive Director , Lisa Poteat, participated in this public comment period and presented the members of this committee with our managed care principles and an “on the ground” perspective of the challenge our community is currently facing.

You can read her testimony here:

In today’s service system for people with intellectual and developmental disabilities, we have all grown accustomed to hearing this familiar refrain: the “right” service for the “right” person in the “right” place at the “right” time for the “right” price. It’s a worthy goal, but a far cry from what’s on the ground. If the goal is really to achieve so many “rights,” then why do we see so many “wrongs” in the system? Could it be that managed care is the wrong system for people with IDD at the wrong time in the wrong place and for the wrong price? Certainly we must manage costs, but at what price?

We stand, and sit in the midst of a very fragile system today in NC, designed to support some of the most fragile citizens in our state. Specifically the LME/MCO system and its provider network has been dismantled and reincarnated under managed care. It is a system still in its infancy, still evolving, and weakened by a lack of accountability and a lack of standardization. It is fraught with inconsistencies.

There are differences between MCOs in benefit packages, service arrays and the amounts of service available – these should be consistent whether a person lives in Wilmington or Asheville

Services are cut for people with IDD even when their needs haven’t changed. Monday on the front page of the Wilmington Star News there was a story about a woman who had lived in a group home for 14 years, and her services were suddenly cut by utilization management, while her needs remained the same. Her family had to engage their legislator to advocate for her services to be reinstated.

There are inconsistent rates for the same services, yet those services all share the same service definitions and requirements.

There are inconsistent uses of b3 and state dollars. Some MCOs manage these funding streams better than others. Yet in some places if you need a group home placement and you don’t have the Innovations waiver funding, you are stuck, even when there are multiple openings in group homes in your area.

The system also lacks the person-centered thinking, planning, and implementation of services that we in NC worked hard to develop over the past 20 years. In managed care we have lost that in most areas, and we are rapidly moving toward an antiquated medical model as if there were a huge magnet at the end of this vortex, as if there were something “wrong” with people with IDD and we could “fix” them. People with IDD don’t need fixing, they don’t recover from their disability. They need long-term supports and services designed through a person-centered approach.

We must refocus in this system on the whole person. There are instructive examples of people with IDD living fairly independently in the community right now who are beginning to fail because of service cuts. For a few dollars a year we can support these folks in living independently, participating in community groups and events, holding down a job and living as a contributing member of our society. But with today’s service cuts, we’re instead seeing loss of jobs, loss of transportation, loss of involvement in groups and activities. We’re seeing people staying at home, dealing with depression and increased stress, having old behavior issues return, fighting with their roommate, eating more, gaining weight, and becoming more and more unhealthy in every way. What price will we pay as these folks head into crises that will cost the LME/MCO much more than the few dollars a year it would have taken to keep them stable and supported in the community? This is the wrong way to manage care, and there are people at every point along the disability continuum who are not receiving the supports and services they need.

If we are to hold on to the LME/MCO model, then we must standardize many processes and systems, including IT systems. We must create some accountability for the managed care organizations. We know that accountability has to be based on cost containment and efficiencies, but what about real outcomes for the people we are serving – how about how many people achieved their best possible health, or began employment, or moved into a more independent living arrangement of their choice, or maintained the skills they worked so hard to acquire? How about real outcomes for real people with real success. There’s a lot less “wrong” with that, and it’s a much better way to spend taxpayer dollars.