Foreword
This report describes efforts in one state to reduce reliance on nursing
homes for care that seniors could receive, and that most would prefer to
receive, in their own homes or in homelike settings. The authors assess the
experience of "rebalancing long-term care" in New Jersey since 1996, when that
state consolidated all services for seniors in one department.
This is a story of steady progress, not dramatic reform. "A few states,"
the authors write, "have led the way for decades. Other states, like New
Jersey, demonstrate that it is possible to change the direction of long-term
care—step by step, year by year." The authors derive lessons from New Jersey's
experience for policymakers in other states.
This report began, as most projects of the Milbank Memorial Fund do, with a
question from a policymaker. Christine Grant, then Commissioner of Health and
Senior Services of New Jersey, asked in mid-2001 if the Fund would convene
persons experienced in making and implementing policy for long-term care from
New Jersey and other states to assess the results of the first six years of
the consolidation of health and senior services in that state. The meeting
occurred in January 2002; participants in that meeting as well as persons who
reviewed the report in draft are listed in the Acknowledgments.
The report goes considerably beyond the discussion at the meeting because
of the expertise of its authors. Susan Reinhard served as the first Deputy
Commissioner for Senior Services after the reorganization in 1996. She is now
co-director of the Rutgers Center for State Health Policy. Charles Fahey,
currently a Program Officer of the Fund, has held many distinguished positions
in the fields of aging and long-term care at local, state, national, and
international levels. More information about each of the authors is available
at the end of the report.
Daniel M. Fox
President
Samuel L. Milbank
Chairman
Acknowledgments
The following persons participated in meetings and/or reviewed this report
in draft. They are listed in the positions they held at the time of their
participation.
William R. Abrams, Chief Operating Officer, American Health Care
Association; Marilyn Askin, New Jersey State President, AARP; Roger Auerbach,
Senior Consultant, The Lewin Group, Inc.; Andrea Aughenbaugh, Chief Executive
Officer, New Jersey State Nurses Association; Francis J. Blee, Member, Health
Committee, New Jersey General Assembly; Deborah Bradley, Acting Director,
Division of Medical Assistance and Health Services, New Jersey Department of
Human Services; Diane K. Braunstein, Program Director, Long-Term Care and
Aging, Center for Best Practices, National Governors Association; Harriette L.
Chandler, Member, Health Care Committee, Massachusetts Senate; Elizabeth
Clemmer, Associate Director, Public Policy Institute, AARP; Kevin Concannon,
Commissioner, Maine Department of Human Services; William Conroy, Deputy
Commissioner, New Jersey Department of Health and Senior Services; George
DiFerdinando, Jr., Acting Commissioner, New Jersey Department of Health and
Senior Services; Kenneth Dolan, Executive Director, Home Care Council, Verona,
N.J.; Len Fishman, President and Chief Executive Officer, Hebrew
Rehabilitation Center for the Aged, Boston; Wendy Fox-Grage, Program
Principal, National Conference of State Legislatures, Washington, D.C.; John
R. Grace, President and CEO, Kansas Association of Homes and Services for the
Aging; Christine Grant, Vice President, Government Affairs and Public Policy,
Aventis Pasteur, Swiftwater, Pa.; Lee Greenfield, Principal Administrative
Assistant, Hennepin County Health and Human Services Policy Center,
Minneapolis; James K. Haveman, Jr., Director, Michigan Department of Community
Health; John Michael Heath, Associate Professor, Department of Family
Medicine, UMDNJ - Robert Wood Johnson Medical School, New Brunswick, N.J.;
Leslie Hendrickson, Assistant Commissioner, Division of Consumer Support, New
Jersey Department of Health and Senior Services; Charlene M. Holzbaur,
Director, Office of Management and Budget, New Jersey Department of Treasury;
James E. Introne, President, Loretto Rest Nursing Home Company, Syracuse,
N.Y.; Rosalie A. Kane, Professor, Division of Health Services Research and
Policy, University of Minnesota School of Public Health; Mark Kator,
President, Isabella Geriatric Center, New York; Carol Kientz, Executive
Director, Home Health Assembly of New Jersey; Larhae Knatterud, Planning
Director, Aging Initiatives, Minnesota Department of Health; James R.
Knickman, Vice President, Research and Evaluation, The Robert Wood Johnson
Foundation; Richard Ladd, Ladd & Associates, Health and Social Service
Consultants, Turner, Ore.; Paul R. Langevin, Jr., President, New Jersey
Association of Health Care Facilities; Kathleen Mason, Assistant Commissioner,
Division of Senior Benefits and Utilization Management; New Jersey Department
of Health and Senior Services; Dan McGuire, Director, Bureau of Home and
Community Based Services, Pennsylvania Department of Aging; Catherine Morris,
Assistant Commissioner, Division of Long Term Care Systems, New Jersey
Department of Health and Senior Services; Eileen O'Connor, Assistant
Commissioner, Division of Senior Affairs, New Jersey Department of Health and
Senior Services; Larry Polivka, Director, Florida Policy Exchange Center on
Aging, University of South Florida, Tampa; LuMarie Polivka-West, Director of
Policy and Quality Assurance, Florida Health Care Association; Don Redfoot,
Senior Policy Advisor, AARP; Peggy Rosenzweig, Ranking Member, Health,
Utilities, Veterans and Military Affairs Committee, Wisconsin Senate; Linda
Velgouse, Director, Home and Community Based Services, American Association of
Homes and Services for the Aging; William Waldman, Visiting Professor and
Executive in Residence, School of Social Work, Rutgers, The State University
of New Jersey, New Brunswick; John Wanat, Executive Director, Monmouth County
Office on Aging; Arthur Y. Webb, Chief Executive Officer, Village Care of New
York; and Carl Young, President, New York Association of Homes and Services
for the Aging.
Executive
Summary
Older adults in New Jersey are like their counterparts around the country:
If they need long-term care, they would rather get it at home. But like their
peers in most states, they get public financial support more readily if they
go to a nursing home. In 1996, New Jersey ranked "average to well below
average" regarding its use of public dollars for home- and community-based
systems of long-term care. That year, New Jersey launched a multipronged
strategy to change this situation.
The state consolidated all services for seniors into one department, with
the mission to promote independence, dignity, and choice for older adults.
This new department developed more home- and community-based services, and
spearheaded a county-based system of information and assistance to help
seniors find the services they prefer. With these changes in place, New Jersey
has more than doubled the percent of long-term care funds spent on home- and
community based care, rather than nursing home care, for older adults—from 7.3
percent in state fiscal year 1997 to 15.3 percent in fiscal year 2002. For
state fiscal year 2003, the percent is expected to rise to 17.2. From FY 1997
to FY 2002, the number of people on Medicaid in nursing homes dropped by more
than 3,000, a 10 percent reduction.
This report chronicles New Jersey's recent experience in order to assist
policymakers in other states who face similar challenges to meet elders'
preferences for long-term care and to develop sustainable services and systems
at the same time. It explains why New Jersey wanted to reform its long-term
care system and how it went about making the changes. The report also includes
recommendations for current New Jersey officials and policymakers and for
their counterparts in other states.
Through a 1996 Governor's Executive Reorganization Plan, more than 20
programs and 600 staff members from four different state departments were
brought together into a single division of senior services within the "new"
New Jersey Department of Health and Senior Services (NJDHSS). This
cabinet-level department was granted full policy and budgetary authority to:
- Create new long-term care alternatives and oversee their quality through
licensing and certification.
- Inform older adults and the people who care for them about their
options.
- Pay for senior services through all state funding dedicated to that
purpose and through Medicaid and Older Americans Act funding.
Senior services were consolidated into one department to promote
independence, dignity, and choice for New Jersey's 1.4 million older adults
and to coordinate policies, budgets, and programs toward that end. The state
sought to change its long-term care system from one devoted almost exclusively
to institutional care in nursing homes to one that would help seniors live in
their homes and communities for as long as possible. In 1996 (FY 1997) almost
all of New Jersey's public funding for long-term care of older adults went to
nursing homes. The New Jersey Department of Health and Senior Services
stimulated the development of new long-term services and more support for
family caregivers. It also created new ways to find out about these home- and
community-based options. NJEASE, a county-based information and assistance
program, was designed as a "one stop shopping" point of entry into senior
services. Community Choice Counseling helped people in nursing homes learn
about their other long-term care options.
The consolidation of senior services into one department led to a concerted
effort to develop polices and programs to help more seniors remain in their
homes and communities. NJDHSS data indicate that these efforts have
contributed to a steady shift of public resources from institutional to home-
and community-based long-term care. New Jersey reduced its reliance on nursing
homes from 92.7 percent of its funding to 84.7 percent over the five years
from state fiscal year 1997 to 2002. During the same period, home- and
community-based care rose from 7.3 to 15.3 percent of the budget for senior
services.
Six years after consolidation, however, the state still plans to spend more
than 80 percent of the funds for long-term care of older adults on
institutions. If New Jersey wants to join Oregon, Washington, Colorado, and
other states that have are "above average" in the percent of public funding
going to noninstitutional care, much work remains. The authors of this report
offer recommendations about that work for the state.
While each state is unique in its history, economy, and social commitments,
the aging of America is a universal reality that affects every state's public
policies. Certain aspects of New Jersey's experience have national relevance.
In any state that wants a fundamental shift in its delivery of long-term care,
policymakers must:
- Encourage a civic process that engages people and lets them express
their preferences. This discourse helps create a groundswell for
change—although focused, sustained leadership by a few champions of change
is essential. In some states, like Oregon, senior advocates who pushed a
bill through the legislature were the driving force for change. In New
Jersey, leaders in the executive branch galvanized change and sought
advocates and legislators who would endorse the necessary programs and
financing.
- Identify the champions. Many forces can create the impetus for change.
But talented, committed leaders must make sure that vision and energy are
channeled into substantive results. A few visible champions are needed to
keep the issues in the limelight. The most effective champion is a governor
who will embrace the change.
- Develop and support staff members. Regardless of the driving force for
change, knowledgeable, creative staff in the executive branch must devise
and coordinate policies and programs. It takes time to develop a policy or
program from a concept to a reality. Sustained leadership and staff efforts
are vital.
- Develop a clear statement of underlying values to help focus the policy
process. New Jersey uses independence, dignity, and choice.
- Recognize that these values mean little without actual services and
access to them. Nursing home care will continue to be needed, although it
may be scaled down. However, some of the most impaired older adults now
living in their own homes. These people need services there, otherwise they
will be forced into institutions.
- Leverage consumers' desire to remain at home and the state's desire to
minimize expensive institutional programs as complementary, formidable
forces for change.
- Understand that long-term care reform is multifaceted. It includes
health promotion, disease prevention, and regulatory reform—as well as
expansion of home- and community-based services.
- Use federal and state dollars creatively to expand home- and
community-based services to help older adults at all income levels. Develop
"seamless" programs with consistent eligibility criteria and uniform
consumer-contribution requirements.
- Develop user-friendly structures, close to the consumer. They are an
important factor in making choices real, regardless of the person's income.
Even people who are not poor should know that they have a place to call for
"one-stop shopping"—help in finding affordable services.
- Develop a universal preadmission screening form and process to assess
the needs of people seeking long-term care.
- Acknowledge that state activities are constrained or allowed by federal
statutes, regulations, and interpretations. The Older Americans Act,
Medicare, and Medicaid provide the bulk of public funding for long-term care
and have a major impact on its structure. Differing eligibility standards as
well as regulatory idiosyncrasies make it hard for consumers, providers, and
state policymakers to develop or access complementary kinds of care.
However, much can be done even within these limits.
- Examine the issues in integrating services for older adults, younger
people with disabilities, and people with developmental disabilities. The
Supreme Court's Olmstead decision, and the state's responses to it,
tend to focus on younger persons with disabilities.
States that want to shape policies and programs to help older adults live
as independently as possible in their preferred environments can make
significant progress toward that goal. A few states, like Oregon and
Washington, have led the way for decades. Other states, like New Jersey,
demonstrate that it is possible to change the direction of long-term care—step
by step, year by year.
The economic constraints that states currently face make it more important
than ever to examine how long-term care dollars are spent. Some of the most
progressive states made their most significant progress during economic
downturns because policymakers were willing to listen to new ideas. Leadership
is critical, and dialogue with the public is important to shape long-term care
to meet the needs of those who may use it.
Introduction
Historically the State of New Jersey has shown its concern for older adults
in both the public and private sectors. But New Jersey's public spending for
long-term care, like that of most states, contrasts sharply with consumer
preferences. While consumers prefer supportive care in their homes and
communities, their choices are often restricted to institutional settings,
especially if the consumers have limited funds. In 1996, the state launched a
three-pronged strategy to lessen its overreliance on long-term care in
institutional settings and increase community-based care. First, the state
consolidated all senior services into one department charged with promoting
independence, dignity, and choice for older adults. Second, this new
department developed more home- and community-based services. Finally, the
state spearheaded a county-based system of information and assistance to make
it easier for seniors to find their preferred services.
This report chronicles New Jersey's experience in order to assist
policymakers in other states who need to meet their older adults' preferences
for long-term care and, at the same time, to develop sustainable services and
systems. It explains why New Jersey wanted to reform its long-term care
system, how the state made its changes, which key stakeholders were involved,
what early successes arose, and what challenges remain. The report also makes
recommendations for current New Jersey officials and policymakers and for
their counterparts in other states.
Background and
Goals
New Jersey is home to 8.4 million people, including 1.4 million persons
aged 60 or older. The 1.4 million includes more than 1.1 million who are more
than 65 years old, and 136,000 of them are over 85. The population is slightly
older than that of most states; 13.2 percent of all New Jerseyans are over 65,
compared to the national percentage of 12.4 (Census 2000 Summary File 1,
available at http://factfinder.census.gov/). Many
of these older adults need long-term care. As in the rest of the country,
about one in five older New Jerseyans (19.8 percent) have difficulty with
mobility or with caring for themselves (AARP 2000).
Like their counterparts around the country, older adults in New Jersey who
need long-term care prefer to get it at home. However, like their peers in
most states, they get public support more readily if they go to a nursing
home. Based on 1992 data, New Jersey was ranked "average" in its efforts to
change that situation by creating strong home- and community-based systems of
long-term care (Ladd et al. 1995). During the next four years, New Jersey's
nursing home caseloads and expenditures grew, and no programs permitted older
adults to direct their own care at home. Before the state launched its
redesign of senior services in 1996, New Jersey ranked "well below average"
for its commitment to home- and community-based care when compared with other
states (Ladd, Kane, and Kane 1999).
Two forces for change converged to propel the state in a new direction.
First, public discussion helped lay a foundation of support for change and
introduce some new concepts in long-term care. Second, leaders in long-term
care entered public service and championed changes.
Public Discussion
Two sets of statewide public forums held in the early 1990s highlighted
consumer dissatisfaction with the state's long-term care. Compared to Indiana,
Oregon, Wisconsin, and many other states, New Jersey was not known for its
strong senior advocacy groups (Ladd 1997). The forums brought senior
advocates, policymakers, and providers together in discussion groups—atypical
events in New Jersey. The gatherings sparked the development of important
relationships and new ideas that would later influence the state's policy and
program development.
The first set of public forums began in 1990 as the state was preparing its
State Health Plan regulations. This State Health Plan included a chapter on
long-term care that decried the fragmentation of services for older adults
among three major state departments and agencies; services were organized
around funding sources rather than peoples' needs (NJDOH 1991). Although the
State Health Plan was never formally adopted in regulation, public discussion
of long-term care helped create a groundswell for change. This consensus
document called for consolidation of state agencies to focus on alternatives
for long-term care, including assisted living and adult foster care. It had
the support of consumer groups, such as AARP, and provider associations,
including nursing home and home health care leaders who believed their members
could play a part in diversifying long-term care services. Two nursing home
leaders even went to Oregon to learn more about assisted living, adult foster
care, and the state and local infrastructures that supported service delivery.
The 1993 work groups leading up to the 1994 Governor's Conference on Aging
provided a second set of forums for discussion of broad issues in senior
services. These groups called for streamlining long-term care and making the
system more consumer-friendly (NJDCA 1994). They also advocated more long-term
care choices.
Leadership
These public discussions helped document the desire for change in New
Jersey. However, public discourse alone would probably not have led to action.
It took concerted effort by a few champions to bring the message to the
highest levels of government and begin the process of rebalancing long-term
care.
Shortly after the two public forums, New Jersey elected a new governor,
Christine Todd Whitman. Her 1993 transition team included strong advocates for
changing long-term care policy, financing, and services. Several of these
advocates then joined the Whitman administration to advance change from within
the government.
To increase the momentum for change, the state applied for a grant from the
Robert Wood Johnson Foundation (RWJF) for new, locally based pilot programs to
give older adults the information they needed to find services. Susan Reinhard
was the project director of this RWJF grant and coordinated efforts with the
governor's office and four state departments. The state added $400,592 in
matching funds to RWJF's planning grant of $238,251. The 1995 RWJF grant
required the governor's office to convene an interdepartmental planning group
that would report progress, issues, and barriers to the governor's Office of
Planning. This project helped make the case to county and state stakeholders
that the best way to help older adults and their families was to consolidate
access to a full range of information about health and long-term care, and
other pertinent services, at the county level. After examining similar
initiatives in Oregon, Connecticut, Illinois, and Indiana, the
interdepartmental group launched the New Jersey Easy Access, Single Entry
(NJEASE) initiative to help seniors and their families find information and
assistance at the county level (Reinhard and Scala 2001). Thirteen out of 21
counties immediately volunteered to participate in NJEASE; later, all adopted
it.
This interdepartmental investigation into streamlining services for seniors
at the local level kept the issue before the governor and the commissioners in
the departments that provided such services. As momentum for consolidating
information and access at the local level grew, the need for a parallel
consolidation of long-term care services and financing at the state
level became more apparent to leaders of the executive branch. Many other
questions emerged about the mix of services that New Jersey was
offering—questions that policymakers in all states should ask about their own
long-term care systems. (See Box 1.)
Box 1. Priorities in Rebalancing
Some policy options based on New Jersey's experience include:
- Designing a local system of information and assistance to make
sure older adults at all income levels can find affordable services
to help them stay in their homes when possible.
- Helping people use their personal resources wisely. Seniors can
usually stay at home longer by "spending down" their own resources
than by "spending down" in a nursing home.
- Designing a universal assessment and screening tool to help
document the person's activities of daily living and other factors
that will determine service needs and eligibility for public
assistance. The state may allocate resources based on impairment
levels, changing these levels according to state budget capacity to
assure that the most impaired persons get preference for services.
- Developing programs that help people who are not eligible for
Medicaid get services to help them stay at home. Sliding-scale
programs can help older adults stretch their dollars for these
services.
- Instituting a transition program to identify people in nursing
homes who want to return to their own homes and communities and are
able to do so, given adequate aid.
- Designing Medicaid home- and community-based programs that help
people to avoid nursing homes, or to leave them when possible. State
and Medicaid funds should help pay the one-time costs of returning
home (e.g., help with the first month's rent, security deposits,
furniture, and the like).
- Examining ways for nursing homes to downsize in accordance with
changing market
demand.
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By the fall of 1995, the commissioners of those departments housing the
major components of senior services agreed that consolidating those services
at the state level was good public policy. They wrote to Governor Whitman to
say so, but stopped short of saying how consolidation should occur. The
governor asked her staff to appoint an internal consultant to propose methods
for consolidation, which could have included changing existing departments or
establishing a new department.
Governor Whitman chose the Department of Health to lead the consolidation
in a "new" New Jersey Department of Health and Senior Services (NJDHSS).
NJDHSS became effective in July 1996. Its new Division of Senior Services
combined services, financing, and staff from four departments:
- Health: licensing and certification of all long-term care facilities
- Human Services: the Medicaid budget and policy responsibility for
nursing homes and home- and community-based waivers that primarily serve
older adults, as well as pharmaceutical assistance for the aged and disabled
- Insurance: Medicare and supplemental insurance counseling
- Community Affairs: services supported by the Older Americans Act
Goals
The primary goal of consolidating senior services into one department in
1996 was to promote independence, dignity, and choice for New Jersey's 1.4
million older adults and to coordinate policies, budgets, and programs to that
end. The state sought to shift its long-term care system from one focused
almost exclusively on institutional care in nursing homes to one that would
help older adults live in their homes and communities for as long as possible.
Almost all of New Jersey's public funding for long-term care for older adults
(92.7 percent) was going to nursing homes. It was far easier for older adults
and their families, physicians, and other providers to find information about
nursing homes than about alternatives. And alternatives to nursing homes were
scarce.
To promote independence, dignity, and choice, the new department
established several objectives (NJDHSS 1998). The department would work with
consumers, providers, and local and state policymakers to:
- Promote health and wellness so that older adults can maintain their
highest level of independence.
- Provide more choices for care, particularly in people's homes and
communities.
- Use public and private resources carefully—including the individual's
private resources—so that these choices are more accessible and affordable.
- Ensure that the care provided is high quality.
- Help people find these options quickly and easily.
The
Consolidation Process
Agency Restructuring
By the end of 1996, the largest reengineering effort in the history of the
New Jersey Department of Health was completed. Through the Executive
Reorganization Plan (no. 001-1996), more than 20 programs and 600 staff
members from four different state departments were consolidated into a single
Division of Senior Services in the "new" New Jersey Department of Health and
Senior Services (see Box 2). This new department was granted policy and
budgetary authority to:
- Create new long-term care alternatives and oversee their quality through
licensing and certification.
- Inform older adults and the people who care for them about their choices
for care.
- Pay for senior services through Medicaid, the Older Americans Act, and
all state funding dedicated to senior services.
By consolidating authority for policies, programs, and financing for
long-term care for older adults, New Jersey joined a handful of states that
concentrated on rebalancing such care. No state, New Jersey included, has
combined all long-term care funding and functions for all populations into a
single agency (Kane, Kane, and Ladd 1998). Oregon, Washington, Kansas, and
Michigan have tried to integrate long-term care (Braunstein 2002; Kane, Kane,
and Ladd 1998), using different methods. Unlike the other states, New Jersey
now divides Medicaid financing responsibility between two cabinet-level
departments, rather than creating one large "umbrella" agency.
Box 2. Programs Consolidated into the New Jersey
Department of Health and Senior Services in 1996
From the Department of Health
- Development of regulatory standards and licensing of all
facilities—nursing homes, assisted living, adult foster care, home
health agencies, adult day care, etc.
- Planning for nursing homes—certificates of need
- Alzheimer's Day Care Program
From the Department of Community Affairs
- State Unit on Aging—the Division on Aging, with oversight of all
area agencies on aging, Older Americans Act programs, Social
Security block grant, etc.
- Office of the Ombudsman
- Office of the Public Guardian
- Adult Protective Services
- Congregate Housing Services Program
From the Department of Insurance
- Senior Health Insurance Unit
From the Department of Human Services
- Nursing Facility Rate Policy and Reimbursement—rate setting,
rate policy, claims, and provider support
- Nursing Facility Level Services—long-term care field offices,
nursing facility preadmission screening, clinical audits
- Home- and Community-Based Services for Older Adults
- Statewide Respite Care Program
- Adult (Medical) Day Care
- Adult Social Day Care
- Home Care Expansion Program
- Community Care Program for the Elderly and Disabled (CCPED,
which is a 1915(c) Medicaid waiver program)
- Pharmaceutical Assistance to the Aged and Disabled
- Lifeline Credit Program
- Tenants' Lifeline Assistance Program
- Hearing Aid Assistance to the Aged and Disabled
- Enrollment into the Medicare Savings
Programs
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Organizational Complexities
Consolidating authority for senior services was a complex process. In order
to divide Medicaid budget and policy authority between NJDHSS and the New
Jersey Department of Human Services (NJDHS), the two departments negotiated an
interagency agreement, which was approved by the federal Centers for Medicare
& Medicaid Services (formerly known as the Health Care Financing
Administration). The federal government permits states to treat Medicaid more
as a funding stream than as a functional program. States can divide
responsibility for Medicaid between two or more agencies through several
mechanisms. New Jersey chose to make NJDHS the "single state Medicaid agency"
to coordinate the paperwork flow between the state and the federal government.
Through an interagency agreement, NJDHS assures that all documents are
completed in the form and process required by federal law. But NJDHSS has "the
authority to establish the State's policy regarding care for its seniors,"
including budget authority over all Medicaid funds for senior services. In
addition, the U.S. Administration on Aging designated the new department as
the single state agency for services provided under the Older Americans Act
(NJDHSS 1997). Federal officials agreed to these changes after several
high-level meetings.
Two aspects of this decision to split Medicaid policy and budget
responsibility between two cabinet-level departments were particularly
problematic. First, from an administrative perspective, the two departments
needed to determine the most efficient way for NJDHSS to "subcontract" certain
services that would be inefficient if split—services like information systems,
claims processing, and fraud and abuse investigations. Second, from a policy
perspective, the split between services for seniors and people with
disabilities was sensitive. Which programs were primarily serving which group
of people? The goals of policy and program consolidation might have been
better served by consolidating both the Medicaid and state-only services for
seniors and people with disabilities. But the governor's office had focused
only on older adults. Without consulting people with disabilities, the
governor's office determined that consolidation should be confined to senior
services and programs. Since Oregon had first consolidated senior services and
later included services for people with disabilities, the governor's office
felt it would be prudent to begin with senior services and reevaluate the
decision later. Several years later, Governor Whitman established an Office of
Disability in the New Jersey Department of Human Services.
Although limited only to senior services, New Jersey policymakers agreed
this consolidation was a good starting point to help many people who need
long-term care find the information and services they need to make reasonable
personal choices. The state legislature passed a resolution approving
consolidation of senior services. The public concurred during regional
meetings convened by area agencies on aging and their citizen advisory
committees. The meetings stressed the need to help older adults and their
families find information and assistance early enough to use their personal
resources wisely and to find public support that would let them stay in their
homes and communities whenever possible.
Reorganization of all senior services into one cabinet-level department
appeared to raise the level of the policy debate about home- and
community-based care for older adults and caregiver support for their
families. The governor could now hold one department accountable for
developing new programs and announce those programs county by county. She held
roundtable discussions with older adults and their family caregivers and
included their issues in her annual State of the State addresses to the
legislature and the general public.
Organizational Cultures
Another major difficulty in consolidation was integrating staff from the
Medicaid, Older Americans Act, public health, and survey-certification
departments. Each group had its own perspective or organizational culture:
- The philosophy of the staff that administered the Older Americans Act
was in many ways the strongest call to action. This staff believed that all
older adults, regardless of income or frailty, should have access to
services that promote independence. They wanted to focus on older adults'
ability to contribute to society as a whole. They wanted information and
assistance for long-term care. But they also wanted information about
employment, educational opportunities, and volunteer activities like reading
to children.
- The staff from the Medicaid culture understood the public investment in
long-term care and was vigilant about budget and accountability mechanisms
to safeguard the public's trust.
- The public health staff members were "upstream" oriented. They wanted to
promote self care, prevent disability, and restore function to all older
adults, whatever the setting.
- The survey and certification staff continually spoke of quality. With
the staff of the Ombudsman and the Public Guardian, they concentrated on the
most vulnerable citizens who required protection by the state.
All these goals are noble. They also embody conflict. For example, it is
not always possible to promote independence and protect people from the harm
that can come from their own choices. It is very stimulating and important to
hear discussions among survey staff and Ombudsman staff—who are mandated to
protect public safety—and State Unit on Aging staff, who fiercely defend the
older adult's right to make decisions, even when the decisions are rejected by
families and neighbors. As staff members reflecting these varied perspectives
came together, there were many debates and months of intense discussions.
Those discussions shaped subsequent policies about adult foster care, assisted
living, consumer-directed home care, health promotion, caregiver support,
respite services, and adult protective services. The overriding mission—to
promote independence, dignity, and choice for all older adults—helped to forge
consensus. It was also helpful that the governor's office expected the staff
to iron out differences internally and offer coherent policies and programs
that would be embraced by the public and the legislature.
The best measure of this merger of philosophies and programs is the actual
shift of long-term care from an almost exclusive investment in nursing homes
to more home- and community-based options. The major question is whether
reorganization helps achieve this goal. At a minimum, a rebalanced system
helps people who would otherwise have entered an institution to receive care
in the community instead; ideally, the system also supports people who are
unlikely to need a nursing home but who do need services in order to remain at
home.
Authority and Accountability
The policy rationale for consolidation is that it lets a governor hold one
commissioner or secretary accountable for rebalancing. In most states, the
authority and accountability for programs and budgets are diffused among three
or more government agencies. Even states that have created a separate
cabinet-level department of aging, like Pennsylvania and Maryland, do not
grant these cabinet officials policy and budget authority for long-term care
for seniors. The officials do not have authority over the nursing home budget.
They do have administrative responsibility for "waiver" programs that provide
home care services to people who are eligible for nursing home care under
Medicaid. But it is the Medicaid agency that has the final authority. This is
very different from Oregon or New Jersey. In Oregon and New Jersey, the
officially designated single state Medicaid agency processes the paperwork for
the Centers for Medicare & Medicaid Services because other state agencies
have the policy and budget authority over programs for older people and people
with disabilities, not just "delegation" authority to administer programs on
behalf of the single state agency.
It is difficult to shift funding among departments without clarifying the
policy and budget authority vested in each department. Typically, the single
state Medicaid agency feels that the aging agency does not respect its fiscal
responsibilities and that the experts on aging will "give it all away."
Conversely, the aging agency's experts think their Medicaid colleagues do not
spend money creatively so that more people can live in their homes and
communities. These competing voices make it difficult to advance a single,
consistent, convincing argument for rebalancing long-term care. One goal of
developing a consolidated department for senior services is to align the
"creativity" of the aging community with the "accountability" of the Medicaid
community. The governor finds both perspectives in one place. Those who
advocate change have to deliver on the budget for change.
New Long-Term Care Options
Bringing both the Medicaid and aging-agency perspectives to the licensing
staff in New Jersey stimulated new thinking about services. The consolidated
senior services division invested much of its energy in developing an
infrastructure for long-term care that included new options for older adults
regardless of income.
Assisted Living
Regulations for Assisted Living led to a major growth of this new option in
1996. The regulations for it developed from a consensus among consumer
advocates, state regulators, and providers, including nursing home providers.
(New Jersey's assisted living regulations are available at http://www.state.nj.us/health/ltc/regnjac836.pdf.)
They support a nursing home substitute framework for consumers who want to age
in place in residences that offer increasing levels of care as the consumer's
needs change. This long-term care option has grown dramatically—from 1,082
beds in 1996 to 14,956 beds in 2002.
As in most states, most older adults in assisted living residences are
paying privately. However, in 1996 New Jersey obtained federal approval of a
1915(c) Medicaid waiver to pay for care in a licensed assisted living
facility. This waiver gave NJDHSS a new way to help people leave nursing homes
for other settings or to avoid nursing home placement altogether. Senior state
officials visited reluctant assisted living providers to encourage them to
become Medicaid providers. Recent legislation mandates that all new assisted
living facilities make at least 10 percent of their beds available for
Medicaid beneficiaries, assuming there are enough waiver "slots" to meet this
demand. Currently, 1,741 New Jerseyans receive support from Medicaid to live
in assisted living facilities.
Adult Family Care
Adult Family Care regulations created another new option. This alternative
has grown slowly because state law required adult family care providers to
register as boarding homes if they cared for more than one unrelated adult.
The state found that people who might otherwise be interested in providing
care to two or three people did not want to be boarding home operators. Based
on the example of adult family care in Oregon and other states, New Jersey
officials worked with the legislature and stakeholders to enact legislation in
January 2002 that removed the barriers to growth for this program. State law
now permits adult family care providers to obtain a license to care for up to
three people without becoming boarding home operators. Older adults who choose
adult family care can pay privately or receive this service through a 1996
Medicaid waiver or state funding.
Senior Initiatives: CAP and JACC
For two years (1996–98), NJDHSS leaders met with consumers, providers,
county officials, state legislators, and members of the governor's planning
and budget offices to develop a set of new or expanded programs that would
help rebalance long-term care. The Senior Initiatives announced in 1999
introduced new home care programs—the Caregiver Assistance Program (CAP) and
Jersey Assistance for Community Caregiving (JACC)—to help older adults remain
at home, even if they are not eligible for Medicaid. The Senior Initiatives
also provided family caregivers with more respite care and training to manage
their responsibilities. State staff would counsel nursing home residents about
all of their options through the new Community Choice Counseling program
described below. Because nursing homes will continue to be necessary, perhaps
on a smaller scale, the state seeks innovation that will improve the quality
of care and the quality of life in nursing homes. That is why the state
launched a pilot program to promote the Eden Alternative, which supports
nursing homes that want to improve residents' quality of life.
Created by NJDHHS leaders, these Senior Initiatives were embraced by
Governor Whitman, who included funding for them in her 1999 budget address to
the legislature and public. The Governor's Advisory Council on Elder Care,
chaired by Assemblywoman Carol Murphy, also endorsed the initiatives.
In 1999 the legislature approved the Senior Initiatives plan for $60
million in new state and matching federal dollars to be used over three years.
These new funds were not taken from the annual nursing home budget, which
remains a separate budget category. Unlike Oregon, which has a "global budget"
for long-term care, the NJDHSS cannot move money from the nursing home account
to fund home- and community-based programs without permission from the
legislature.
The Medicaid, Older Americans Act, and state-funded programs were designed
to allow people of all incomes to get the help they need, according to their
ability to pay for that care. The programs in the Senior Initiatives "fit
together" using different funding streams—creating "seamless" support for
everyone.
The Senior Initiatives included two new home care programs that offer more
flexible services, including consumer-direction policies that let older adults
hire family members, neighbors, and friends to provide paid care at home. The
first new home care program is the Caregiver Assistance Program (CAP). CAP, a
Medicaid waiver service, is meant to help older adults—and younger adults with
disabilities—remain at home and direct their "client-employed providers,"
including family members and friends. To qualify for CAP, participants must
require a "nursing home level of care." Registered nurses employed by the
state assess the person's health needs and functional impairments to determine
whether she or he is entitled to receive a nursing home level of care, at
home, through Medicaid. Available services include environmental accessibility
adaptations, home-delivered meals, personal emergency response systems, and
caregiver training, in addition to more traditional services like attendant
care and case management.
This new home care program, CAP, was blended with the Medicaid waiver
program for Assisted Living and Adult Family Care, a program funded under a
Medicaid waiver that had been approved in 1996. NJDHSS considered the in-home
component (CAP) and the residential component (Assisted Living and Adult
Family Care) a single "Enhanced Community Options" waiver program.
Beneficiaries can therefore move easily from home care to residential care
without leaving one program to enter the other (see Figure 1).
Figure 1. Assisted Living (AL)
and Adult Family Care (AFC)—Medicaid
The second new home care program in the Senior Initiatives package is
Jersey Assistance for Community Caregiving (JACC). JACC is a state-financed,
sliding-scale program designed to mirror the Medicaid-financed CAP for persons
60 years of age or older. That is, CAP and JACC have the same "nursing home
level of need" eligibility requirements and offer the same set of services,
including the consumer's ability to direct "client-employed providers" like
family members, neighbors, friends, and others. As noted earlier, JACC is
meant to provide seamless service to older adults who may at first be able to
pay for some services privately, but may later require more public support
through Medicaid. The goal is to ensure that no older adults are told they are
ineligible for services. The message is, "We can help you get the services you
need, and we can help you pay for them if you cannot afford them." Older
adults can purchase care on a reasonable "cost-share basis."
These two new programs, CAP and JACC, were added to the existing programs,
which had been transferred to NJDHSS in the 1996 consolidation. Blending the
new in-home programs with the Community Care Program for the Elderly and
Disabled (CCPED), a Medicaid waiver program that began in the early 1980s, has
been problematic (see Figure 2). In half of New Jersey's counties, home care
agencies are case managers for CCPED beneficiaries, having subcontracted with
the state; in the other half, county agencies serve this role. These agencies
had long ago successfully lobbied against the original cost-sharing
requirement for CCPED. Therefore, CCPED participants pay no part of the cost
of their care but are eligible for fewer services and cannot hire and direct
nonagency providers like family and friends. State staff members report that
consumers are confused by differences between the old and new programs. Local
and government staff also encounter administrative complications; there is
anecdotal information that people switch between programs to save money even
though they may want the newer services. The state has not yet analyzed such
information.
Figure 2. Community Care Program
for the Elderly and Disabled (Medicaid Waiver from the 1980s)
New Ways to Inform Older Adults about Long-Term Care Choices
In addition to the new home- and community-based services, NJDHSS created
two new programs to help older adults and their families understand and choose
among the long-term care options it was creating. As mentioned above, New
Jersey Easy Access, Single Entry (NJEASE), planned with a grant from the
Robert Wood Johnson Foundation, helps people find information by phoning a
single number that leads them to aid at the local level. The Community Choice
Counseling Program helps people in nursing homes to get information about
other options and to return to their homes and communities when possible.
NJEASE
NJEASE was developed in two phases. In Phase I, protocols and arrangements
were established at the local level to make sure that older adults and their
families could call one number and get a trained professional who would ask
consistent questions and know how and where to direct that caller for more
help. These tasks are consistent with the responsibilities of the area
agencies on aging. However, the counties needed more training, more protocols,
and better information systems in order to provide consistent information and
referrals. Phase I focused on these tasks.
In 1996, Phase I of NJEASE was launched in four counties—Ocean, Union,
Morris, and Atlantic. By 2000, all 21 counties had started Phase I, and the
state had set up a national toll-free number (Reinhard and Scala 2001). There
was no state legislation to create NJEASE, no mandate to choose a particular
county agency to serve as the NJEASE office, and little money for this phase.
Each county selected its county office on aging (also the designated federal
area agency on aging) to serve as the lead NJEASE agency. There were some
other early contenders, such as home health care agencies and county boards of
social services, but the area agencies on aging succeeded in gathering support
at the local level.
Phase II of NJEASE involves more complex organizational capacity and
development. Phase II tasks move from information referral to more
sophisticated forms of assistance and case management, including the
responsibility to manage budgets for home- and community-based services using
all funding streams from Medicaid, the Older Americans Act, the Social
Security Block Grant, state casino revenues, and elsewhere.
New Jersey's 21 counties have a long history of local control. Their
agencies differ in their infrastructure and their capacity to provide case
management. Developing a sophisticated "single point of entry" system in Phase
II has therefore proved challenging. The NJEASE mission is to ensure that
older adults and their families can get the full range of services they need
by calling the toll-free number that is directed to the local NJEASE office.
Some callers merely need information. Others may need a thorough assessment of
their needs and resources. Each county's NJEASE office should have care or
case managers with authority to enroll consumers in home- and community-based
programs, including Medicaid waiver programs, and the managers should be
well-trained and accountable. Accomplishing this requires major shifts in
policy and budgeting, a process that is continuing.
Community Choice Counseling
Because many older adults enter nursing homes directly from hospitals,
without understanding their other options, NJDHSS created a Community Choice
Counseling pilot program in March 1998 (Reinhard, Howell-White, and Quinn
2001). Now a statewide program, Community Choice Counseling helps nursing home
residents explore community-based alternatives. It provides information about
in-home services, housing alternatives, and community programs. At first the
state tried to assign counselors to hospitals for the purpose but found that
there was not enough time to counsel older adults and their families in an
acute care setting. After a hospital-based pilot program in 2000, the
Community Choice Counseling staff recommended that they concentrate on nursing
home residents, including those who are newly admitted on Medicare but are
likely to remain for longer stays unless they receive the information and
support they need to return to their homes and communities. Most counseling
now occurs in nursing homes.
Since its inception, Community Choice counselors have helped more than
4,000 people move from nursing homes to private homes, senior housing, or
assisted living residences. Although the counselors devote most of their
attention to people who have lived in a nursing home for less than a year,
they have also helped transfer people who have lived in one for as long as
nine years (Reinhard, Howell-White, and Quinn 2001). The state now employs 29
primary nurses to provide this counseling. However, hiring freezes in 2002 may
reduce this workforce.
An evaluation of the Community Choice Counseling program found that the
counselors see themselves as educators and advocates, helping older adults and
their families understand and act upon their long-term care choices (Palmer
and Howell-White 2001). Most people who made these choices left nursing homes
and returned to a home or apartment with no unmet needs (Howell-White, Palmer,
and Bjerklie 2001).
Outcomes of the
Consolidation
Analyses by the New Jersey Department of Health and Senior Services show
that the consolidation of senior services in one department led to a concerted
effort to develop polices and programs that allow more older adults to choose
to live at home and in communities instead of in nursing homes. This effort
has contributed to a steady rebalancing of public resources from institutional
to home- and community-based long-term care.
The department selected its "rebalancing" measures in 1996 and began
tracking them in July 1996, during state fiscal year 1997. In that fiscal
year, 92.7 percent of public funds for older adults' long-term care was spent
on nursing homes and 7.3 percent for home- and community-based options. In
fiscal year 2002, funding shifted to 84.7 percent for nursing homes and 15.3
percent for home and community care (see Figure 3). The FY 2003 budget
allocates 82.8 percent of the long-term care dollars for nursing homes and
17.2 percent for home- and community-based care.
The measures (or indicators) that New Jersey selected to track include the
state share of the Medicaid budget for all nursing home care, medical day care
(adult day health services), the state-funded home care program (JACC), and
the largest home- and community-based Medicaid waivers for which NJDHSS has
policy and budget responsibility (including home care and assisted living).
These waiver programs primarily serve older adults but include services for
people with disabilities; waivers that primarily serve younger persons with
physical or developmental disabilities are not included here. The measures
also include Older Americans Act funding, and these state-funded programs: the
Alzheimer's program for adult day health care, the Safe Housing and
Transportation program, the Congregate Housing program, the Home Care
Expansion program, and the Statewide Respite Care program for the informal
caregivers of persons who might otherwise be placed in nursing homes.
Figure 3. New Jersey Department
of Health and Senior Services Long-Term Care Funding Allocation (State
Share)
Figure 4 shows that the number of Medicaid beneficiaries in nursing homes
was reduced by more than 3,000 people from FY 1997 to FY 2002, a 10 percent
reduction. Note that nursing homes did not receive less money during this
period, even though their census declined and state spending on home- and
community-based care rose. Specifically, $549 million of state funds were
allocated to nursing homes in FY 1997 and $632 million in FY 2002, due in part
to cost-of-living increases built into the nursing home rate-setting system.
That means an $83 million increase in state funds for nursing homes over five
years, despite the lower census (a $166 million increase in state plus federal
funds despite 3,000 fewer residents). The nursing home budget would have grown
at an even steeper rate had the census not consistently declined: at
approximately $50,000 per year for a nursing home placement, New Jersey would
be spending $75 million more in state funds ($150 million total funds). In
addition, the declining census indicates that "backfill" (nursing homes fill
the empty beds) did not occur in New Jersey.
Figure 4. Reduction in NH
Census
As the nursing home census of Medicaid beneficiaries has decreased, the
number of people in Medicaid- and state-funded home- and community-based
programs has steadily increased. Figure 5 summarizes caseload growth for all
the home- and community-based programs that NJDHSS tracks.
Figure 5. Average Monthly
Caseload: Home- and Community-Based Services Programs
New Jersey's officials are pleased with this rebalancing trend, although
they acknowledge that the state lags behind others that consolidated senior
services years ago—like Oregon and Washington (O'Connor 2002). The state
tracks its progress by using selected measures, making it difficult to compare
New Jersey to other states. Recent analyses of states' Medicaid expenditures
for 1915(c) home- and community-based waivers from federal fiscal year 1995
through federal fiscal year 2000 show that New Jersey ranks 37th in the
country in the percentage of its Medicaid long-term care funds spent on home
services. New Jersey spends 19 percent of its Medicaid long-term care budget
on home services. Oregon spends 61.9 percent, Washington 44.9 percent, Kansas
42.3 percent, and Michigan 23.4 percent (Eiken and Burwell 2001). However,
almost three-fourths of these expenditures go to support people with mental
retardation and other developmental disabilities.
Looking only at home- and community-based expenditures per person aged 65
or older, New Jersey ranked 19th in the country in 1999. However, even these
data are not always helpful in comparing states to one another. For example,
New York ranked number one, spending $1,710 per person aged 65 or older. But
because New York also spends the most on nursing homes, its percentage spent
on home- and community based care—34 percent—is less impressive than the
percentages found in Oregon (62%), Vermont (54%), or Kansas (42%) (Eiken and
Burwell 2001). Alaska has a different situation. It ranks second to New York,
spending $1,221 per person aged 65 or older, but it uses state funds for
"Pioneer" nursing homes that are licensed as assisted living facilities
because they do not meet Medicaid's nursing home requirements. Despite the
limitations of available national data, New Jersey ranks in the upper half of
states in its spending on home- and community-based care per older adult when
it is compared to states that devote at least 40 percent of their long-term
funds to home- and community-based care, states that have consolidated senior
services into one agency, and states that are located nearby. New Jersey
spends more than Michigan, but less than Oregon, Washington, and Kansas (see
Figure 6).
Figure 6. Home- and Community-Based Services Expeditures
per Person Age 65 and Older (1999)
Selected States with
Rankings
Another "rebalancing" measure that invites national comparisons is nursing
home occupancy. As older adults get more long-term care options and states
provide more funds for them, nursing home occupancy tends to decline. New
Jersey's occupancy declined from 94 percent of all beds in 1996 to 89.7
percent in 1999. However, declining occupancy is a national trend, and New
Jersey still exceeds the 1999 national occupancy level of 82.7 percent. New
Jersey currently uses a target occupancy of 85 percent in computing nursing
home rates, to encourage facilities to control costs and to use their licensed
beds. Nursing home care remains the most expensive option (see Box 3).
Box 3. Comparative Costs of LTC for Older Adults in New
Jersey
Average monthly cost per person, nursing home, state-federal funds
FY
1998
$3,245
FY
2001
3,821
Average monthly cost per person, assisted living
residence 1,551
Average monthly cost per person, adult foster
care 1,283
Average monthly cost per person, new home care programs
CAP
(Medicaid), 50% state/50% federal
funds 1,106
JACC, state
funds 492
|
Remaining
Challenges
New Jersey's long-term care rebalancing efforts are steadily proceeding,
having already more than doubled the percent of long-term care spent on older
adults in home- and community-based, rather than nursing home, care—from 7.3
percent in state fiscal year 1997 to 15.3 percent in state fiscal year 2002.
The projection for state fiscal year 2003 is 17.2 percent. The number of
persons on Medicaid in nursing homes dropped by more than 3,000 people, a 10
percent reduction.
The data point to two important policy concerns. First, New Jersey still
expects to spend more than 80 percent of the dollars earmarked for long-term
care of older adults on institutional care. If it wants to join states like
Oregon, Washington, Colorado, and others that are above average in the percent
of public funding for home- and community-based care, New Jersey still has a
long way to go. The most progressive states spend more than 40 percent of
their long-term care funds on home- and community-based care (Eiken and
Burwell 2001). Second, New Jersey needs to develop measures that help track
progress in a national context. It is important to distinguish between change
that results from state policies designed to advance home- and community-based
long-term care on one hand and, on the other hand, a national trend affecting
even states that are not dedicated to rebalancing like declining nationwide
nursing home occupancy rates.
New Jersey faces a number of challenges in accelerating change. They
include: (1) the implementation of NJEASE; (2) the inconsistent policies among
Medicaid waivers and services and caps on some of these services; (3) the
economic constraints that states are facing; and (4) the fragmentation of some
home care programs between NJDHS and NJDHSS. Stronger tracking and
accountability systems are also necessary.
NJEASE Implementation
The state sought to develop a locally based infrastructure to serve as a
single point of entry for information and services for older adults. Two major
problems in implementation have arisen. First, too few consumers and providers
know how to get help through NJEASE, despite a six-month statewide advertising
campaign promoting the service and the national toll-free number. A single ad
campaign is unlikely to educate the public as a whole or to change its
habitual ways of seeking help overnight, but getting money for more
advertising is difficult in the current economic climate. Reliance on nursing
homes remains strong, in part because physicians and hospital discharge
planners are already familiar with institutional options and find home- and
community-based options more complicated to arrange.
The second problem is that counties' implementation of NJEASE is uneven in
scope and quality. Phase II of NJEASE, providing care management and access to
newer and older home- and community-based programs, required more
infrastructure development than just providing uniform information as in Phase
I. Many county offices on aging had to hire staff and train care managers in
the intricacies of Medicaid waiver eligibility policies and procedures. In
addition, half of the counties had no responsibility for one of the oldest
Medicaid waiver programs, CCPED, the Community Care Program for the Elderly
and Disabled. For many years, the negotiations between the NJEASE agencies and
home care agencies regarding care management for CCPED have varied from county
to county. The goal is to ensure that every NJEASE agency can provide care
management for older adults under Medicaid programs, the Older Americans Act,
state-funded programs, and private-pay options. Such local arrangements are
crucial in developing an infrastructure that works well for consumers while
being accountable to the state for its use of funds.
This Phase II NJEASE infrastructure development is complex. Counties that
were able to work with the state and local stakeholders to organize a stable
structure moved most quickly in offering the new home care programs. Counties
that had difficulty hiring and training new case managers and learning how to
manage the data required for the Medicaid home care programs were slower to
implement Phase II. Some of the Senior Initiatives programs began more slowly
than anticipated, partly because of this uneven infrastructure development.
The two new home care programs, CAP and JACC, were developed by NJDHSS leaders
in the fall of 1998, announced by Governor Whitman in an address in January
1999, authorized through the budget approved by the legislature in June 1999,
and actually implemented in 2000. Enrollment was slow until 2001, as state
officials oriented the various NJEASE offices, which had to develop their care
management capacities to carry out the new programs.
Inconsistent Policies among Services
Inconsistent policies among the Medicaid waivers and services are another
important problem. For example, New Jersey's new in-home programs require a
copayment, but older ones do not. This inconsistency undermines the goal of
seamlessness between programs. Consumers seem to switch from the new program
(CAP) to the older program (CCPED), whenever a slot becomes available, even
though CCPED is less flexible and does not let consumers hire nonagency people
like family and friends. Consolidating these waiver programs may resolve the
issue, so that older adults have as much flexibility as possible. To do this,
the state will need to decide whether or not to continue requiring the
consumer to share the costs of home care programs.
Another contradictory policy is the "nursing home level of care" threshold.
It is not clear in the state Medicaid regulations and is inconsistently
interpreted in the home care programs at the local level. Other Medicaid
long-term care "state plan" services—like personal care or medical day care
(adult day health services)—do not fit smoothly into the state's vision for
long-term care choices. For instance, it is not clear whether
Medicaid-financed medical day care should be authorized as an "early
intervention" program for seniors who are independent in most or all
activities of daily living, to prevent the need for residential long-term
care. The recent caseload growth in medical day care has New Jersey officials
asking fundamental questions that should be discussed with consumers and other
stakeholders. Should older adults who need social activities more than
health-related services be entitled to a Medicaid program? Or do state and
local officials and providers need to develop other options for social
programs?
Economic Constraints
Like most states, New Jersey faces falling state revenues and rising budget
pressures, particularly in health and long-term care (Coleman et al. 2002). It
will be difficult to add new dollars for program development. However,
long-term care innovators in states like Oregon and Maine recall that they
made the greatest progress toward more home- and community-based care during
economic downturns. That is because downturns may overcome traditional
resistance to change. When governors and legislators have to question
everything in the budget, everything is on the table (Ladd 2001; Gianopoulos
2002). Those who have a reasonable plan to use long-term care dollars more
efficiently can be heard.
Continued Fragmentation and Limits on Some Services
Consolidation itself has caused some discontinuity in policies. While most
services for older adults—including adult day health services—were
consolidated in NJDHSS, the responsibility for most state plan services (e.g.,
home care, personal care, hospitalization; as opposed to waiver services in
lieu of nursing home care) remained in NJDHS. During the administrative
consolidation of services in 1996, NJDHS cited internal statistics showing
that most beneficiaries of home care and personal care were younger than 60
years old. Since consolidation did not include services for younger people
with disabilities, NJDHS retained jurisdiction over these services. Home care
industry representatives note that some confusion and conflicting policies
appear to have resulted. They also cite a lack of communication between the
industry and the state, particularly NJDHSS, and the need for higher
reimbursement rates for home care service providers. The workforce shortage is
another critical concern that both departments need to address, preferably in
concert.
The enrollment cap in some waiver programs, particularly the assisted
living and adult family care programs, limits the chance to rebalance
long-term care. The state's fiscal 2003 and 2004 budgets do provide for an
expansion of this program, but demand is high and the waiting list is growing.
Community Choice counselors rely on assisted living as an important option for
people who choose to move from a nursing home to their own homes or a more
home-like setting. The success of Community Choice Counseling is threatened by
caps on enrollments in home- and community-based waiver programs.
Tracking and Accountability
Finally, data tracking and accountability mechanisms at the state and local
levels are underdeveloped. The state designed a Comprehensive Assessment Tool
(CAT) to collect uniform data on consumers' needs and resources (Reinhard and
Scala 2001). This kind of universal preadmission screening instrument for
people seeking long-term care is essential to transforming the delivery
system. As progressive states like Oregon, Washington, and Maine have found,
it is important to assess the person's needs and ability to perform the
activities of daily living in order to discuss all of the consumer's options.
In Maine, nurses working for the state conduct free online electronic
assessment of care needs and eligibility for public payment for services for
anyone who asks for it. They also use a universal screening tool to assess
people in nursing homes regularly. By using an instrument with consistent
criteria, Maine has been able to help people find services in and out of
nursing homes. The state has reduced the nursing home population and used a
significant portion of its savings to finance alternatives to nursing home
placement. Today 39 percent of Maine's long-term care budget goes to home- and
community-based care, up from 16 percent in 1995 (Gianopoulos 2002). Maine
officials consider the universal screening instrument and good data systems
essential to redesigning long-term care (Gianopoulos 2002; Concannon 2002).
New Jersey officials had consulted their colleagues in Maine, Oregon, and
Washington to develop the Comprehensive Assessment Tool (CAT). They intended
to use the CAT in all NJEASE and nursing home preadmission offices to learn
more about older adults' long-term needs in order to design services to meet
them. Officials also wanted to computerize the CAT data and link them to
financial databases so that NJEASE officials and state program managers could
follow individuals from one setting to another and funding could follow
people. This data system is not yet in place.
New Jersey also needs to track service quality and consumer satisfaction
from setting to setting. The state does have a survey team that conducts
annual assisted-living inspections and investigates complaints, and this team
is considering conducting and publishing consumer satisfaction surveys. The
external Community Choice Counseling evaluation has also been a way to monitor
results and satisfaction. Like all states, New Jersey needs to continue to
monitor quality of care and quality of life and to develop new ways to bring
the consumer's voice into that evaluation.
Recommendations
for the Future
New Jersey
New Jersey continues to seek a better balance of institutional and
community care options for older adults who need long-term care. The State has
invested six years in developing a state and local infrastructure and funding
several new programs to improve that balance. NJDHSS data document progress,
but both state and local officials report several remaining problems. To move
closer to an "above average" nationwide rank, the state should reiterate its
commitment to a more consumer-oriented system and evaluate its programs,
policies, and structures. Although speaking only for ourselves, we offer these
recommendations for that evaluation. Although they are specifically meant for
New Jersey, they may be instructive to policymakers engaged in reforming
long-term health care in their own states.
First, New Jersey should evaluate the current status of NJEASE and its
implementation. The state should analyze the political nuances of attempting
to change a county-based system in a state whose 21 counties are accustomed to
strong local control. The evaluation should involve both the NJEASE directors
and consumers to build a base for a change in direction, if change is needed.
One of the first steps in this evaluation is to choose one or two NJEASE
offices that are implementing Phase II by providing substantial case
management of the home care programs and then examine which policies are
working for consumers and providers and which are not. In particular, the
state should analyze the effects of inconsistencies among Medicaid waivers,
such as copayments for some programs and not others. Critical policy and
technical details must be identified and addressed to improve program
implementation.
Second, New Jersey should encourage consumers and principal stakeholders to
formulate statewide policy, with accompanying strategies, to emphasize the
types of long-term services and residential settings that people need and
prefer. There are two complementary reasons to renew this dialogue—a new
administration and new ideas. Governor James E. McGreevey, who took office in
January 2002, has a strong interest in health and senior services. New
governors need fresh thinking to set the course for their terms, and there are
fresh ideas in the long-term care field about how to bring more services into
senior housing and how to give consumers greater control over them. The state
can benefit from discussions about the future of nursing homes, assisted
living, adult family care, home care programs, family caregiver support, and
all other long-term care choices.
Third, the state should reexamine the structural and policy foundations for
the consolidation of senior services. It should evaluate the interagency
agreement between NJDHSS and NJDHS, and its implementation, so that New Jersey
efficiently and effectively rebalances long-term care. In particular, the
state should improve the coordination of policies, programs, and financing for
home care and services for people with disabilities.
Finally, New Jersey should develop a comprehensive data tracking system to
improve accountability and provide a consistent "scorecard" to measure
progress. This scorecard can include New Jersey selected measures, which help
NJDHSS staff and other state officials monitor and improve their performance.
However, the scorecard should also include measures that make it easier to
compare New Jersey's progress to national trends.
National Implications
While each state is unique in its history, economy and social commitments,
the aging of America is a universal reality that affects every state's public
policies. Certain aspects of New Jersey's experience have national relevance.
In any state that wants a fundamental shift in its delivery of long-term care,
policymakers must:
- Encourage a civic process that engages people and lets them express
their preferences. This discussion helps create a groundswell for
change—although focused, sustained leadership by a few champions of change
is essential. In some states, like Oregon, senior advocates who pushed a
bill through the legislature was the driving force for change. In New
Jersey, leaders in the executive branch galvanized change and sought
advocates and legislators who would endorse the necessary programs and
financing. In both states, engaging and retaining the support of advocacy
groups like AARP, the Older Women's League, the Alzheimer's Association, and
the local Advisory Councils on Aging helped overcome resistance to change.
- Identify the champions. Many forces can create the impetus for change.
But talented, committed leaders must make sure that vision and energy are
channeled into substantive results. A few visible champions are needed to
keep the issues in the limelight. The most effective champion is a governor
who will lead the change. Consolidation of services for older adults into
one state department draws attention to the issues and increases
accountability. Yet, regardless of the administrative structure, dedicated
leaders are most critical.
- Develop and support staff members. Regardless of the driving force for
change, knowledgeable, creative staff in the executive branch must devise
and coordinate policies and programs. It takes time to develop a policy or
program from a concept to a reality. Sustained leadership and staff efforts
are vital. The recent nationwide trend toward early retirements by public
officials and limited funds to recruit talented new leaders and to train new
staff for senior services are major obstacles to change.
- Develop a clear statement of underlying values to help focus the policy
process. New Jersey uses "independence, dignity, and choice."
- Recognize that these values mean little without actual services and
access to them. Nursing home care will continue to be needed, although it
may be scaled down. However, some of the most impaired older adults now live
in their own homes (Borrayo et al. 2002). These people need services there,
otherwise they will be forced into institutions.
- Leverage consumers' desire to remain at home and the state's desire to
minimize expensive institutional programs as complementary, formidable
forces for change.
- Understand that long-term care reform is multifaceted. It includes
health promotion, disease prevention, and regulatory reform—as well as
expansion of home- and community-based services. It also requires developing
and retaining a qualified, committed workforce.
- Use Medicaid waivers and additional state dollars creatively to expand
home- and community-based services to help older adults at all income
levels. Develop "seamless" waiver programs with consistent eligibility
criteria and uniform consumer-contribution requirements.
- Develop user-friendly local structures, close to the consumer. They are
an important factor in making choices real, regardless of the person's
income. Even people who are not poor should know that they have a place to
call for "one-stop shopping"—help in finding affordable services. People
should not be told dismissively, "You are not eligible for services."
Instead they should hear, "Let me help you figure out what you need and
where to go to get that help."
- Develop a universal preadmission screening tool to assess the needs of
people seeking long-term care. Developing the tool, and the process for
using it, may be complex, but other states' models can serve as guides.
- Acknowledge that state activities are constrained or allowed by federal
statutes, regulations, and interpretations. The Older Americans Act,
Medicare, and Medicaid provide the bulk of public funding for long-term care
and have a major impact on its structure. Differing eligibility standards as
well as regulatory idiosyncrasies make it hard for consumers, providers, and
state policymakers to develop or access complementary kinds of care.
However, much can be done even within these limits.
- Examine the issues in integrating services for older adults, younger
people with disabilities, and people with developmental disabilities (Donlin
2002). The Supreme Court's 1999 Olmstead decision regarding
community-based services for people with disabilities, and the states'
responses to it, tend to focus on younger persons with disabilities.
However, older adults are also seeking more control over their care, a trend
that will grow as the "baby boomers" age.
Summary
States that want to proactively shape policies and programs to help older
adults live as independently as possible in their preferred environments can
make significant progress toward that goal. A few states, like Oregon and
Washington, have led the way for decades. Other states, like New Jersey,
demonstrate that it is possible to change the direction of long-term care—step
by step, year by year.
The economic constraints that states currently face make it more important
than ever to examine how long-term care dollars are spent. Some of the most
progressive states made their most significant progress during economic
downturns because policymakers were willing to listen to new ideas. Leadership
is critical, and dialogue with the public is important to shape long-term care
to meet the needs of those who may use it.
References
AARP. 2000. Across the States 2000: Profiles of Long-Term Care
Systems, 4th ed. Washington, D.C.: AARP Public Policy Institute.
Borrayo, E.A., J.R. Salmon, L. Polivka, and B.D. Dunlap. 2002. Utilization
across the Continuum of Long-Term Care Services. Gerontologist
42(5):603–12.
Braunstein, D. 2002 (May 10). Personal communication from the Program
Director of Health Policy Studies, National Governors Association, Washington,
D.C.
Coleman, B., W. Fox-Grage, D. Folkemer, and H. McKay. 2002. State
Long-Term Care: Recent Developments and Policy Directions. Denver:
National Conference of State Legislatures.
Concannon, K. 2002 (October). Personal communication from the Commissioner
of the Maine Department of Human Services, Augusta, Maine.
Donlin, J.M. 2002. Long-Term Care and the U.S. Supreme Court's Olmstead
Decision. NCSL State Legislative Report 27(7). Denver: National
Conference of State Legislatures.
Eiken, S., and B. Burwell. 2001. Medicaid HCBS Waiver Expenditures, FY
1995 through FY 2000. Boston: MEDSTAT Group.
Gianopoulos, C. 2002. Long-Term Care Reform: Maine's Experience.
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National Conference of State Legislatures regional meeting, Naples, Florida,
September 14.
Howell-White, S., S. Palmer, and J.R. Bjerklie. 2001. Community Choice
Counseling: A Survey of Former Nursing Home Residents Discharged after
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Health Policy.
Kane, R.A., R.L. Kane, and R.C. Ladd. 1998. The Heart of Long-Term
Care. New York: Oxford University Press.
Ladd, R.C. 1997. State Strategies and Methods Used to Balance Long-Term
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and Associates.
Ladd, R.C. 2001. Presentation to the Balancing Long-Term Care Project,
Sante Fe, New Mexico, November 11.
Ladd, R.C., R.L. Kane, and R.A. Kane. 1999. State LTC Profiles Report,
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on Aging Report. Trenton, N.J.: New Jersey Department of Community
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of Health and Senior Services, Trenton, N.J.
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Health Policy.
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Institutionalized Elderly. Paper presented at the Scripps Gerontology
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The
Authors
Susan C. Reinhard
Susan C. Reinhard, R.N., Ph.D., is the co-director of the Rutgers Center
for State Health Policy. She also directs two national initiatives to support
and stimulate state policy and program development: The Community Living
Exchange Collaborative at Rutgers helps states that are funded by the Centers
for Medicare & Medicaid Services to design long-term care that enables
older adults and people with disabilities to live in their homes and
communities. The State Solutions program of the Robert Wood Johnson Foundation
seeks to improve enrollment in the Medicare Savings Programs.
Earlier, Reinhard was executive director of the Center for Medicare
Education at the Institute for the Future of Aging Services in Washington, DC.
During 1996–99, she was deputy commissioner of the New Jersey Department of
Health and Senior Services, where she spearheaded the consolidation of all
senior services into one state department. She supervised quality oversight of
long-term care facilities and services; initiated community-based programs,
including NJEASE and Community Choice Counseling; and directed the statewide
pharmaceutical assistance program for seniors and people with disabilities.
Dr. Reinhard's background includes clinical care, education, research,
policy development, and state governmental relations. She is a fellow in the
American Academy of Nursing. Since this report was first drafted, she has been
asked to act as a senior policy adviser to the McGreevey administration.
Charles J. Fahey
Msgr. Charles J. Fahey, Marie Ward Doty professor emeritus from Fordham
University, is a program officer for the Milbank Memorial Fund. As a Roman
Catholic priest in the diocese of Syracuse, New York, he served in Catholic
Charities there and at Fordham University's Third Age Center. He has held many
national and international posts. He chaired the federal Council on Aging
during the Carter administration and was a leader of three White House
Conferences on Aging and two United Nations World Assemblies on Aging. He has
been president of Catholic Charities USA, the American Society on Aging, and
the American Association of Homes and Services for the Aging.
To see a complete list of Milbank reports, including
Electronic Reports, click here.
Milbank Memorial Fund
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(c) 2003 Milbank Memorial Fund
The Milbank Memorial Fund is an endowed national foundation that engages in
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publishes with other organizations, and in articles it commissions for
publication by other organizations, the Fund endeavors to maintain the highest
standards for accuracy and fairness. Opinions expressed by individual authors,
however, do not necessarily reflect opinions or factual determinations of the
Fund.
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