The emerging care environment for persons with ID/DD

A very rapid confluence of several factors is bringing dramatic change to the care of persons with intellectual development or developmental disabilities (ID/DD). These key elements are the Affordable Care Act (ACA), the Olmstead Supreme Court decision on services, and major service integration efforts focused on person-centered and whole-person care.

Perhaps the most dramatic changes are due to the Olmstead Decision. This landmark Supreme Court determination requires that services be provided in the least restrictive setting possible. Together with the Americans with Disabilities Act (ADA), the decision also has major implications for place of residence and work placements. In general, services must be provided in an integrated manner in the community, and housing and work must be as integrated as possible with those of the broader community population.

The ACA requires that services be person-centered rather than provider-centered. It also requires that services have a whole-person focus. These requirements have clear implications: Persons are expected to play a very active role in their own care, and care must address all of a person’s service needs, i.e., in effect, one-stop care.

These ACA requirements reinforce longer-term efforts to develop medical and health homes that offer integrated primary care, behavioral health care, and ID/DD care, using a one-stop format. Such integration efforts are relatively new to the ID/DD field; they have been underway in behavioral health for almost two decades.

Medicaid Home and Community-Based Service (HCBS) waivers represent a primary source of funding for ID/DD services; more than 70% of HCBS funds are devoted to care of persons with ID/DD.  In 2014, the Centers for Medicare and Medicaid Services (CMS) issued new requirements for HCBS waivers to bring them into conformity with the ACA, the Olmstead Decision, and service integration efforts.

In general terms, these new requirements specify that states must submit a five year plan. This plan is to detail the steps through which states will move from their current ID/DD service arrangements to “fully integrated” care, defined as fully integrated services, fully integrated housing, and fully integrated work. All states have submitted these required plans; yet, informal feedback suggests that, to date, CMS is continuing to negotiate with most states about plan content.

Needless to say, these new federal requirements have sent major shock waves through the ID/DD care community. The following strategies are presented in order to advance discussion of some potential avenues through which these new requirements can be met.

Shared-Accountability Contracts. To achieve service integration while promoting person-centered and whole-person care, new bridges will need to be built between ID/DD service providers and primary care and behavioral health providers. A potential mechanism for developing these integrated medical and health homes is a shared accountability contract. Such contracts would assign specific service requirements to each of the partners for achieving full service integration. These contracts also would have specific performance requirements for each of the participating entities to assure safe, timely, and effective care using a one-stop framework.

This same model can be used to develop integrated work and integrated housing arrangements for persons with ID/DD. Of note, CMS recently provided grant funding for an Accountable Health Communities Model to build infrastructures that will facilitate quicker linkage of clients with social services to fulfill their needs for housing, jobs, and social supports. This wonderful opportunity ought to be used to develop approaches for placement of persons with ID/DD into integrated housing and work settings.

Population Health Management. A second issue also has arisen around ID/DD care. CMS will require “conflict-free case management” which means that case managers/care coordinators cannot be employed by an entity to which they refer a client for Medicaid-funded services. This issue can be addressed by setting up an arrangement under which a separate entity does population health management for all persons with ID/DD in a defined group, and under which it also employs case managers/care coordinators to guide the care of individual clients in that group.

State/County Oversight. The potential solutions outlined above only can serve well if states and counties fulfill their responsibilities as the authorities for full service integration and its management. States and counties have inherent responsibilities for the health and well-being of their entire population. These responsibilities can be delegated, but they cannot be abrogated.  Because the issues and solutions outlined here are complex, states and counties will need to convene key stakeholders to adapt these solutions to local circumstances. Such convening will require representatives from governmental, private, service, work, housing, and the consumer/family communities.