Legend of the Purple Unicorn

If you had walked into our former workplace, you would have seen an unexpected sight – at least for a government office – unicorns everywhere!  Usually purple but all unicorns were welcome. They had become the mascot of the Division of Aging and it was all related to person-centered thinking.

I had not really heard the term “person-centered” until right after I joined the Division, when the HCBS Settings rule was promulgated.  I won’t claim that I fully understood it (then or now!), but my understanding of what being person-centered means has grown through our experience in facilitating the creation of Indiana’s No Wrong Door plan, throughout our work to implement the Settings Rule, and our approach to the overall modernization of LTSS in Indiana.

Person-centeredness is at the core of any high-performing system of LTSS, but it’s a concept that is easy to misunderstand, much to our shared detriment.  I think that to people seeking to bring a business orientation to publicly funded LTSS, it sounds like a “touchy-feely” social service concept. Budget people are wary because it sounds like the payer is expected to do/be all things to all people, and that’s a scary fiscal concept; but there are good business reasons to develop a person-centered culture.

A traditional eligibility-driven system starts with the question of “what are you eligible for?” People may then be offered everything that they are eligible for. The eligibility gate, in theory, is intended to restrict services only to those persons who meet criteria, but it also may result in people receiving services that they are eligible for whether or not those services actually address the challenges they face. Additionally, persons may be directed to use their personal resources in such a way that it drives them to eligibility faster than they might otherwise have done.

Information shared by ACL in 2014 suggests that about 80% of people who inquire about LTSS can have their needs met without using public funds –  but– the system has to be able to determine what those needs actually are.  There are more questions in a person-centered system:  “what challenges are you facing?”, “what do you need?”, “what resources currently support you?”

Person-centered counseling starts with figuring out what a person’s actual challenges are and what resources, financial and otherwise, they already have, even what community resources might be available.  For example, people can be counseled on ways to use their personal resources to remain in their home, or it may be ascertained that their need is really caregiver support to sustain and preserve their caregiver’s ability to continue to provide care.  If there are gaps, then eligibility can be determined and publicly funded services can be implemented to fill those gaps.  People may delay needing Medicaid if their support needs are met in a more targeted fashion, and/or if they have support to develop strategies to remain in their home using their personal resources. People need information so that they don’t just have choice – they need to have informed choice.

No Wrong Door systems are the most recent evolution of the effort  by ACL and CMS to support states in developing person centered systems of access to LTSS. It’s a paradigm shift for many states that may require a significant investment to design and implement. The business case for developing NWD has been challenging because it’s been hard to figure out how to measure the return on the investment that may be needed in many state LTSS systems.  The recent NWD funding opportunity from ACL is a chance for states to collaborate with ACL on data collection strategies and measures development for the next two years.

While it is comparatively easy to identify process and output measures or documentation associated with person-centered activity, it is still not truly easy to know whether or not those activities have become absorbed in the culture of the organizations in the system – that there is a true framework for person-centered thinking, counseling and planning.  Ideally, this way of interacting with participants is fully integrated in all aspects of how the system works, not just the how we work with those seeking or using LTSS.  That was our (admittedly ambitious) goal when we embarked on the development of a learning community for person centered practices in Indiana.

Understanding of what person-centeredness means varied widely across Indiana.  It was almost easier to explain what it wasn’t than what it was.  A case manager observed one day that “person-centered meant taking people’s opinions into consideration when they developed their plan”.  Some compared it to just really good customer service. Another case manager stated in a training “Person-centered planning means giving people everything that they want – and we can’t give them everything that they want.” Debbie responded that she was right – we couldn’t give people everything that they might want.  She told her that “they might want a purple unicorn and that we were never going to be able to give them a purple unicorn, but that it was still important that we understand that this was important to them and learn about why it was important”. Person centered planning is often the art of balancing what’s important TO a person, with what’s important FOR that person.  The result is targeted services that address specific needs rather than an eligibility focused process resulting in service selection from a menu of what is available. But the entire system, from intake to service definitions, to service delivery, to reimbursement, has to support that outcome.

The purple unicorn became our reminder of the importance of person-centered thinking and the need to put individual goals, needs, and preferences ahead of eligibility determination. The purple unicorn was our (just slightly subversive) symbol of putting people at the center of the processes, rather than just expecting people to conform to existing processes.  They had become the de facto symbol of the system transformation we had undertaken.  While sometimes visitors raised their eyebrows, we were always happy to explain the legend of the purple unicorn.

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