I’m packing my shades and heading to Florida this week for a first-of-its-kind summit for executives of organizations that serve people with intellectual and developmental disabilities, or I/DD. It’s good timing. While charged to provide a diverse array of individualized services to people with lifelong conditions, I/DD providers, along with others in the industry, are being challenged by waves of regulatory change, evolving reimbursement models, managed care mandates, and other value-based health care shifts. As evidence mounts for the importance of collaboration across acute, post-acute, and long-term services and supports (LTSS) settings, legislators, payers, health systems, and other weighty industry players are pressuring LTSS organizations – including I/DD providers – to grab their boards and hit the surf. Unfortunately, the reality is that many of them have never even been to the beach.
The I/DD population is complex and challenging to fit into a value-based care system. The daily habilitation programs, living assistance, residential support, vocational training, counseling, nursing, and other home and community-based services delivered by I/DD providers constitute an open-ended service relationship that advances personal wellness and quality of life. This is a very different model from episodic clinical care, and entails a broad scope of value opportunities.
• Cost: Through a confluence of social, behavioral, and physical factors, people with I/DD drive a high cost burden on the health system. Approximately two-thirds of people with I/DD have two or more co-morbid health conditions; over 40 percent have more than four. Adults with I/DD have roughly one and a half to three times the incidence of congestive heart failure, COPD, diabetes, and psychiatric conditions than adults without I/DD; visit the emergency room 50 percent more frequently; and are almost twice as likely to be hospitalized (their readmission rates have been estimated as high as 69 percent).
• Quality: For people with I/DD, quality isn’t necessarily measured in recovery days or improvement rates. The central quality question for many is whether the services being provided are helping the person make progress toward outcomes they value. Quality in I/DD can be unique to the individual, and maximizing it takes an understanding of a person’s history, desires, complicating factors, and other life dynamics.
• Experience: People with disabilities – and the family, friends, and professionals who support them – can spend lifetimes navigating through uncoordinated services, slow-moving bureaucracies, and lengthy waiting lists. Advances like personal health portals, adaptive technology, and electronic information exchange represent more than incremental experience improvements – they can be game-changers.
This population, though their needs are complex, offers tremendous potential for achieving better value. The health system can reduce the cost and improve the quality of care for millions of high-need, high-cost people by transforming how providers work together.
The good news is that the secret is out:
• State Delivery System Reform Incentive Payments (DSRIP) programs are making funding available to support technology adoption and integration across diverse provider segments, including I/DD.
• In New York City, some health systems are offering free assistance to I/DD providers who want to connect to health information exchanges.
• Last month, the US Centers for Medicare & Medicaid Services (CMS) announced a pilot program for Accountable Health Communities that are designed to integrate clinical and social approaches to health for vulnerable populations.
These efforts make sense: For payers and medical providers needing to take a hard look at avoidable costs, the I/DD population should likely be at the top of the list. However, in order to enable meaningful collaboration in screening, individualized communication strategies, goal definition, discharge planning, medication adherence, and other factors than can yield meaningful value, I/DD providers will need to be able to generate and use electronic data as well as clinical providers.
I/DD providers often lack the resources to invest in large scale modernization. They tend to be predominantly nonprofit organizations without the same technology funding and incentive programs as clinical providers. While many physician practices can fast-track IT transformations by latching on to a hospital electronic health record (EHR) platform, it may not be so easy for I/DD providers. Extending complex clinical technology to an I/DD setting can be a bit like taking a sledgehammer to a thumbtack. Hospital EHRs simply aren’t the right tool for the job: Most I/DD providers do not have much use for radiological imaging, blood chemistry results, or surgical preference cards. (The scalpel cuts both ways on this – try asking a hospital EHR vendor about transportation routes, group progress notes, and program enrollments).
Technology exists that fits the operational and service delivery models of I/DD providers, and many leading vendors in this space are hard at work preparing their software for connected health. For many I/DD providers, though, the task of catching up to an EHR baseline can be daunting, and it can be hard to envision emerging as participants in information exchange, care coordination, and population analytics. But this vision is what I/DD providers should strive for.
With the momentum of the waves of change unlikely to let up, steps I/DD providers can take to harness the ride instead of being swept away are:
• Develop a clear and well-communicated strategy: Transitioning to technology-enabled collaboration is a monumental shift for many I/DD providers. Effective organizations will need to be able to articulate the changes in the industry, their technical and operational response, and the impacts and benefits anticipated. Technology-enabled transformation isn’t a special project, it’s a culture shift that needs well-informed champions.
• Assess a new set of capabilities: As the definition of what it means to be a health care provider is changing, I/DD organizations should consider redefining the capabilities they will likely need to be effective. Achieving real value for people with I/DD can require management and insightful application of behavioral, habilitative, social, and clinical data. I/DD providers should understand the competencies required and tools needed to cohesively manage this data set, with emphasis on the inclusion of clinical data and standards such as Continuity of Care Records. Other capabilities, including mobile service documentation, predictive analytics, and consumer engagement may be completely new, but also completely applicable under a long-term strategy.
• Invest for the future: Health information technology will no longer be a luxury or an experiment for the I/DD field – it will likely be the core enabler of how services are delivered and lifetime health is managed. I/DD providers can respond accordingly with the human capital investments to define, establish, and sustain their technology operations. For many I/DD providers, this may entail permanent resource adjustments or creating new director-level positions.
• Start the conversation: Just as I/DD providers will likely need to learn how to “speak hospital,” medical providers have compelling incentives to analyze and use the habilitative, behavioral, and social information of I/DD patients. Hooking up EHRs may be a required prerequisite, but meaningful value will likely come from health systems working with I/DD providers to care for people together. I/DD providers who proactively establish relationships with clinical partners will likely be ahead of the curve when risk-sharing and population health incentives start, and will likely get some help from them along the way. (Note to payers and health systems – don’t be shy! You can start the conversation, too!)
I’m not a frequent surfer, but I know the first step is to get up the nerve to paddle out. It may feel wobbly and unnatural at first, but you gain experience each time. No matter what, for I/DD providers watching the tide surge toward them, the sand isn’t likely to stay dry very long.
I’m looking forward to spending time with leaders in this field and hearing their perspectives on the challenges and opportunities ahead, and how they’re preparing for the waves of change that are sweeping their way. I’ll bring my board shorts.