« The Dual Agenda: September 17, 2014 Issue

Eldercare Voices

Expanding the PACE Program to Adults with Disabilities Under Age 55

A perspective from Tara A. Cortes, PhD, RN, FAAN

There are about 3.5 Million adults with disabilities under the age of 65 who are dually eligible for Medicare and Medicaid, and who, until recently, have had limited access to coordinated integrated care. This population is comprised of people with developmental, cognitive, behavioral and physical disabilities. Adults with disabilities account for 39 percent of all emergency room visits and 24 percent of them – 840,000 individuals – could be expected to need nursing home level of care. Many are capable of living in the community with appropriate housing and services, thereby avoiding the more costly care and limited life experience of institutional living.

Over the past three years the Medicare-Medicaid Coordination Office (MMCO) at CMS has been leading an effort to have Congress create new flexibility in the law governing PACE – the Program of All-Inclusive Care for Elderly – currently available only to those over age 55. Specifically, the MMCO would develop a program with similar characteristics to the PACE program, but eligibility would be expanded to reach the under-55 population, covering millions more dually eligible adults with disabilities. This program would provide capitated coordinated care for a population that would otherwise be in a fee-for-service model with no integration of Medicare and Medicaid services.

In the 1970s, OnLok, a pioneering senior day health center in San Francisco, recognized the need to provide an alternate model of care for frail older adults, as there were not sufficient nursing home beds to accommodate all those needing long-term support services. OnLok worked with legislators to frame a bill to provide community-based care to this population under a managed long-term care plan. The program aimed to provide team-based coordinated care in primary, acute and home-based care settings to keep people out of institutions as long as possible. In the mid-1980s Congress passed legislation to authorize a demonstration for the Program of All-Inclusive Care for the Elderly, and it ultimately became a permanent part of both the Medicare and Medicaid programs.

This national program offers fully integrated Medicare and Medicaid services for dually eligible adults 55 and older who meet the criteria for nursing home level of care, through capitated financing to provide an integrated seamless approach to health care by an interdisciplinary team across the care continuum. Research has shown that providing people in need of long-term support services with all-inclusive, fully-integrated care such as PACE offers, results in greater longevity, better health outcomes and a better quality of life. Importantly, these care models keep people in the community and out of institutions.

The successes of PACE to date helped to frame the sorts of best practices that were envisioned for replication in the dual eligible demonstration projects currently underway. Unlike PACE, with its current age-55 cutoff, the dual demonstrations extend to all dually eligible individuals in the geographic service regions they cover.

The Proposal: In order to conceptualize a meaningful program for this population of under-55 adults with disabilities and preserve some of the same characteristics of PACE, the MMCO has been conducting stakeholder meetings with governmental offices and NGOs who are involved with the care of, or represent the interests of, this population, providers caring for this group, and individuals with disabilities themselves.

A characteristic of the PACE program which has been important to its success is the individualized interdisciplinary care plan for each plan participant. In this envisioned “PACE-like” program, each participant would have a holistic plan to ensure a seamless continual process to address each member’s daily needs, as well as their lifelong goals. This plan would anticipate potential problems by identifying risks, integrating discipline-specific assessments and allowing for coordinating the continuous reevaluation of care. Plans would require professionals to reevaluate status with the member at prescribed intervals, as well as episodic reassessments prompted by changes in the member’s health status.

The PACE expansion aims to improve the quality of health and life for people with disabilities, while also helping to manage costs, by offering appropriate supports in the community rather than in a nursing home or other form of institutionalization. It is anticipated that the program would provide coordinated person-centered care through an interdisciplinary team designed to provide the services essential to particular disabilities. Active engagement through adaptive computing, social networking, employment and social services would need to be part of this program. Issues such as adequate housing and the availability of services that preserve the integration of this population with mainstream consumers of services need to be addressed as well.

This proposal was included as a recommendation in President Obama’s 2015 budget, but legislation has not yet been introduced in Congress. MMCO continues to meet with stakeholders to assure that an expanded program includes the components necessary to be successful for this population.

Tara A. Cortes, PhD, RN, FAAN, is executive director and professor at The Hartford Institute for Geriatric Nursing, New York University College of Nursing and a 2013-2014 Health and Aging Policy Fellow at the Medicare/Medicaid Coordination Office at HHS.