Fragmented Care in America

Just because the elephant is in the room... .

Not that long ago, back in 2004, when Butterfly Effects was first launched, the issue of fragmented care was talked about like one talks about stormy weather or earthquakes. An admittedly serious problem: inevitable, scarcely predictable, and beyond the reach of society's wisdom and ability to address.

It was that fragmentation that frustrated Charlotte Fudge (photo right) well before she became Butterfly Effects founder and CEO. Working both as a case manager and supports provider, she took special notice of how disjointed services compromised the ability of families to care for children with autism.

She saw how providers in various disciplines, despite their best intentions, had no systematic vehicle with which to share information among them or even with their clients. With limited access to funding, those providers were forced to compete with one another rather than work cooperatively. Furthermore, advances in the field fueled by cutting-edge research seemed to be outdistancing the providers' capacity to make use of them. This proved an especially onerous concern in the continually emerging field of autism therapy where real solutions were sorely needed.

Forced by rules, funding problems, or circumstances to change providers, clients would see treatment plans fall to the wayside as they made countless groundhog day trips back to square one.
Once fragmentation was identified as the culprit, Mrs. Fudge began to see its frightening consequences thwarting efforts to provide toddlers, children, and adults with the support they needed to manage and overcome pervasive disabilities. She saw how the lack of an integrative approach was keeping countless individuals from receiving the kinds of services that could dramatically improve their lives.

That's when she decided it was time to do something.
Whether you believe that Obama's Affordable Care Act goes too far or not nearly far enough, it has put a finger on the two primary problems with American healthcare.
The problem of accessibility is the issue that gets most of the play in the press, but the legislation also recognizes that healthcare fragmentation may well be the deeper-rooted problem.

It is a lack of coordination of services and communication communication among service providers that results in so many unfortunate and even tragic outcomes. By feeding the furnace of inefficiency, fragmented services burn up much of our healthcare resources, which leads to the soaring prices that leave the poor and the medically challenged without access to healthcare they can afford.

Whether fragmented care is an unfortunate by-product of poor planning, or a consequence of opportunistic greed, it is indeed the elephant in the room -- either too big and complex for reformers to tackle, and / or too hugely profitable for special interests to give up. Look at policy reports coming out of Harvard Law, the Heritage Foundation, or dozens of other think tanks; examine studies performed by economists, physicians, or health care administrators; they all point to fragmentation in health care delivery as the primary structural source of economic waste, inefficient care, and immeasurable suffering.
Charlotte Fudge and the staff at Butterfly Effects have always understood that they can't solve this challenging problem by themselves, but they also recognize that every health organization dedicated to doing no harm has a social responsibility to do what it can to integrate services for the good of clients and their families. In other words, they needed to do something

In the field of behavioral health, fragmented care often means that:

• Services are disrupted due to funding complexities or changes in status.
• Services are duplicated or left undone due to fractured record keeping, bureaucratic regulations, and the frustration of administrators that leads to what people see as organizational indifference.
• Clients have to make choices between treatment A and B, when the best solution is a combination of A and B.  

Specifically, fragmented services can result in an over-reliance on pharmaceutical interventions rather than an integrated approach using various therapies. It can also make it very difficult to access cutting-edge and alternative approaches, which then leaves many clients making use of best-advertised treatments rather than ones supported by the best evidence.

The greatest tragedy of all: those who fall between the cracks
This is an inevitable result when responsibility is passed about like the proverbial hot potato. "For children with autism, this is especially tragic," Mrs. Fudge notes. "What we now know conclusively about autism is that the most effective way to improve a child's outcome is early intervention."

Yet, in a number of states, even with as much as we now know about early intervention, as few as one in five children are screened for developmental challenges and even fewer are connected with early prevention services. Cuts in funding is a culprit, but this is also happening in some areas where funding is available.

"Our goal is to keep children from being excluded from help or having a huge delay in services," says Mrs. Fudge. "For young children the window of opportunity to affect dramatic change isn't all that big."

With and abundance of research testifying to the need to act quickly, the federal government has come to realize the importance of early intervention. For several years, it has encouraged states through early intervention matching grants. These are designed to provide young children with immediate services as soon as they evidence any delays in speech or cognitive functioning, even if the children don't yet have a formal diagnosis. The need state matching funds have been threatened time and again by state legislators wanting to prove their fiscal resolve, but until this year have managed to be approved, But this year, even the littlest children aren't safe. A lack of understanding about what the funding does, coupled with draconian budget cuts threatens to place much of this money in peril. (Read about the Early Steps funding crisis in Florida) The federal grant for a year is frozen at $500 million although all of it from last year was not spent, For perspective, we can compare that to the cost of a day of  the war in Irag at $720 million.

Sometimes ability and desire just aren't enough.
"As scientists and therapists, we have the understanding and the knowledge needed to help these children, and as a society, as a village of parents we have the empathy and the will to give them the best opportunity possible," says Mrs. Fudge. " Now we just need to coordinate our ability with our desire and match those with the resources to make it happen."

Since 2004, Charlotte Fudge has not just made that argument but has walked the talk; and she  recruited others to make it with her, with the understanding that complaining is just meaningless whining without the offering of a solution. Butterfly Effects is that solution.

Combining the skill of talented clinicians, the use of modern communication technology, and a desire to make the system work for clients, she and her peers began building a network dedicated to:

• Collaboration across disciplines
• Coordination of needed services
• Stakeholder involvement
• Employment of the  most recent evidence-supported approaches

Tired of dealing with systems that were often more adversarial than supportive, families of children with autism and other challenges immediately welcomed Butterfly Effects. This allowed Mrs Fudge's  agency to achieve a unique level of success - first in Southeast Florida, then across the Sunshine state, and now across the nation and even internationally.

Having expanded from a handful of dedicated professionals, the Butterfly Effects network now employs the skills of more than 300 clinicians, therapists, doctors, and educators, It's the kind of dramatic growth that can only happen when a real need is being served.

Watch for  part 2, which lays out the Butterfly Effects Principles of Coordinated Care.

Until then, read about Butterfly Effects' case coordination services.

Photo courtesy of Eliza Gutierrez and the Palm Beach Post, originally published Sept 2008