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**American Indian and Alaska Native**

**Roundtable on Long Term Care:**

### Final Report 2002

**Bruce Finke, MD**

Indian Health Service Elder Care Initiative

P.O. Box 467

Zuni, NM 87327

bfinke@abq.ihs.gov

**Yvonne Jackson**

Director,

Office for American Indian, Alaska Native and Native Hawaiian Programs

Administration on Aging

Department of Health and Human Services

330 Independence Avenue SW

Washington, D.C. 20011

**Lahoma Roebuck**

Office of Clinical and Preventive Services

Indian Health Service

12300 Twinbrook Parkway - Suite 605

Rockville, MD 20857

**Dave Baldridge**

Executive Director, National Indian Council on Aging

10501 Montgomery Blvd NE, Suite 210

Albuquerque, NM 87111-3846

Roundtable Report Prepared by:

Jo Ann Kauffman

**Kauffman and Associates, Incorporated**

425 West First Avenue

Spokane, WA 99201

\(509\) 747-4994

This report was prepared by Kauffman and Associates, Inc. (KAI) under
contract with the Indian Health Service (IHS). The views and opinions
expressed in this report are those of the participants and authors and
do not represent official policy or positions of the Indian Health
Service or the Administration on Aging. In addition to the five papers
presented herein, this report summarizes the proceedings, implications
and recommendations which emerged from the American Indian and Alaska
Native Roundtable on Long Term Care held April 11-12, 2002, in
Albuquerque, New Mexico.

**Roundtable** **Participants and Contributors**

**Bill Benson**

7106 Maple Avenue, No. 2

Silver Spring, MD 20912

*Phone:* 202-255-2001

*Fax:* 301-270-4066

*Email:* <tbcg@erols.com>

**Kay Branch**

State of Alaska, Division of Senior Services

3601 C St, Suite 310

Anchorage, AK 99503

*Phone:* 907-269-3663

*Fax:* 907-269-3689

*Email:* <Kay_Branch@admin.state.ak.us>

**Mim Dixon**

1618 Spruce St.

Boulder, CO 80302

*Phone:* 303-674-9513

*Fax:* 303-443-4733

*Email:* <mimdixon@hotmail.com>

**Ralph Forquera**

P.O. Box 3364

Seattle, WA 98114

*Phone:* 206-834-4002

*Fax:* 206-834-4012

*Email:* <ralphf@sihb.org>

**Ladonna Fowler**

American Indian Disability

Technical Assistance Center

R.I.D., 52 Corbin

University of Montana

Missoula, MT 59812

*Phone:* 866-424-3822

*Fax:* 406-243-2349

*Email:* <wareagle@centurytel.net>

**Neil Henderson**

OU College of Public Health

Dept. of Health Promotion Sciences

801 NE 13^th^ St.

P.O. Box 26901

Oklahoma City, OK 73190

*Phone:* 405-271-2017, ext. 46756

*Fax:* 405-271-2099

*Email:* <neil-henderson@ouhsc.edu>

**Holly Kibble**

Director, Elder Care Services

Sault Ste. Marie Tribe of Chippewa Indians

2864 Ashmun St.

Sault Ste. Marie, MI 49783

*Phone:* 906-632-5243

*Fax:* 906-632-5208

*Email:* <nuk@30below.com>

**Andy Lorentine**

Tohono O'Odham Nation

Community Health

P.O. Box 837

Sells, AZ 85634

*Phone:* 520-383-6200

*Fax:* 520-383-8806

**Leander Russ McDonald**

National Resource Center on Native American Aging

University of North Dakota Center for Rural Health

P.O. Box 9037

Grand Forks, ND 58202-9037

*Phone:* 800-896-7628

*Fax:* 701-777-6779

*Email:* <rmcdonal@medicine.nodak.edu>

**Corrine Rago**

Cornerstone Home Health

P.O. Box 210407

Auke Bay, AK 99821

*Phone:* 907-586-6838

*Fax:* 907-586-6884

*Email:* <crago@gci.net>

**Linda Redford**

8408 Hedges

Raytown, MO 64138

*Phone:* 913-588-1636

*Cell:* 816-213-7910

*Fax:* 913-588-3179

*Email:* <lredford@kumc.edu>

**Theron Wauneka**

Inter-Tribal Council of Arizona

2214 North Central Avenue

Suite 100

Phoenix, AZ 85004

*Phone:* 602-258-4822

*Email:* <Theron.Wauneka@itcaonline.com>

**Frank Chee Willetto, Sr.**

P.O. Box 1415

Crownpoint, NM 87313

*Phone:* 928-871-6380 (Window Rock)

*Fax:* 928-871-7259 (Window Rock)

**Lahoma Roebuck**

Long Term Care Coordinator

Indian Health Service

Office of Clinical and Preventive Services

Division of Behavioral Health

12300 Twinbrook Parkway

Suite 605

Rockville, MD 20857

*Phone:* 301-443-0226

*Fax:* 301-443-7623

*Email:* <lroebuck@hqe.ihs.gov>

**Shelly Carter**

Staff Assistant

Indian Health Service

Office of Clinical and Preventive Services

Division of Behavioral Health

12300 Twinbrook Parkway

Suite 605

Rockville, MD 20857

*Phone:* 301-443-0226

*Fax:* 301-443-7623

*Email:* <scarter@hqe.ihs.gov>

**Gale Arden**

Director, Private Health Insurance Group

Center for Medicare and Medicaid Services

7500 Security Boulevard, MS S3-16-16

Baltimore, MD 21244

*Phone:* 410-786-6810

*Email:* <Garden@cms.hhs.gov>

\***Dorothy Dupree**

Senior Policy Advisor

American Indian/Alaska Native Programs

7500 Security Boulevard

Mailstop S2-26-12

Baltimore, MD 21244

*Phone:* 410-786-1942

*Email:* <DDupree@cms.hhs.gov>

**Bruce Finke, MD**

Indian Health Service

Zuni Service Unit

P.O. Box 467

Zuni, NM 87327

*Phone:* 505-782-7357

*Email:* <bfinke@abq.ihs.gov>

**Roberta Kinzhuma**

Oneida Tribe of Indians of WI

2907 South Overland Drive

Oneida, WI 54155

*Phone:* 920-869-2448

# Sydney Bird 

Winnebago Tribe of NE

> Main Street Highway 77
>
> Winnebago, NB 68071

*Phone:* 402-878-2487

**Oneida Winship**

Choctaw Nation of OK

324 North Washington Street

Durrant, OK 74701

*Phone:* 580-924-8280

**Cynthia La Counte**

Chairwomen

HC58 Box 77

Bainville, Montana 59212

*Phone:* 701-572-8316

**Stephen Wilson**

601 N. Pine

Holdenville, Okla 74447

*Phone:* 918-637-6798

**James Delacruz**

Quinault Indian Nation

Taholah, WA 98587

*Phone:* 360-276-4191, 277

# Shannon McDaniel 

> Tribal Administrator

133 Madison Street

Durant, OK 74701

*Phone:* 580-924-3473

**Laverne Wyaco**

Administration Building Complex #2

Navajo Boulevard

Window Rock, AZ 86515

*Phone:* 928-871-6783

**Carolyn Rackard**

3410 Bell Creek Road

Atmore, AL 36502

*Phone:* 251-368-9136

**Regina LittleBeaver**

Winnebago Tribe of Nebraska

St. Augustine Drive

Human Resource Building

Winnebago, NB 68071

*Phone:* 402-878-2447

**Debbie West**

Rt. 1, Box BN B5

Cherokee of NC 28719

*Phone:* 828-497-4471

**Glenda MCConnell Chiltosky**

Route 1, Box 888

Cherokee, North Carolina 28714

*Phone:* 828-497-4471

**Kenneth Mallory**

Winnebago Tribe of Nebraska

St Augustine Drive

Human Resources Building

Winnebago, NB 68701

# Yvonne Jackson

330 Independence Avenue SW

Washington, D.C. 20011

*Phone:* 202-619-2713

*Email:* <Yvonne.Jackson@aoa.gov>

# Meg Graves

330 Independence Avenue SW

Washington, D.C. 20011

*Phone:* 202-619-3108

*Email:* <Margaret.Graves@aoa.gov>

# Connie Fox

> CHR Program

Three Affiliated Tribes

404 Frontage Rd.

New Town, ND 58763

*Phone:* 701-627-4781, 8333

*Fax:* 701-627-3655

*Email:* <chr@mhanation.com>

> **Linda Carson Henderson, MPH**
>
> Vice President, Two Hawks Institute
>
> 5937 NW 81^st^
>
> Oklahoma City, OK 73132
>
> *Phone:* 405-271-2017, 46756
>
> *Email:* <TwoHawkInstitute@cox.net>

**Robert P. Shuckahosee**

Tribal Disability Technical Assistance Director

American Indian Disability Technical Assistance Center

The University of Montana

52 Corbin

Missoula, MT 59812

*Phone:* 406-243-4815

*Fax:* 406-243-2349

*Email:* <roberts@selway.umt.edu>

**\*Muriel Peterson**

North Dakota Department of Human Services

*Phone:* 701-328-8905

*Email:* <sopetm@state.nd.us>

> **\*Shelly Zylstra**
>
> Northwest Washington Area Agency on Aging
>
> *Phone:* 360-676-6749
>
> *Email:* <ZylstRA@dshs.wa.gov>

\*Not present at the meeting, but contributed significantly to the
process.

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# INTRODUCTION

The Indian Health Service (IHS), in partnership with the Administration
on Aging (AoA) and the National Indian Council on Aging (NICOA), held a
Roundtable Conference on American Indian and Alaska Native Long Term
Care on April 11, 12, 2002. The purpose of the Roundtable was to analyze
and explore key issues in long term care (LTC) for American Indian and
Alaska Native (AI/AN) communities. This report will summarize the
discussions and consensus positions developed during the Roundtable
Conference. It also provides a forum for the analysis of specific
discussion papers prepared by experts in the fields of Indian health and
long term care.

Initially, five important topic areas were identified and framed as
questions. Individuals with experience in long term care, Indian health,
or both were invited to write a draft paper exploring these areas. These
papers, presented in draft form, were the starting points for discussion
at the Roundtable Conference.

Over thirty experts in Indian Health and elder care from throughout
Indian Country were invited to participate in the Roundtable. These
experts were not selected to "represent" Indian Country, but rather to
gather a broad array of expertise in the issues attendant to long term
care for American Indians and Alaska Natives.

Each topic was presented by the paper author and the content and
approach were discussed by the Roundtable experts. Comments were
recorded by the Roundtable facilitator and provided to the author for
inclusion in the final draft of the paper following the meeting.
Participants then divided into small groups to explore implications and
recommendations regarding each topic. Topic facilitators presented these
to the entire roundtable for further discussion.

What follows is the report of this process. At its core are the five
invited papers on key topics (revised with input from the roundtable
participants), followed by a summary of the implications and
recommendations from the Roundtable experts regarding the issues
addressed in each paper. In addition, there are two background papers
presented at the Roundtable, one on AI/AN demographics from the 2000
Census, and one with the latest data on the prevalence of functional
impairment among AI/AN elders. Finally, there are two additional
background papers prepared for the Roundtable; a report on AI/AN nursing
homes and a preliminary analysis of the cost of long term care for AI/AN
elders using recent IHS user population data.

The first paper entitled "Long Term Care in Indian Country Today: A
Snapshot" is presented by William Benson in coordination with the
National Council on Indian Aging (NICOA). His paper provides an overview
of the issues facing Indian elderly across the United States and a brief
profile of some of the federal programs designed to address their needs.
His paper also provides preliminary data from a national survey of
tribal long term care conducted by NICOA and the National Senior
Citizens Law Center.

The second paper entitled "Opportunities for Medicaid Financing of Long
Term Care in American Indian and Alaska Native Communities", by Mim
Dixon, Ph.D., provides a thorough and exhaustive review of the existing
federal Medicaid programs administered through the states which could
potentially provide financial support for tribal and urban Indian LTC
services. Her paper identifies areas for tribal, state, and federal
collaboration to improve access to long term care services.

The third paper is entitled, "Long Term Care in Indian Country:
Important Considerations in Developing LTC Services." It was prepared by
Linda Redford, R.N., Ph.D. In her paper, she presents a demographic
profile of American Indian and Alaska Native elderly and explores the
types of services required by this population. Her paper provides an
excellent outline of the key elements to conducting effective planning
and development activities for Long Term Care services.

The fourth paper is by J. Neil Henderson, Ph.D., entitled, "How Do We
Understand and Incorporate Elders' Teaching and Tribal Values in
Planning a Long Term Care System?" This paper provides a structured way
to assess and define traditional Native culture and values that can be
integrated into LTC systems. Specific and practical examples are
provided that offer "rituals of respect" for the culture and values of
those served by LTC programs.

The fifth and final paper is written by Ralph Forquera, M.P.H.,
Executive Director of the Seattle Indian Health Board, entitled "How Do
We Address the Long Term Care Needs of Urban Indian Elders?" This paper
describes the migration of American Indians and Alaska Natives from
rural and reservation settings to America's cities over the last century
and provides an important perspective on the issues surrounding access
to long term care services for this population.

Those gathered for this Roundtable brought with them more than their
expertise in American Indian and Alaska Native health and long term
care. They also brought their passion and commitment to the care of
elders and those with disabilities. All of us involved in the Roundtable
hope that this effort will further the efforts to develop long term care
systems and services for American Indians and Alaska Natives.

######## HIGHLIGHTS OF ROUNDTABLE CONFERENCE

######## IMPLICATIONS AND RECOMMENDATIONS

Following each of the five (5) discussion papers presented in this
report is a series of specific implications and recommendations
articulated by the Roundtable participants. These Roundtable
recommendations should be reviewed in their entirety, as they represent
the interaction and analysis of the diverse gathering of experts
represented at the Roundtable Conference. Listed below is a brief
summary of the larger list of Implications and Recommendations. For a
more detailed review, please refer back to each of the five discussion
papers in this report.

######### Over-arching Considerations

*Commitment:* The commitment by tribal and community leadership is key
to developing effective Long Term Care services in tribal communities.

*Coordination:* Tribes currently provide an array of LTC services, but
these are recognized to be inadequate to the need and the lack of
coordination of available services may limit the effectiveness of these
limited resources.

*Culture and Values:* Cultural aspects of LTC should be an integral part
of all aspects of planning and service delivery. Cultural
appropriateness must be deliberately planned into LTC services.

*Expand Thinking About LTC Beneficiaries:* Merging LTC issues for both
the elderly and the disabled, in national policy and in local planning
is a key consideration for future planning and development.

*Inter Agency Collaboration:* There is a need for federal agency
collaboration and federally funded demonstration projects, LTC planning
grants, and education and technical assistance for home and community
based care that address the unique issues in Indian Country.

*LTC Research Agenda:* A formal research agenda on all aspects of LTC in
Indian Country is needed and should be developed through a consultative
process. This agenda should be established and funded to provide
research and information regarding the variety of questions facing
tribal and urban Indian communities considering LTC options, such as
studying the economic viability of current LTC options, examining best
practices and evaluating programs.

######### The Planning Process

*Vision:* The process begins with a vision of what LTC should look like
in the community and should not be merely driven by funding initiatives.
Establishing a vision for LTC services must be a consultative,
participatory process. It is important to have a clear understanding of
the realm of possibilities for providing LTC. Finding a service model
that best meets the needs and most appropriately reflects the values of
each community is important.

*Involve the Stakeholders:* The planning process must provide meaningful
involvement from all the stakeholders including elders, Indians with
disabilities, family members, advocates, service providers, community
leaders and funding sources.

*Collaboration:* The network of resources potentially available to
provide components of a comprehensive LTC system could include not only
programs administered by tribes, IHS or urban program, but also county,
state, federal and private providers. Collaborating with other providers
will open doors to increased services and opportunities.

*Education and Understanding of LTC Options:* The options for providing
LTC services in Indian communities includes many strategies beyond
building a nursing home. Education of local leaders and planners is
important to ensure that all the various options for home-based,
community based services, alternate care facility, assisted living and
other options are explored and understood.

*Local Capacity and Diversity:* Tribes are at very different levels of
capacity in LTC planning and program development.

######### The Structure of Long Term Care

*Long Term Care Services:* There are a services currently available in
tribal and urban Indian communities that provide pieces of the array of
services defined as Long Term Care. These services may not be
coordinated in an overall LTC system or strategy. LTC services within a
community may compete against each other. Anecdotal experience suggests
a hierarchy of preferences for LTC services, starting with home care
provided by family and ending with nursing home care.

*Workforce Development:* Workforce development and retention is both
critical and problematic when developing LTC systems. LTC service
providers are too often not provided the pay or incentive to remain in
these positions. Strategies for recruiting, rewarding and retaining
individuals to fill these important positions are presented.

*Case Management as a Core Element:* Case management is a key element in
LTC services, and it assumes even greater importance for home and
community based LTC services.

*Elder Advocacy:* There is a need for more effective advocacy for AI/AN
elders in nursing homes or in need of other LTC services. The existing
state complaint systems do not appear to respond to AI/AN complaints
about nursing home quality or practices.

*Indians with Disabilities:* In addition to meeting the LTC needs of
Indian elders, Indian community members with disabilities may require
LTC services and should be consulted and involved in the development of
services.

*Prevention:* Effective health promotion and disease prevention for
elders will decrease need for LTC services, or at least forestall the
need for services.

######### Financing Long Term Care

*Tribal and State Relationship:* A meaningful relationship between
tribal health programs and the states is key to providing LTC services,
since the majority of funding for LTC services comes through the state
administered Medicaid programs. States should be held accountable by CMS
to ensure meaningful tribal consultation is occurring in the development
of state LTC plans and related Medicaid waiver proposals. Tribes need to
be more involved in the development of state 1915c waivers.

*Medicaid and Medicare Enrollment Barriers:* Barriers to enrollment in
Medicaid and Medicare limit access to LTC services in Indian
communities, since these programs are the primary payors for LTC
services. More research is needed to better understand these barriers
and to develop strategies to eliminate them.

*Demonstration Projects:* Federal agencies should collaborate in funding
LTC demonstration projects, to begin to develop various models of
different sizes and scales through out Indian Country.

*Innovative Funding Strategies:* Tribes need to be creative in assessing
financing opportunities for LTC services to include, Medicaid, Older
Americans Act, HUD, USDA, and Veterans Administration in addition to IHS
and local tribal support.

*Start-Up Funding:* Not all tribal or urban Indian communities have the
existing infrastructure to begin to provide a LTC service system for
their population. Initial start-up funding would assist in moving
forward to better coordinate existing resources and to fill gaps in
services.

######### Creating Culturally Appropriate Long Term Care Services

*Culture is Integral Component:* Cultural appropriateness, or rituals of
respect, should be recognized as an essential part of the care and
should be included as a component of any quality of care evaluation.
Culturally appropriate and sensitive services must be included in any
LTC service system in Indian communities, as an integral component of
quality services.

*Culture is Dynamic:* Culture is a dynamic process, and must constantly
be assessed and its integration in LTC services evaluated to ensure
appropriateness. Indian elders are oftentimes multi-cultural with
different experiences and perspectives.

*Integrating Culture Must Involve Community:* Finding ways to integrate
traditional culture and values into LTC must be based on a consultative
process with community involvement and the participation of elders,
people with disabilities and community leaders.

######### 

######### Urban Indian Elders

*Needs Assessment:* Little is known about the needs of the urban AI/AN
elders with regard to LTC services. More research and assessment is
required.

*Urban Indian Program Involvement:* Federal, State and intertribal
efforts to address LTC needs of AI/AN should invite the participation of
Urban Indian health programs, as one of the three components of the IHS,
tribal and urban system of care. Planning, policy, and funding should
seek to break down distinctions between services provided to elders
living in reservation and urban communities.

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> **LONG TERM CARE IN INDIAN COUNTRY TODAY:**

**A SNAPSHOT**

**William F. Benson**[^1]

*I also hope you will realize that there are some who have a deep
concern for older persons, specifically the older persons in the
American Indian community. That we intend to do everything we can to use
the authority we have, the resources that are made available to us, in
order to get the kind of services through to older persons that will
help them look to the future not with despair but with hope. The
objective that we should try to keep in mind at all times is to try to
make the last days the best days. If we are going to achieve that
objective, it's going to require commitment. Not only on the part of
those who are in the federal government, the state government, and in
community government. Not only on the part of those who are part of
private organizations, but on the part of every individual who has a
concern for older persons.*

> Arthur S. Flemming, U.S. Commissioner on Aging
>
> National Indian Conference on Aging
>
> Phoenix, Arizona -- June 17, 1976

These words, made more than a quarter century ago, by the venerable Dr.
Flemming, who in addition to serving as U.S. Commissioner on Aging had
been the first Secretary of HEW under President Eisenhower, remain
unrealized today when it comes to services for America's Indian elders.
This is especially true with regard to long term care.

For many elders, their last days are spent living with some form of
chronic or disabling illness that limits their ability to perform
activities of daily living (ADLs). These ADLs include such tasks as
bathing, eating, dressing, using the toilet or getting into or out of
bed \-- in other words the daily activities that allow one to take care
of one's basic needs. As noted by the National Resource Center on Native
American Aging at the University of North Dakota (NRCNAA), "These
activities are fundamental and when people express difficulties with
them, they are considered to be in need of help."[^2]

Many other elders, while not as severely limited in their independence
as those with ADL limitations, have difficulties with other tasks such
as cooking, cleaning, lifting, or doing the laundry. The limited ability
or inability to perform these tasks, or Instrumental Activities of Daily
Living (IADLs), also limits one's ability to take care of oneself and to
lead a relatively independent life.

When elders can no longer perform their own ADLs or have limits in their
IADLs over the long term\-- rather than on an episodic basis when
recovering from an illness or injury\-- they are likely to need some
form of assistance from someone else to help perform such tasks. With
modest even minimal forms of support, an individual with such
limitations may be able to maintain a reasonably independent life in
their own home or some other home-like setting, such as living with a
relative. Those with severe limits, especially in their ADLs, may
require extensive support and interventions or even long term facility
care.

According to the NRCNAA, there is a "greater level of need for personal
assistance among the Native American elders than in the general
population," adding that "only 6.5% of the Native American elders over
55 receive such services."[^3] That figure is not surprising given the
tremendous dearth of long term care services throughout Indian country,
despite the great need and the demand that has grown for long term care
especially over the past decade.

Long term care is the single most critical issue facing American Indian
elders in the 1990s, according to the *National Indian Aging Agenda for
the Future.*[^4] Federally funded long term care is virtually
nonexistent in Indian country. The need of Indian elders for long term
care, including home health and personal care, is growing with the
increasing size and longevity of the Indian population. Such services,
however, remain undeveloped. Lack of care can weaken older Indians'
health, cause premature hospitalization and unnecessary utilization of
existing health care services in Indian Country. Chronic illnesses and
disabilities also affect Indian elders' quality of life and ability to
live independently. Rural isolation, poverty and access barriers further
compound the problem for reservation elders.

In 1996, the National Indian Council on Aging (NICOA) published a
comprehensive examination of the health status of Indian elders in
relation to long term care. T*he NICOA Report: Health and Long term Care
for Indian Elders* [^5] reveals that "more Indians are living longer. .
. There were 108,000 American Indian elders out of a total Indian
population of 1,423,043 in 1980 and 165,842 elders out of a total
American Indian population of 1,959,234 in 1990, a 52% increase during
the decade." According to the Indian Health Service (IHS), Indian elders
comprise only 8.3% of the agency's service population but uses 21% of
its services.

The report indicates that Indian life expectancy at birth grew from 51
to 71.5 years between 1940 and 1989, and from 61 to 72 years since 1972.
As of 1990, the gap between American Indian and White life expectancy
had narrowed to less than 3.6 years for American Indian males and 3.0
years for females. Due in part to high birth rates and significant
improvements in maternal/infant mortality (reduced by more than 90%
since 1955 according to the IHS), American Indians now exhibit the
youngest median population of all minorities, averaging less than 22
years compared to the national average of 30 years. This trend portends
an "explosion" in the numbers of Indian elders over the next four
decades.

At the same time, the overall health status of Indian elders continues
to be poor. The IHS publication "Regional Differences in Indian Health
for 1995" indicates that Indian age-adjusted mortality rates are greater
than U.S. All Races rates by the following percentages:

Alcoholism 674% Diabetes Mellitus 234%

Tuberculosis 480% Suicide 85%

Accidents 265% Homicide 62%

Indian elders are also affected disproportionately by disability.
According to data from the 1990 Census, "American Indian elders report
the highest level of work disability among the five racial groups . . .
44.3% report a work disability compared to only 29.0% of non-Hispanic
Whites. Moreover, over one-third of American Indian elders (36.8%)
report that their condition prevents them from working compared to only
23.2% of their non-Hispanic White age peers. These high levels of
disability among Indian elders offer further evidence of the need for
health programs to specifically address the unique needs of this
population."

Indian elders' poor health and disability status is mirrored by their
equally poor economic health. "The 1990 Census shows that 30% of Indians
aged 65 and older who reside in rural areas have no vehicle available,
31% have no telephone in their living quarters, and 24% speak English
poorly." Because of their rural isolation, poverty, and other barriers,
reservation elders have little access to existing long term care
delivery mechanisms that may serve mainstream or urban elderly
populations. The NICOA report also examined the lack of nursing homes in
Indian Country, stating:

> Unlike the general population (which has many nursing home facilities
> available), nursing home facilities are extremely rare in Indian
> communities. The development of long term care institutions in Indian
> communities is well behind the general population, which began
> extensive nursing home construction in the 1960s (Manson, 1989).
>
> The first Indian nursing home was constructed in 1969, and only 13
> tribally- operated nursing homes existed as of 1993. With the
> exception of these tribally operated facilities, other institutions
> tend to be located long distances from where Indian elders live.
> Consequently, many elders are placed in non-Indian facilities and may
> become isolated from their families and friends. Lack of cultural
> diversity and isolation...are major sources of resident and family
> dissatisfaction with the care provided in off-reservation homes.
>
> Because of these problems, many tribes are considering the feasibility
> of establishing their own nursing homes to meet the need for
> institutional care within a tribal setting. However, the solution to
> the long term care needs of American Indian elders presents obvious
> economic difficulties (of construction, maintenance, and staffing) and
> may not represent the wishes of American Indian elders.

For a variety of reasons, many Indian tribes and health care providers
are ill-prepared to deal with the pending "explosion" in the numbers of
elders whose health, economic, and demographic characteristics all point
to the urgent need for a full array of long term care services. Both
public and tribal resources fall far short of necessary levels. A recent
report by the National Indian Health Board describes the dearth of long
term care, both home-based and in nursing homes, in Indian communities
in the nine states in its study:

> Only three states in this study have tribally operated nursing homes:
> Arizona (3), Minnesota (1) and Washington (1). Of the three states,
> Arizona is the only one with managed care for long term care. \[The
> other six states in the study are California, Michigan, New Mexico,
> New York, Oklahoma and Oregon.\]
>
> Home health care is covered more often under Medicare than Medicaid.
> However, Medicaid does pay for some home health services . . . The
> major barrier consists of state requirements to become a certified
> home health agency under state laws. Some states require that home
> health agencies offer a range of services that are beyond the tribe's
> capability, such as occupational therapy or physical therapy.[^6]

The development of long term care in Indian Country will require the
effective use of all available funding resources. Such resources arise
primarily through Medicare, Medicaid, the Indian Health Service (IHS)
and tribal resources. Each offers unique but limited support, making a
composite of resources a key to future planning.

# Medicare 

Medicare is a principal existing source of health care coverage and
payment for Indian elders. Because it covers hospitalization and other
forms of acute care and treatment, Medicare is not available to meet
extended needs in chronic care. In limited ways, such as for those who
are homebound following a hospital stay, Medicare is useful in supplying
short-term home health in an individual's transition to chronic care.
Medicare also pays for skilled nursing facility stays but the conditions
under which eligibility for the service is established and maintained is
stringent and thus covers only a limited amount of nursing home care.

# Medicaid 

Medicaid is the principal source of public long term care financing in
the United States. It is the largest public payer of nursing home care
and is providing increasing amounts of home-based care, usually through
a state's use of Medicaid waivers or through the provision of personal
care services as an optional Medicaid service. Unlike other Medicaid
services, health services provided by either tribal or IHS providers to
enrolled tribal members are fully financed by the Federal government.
Health care under Medicaid remains primarily a state responsibility.
State home care coverage varies, particularly in state definitions of
homemaker services. The federal Centers for Medicare and Medicaid
Services (CMS, formerly the Health Care Financing Administration) define
basic rules for Medicaid participation. It can set liberal policies on
state waivers for direct funding to tribes, although this flexibility
appears to remain unrealized.

The federal government once dealt directly with tribes on health issues
through the IHS, but today it refers tribes to the states on questions
arising under Medicaid. Some states in turn refer tribes to health
maintenance organizations (HMOs) and similar managed care entities. HMOs
rarely enhance Indian access to health care, which already is impaired
by problems of distance, transportation, and cultural and linguistic
barriers in Indian Country. Most HMOs operate for profit, and typically
avoid serving sparsely populated areas because of higher costs. Medicaid
can be a shifting resource for tribal health unless careful planning
addresses the needs of individual tribes in a realistic way.

# Indian Health Service

The Indian Health Service (IHS) provides services directly to more than
1.3 million Indians, principally through the operation of 61 health
centers and 38 hospitals. The IHS historically has not attempted to
provide community-based or home-care programs or residential care
facilities. Federal funding for the IHS, moreover, remains modest at
best, making it difficult for the IHS to assume new commitments. The IHS
budget is discretionary and not an entitlement like Medicaid or
Medicare. As such, its funding suffers in a climate unfavorable to
discretionary increases. The average federal expenditure per Indian
patient is far lower than the national average and is shrinking further.
In 1977, the average federal expenditure per Indian patient was 75% of
the national average. By 1999, it had dropped to 34%.

# Older Americans Act

The Older Americans Act (OAA) benefits Indian elders in several ways,
including through addressing some long term care related needs. Most
notably, Title VI of the OAA provides direct grants from the
Administration on Aging (AoA), the federal agency with responsibility
for the OAA to tribal organizations. Title VI programs can be the
foundation for elder services in many Indian communities, providing a
potential array of services including meals and chore, home aid,
transportation and case management services. Unfortunately, inadequate
funding too often constrains Title VI services to meals programs with
limited transportation. The current (fiscal year 2002) funding level for
Title VI is \$25.729 million and supports grants to some 233 federally
recognized tribes.

OAA Title III funds that go to states and local area agencies on aging
(AAAs) support a wide array of services, including: congregate and
home-delivered meals; transportation services; information and
assistance services; legal assistance; case management; some respite and
other long term care services; long term care ombudsman services; health
promotion and disease prevention activities; and others. Although Title
VI grants were intended to be somewhat analogous to grants to AAAs, the
amounts are so small, that as indicated they do not support much more
than a meals program and some transportation services (typically
associated with the meals program \-- transporting home-delivered meals
and elders to and from meals sites). Title VI's primary contribution to
long term care is its modest support for limited home aid, case
management, transportation and home-delivered meals for frail and
chronically ill elders. These types of services, if provided with a
strong case management component, could allow frail elders to stay in
their homes and not be placed in nursing homes.

In some parts of Indian Country, states have elected to support Title
III-funded Indian area agencies on aging. Washington state, for example,
has two: at the Colville Nation and the Yakama Nation. Arizona and New
Mexico each have a statewide Indian AAA. Nationwide, there are some 10
Indian AAAs. These entities have far more resources than tribes that
just receive Title VI services.

The 2000 amendments to the OAA established the National Family Caregiver
Support Program (NFCSP), which supports activities at the local level to
assist family caregivers through education, information, support groups,
and some modest services, such as respite care. The program also
includes a component to assist grandparents who are raising
grandchildren. When the NFCSP was introduced as a part of pending OAA
reauthorization legislation, it did not include a grant-making component
for tribes. Vigorous advocacy by NICOA and several others, particularly
James DeLaCruz of the Quinault Indian Nation resulted in a separate part
of the NFCSP being established in the final legislation to provide
grants directly to tribes for caregiver-related services. The present
appropriation for the Indian portion of the NFCSP is \$5 million out a
total of \$136 million for the program. The NFCSP funds do provide
tribes with an important source of funds for a critical part of long
term care -- enhancing the ability of informal family caregivers to
continue to provide care to their loved one. Given the paucity of long
term care services, especially in Indian country, supporting informal
caregivers is especially important. The NFCSP also provides authority to
the AoA to support national demonstrations and other activities to
support NFCSP-related activities. NICOA has proposed to AoA using Title
IV funds to support a national technical assistance effort to help
tribes plan for and effectively implement family caregiver-related
services. To date, AoA has not funded such an effort.

Two other parts of the OAA are important to note. The first is Title IV,
the research and demonstration part of the Act. In the past, Title IV
funds have been used to provide training for and technical assistance to
Title VI grantees to improve their skills and knowledge basis.
Unfortunately, the AoA discontinued using Title IV to support training
and technical assistance for Title VI personnel and grantees. The final
part of the OAA worth noting is the Indian section of Title VII, the
Vulnerable Elder Rights section of the OAA. Title VII provides funding
and authority for such activities as ombudsmen to investigate complaints
of elders in nursing homes and other long term care facilities, legal
assistance development services, and activities to combat elder abuse.
The 1992 amendments to the OAA established Title VII and included a part
B for providing support to Indian country for addressing abuse and other
issues facing vulnerable elders. Despite the addition of this new part
of the law, the Congress has yet to provide an appropriation to make the
promise of Title VII a reality for Indian elders.

Overall, the OAA is an important source of certain services for elders,
offering a segment of--- even a foundation for--- the long term care
related services needed in tribal communities with the potential for
expansion. Home-delivered meals are a critical component of any long
term care delivery system and Title VI does offer that to tribes. The
limited transportation available under Title VI is also important. The
new NFCSP is especially important given the prominent role of family
members in being caregivers for their elderly loved ones. NFCSP should
offer a valuable addition to the development of long term care services
at the tribal level.

**Tribal Resources**

More and more tribes now contract and administer their own health
services under authority of the Indian Self-Determination Act (P.L.
93-638). The IHS budget, however, remains static and tribes, even when
under contract, must find other resources to keep pace with rising costs
associated with providing health care. Thus, tribal resources are
becoming an important factor in the health financing equation. Resources
may be drawn from tourism, casinos or other tribal enterprises. With
regard to long term care, the commitment of resources by an individual
tribe becomes critical to its ability to assess its own capacities, to
start funding a long term care program, and to meet gaps in covered
services. Successful adaptation of diverse resources, therefore, can
create a foundation for a long term care program.

**Long Term Care Data**

Despite the substantial and growing need for long term care in Indian
country and the lack of long term care services for addressing those
needs, there has been little research on and analyses of long term care
needs for Indian elders. Outside of the reports previously cited there
is little available data about long term care needs and a paucity of
study of services and programs.

A 1998 report[^7] about long term care needs of American Indian elders
in the IHS Santa Fe (NM) Service Unit cited a consensus statement from
an IHS roundtable, conducted in 1990 and reported by IHS in 1993, that
emphasized the need for systematic data on elders' "long term care
status from which service development can proceed," adding that:

> Long term care in reservation settings...has yet to be defined or
> quantified, and requires more analysis than has been done so far.
> Required data is either outdated or nonexistent. Needs assessments,
> particularly functional assessments, have not been conducted
> extensively on a community level. The data from these assessments must
> form the basis for measurements of demand as well as the planning and
> design of services.

It is important to note that over the past several years the National
Resource Center on Native American Aging at the University of North
Dakota has developed a comprehensive instrument for assessing the
functional status of elders at the tribal level and has in fact
completed many assessments of individual elders in a number of
tribes.[^8]

In 1996, the Administration on Aging at the U.S. Department of Health
and Human Services issued a report on "Home and Community-Based Long
Term Care in American Indian and Alaska Native Communities."[^9]
Examples of the key findings reported by the AoA include:

-   The need for home and community-based long term care (HCBLTC)
    services is extensive but is largely unmet.

-   Alternative housing, including retirement villages, assisted living
    arrangements, personal care boarding homes, group homes, short-term
    rehabilitation facilities, and intermediate/skilled nursing
    facilities are rarely available for elders living independently and
    the need for these services is rarely met.

-   Although there is an array of providers and funding sources for
    HCBLTC services, these are fragmented and insufficient to meet the
    need.

-   Funding levels, lower priority services, little appreciation of
    local need, limited access to decision makers, and excessive
    regulation were unanimously identified as barriers to continuing
    previously authorized federal and state funded programs and to
    developing new federal and state funded programs.

-   The limited financial resources available to tribes form the main
    obstacle to developing programs and providing HCBLTC services.

# National Survey Data

Given the limited information available about long term care for
American Indian elders, NICOA together with the National Senior Citizens
Law Center (NSCLC) has undertaken a national project to gather
information about the current state of long term care in Indian country,
and to lay the groundwork for helping tribes to assess their own long
term care services and infrastructure and to develop long term care
services deemed necessary and appropriate by individual tribes.[^10] As
the initial stage in this multi-year project a questionnaire was
administered to all tribes receiving Title VI funding under the Older
Americans Act in fall and early winter 2001. The principal purposes of
the survey were to:

-   Elicit information about current long term care services available
    to Indian elders, funding sources for such services, tribal
    characteristics and tribal plans for long term care services
    development and expansion.

-   Identify potential "best practices" and "important lessons" for
    future study and applicability throughout Indian country.

Of the 236 tribes presently receiving grants under Title VI of the Older
Americans Act, 109 tribes responded representing a 46 percent response.
While the questionnaire results are currently being analyzed, some
preliminary findings are beginning to emerge from the analysis. Those
findings are presented here with the caveat that given the early stage
of analysis, data are preliminary and may require verification and
refinement.

One clarification that is necessary, for example, concerns data from
Oklahoma tribes. Because Oklahoma tribes do not reside on reservations
and their homelands include a larger and diverse community including
numerous cities and towns, the responding 11 Oklahoma tribes
significantly skew some of the data. As an example, the first question
in the survey instrument asks, "How many people live on your reservation
or tribal community?" The mean for all the responses is 8,824 with a
high of 312,915. Without the Oklahoma tribes in the analysis, the mean
is 3,562 with a high of 31,799. As another example, question no. 5 asks,
among a number of questions, if nursing home care is "available on (the)
reservation or in the tribal community." With Oklahoma tribes included,
there are 27 "Yes" responses. Without the eleven Oklahoma tribes
included there are 19 "Yes" responses. This is apparently due to the
number of non-Indian nursing homes in communities contiguous with
Oklahoma tribes.

What follows are findings from preliminary data from selected portions
of the survey analysis that has been conducted to date. For purposes of
this paper, while adjustments are made to the survey results analyses,
Oklahoma tribes are excluded unless otherwise noted.

## 

## Tribal Demographics

The median age at which tribal members are considered elders and
eligible for aging services is 55 with a minimum of 50 in 7 tribes and a
maximum of 65 in 5 tribes (Question no. 2).

The median for the percent of the tribal population represented by
elders is 11 percent and the median number is 179 elders with a range of
4 to 1,813 (Question no. 3).

## Nursing Homes

Nursing homes are usually outside the tribal community or reservation.
Of those outside nursing homes about two-thirds are located in local
communities, and the other third are in distant communities. Nursing
homes on the reservation or in the tribal community tend to be
medium-sized -- about 45-50 beds. Residential care tends to be smaller
-- about 16-20 beds.

> The median number of elders living in nursing homes is five with a
> range from zero to 100 (Question no. 4).
>
> When asked "Of the elders living in nursing homes, how many do you
> think could have remained at home if more health care and/or personal
> care were available in the tribal community?" the median was 3 or 60
> percent of the median number living in nursing homes. (Question no.
> 4a)
>
> 19 tribes report having nursing homes available on the reservation or
> in the tribal community with 4 reporting that it is owned by the tribe
> and 5 reporting that it is operated by the tribe.[^11] 21 tribes
> report that the "Tribe is planning to create or expand this service"
> and 16 respondents answered that they "don't know" if there are such
> plans (Question no. 5).
>
> When tribal members "have to go to a nursing home" 68 report that they
> go to local communities off the reservation/outside the tribal
> community and 35 report they go to distant communities (Question no.
> 9).
>
> The median distance traveled to go to a nursing home is 25 miles with
> a maximum distance of 200 miles (Question no. 10).
>
> When asked "How good are the nursing homes that are off the
> reservation in providing care that is sensitive to the particular
> needs and desires of Indian elders, such as providing traditional
> foods, employing tribal members as caregivers, honoring cultural
> health practices, etc.?" 45 rated them poor (26) or very poor (19)
> while another 28 rated them fair. On the other hand, 12 answered good
> and 5 said very good. Not surprisingly, outside nursing homes are not
> considered very good in recognizing Indian-specific needs. The biggest
> problem is the lack of cultural sensitivity (49%) followed by the
> significant distance between the tribal community and the nursing home
> (23%). Note these statistics are for all tribes (Question no. 12).

NICOA conducted a separate but complementary survey specifically
targeted to Indian owned or operated nursing homes in March-April
2002.[^12] The initial results have been analyzed and a brief summary of
findings follows:

> 12 Indian nursing homes were identified (11 of these are tribally
> owned and 1 is tribally licensed).
>
> A total of 627 beds are in the 12 facilities.
>
> 84% of the beds are filled by American Indian/Alaska Native people.
>
> The total occupancy for 2001 was nearly 65%.

###### *Reimbursement*

> 10 of the facilities report receiving Medicaid payments.
>
> 6 report receiving Medicare payments.
>
> 3 report receive VA payments.
>
> 5 report payments made from tribal funds.
>
> *Staffing*
>
> 8 facilities or 75% have unfilled Certified Nurse Assistant (CAN)
> positions.
>
> 5 have unfilled RN and LPN positions.
>
> 3 have unfilled administrative assistant positions.

*Available Long term Care Services/Ownership (Question no. 5)*

The most frequently reported available long term care services by all
tribes, including those in Oklahoma, are:

> Transportation (94)
>
> Home-delivered meals (91)
>
> Meals at nutrition sites (88)
>
> Senior Center (82)
>
> Home modification for disabled persons (77)
>
> Home maintenance/repair (76)
>
> Housekeeping (74)

The long term care services (with the most common funding sources in
order in parentheses) that are generally available in all tribes
including Oklahoma's include:

> Home Health Care (Medicare & Medicaid)
>
> Case Management (IHS, tribal funds, 638 & Medicaid)
>
> Housekeeping (tribal funds & Medicaid)
>
> Personal Care (Medicaid & tribal funds)
>
> Home maintenance (mostly tribal funds but with some state funds)
>
> Home-delivered meals (OAA, tribal funds, state funds)
>
> Nutrition Sites (OAA, tribal and state funds)
>
> Senior Centers (tribal funds, OAA)
>
> Transportation (tribal funds, IHS, OAA & state funds)

The least available long term care services were (number reporting
service available in brackets)[^13]:

> Alzheimer's/dementia care (15)
>
> Adult Day Care (19)
>
> Nursing Home Care (27)
>
> Board & Care, assisted living or other residential care facility (29)
>
> Kidney dialysis (34)
>
> Hospice care (36)

(Selected) Services Owned & Operated by Tribes:

[Service]{.underline} [Owned]{.underline} [Operated]{.underline}

> Home Health Care (69) 23 34
>
> Kidney Dialysis (34) 7 8
>
> Nursing Home Care (19)[^14] 4 5
>
> Board & Care, ALF, RCF (29) 12 15
>
> Adult Day Care (19) 8 9
>
> Hospice Care (36) 3 6
>
> Case Management (61) 29 41

##### Family Support 

With regard to family support, in general elders often do not get home
care needs met, family members are sometimes available, and the family
members involved tend to be few. The following questions were asked and
the responses were (Questions 6-8):

> "How often would you say your tribal elders get all the assistance
> they need with activities such as housecleaning, cooking, or personal
> care?"
>
> Most of the time 22
>
> Some of the time 39

#### Rarely 15

> Almost Never 12
>
> "Are family members generally available and able to assist elders, if
> they need it?"
>
> Most of the time 19
>
> Some of the time 57

#### Rarely 11

> Almost Never 1
>
> "When family members do assist elders, are there usually many family
> members providing assistance?"
>
> Many 8
>
> Few 74
>
> "Of the families in your tribe who are providing daily care to an
> older relative, how many could use help with the care they are
> providing?" (e.g., due to difficulty, stress, exhaustion)
>
> Most of them 64

#### Some of them 27

> None of them 1

Respite care was identified as the service that would be the "most
helpful" in relieving stress on family caregivers, followed closely by
personal care (someone to help with bathing, dressing and other personal
care tasks). Farther back on the list is housekeeping and then home
health care followed by other services (Question no. 14).

*Other*

Tribes were asked about participation in the Qualified Medicare
Beneficiary (QMB) and Specified Low-Income Medicare Beneficiary )SLMB)
programs. With respect to QMB, 56% said tribal members participate, just
9% said they do not and 35% didn't know. As to SLMB 39% said they
participate, 18% said they do not and 43% didn't know (Question no. 17).

Over 70% of the reporting tribes are gaming tribes. Of these, the large
majority has full casinos. About half the tribes have "other significant
businesses." Without the Oklahoma tribes in the equation, about 2/3 are
gaming tribes. Almost all of the reporting Oklahoma tribes are gaming
tribes. (Questions no. 18 & 19)

When asked "how important is care of the frail and disabled elders to
your tribal council" given all the important concerns of tribal
government, 17% said it was the "most important." Forty-seven percent
said it was "among the top three most important areas." Another 28% said
while not among the top three, that it was among the "top ten." Only 8%
said it was not among the top ten most important areas. (Question no.
20)

The questionnaire closes with an open-ended question, "In your opinion,
what is the single most important thing your tribe should do to help its
elders?" Responses included many suggestions to build nursing homes
(20%) or assisted living facilities (13%), or to establish home health
services (14%). (Question no. 21)

#### Roundtable Discussion of Implications and Recommendations Regarding Current LTC Services in Indian Country

1.  **Vision:** Be very clear about your community vision of what you
    want, in as much detail as possible. Do not merely respond to
    funding announcements to craft your vision, but consult with the
    community through a collaborative process.

2.  **Smaller is Better:** Focus on smaller services, such as Home and
    Community Based Services as the platform for building more complex
    levels of care.

3.  **Communication is Key:** Communicate early and often with the key
    stakeholders and potential beneficiaries of LTC services, including
    elders and persons with disabilities. Make their participation
    integral to the planning and oversight of services.

4.  **Reimbursement and Funding:** Consider how the project will be
    financed for both start-up and ongoing operations. Medicaid
    reimbursable services can provide the foundation for operating the
    LTC system, but it is also important to look beyond Medicaid for
    potential resources, such as HUD and USDA grants. Trying to isolate
    tribal programs and limit resources only to tribal funds is a very
    expensive option.

5.  **Leadership:** The more tribal leadership is educated and aware of
    the full realm of LTC continuum of services and committed to
    crafting a program that is based upon the needs of the community the
    higher likelihood for long term success.

6.  **Workforce Development:** Consider who will fill the workforce
    requirements of the LTC programs and initiate training and
    development to recruit and retain a quality and happy workforce.

7.  **Case Management:** Case management is the key to effective Long
    Term Care. The trend toward more Home and Community Based Services
    elevates the importance of a strong case management system.

    ![](media/image7.png){width="1.272047244094488in" height="3.0in"}

**OPPORTUNITIES FOR MEDICAID FINANCING**

**OF LONG TERM CARE**

**IN AMERICAN INDIAN AND ALASKA NATIVE COMMUNITIES**

**Mim Dixon**[^15]

# Introduction

Medicaid is a federal-state program to pay for health care for the poor
who meet specific criteria.[^16] In 1997, the Medicaid program paid
about \$59 billion for long term care (Tilly 2001), which is nearly 60
percent of a \$1 trillion budget.[^17] When tribes think of long term
care, they usually think about the need for culturally acceptable
nursing home care for tribal elders. However, long term care encompasses
both institutional care, such as nursing homes, and the kinds of
services that can be delivered in a patient's home or in other less
restrictive community settings. Home and Community Based Services (HCBS)
can include a very wide variety of services.

Medicaid is funded by both state and federal taxes. The federal
government provides guidelines and matching funds, while the states
actually design and administer the programs. States submit their State
Medicaid Plan and waivers to the federal Centers for Medicare and
Medicaid Services (CMS).[^18] Each state has a different Medicaid
program. Thus, tribes that want to influence Medicaid funding for long
term care must work with their state governments. Tribes must also work
at the national level when changes are needed in the federal laws and
regulations that govern the Medicaid program. The purpose of this paper
is to identify some of the opportunities for states and tribes to work
together.

The Indian Health Service has never provided long term nursing home
care. The Bureau of Indian Affairs has been charged with providing
institutional residential support for those in need, but it also has
never provided nursing home care. If Congress had funded either of these
federal agencies to provide this essential element in the continuum of
health care, then American Indians and Alaska Natives (AI/AN) would not
have to apply for Medicaid.[^19] At the present time, Medicaid is not
only the leading funding source for long term care for all Americans,
but it is also almost the only source of long term care for American
Indians and Alaska Natives.

Despite the fact that there are higher poverty rates and disability
rates among American Indians and Alaska Natives, there is a lower
participation in Medicaid and lower payments made on behalf of AI/AN
Medicaid beneficiaries. For example, the 1990 Census showed that 27
percent of American Indians in the 64-74 age group category lived below
the poverty level, compared to 10 percent of U.S. All Races (Baldridge
2001). At the same time, it is estimated that 25-44 percent of American
Indians have disabilities (Baldridge 2001). Yet only 65 percent of
American Indians who are eligible for Medicaid are receiving it,
compared to 88 percent of the U.S. All Races category (Baldridge 2001).

It is not clear why American Indians are not fully participating in
Medicaid and why less is spent on American Indians with Medicaid than
other Medicaid recipients. Possible explanations have been offered that
require further research. One potential explanation is that long term
care services, which comprise 60 percent of the Medicaid budget, are not
accessible and not designed to meet the needs of American Indian
consumers and their communities.

It is this hypothesis that that is one of the main themes of this paper.
While the level of state consultation with tribes has not been
documented with regard to long term care, it has been shown that tribes
and urban Indian clinics often are not satisfied with the level of
consultation in the development of Medicaid managed care waivers and
Child Health Insurance Programs (Dixon 1998, Kauffman 2001).

On July 17, 2001, the Acting Director of the Center for Medicaid and
State Operations issued a letter to State Medicaid Directors regarding
tribal participation in the planning and development of Medicaid waiver
proposals and waiver renewals. The letter did not address renewals of
state Medicaid plans. CMS allows states to determine how consultation
with tribes will be conducted and only requires that states notify
federally-recognized tribes in writing at least 60 days before the
anticipated submission date of the state's waiver submittal, that tribes
be given a minimum of 30 days to prepare a written response, and that
states hold a meeting to discuss the waiver if tribes request it.

On August 17, 2001, the Region X CMS Administrator issued a letter to
tribal leaders in that region stating that:

> CMS is not able to stop a review of a Section 1915(b) or 1915(c)
> proposal to allow for additional time to review the proposal once it
> has been submitted. Therefore, we strongly encourage your Tribe to
> work closely with the State during the proposal development process to
> ensure your issues and concerns are included with the State's final
> submission to CMS.

The Section 1915(c ) waiver is the waiver for long term care home and
community based services. This statement suggests that CMS will not take
additional testimony from tribes, even if the state is unresponsive to
their concerns. This raises issues about the exercise of the federal
trust responsibility by CMS.

Further research is needed to determine whether states have effectively
consulted with tribes in the development of their State Medicaid Plans
and in the development of Home and Community Based Services (HCBS)
waivers. Anecdotal evidence suggests that there are very few tribal
representatives who have a command of the very complicated topics of
long term care, Medicaid regulations, and related issues to be able to
review a waiver proposal and provide a written response within 30 days,
or to engage effectively in a meeting to discuss waiver plans.
Furthermore, it appears that most states do not have people in their
Medicaid planning staff who fully comprehend the current and potential
roles of tribal governments, the Indian Health Service, and the Bureau
of Indian Affairs in the provision of long term care services. This
paper attempts to bridge some of the gaps in knowledge between these
players without getting into the myriad of technical details that can
overwhelm any discussions of strategy.

While this paper focuses on opportunities for Medicaid funding for long
term care in tribal communities, it should be noted that states are also
the key players in the planning and administration of other
federally-funded services related to long term care. These include the
Social Services Block Grants that provide a wide array of special
support and home and community-based services, Supplement Security
Income (SSI) that provides cash payment for poor and disabled
individuals, and the Rehabilitation Act of 1973 that provides services
to disabled adults related to vocational training and independent living
services. While tribes often receive funding under Title VI of the Older
Americans Act (OAA), the majority of the funds appropriated through the
OAA are administered through the state and Area Agencies on Aging. These
funds provide nutrition, home care, adult day services, respite,
transportation, legal advocacy and preventive health services, as well
as services authorized by the National Family Caregiver Support
Program.[^20] The Area Agencies on Aging (AAA) can provide an important
technical assistance function.[^21] In addition, some states have
programs for elders and the disabled that are completely funded through
state revenues. Thus, tribal-state coordination in the planning and
delivery of long term care services must reach beyond the Medicaid
programs.

# Overview

Medicaid pays the largest percentage of costs associated with long term
care in the United States. In 1998, Medicaid paid for 38 percent of all
long term care expenditures, including 46 percent of nursing home
expenses. Medicaid expenditures for long term care in 1997 were
approximately \$59 billion, with 73 percent going to nursing home or
other institutional care[^22], such as intermediate care facilities for
the mentally retarded (ICF/MR) (Tilly 2001). Home and community based
services are the fastest growing part of the Medicaid long term care
expenditures. After individual personal expenditures are taken into
consideration[^23], the next largest payer is Medicare, as shown in
Table 1.

**TABLE 1**

**Payment Sources for Long Term Care in the United States, 1998**

+------------------------+------------------------+-------------------+
|                        | Total Long Term Care   | Nursing Home      |
|                        | Expenditures           |                   |
|                        |                        | Expenditures      |
|                        | (\$117.1 billion)      |                   |
|                        |                        | (\$87.8 billion)  |
+------------------------+------------------------+-------------------+
| Medicaid               | 38%                    | 46%               |
+------------------------+------------------------+-------------------+
| Medicare               | 18%                    | 12%               |
+------------------------+------------------------+-------------------+
| Individual's out of    | 30%                    | 33%               |
| pocket                 |                        |                   |
+------------------------+------------------------+-------------------+
| Private Insurance      | 8%                     | 5%                |
+------------------------+------------------------+-------------------+
| All other              | 6%                     | 5%                |
+------------------------+------------------------+-------------------+
| Total                  | 100%                   | 100%              |
+------------------------+------------------------+-------------------+

Source: Kaiser Commission on Medicaid and the Uninsured, Medicaid Facts,
March 2001

Medicaid was originally organized around categories of needy people. The
three categories of poor people that Medicaid long term care has been
designed to assist are the aged, the blind, and the disabled. Disability
is the operative concept. Medicaid covers people regardless of age who
are physically or mentally disabled and meet the income criteria. A
portion of the institutionalized long term care is designed to meet the
needs of people who have serious mental retardation, mental illness or
developmental disabilities. So, when tribes engage in consultation with
state Medicaid planners, they need to be thinking about people with
disabilities of all ages, not just the elderly.

Disabilities are usually defined by an individual's ability to perform
everyday activities. These activities are generally classified in two
categories:

> [Activities of Daily Living (ADL)]{.underline} -- eating, bathing,
> dressing, toileting, transferring from bed to chair.
>
> [Instrumental Activities of Daily Living (IADL)]{.underline} --
> grocery shopping, meal preparation, laundry, housework, using the
> telephone, money management, medication management.

The severity of disability is usually measured by the number of ADLs
that a person is unable to perform.

Nationally, only 12 percent of the people who need long term care are
served in nursing homes or other institutions (Kaiser). In 2001, there
were 1.3 million elderly people in nursing homes throughout the country,
with half over the age of 85 and more than 80 percent severely impaired
(requiring assistance with 3 or more ADLs) (Kaiser 2001).

# Trend Toward Home and Community Based Services

When Medicaid began in 1965, the federal government mandated that states
provide nursing home care for adults. Medicaid expenditures escalated
due to the high costs of nursing home care and the high number of people
being served, as a result of the growing population of elderly people in
our society, as well as new medical technology that has allowed people
with congenital and acquired disabilities to survive and live longer
lives. This combination of high cost and high demand led to the
exploration of more cost effective ways to deliver skilled nursing
services. In 1970, the federal government mandated that Medicaid
programs pay for home health care services as an alternative to nursing
homes.

Beginning in the 1980s, the federal government changed the rules to give
states more options to use Medicaid dollars for HCBS. While State
Medicaid Plans must provide all services consistently throughout the
entire state, section 1915(c) waivers allow states to design HCBS
programs for specific populations in specific areas. At the same time,
states developed mechanisms, such as requiring Certificates of Need
(CON), to limit the construction of new nursing homes that could
potentially contribute to the escalation of costs as a result of low
occupancy rates.[^24] Thus, both states and the federal government have
been trying to move the Medicaid program away from it's "institutional
bias."

This trend was accelerated by a 1999 Supreme Court case, known as the
Olmstead decision. The Court observed that "confinement in an
institution severely diminishes the everyday life activities of
individuals, including family relations, social contacts, work options,
economic independence, educational advancement, and cultural
enrichment." Under the Americans with Disabilities Act (ADA), the
Supreme Court ruled that under most circumstances States must consider
providing community-based services for people with disabilities who
would otherwise be entitled to institutional care.[^25] While many
states are actively working to implement the Olmstead decision, the
funding and planning for these activities has largely bypassed AI/AN
communities because they have never had facilities for institutionalized
long term care.

It is easy to confuse Medicare Home Health regulations with Medicaid
Home Health regulations. Medicare is the federal health care program for
older people. Medicare only pays for skilled nursing home care for a
very limited time after a person is hospitalized.[^26] Historically,
Medicare has paid for most of the home health services for elderly,
while Medicaid has paid for most of the nursing home services for the
elderly. However, that is changing as Medicaid becomes more involved in
home and community based services. Medicare's short term, medical
services are aimed at rehabilitation; while Medicaid's home care,
personal care and home-and-community-based care are long-term
habilitation services.

To receive payment under Medicare for home health services, a Home
Health Agency must be licensed and regulated by Medicare. The rules and
regulations for Medicaid home care may be different. For example, the
Medicare program limits home health services to those who require
skilled nursing care or therapy services, while Medicaid is less
restrictive. Also, Medicare requires a registered nurse to supervise
personal care services, but this requirement was removed from the
Medicaid program in 1993. In fact, one of the trends in Medicaid is to
have consumer-directed home care programs, which is considered less
expensive because of lower costs of supervision, fringe benefits and
wages (Weiner 2000).

While the national trend has been away from institutionalization, many
tribes have been troubled that their elders in need of skilled nursing
care have been sent far away from their family and community to nursing
homes that are unresponsive to their cultural needs. There were only 12
tribally-operated nursing homes in 1993 (Baldridge 2001). Only 10 of the
34 states with tribes had tribally-operated nursing homes (Baldridge
2001). During the regional meetings held in Indian Country by the
Assistant Secretary of the Department of Health and Human Services in
1995, several tribal leaders expressed frustration that tribes were
unable to obtain Certificates of Need from states to build nursing
homes. Yet, this may have prevented tribes from investing in a service
that would not have received the level of reimbursement to be
self-supporting. According to Baldridge (2001, p. 150), "Several nursing
homes in Indian Country remain in operation today only because tribes
heavily subsidize them." Some tribes report difficulty filling their
nursing homes to capacity (Kauffman 2001).

While there has been a national trend toward home and community based
services, the infrastructure to provide those services also has been
lacking in American Indian and Alaska Native communities. Dave
Baldridge, Executive Director of the National Indian Council on Aging,
explains some of the problems:

In addition to complicated rules governing nursing care, tribes face an
equal number of problems trying to secure Medicaid funding for home-and
community-based long-term care services. Under Medicaid, the state may
not cover the services offered or needed by the tribe. If they do, the
requirements for operating such services may be too difficult for a
tribe to meet. The state's Medicaid waiver services may not include the
tribe, or the number of individuals approved for services under the
state's waiver may be too few to make it economically or geographically
feasible for services to reach tribal communities. (Baldridge 2001, p.
153)

Thus, anecdotal evidence suggests that states are not designing their
Medicaid long term care programs to meet the needs of American Indian
consumers or to facilitate the role of tribes as providers of home and
community based long term care services. However, further research is
needed to better understand the situation.

# Choices that Shape State Medicaid Programs

Most states are concerned about controlling the costs of their Medicaid
programs to limit the portion that is funded by state expenditures.
Costs are controlled by manipulating the following variables:

Covered Services

> Eligibility
>
> Reimbursement Structures and Rates

In addition to meeting the federal requirements, states can add optional
services and determine the duration and intensity of those services.
While the federal government requires states to cover some people, the
states may expand eligibility on the basis of income, disability and/or
geographic area. All of these state decisions can affect Medicaid
services to eligible tribal members and whether a tribe can be
reimbursed for services they are already providing. If a tribe is
providing services reimbursable by Medicaid, the level and structure of
reimbursement will also affect tribes.

Medicaid expansions are highly political. There are advocacy groups that
represent consumers with specific health care problems that want more
types of services. There are organizations that represent different
types of health care providers that want to be included in Medicaid
coverage and to have higher rates of reimbursement. There are taxpayer
groups that want to limit state expenditures for Medicaid and resist any
changes that would increase the cost to the state. In many states, the
number of tribes is so small and the number of tribal members is such a
small percentage of the state population that tribes are "not even on
the radar screen" for Medicaid Directors. So, tribes must not only
participate in the development of Medicaid plans, they must also network
with other groups to achieve their goals.[^27]

## IHS/HCFA MOA

In 1996, the Indian Health Service and the Health Care Financing
Administration (HCFA)[^28] signed a memorandum of Agreement (IHS/HCFA
MOA) that redefined payment for Medicaid services provided in an IHS
facility to include tribally-operated facilities and tribally-owned
facilities. Under this agreement, states can receive 100 percent Federal
Medical Assistance Percentage (FMAP). This resulted in an atmosphere of
greater cooperation between states and tribes in the development of
Medicaid policies and plans (Dixon 1998).

However, there has been some question about the interpretation of the
specific wording in the IHS/HCFA MOA. Part III.B.1 of the agreement
states that HCFA shall:

> Revise its payment policy to provide 100-percent FMAP with respect to
> amounts expended by the state for Medicaid services to eligible AI/ANs
> received through tribally owned facilities operating under a 638
> agreement. . .

At issue is the interpretation of the word "through." Some states have
taken the most narrow interpretation to mean "in a facility." Others
have taken a more liberal interpretation to mean "administered through a
facility." Thus, a home or community based long term care service
administered through a tribal facility could be eligible for 100 percent
FMAP.

A federal match of 100 percent would not only fulfill a federal trust
responsibility, but it would also provide a win/win situation for states
and tribes to work together to design long term care programs.

Currently, the provisions in the IHS/HCFA MOA are being codified in the
proposed language for the Reauthorization of the Indian Health Care
Improvement Act. It would be wise for tribes, the IHS, and CMS to look
at the proposed language to see if it would result in 100 percent FMAP
for home and community based long term care services provided by
tribes.[^29]

# Types of Services

State Medicaid Plans and waivers specify what types of services will be
provided.

The federal government requires that all home health services provided
under the Medicaid program must be authorized by a physician as
medically necessary and be part of a written plan of care. The federal
government mandates that states provide some types of home health
services including:

> Nursing
>
> Home health aides
>
> Medical supplies
>
> Medical equipment
>
> Appliances suitable for use in the home

States have the option of providing additional services under home
health care in their State Medicaid Plans, including:

> Personal care services
>
> Physical therapy
>
> Occupational therapy
>
> Speech pathology
>
> Audiology
>
> Rehabilitation
>
> Private duty nursing
>
> Transportation

States may use the 1915( c ) waiver authority to cover the optional
services listed above and/or additional services, such as:

> Case management
>
> Homemaker
>
> Home health aides
>
> Personal care services
>
> Adult day health
>
> Habilitation
>
> Respite care
>
> Home modifications
>
> Vehicle modifications
>
> Assisted living
>
> Chore services

All states are using this waiver authority. In 2000, there were 242
waiver programs approved by the federal government. But, states must
decide which types of services will be covered for which populations
under their waiver programs. Tribal participation in that decisionmaking
could affect the types of services available to tribal members, the
reimbursement to the tribe for existing services, and the employment
opportunities for tribal members.

Tribes may be uniquely positioned to provide certain types of services
that are optional under State Medicaid Plans or waivers. In fact, tribes
may already be providing these services, but not receiving needed
reimbursement from Medicaid. Yet, if a state does not choose to include
these options in the State Plan or a 1915 (c ) waiver, then tribes will
not be able to receive the Medicaid funds.

More importantly, tribes that provide these services with Medicaid
reimbursement can build a tribally-based long term care system. This
infrastructure enhances the capacity of tribes for self-determination
and self-governance, a goal shared by the federal government.

## Personal Care Services

Personal care services may include assistance to individuals in
activities of daily living (ADL), such as bathing, dressing, eating,
toileting and transferring from a bed to a chair. It may also includes
Instrumental Activities of Daily Living (IADL), such as personal
hygiene, light housework, laundry, meal preparation, transportation,
grocery shopping, using the telephone, medication management and money
management.

Tribes are extremely well positioned to organize the provision of these
types of services, particularly since they do not have to be supervised
by a medical professional. Not only would Medicaid funding enhance the
quality of life for tribal members with disabilities, but it would also
provide a form of employment for tribal members. Under the Medicaid
regulations, relatives can be paid for providing personal care services,
except for spouses of patients or parents of minor children who are
patients.

## Homemakers 

Homemaker services include such tasks as meal preparation, cleaning, and
grocery shopping. While these activities are often performed by personal
care attendants, a person may need homemaker services without requiring
assistance with activities of daily living. This could provide a source
of employment for tribal members.

## Chore Services

Chore services are different from homemaker services because they are
more sporadic and they may be beyond the capability of the homemaker.
For example, chores may involve snow shoveling, installing grab bars,
heavy lifting of furniture or washing windows. It could also include
home repairs. Again, these tasks could usually be performed by community
members.

## Home Health Aide Services

States can use any criteria to define home health aides. Home health
aides do not have to be associated with a Medicare approve home health
agency. This allows tribes and tribal members to participate in the
provision of these services. In Arizona, 5 tribes are contracting with
the Arizona Long Term Care System (ALTCS) to provide home health
services either through tribal operations or self-employed individual
providers who are tribal members (Kauffman 2001)

## Respite Care

When disabled family members are cared for at home, the caregivers often
need a break. In a tribal setting, people would be more comfortable
having family or tribal members provide respite care. Under the Medicaid
rules, these individuals could be paid for providing these services.

## Case Management

While case management is usually regarded as a medical or nursing
activity, the Medicaid program gives the states an option of using
"targeted case management" to assist Medicaid recipients in "gaining
access to needed medical, social, educational and other services." This
is called "targeted" because it is intended to serve a limited,
specified population. This activity can occur outside of a medical
setting and include such activities as assistance in obtaining food
stamps, energy assistance, emergency housing, and legal services. Tribes
may already be providing these types of activities to Medicaid
beneficiaries without receiving reimbursement. These types of services
could be provided through the social service programs funded by the
Bureau of Indian Affairs, where staff may not be knowledgeable about
Medicaid or equipped to bill Medicaid. In Arizona, an urban Indian
clinic is providing case management under ALTCS for 15 tribes (Kauffman
2001).

## Transportation

Most tribes try to provide transportation to medical appointments for
the elderly and disabled. Reimbursement for medically-related
transportation should be covered under the regular Medicaid program for
those who are eligible for Medicaid. Under HCBS waivers, Medicaid can
also cover transportation to other community-based services that are
part of the person's plan of care, such as day programs for people with
mental retardation and other developmental disabilities.

## Home Modification

Home modifications can include installing wheelchair ramps, widening
doorways, and retrofitting bathrooms and kitchens. The high level of
diabetes and subsequent complications leading to amputations has
resulted in a disproportionate number of American Indians who are
wheelchair users. Funding of home modifications could be an important
program in Indian Country.

## Assisted Living

While Medicaid will not pay for housing, food, or utilities, it can
cover the types of services that augment "room and board" in an assisted
living setting. These settings must maintain a "homelike environment."
Thus, it has to be a residential model, rather than an extension of a
nursing home. Some states have developed programs combining subsidized
housing with Medicaid HCBS waivers to provide assisted living
alternatives for low income people. This approach may appeal to tribes
that have been unable to achieve their goals of having a
tribally-operated nursing home. However, at least one tribe has closed
their assisted living facility due to low utilization because HCBS
enables elders to live at home until they require nursing home care.

## Rehabilitation

States have found a great deal of flexibility in using the
rehabilitation option. It can be applied to people with either physical
or mental disabilities, including psychosocial rehabilitation for people
with mental illness. Further exploration is needed on the opportunity
for funding tribally-operated alcohol and drug abuse treatment programs
for people with dual diagnoses.

# Eligibility for Services

Eligibility for Medicaid is based on both financial criteria and
categories that are defined in federal law. The categories that are
relevant for long term care are: aged, blind, and disabled. However, as
states design their 1915 ( c) waivers, they often target specific
populations for specially designed services. To be eligible for those
services, a person who meets the financial criteria must also meet the
criteria for the targeted population. Waivers may be designed to target
populations in a limited geographic area, which could include or exclude
tribes.[^30] Participation in the development of State Medicaid Plans
and waivers would give tribes the opportunity to have their unique needs
considered as eligibility criteria are developed.

Tribes have already made great strides in getting the Health Care
Financing Administration (now the Centers for Medicare and Medicaid
Services (CMS)) to address some unique issues relating to the counting
of resources. Following a study of *Indian Health Care in Nine State
Medicaid Managed Care Programs* (Dixon 1998) and a national meeting held
by the National Indian Health Board, the State Medicaid Manual was
revised to clarify that tribal lands, trust and settlement income,
objects that have cultural significance, and other uniquely Indian
resources were not subject to estate recovery (Kauffman et al 2001).

## Categories

The three Medicaid categories identified in federal law for Medicaid
coverage that generally apply for long term care are: aged, blind, and
disabled.

For Medicaid, the aged category is defined as 65 years old or older.
This is also the age for eligibility for Medicare, the federal program
that serves elderly people regardless of income. It should be noted that
Medicaid provides many services not covered by Medicare, such as
prescription drugs and long term care. When both programs cover the same
services, federal rules state that Medicare pays before Medicaid. There
are programs that use Medicaid dollars to pay for the premiums, co-pays
and deductibles for Medicare Part B.

Federal Medicaid criteria for blind and disabled are substantially the
same as those set by the Social Security Administration for Supplemental
Security Income (SSI). The blind category is separate from the
disabilities category, probably because most blind people do not meet
the criteria for disabled. Yet, they require some types of specialized
assistance.

Disabled is defined as having a long-lasting, severe, medically
determinable physical or mental impairment. To be eligible for Medicaid
in the disability category, an individual must be unable to work at a
level of income more than \$700 per month.

In addition to meeting the conditions for these categories, an
individual must be a U.S. citizen[^31] and a resident of the state, as
well as meet financial criteria. States may not restrict Medicaid
eligibility based on medical condition, type of services needed or place
of residence.

## Targeted Groups

One way for states to control costs is to limit eligibility for certain
types of services to very specific populations. These are called
"targeted groups." This can only be done through the waiver process. An
example of a targeted group used in Medicaid HCBS waivers are children
from birth to 21 who have chronic health problems.

It has been noted that "one group for which states have historically not
developed specific programs or service systems is persons ages 18 to 64
who have physical disabilities -- a group that is frequently
underserved" (Smith 2000, p. 60)

A subset of this group, people ages 40-64 with physical disabilities,
covers those people with disabilities resulting from complications from
diabetes who are too young to qualify for Medicare. There is a
tremendous opportunity for tribes, states and the federal government to
work together to address the needs of this group.

## Financial Eligibility

Financial eligibility for Medicaid is based on both income and
resources. Anyone who qualifies for other Medicaid programs will also
qualify for long term care programs, if they are needed. However, there
are some provisions for long term care that make people eligible who
would not otherwise be eligible for Medicaid.

For all Medicaid programs, the federal government requires states to
cover individuals at a specified threshold below the poverty level.
States may choose to expand that coverage to people at the 100 percent
of poverty level, and to extend it even further to people above the
poverty level who are considered medically needy. However, the federal
government sets a ceiling on the income level for its participation in
medically needy programs.[^32] States must cover medically needy
pregnant women and children before they can extend the benefits to
elderly persons or persons with disabilities.

Most states use SSI as the basis for determining financial
eligibility.[^33] However, states may develop their own ways of counting
resources. For example, states may chose to extend their Medicaid
coverage to more people by disregarding some types of resources that are
limited by SSI, such as the cash value of life insurance policies.
Disregarding specific types of resources is one area where tribes can
help states develop policies that would not penalize American Indian and
Alaska Native people for resources that result from their tribal status.

Long term care financial eligibility rules for Medicaid require states
to deduct income to provide for a spouse of an individual in a medical
institution.[^34] However, states make the decisions about how much
income to reserve and what amount of assets to reserve for spousal
protection. This is another area where tribes can advise the state to
assure that the cultural, social and economic situation in Indian
Country is considered appropriately.

Certain approaches are used to allow people with high medical costs to
access Medicaid when they are over the income and resources limits. One
approach is the "spend down" provision, when Medicaid covers the costs
of health care after the individual has spent their own income to cover
costs to the point where they would be eligible. Another approach is the
Miller trust, which allows people to divert their income into a trust
fund that specifies that the state will receive any amounts remaining in
the trust after the person's death up to the amount of Medicaid benefits
paid.[^35]

## Parity between Institutionalization and Home and Community Based Care

Both the federal government and the state governments have tried to
eliminate financial eligibility rules that create incentives for people
to choose nursing homes, or other institutional care, over home and
community based care.

Recognizing the high cost of institutional care, the Medicaid program
originally allowed states to extend benefits to people with higher
incomes who required nursing home care or other types of
institutionalization. This was called the "300 percent income rule." It
allowed people with a gross income of 300 percent of the SSI level to be
eligible for Medicaid if they were residing in a medical
institution.[^36] In 1981, when HCBS waivers were enacted into law, the
300 percent rule extended to people who could be served in the home and
community. States are allowed to provide HCBS waiver services to
children without regard to their parent's income or assets, and to
married people without regard to their spouse's income. However, there
is a "post-eligibility cost-sharing burden." This requires individuals
to use a portion of their income for medical expenses. States have
flexibility in determining how much income an individual can retain.

In 1982, the Katie Beckett, or TEFRA, option was enacted into law. Prior
to this time, children who were severely handicapped were eligible for
Medicaid if they were institutionalized, regardless of their parents'
income. Under those rules, institutionalized children were not
considered part of their parents' households; but children living with
their parents were not automatically qualified for Medicaid because they
were considered part of their parents' households and parent income and
assets were deemed available to the children. This institutional bias
was changed with the Katie Beckett or TEFRA option. Now, a child with
severe disabilities may qualify for Medicaid regardless of parental
income if the child requires the level of care normally provided in an
institution, and the cost of community services does not exceed
institutionalized care, and home care is considered appropriate. States
may respond to this mandate either through a TEFRA option in their State
Medicaid Plan or through a HCBS waiver. Families would not have cost
sharing under the TEFRA option, but states could impose cost sharing
under the HCBS waiver.

## Estate Recovery

Federal law requires that two groups of Medicaid beneficiaries use the
assets remaining after they die to pay back the Medicaid program. These
two groups are people who were 55 years old or older when they first
received Medicaid benefits[^37], and those who received Medicaid nursing
facility or ICF/MR benefits regardless of age. States can use the
probate laws in their state to define the estate, or they can use a
broader definition that captures additional assets.

Many AI/AN who would otherwise be eligible for Medicaid have been
unwilling to apply because of the estate recovery provisions.[^38]
However, the recent clarifications by CMS regarding tribal property that
is exempt from estate recovery could change this. Recent changes to the
State Medicaid Manual include the following instructions for states
(Kauffman 2001, p. 13):

1.  Certain AI/AN income and resources (such as interests in and income
    derived from Tribal land and other resources currently held in trust
    status and judgment funds from the Indian Claims Commission and the
    U.S. Claims Court) that were exempt from Medicaid estate recovery by
    other laws and regulations:

2.  Ownership interests in trust or non-trust property, including real
    property and improvements:

    a.  Located on a reservation (any federally recognized Indian
        tribe's reservation, Pueblo, or Colony, including former
        reservations in Oklahoma, Alaska Native regions established by
        Alaska Native Claims Settlement Act, and Indian allotments) or
        near a reservation as designated and approved by the BIA, or;

    b.  For any federally recognized tribe not described in (a), located
        within the most recent boundaries of a prior Federal
        Reservation, or;

    c.  Protection of non-trust property described in (a) and (b) is
        limited to circumstances when it passes from an Indian (as
        defined in section 4 of the IHCIA), to one or more relatives (by
        blood, adoption, or marriage), including Indians not enrolled as
        members of a tribe and non-Indians, such as spouses and
        step-children, that their culture would nevertheless protect as
        family members; to a tribe or tribal organization; and/or to one
        or more Indians.

3.  Income left as a remainder in an estate derived from property
    protected as described above, that was either collected by an
    Indian, or by a tribe or tribal organization and distributed to
    Indian(s), as long as the individual can clearly trace it as coming
    from the protected property.

4.  Ownership interests left as a remainder in estate in rents, leases,
    royalties, or usage rights related to natural resources (including
    extraction of natural resources or harvesting of timber, other
    plants and plant products, animals, fish and shellfish) resulting
    from the exercise of Federally-protected rights, and income either
    collected by an Indian, or by a tribe or tribal organization and
    distributed to Indians(s) derived from these sources as long as the
    individual can clearly trace it as coming from protected sources;
    and

5.  Ownership interests in or usage rights to items not covered by 1-4
    above that have unique religious, spiritual, traditional, and/or
    cultural significance or rights that support subsistence or a
    traditional life style according to applicable tribal law or custom;

6.  Government reparation payments to special populations are exempt
    from Medicaid estate recovery.

CMS has not issued a consumer-friendly interpretation of these
directives, so many AI/AN are still confused about estate recovery.

While these provisions go a long way to address American Indian
concerns, there is a larger issue that could be considered as part of a
national Indian political agenda. In Child Health Insurance Programs
(CHIP) where Medicaid is augmenting Indian health care, the premiums,
deductibles and co-pays have been waived. Estate recovery can be
regarded as a type of deductible. So, there is a strong argument that
estate recovery should be waived entirely for American Indians and
Alaska Natives.

**Reimbursement Structures and Rates**

Both states and the federal government try to control the costs of
Medicaid programs by limiting the amount of reimbursement. This has been
done through both rate setting and reimbursement structures.

Particularly with programs that serve elders, tribes are the preferred
provider because they are most able to deliver culturally competent care
(Dixon 2001). Furthermore, tribal operations are located in the rural
areas where Medicaid recipients need the home and community based
services. However, it is often difficult for tribes to figure out how to
become contractors for certain types of state Medicaid programs. For
example, Community Health Representatives (CHRs) working for tribes
provide a variety of home and community based services, often including
transportation, usually without Medicaid reimbursement. A state outreach
effort to tribes is needed. As noted repeatedly, the state has a great
deal of flexibility in designing Medicaid programs, so it is possible to
design programs with tribal input that would allow tribes to deliver the
services most efficiently to tribal members.

*Reimbursement Rates*

Medicaid often pays below the rates charged by health providers to other
payers. This approach has worked in the past in many private settings
due to cost shifting -- private insurance companies and private payers
paid higher rates that subsidized public programs. However, in the age
of managed care, profit-making health care organizations and
competition, the rates paid by almost all purchasers of health care have
been lowered to the point where there is little room for cost shifting.

In the Indian health system, there has never been room for cost shifting
because Congress has failed to fully-fund the Indian Health Service and
most American Indian and Alaska Native people do not have private or
employer-paid health insurance. So, if tribes are going to be service
providers under Medicaid long term care programs, they must be paid at a
rate that covers their expenses.

*Reimbursement Structures*

There is a growing trend toward highly coordinated systems. This seems
desirable to avoid duplication of services, to combine Medicaid and
Medicare resources[^39], and to provide a single point of entry for
consumers. However, highly coordinated statewide programs are probably
going to exclude tribes. One reason is that tribes are most interested
in serving their own tribal members. They are unlikely to bid on, or be
awarded, a contract to serve a population that is primarily not tribal
members. One approach to dealing with this is to create a carve out for
tribes.

In the current economic system, highly coordinated systems usually
involve managed care and a capitated approach to reimbursement. Assuming
risk in a capitated reimbursement structure is difficult for tribes. If
states want tribes as Medicaid long term care providers, they must
develop some small scale, fee-for-service programs, or fixed-price
contracts with a defined scope that limits liability.

The Program for All-Inclusive Care for the Elderly (PACE) is one model
that is receiving a lot of attention, particularly since the Balanced
Budget Act of 1997 changed it from a demonstration project to a
permanent program under Medicaid and Medicare. On Lok Senior Health
Services, the first demonstration project that led to PACE, did, in
fact, serve a small group of ethnically distinct elderly. However, most
subsequent demonstration projects have been designed at the state level
and none have been operated by tribes (Alper and Gibson 2001). While
PACE is generally intended to treat groups of less than 200 adults,
experts suggest that "it may not work well in sparsely populated rural
areas" (Alper and Gibson 2001, p. 108). There may be a need to develop a
similar model in conjunction with American Indian communities that are
designed from the ground up, in the same way that the On Lok model
evolved.

Another model that has been suggested for Indian Country is Independent
Living Centers designed to support disabled individuals by providing
services such as skills training, information and referral, advocacy,
peer counseling, legal services, communication services and Social
Security assistance. These services qualify for Medicaid funding.

For tribes to participate successfully in the delivery of home and
community based services, it may be best to proceed incrementally.
Tribes could assume responsibility for the tasks that they are best
suited to perform or coordinate, adding other programs over time. Under
the Arizona ALTCS managed care system, for example, tribes are able to
provide some home and community based services without having to provide
all services (Kauffman 2001). One tribe in Wisconsin is providing
caregiver services under the Community Options Program (Kauffman 2001)
This approach requires states and tribes to work closely together with a
shared vision.

It is more expensive for states to administer many small scale contracts
than to issue three or fewer large contracts with managed care
providers. However, the large contracts are likely to be awarded to
large profit-making managed care organization that are headquartered
outside the state and are not familiar with specific conditions, needs
and services in Indian Country.

Tribal participation in state long term care planning activities can
help assure that the reimbursement structures are at a scale and use an
approach that would enable tribes to become Medicaid providers. Tribes
can also advise the state about requirements that are prohibitive for
their participation as long term care providers. For example, Kauffman
(2001) found that there was not tribal participation in Michigan's Long
Term Care System due to a variety of factors:

> Michigan's Long Term Care System provided limited access for tribal
> members and tribal facilities. Although tribes may contract to provide
> Home and Community Based services, no tribes were currently enrolled
> to provide Home Health services, Home Visit Nurses, Hospice services,
> Long Term Care services or Nursing Home services. . . Some concerns
> related to tribes providing long term care services included: (1)
> limited contract health dollars, (2) difficulty meeting the 24 hour
> supervision requirements for state licensing, (3) staff-client ratios
> that were too high, (4) distance from tribal members communities and
> (5) financial and labor investments necessary to maintain quality
> staff. (P. 152)

Another barrier cited by tribes in other states is the state screening
and certification of personal care givers, which is contrary to the
principles of tribal sovereignty. The Inter-Tribal Council of Arizona
(ITCA) has found that start up costs may be prohibitive for tribes.
Also, ITCA has found that the number of tribal members who quality for
Arizona Long Term Care Services (ALTCS) is often too small to make it
feasible to delivery HCBS.

Both states and tribes need to balance the goals of quality of care with
access to care. Setting standards that are too costly may result in
tribes being unable to qualify as providers of services; and, without
tribes as providers, Medicaid beneficiaries may not have access to
covered services. The implications of having different standards of care
for Medicaid recipients residing in different parts of a state may
create a liability for states. Some potential solutions for this dilemma
are: 1) provide higher rates of reimbursement for tribes; 2) provide
subsidies or grants to tribes to help them achieve standards; 3) support
training for potential employees in Indian Country to reduce the costs
of recruitment and retention, and 4) create a carve out for tribes that
is managed separately from other state programs and has appropriate
standards developed through tribal consultation.

**Summary**

Recognizing that Medicaid is the leading source of financing for long
term care in the United States, this paper has identified many
opportunities to develop Medicaid long term care programs to better meet
the needs of American Indians and Alaska Natives. States' choices about
covered services, eligibility, and reimbursement affect participation in
Medicaid by AI/AN consumers, as well participation by tribes as
providers. To turn these opportunities into action requires tribal
consultation, technical assistance and a shared vision.

*Tribal Consultation*

Tribal consultation is the process by which states can learn about the
needs of tribes and tribal members. Through tribal consultation, states
can formulate their Medicaid programs in a way that will meet the needs
of state citizens who are tribal members. If the state recognizes that a
tribe may be the best provider of culturally-appropriate and accessible
services for tribal members, the state can design its programs to assure
that tribes can participate as providers.

While some states have a designated representative on an advisory
committee or board that provides direction for state Medicaid planning,
this is insufficient to constitute tribal consultation. Tribal
consultation requires that the state contact the elected tribal official
of every federally-recognized tribe in the state to invite their
participation in a discussion of issues. Some states do this through
regular quarterly meetings with tribal leaders and tribal health
directors, while others use ad hoc meetings.

Tribal consultation is more than states listening to tribes. In the
federal context, tribal consultation is about a government-to-government
relationship that equalizes power in decision-making. When the federal
government transfers its responsibility to states to formulate Medicaid
plans and waivers, the federal government still has a trust
responsibility to assure that the needs of tribes are addressed
appropriately. Over time, CMS has assumed this oversight role in the
review of 1115 waivers and 1915 (a) and 1915(b) waivers. It is not clear
whether this is also being done with 1915 (c) waivers.

The federal government may require states only to notify tribes and to
allow them to comment during a comment period. This is bound to be
ineffective. Few tribes have employees who can take the time to read,
analyze and respond to the highly technical documents that comprise
State Medicaid Plans and waiver applications. Furthermore, this is not a
culturally appropriate style of communications. Tribal consultation
requires that tribes actually understand the issues, and further that
there is a face-to-face discussion. To actually understand the issues,
there may need to be a training period.

Not every tribe can afford to devote the resources to understanding the
issues and to participating in meetings. It would be helpful to have
planning grants for tribes to increase tribal participation. Another
approach would be for tribes in a particular state to organize
themselves into an association, or use an existing association, and
elect one or more representatives to participate in the consultation
process on their behalf. This can also be problematic if the information
and issues are not conveyed back to all the tribes.

It should be noted that states often work on tight deadlines and that
tribal consultation often takes a long time to achieve consensus.
Therefore, the long term approach to building relationships and
knowledge is usually more effective than an ad hoc meeting to gain
input.

*Technical Assistance*

Medicaid is a highly technical area that few people fully understand.
Tribes will need technical assistance to structure or restructure
programs to be Medicaid reimbursable, to become Medicaid contractors,
and to submit their bills in a way that maximizes the resources
available to deliver services.

One model for technical assistance is the Inter-Tribal Council of
Arizona, which received funding from the Indian Health Service to assist
tribes in developing home and community based services that would be
eligible for ALTCS reimbursement (Dixon 1998). Arizona holds quarterly
meetings with tribal long term care contractors and quarterly in-service
training for tribal long term care case managers (Kauffman 2001). In
addition, they publish a quarterly newsletter for tribal long term care
providers (Kauffman 2001).

*Vision*

The most important element for developing Medicaid long term care
programs that meet the needs of American Indians and Alaska Natives is a
vision that is shared by tribes, state governments, and the federal
government. To develop a shared vision requires good communication
between the parties, as well as model programs that provide tangible
evidence of successful and sustainable approaches. A first step in
developing a shared vision is to make sure that all the stakeholders
have the same goals.

**ACKNOWLEDGEMENTS**

The author would like to thank Bruce Finke, MD, for providing guidance
and resources in the development of this paper. Thanks also to Gale
Arden, Centers for Medicare and Medicaid; Nancy Weller and Kay Branch,
State of Alaska; Muriel Petersen, State of North Dakota; and the
participants in the IHS Long Term Care Roundtable held in Albuquerque,
NM, April 11-12, 2002, for review and comments on drafts.

**REFERENCES**

Alper, Joseph, and Rosemary Gibson. "Integrating Acute and Long-Term
Care for the Elderly" in Stephen L. Isaacs and James R. Knickman, eds,
*To Improve Health and Health Care 2001: The Robert Wood Johnson
Foundation Anthology.* San Francisco: Jossey-Bass. 2001.

Baldridge, Dave. "The Elder Indian Population and Long-Term Care" in Mim
Dixon and Yvette Roubideaux (eds), *Promises to Keep: Public Health
Policy for American Indians & Alaska Natives in the 21^st^ Century* .
Washington, DC: American Public Health Association. 2001.

Dixon, Mim. *Indian Health in Nine State Medicaid Managed Care
Programs.* Denver, CO: National Indian Health Board. 1998.

Dixon, Mim. "The Unique Role of Tribes in the Delivery of Health
Services" in Mim Dixon and Yvette Roubideaux (eds), *Promises to Keep:
Public Health Policy for American Indians & Alaska Natives in the 21^st^
Century* . Washington, DC: American Public Health Association. 2001.

Kaiser Commission on Medicaid and the Uninsured. "Medicaid Facts:
Medicaid's Role in Long Term Care." Washington, DC: The Henry J. Kaiser
Family Foundation. March 2001.

Kauffman, Jo Ann, Patricia Hansen, Victor Paternoster. *Into the Future:
Indian Health, Medicaid, Managed Care & SCHIP.* Denver, CO: National
Indian Health Board. Draft Report, December 20, 2001.

Smith, Gary, Janet O'Keeffe, Letty Carpenter, Pamela Doty, Gavin
Kennedy, et al. *Understanding Medicaid Home and Community Services: A
Primer.* Washington, DC: Office of the Assistant Secretary for Planning
and Evaluation, U.S. Department of Health and Human Services. 2000.

Tilly, Jane, Susan Goldenson, Jessica Kasten. *Long Term Care:
Consumers, Providers and Financing -- A Chart Book.* Washington, DC:
Urban Institute. 2001.

Wiener, Joshua M., David G. Stevenson, Jessica Kasten. *State Cost
Containment Initiatives for Long-Term Care Services for Older People.*
Washington, DC: Congressional Research Service, The Library of Congress.
May 8, 2000.

######## Roundtable Discussion of Implications and Recommendations Regarding Medicaid and LTC Financing

1.  **Better Understanding of LTC Services:** At the local tribal and
    urban Indian community level, Long Term Care (LTC) programs are
    generally disjointed and not well known by the community leaders or
    health administrators. Most of the existing services available for
    LTC are channeled through state agencies and may not be incorporated
    into tribal or urban health systems. Too often, the community
    perspective of LTC is limited to the physical construction of a
    "nursing home", although this is the most costly, most restrictive
    and least desirable by beneficiaries of all the LTC options. More
    information is needed at the local level about options to develop
    and finance "home and community based services" to meet LTC needs.

2.  **Support for Planning:** The Federal Government, via CMS, IHS, AoA
    and other sources, should provide funding for LTC planning that will
    include tribes, states, counties and Agencies on Aging to, (a)
    support tribal participation; (b) provide training for both tribes
    an states; (c) fund needs assessments; and (d) help develop a shared
    vision for LTC in Indian country. We need to better break-down the
    components within the continuum of Long Term Care, so that local
    communities understand that LTC is more than just nursing homes.
    Funding should be provided to develop educational materials that can
    be adapted to the unique circumstances of each tribal or urban
    community.

3.  **Demonstration Projects:** The Federal Government should embrace
    and support a partnership across various federal agencies to support
    Demonstration Projects in Indian Country that are community based
    LTC, that are small in scale, incremental, using local providers and
    which are not risk-based. There was some discussion that there may
    be a few tribal communities with the centralized population and
    resources to support programs similar to "On-Loc" or PACE, but
    require added technical assistance to get the programs started. Most
    tribal communities will require assistance to develop alternative
    demonstration projects that better meet their dispersed populations
    across several rural communities.

4.  **LTC Research Agenda:** A formal research agenda should be
    established for LTC in Indian Country, which would include studies
    in the following priority areas:

-   Economic viability of nursing homes in Indian Country;

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-   Economic viability, sustainability and community acceptance of
    Assisted Living Centers in Indian Country;

-   Economic viability, sustainability and community acceptance of
    Independent Living Centers in Indian Country;

-   Case studies which will help determine, (a) a registry of tribal
    programs; (b) best practices in LTC; (c) Lessons Learned from past
    experiences.

-   Home and Community Based Services, to assess existing waivers and to
    determine the needs and acceptability of services in tribal
    communities. To evaluate successful skilled nursing and Home and
    Community Based Services.

-   Assess and evaluate state consultation with tribes and urban Indian
    providers regarding state LTC plans, waivers and delivery of
    services;

-   Evaluation and research regarding the under-enrollment of American
    Indian and Alaska Natives in Medicaid for purposes of receiving
    assistance for LTC.

-   Examine existing reimbursement practices and rate structures for LTC
    services in Indian Country.

5.  **CMS and State Disclosures to Tribes and Individuals:** States, CMS
    and tribes should develop a "disclosure form" to reveal the full
    realm of potential liabilities or protection from liabilities to
    individual Indians making application for enrollment for Medicaid
    services, so that consumers will know in advance, if there will be
    future liabilities, such as estate recovery, cost-sharing or
    spend-down requirements for services. CMS should issue a paper to
    all states clarifying the services included in the 100% FMAP. These
    services should specifically include tribally delivered Medicaid
    covered home and community based services.

6.  **Diabetes and LTC:** The Indian Health Service, CMS, tribes and
    urban Indian health programs should develop model programs to target
    diabetes related disabilities in relation to the prevention or
    delivery of Long Term Care services. These model approaches could
    include combining multiple resources to ensure services are provided
    to maximum benefit of communities. These models could include
    efforts and initiatives to:

-   Prevent the advancement of complications due to diabetes that lead
    to requiring Long Term Care services;

-   Maintain current functioning and independence among diabetics;

-   Leverage funding and services to include Medicaid, Medicare,
    Diabetes Grants and other Sources.

7.  **State Consultation and Coordination with Tribes:** State LTC Plans
    should not be approved by CMS without documented evidence that the
    state engaged in meaningful tribal consultation in the development
    of the plan and any amendments. While the CMS requires states to
    consult with tribes in the development of "waivers" submitted to
    CMS, states are not required to consult with tribes when amending
    their State Plans. This is an oversight and should be corrected.
    More education and assistance to tribes and to urban Indian programs
    is needed to better service American Indian and Alaska Naïve elderly
    and disabled populations in need of LTC services., including
    education on Medicaid, Medicare, QMB and SLMB options. Each state
    with a significant American Indian or Alaska Native presence should
    employ a "liaison" staff position with specific responsibility to
    bridge the gap between tribal and urban Indian communities and state
    programs including Medicaid. As tribes become providers of Medicaid
    reimbursable services, such as LTC, they will be more involved in
    enrolling AI/AN eligible patients.

8.  **Indians with Disabilities**: Discussion and planning about LTC
    needs in Indian communities, must be expanded to reflect not only
    the needs of the Indian elderly, but also the needs of Indians with
    disabilities who may also require LTC services. More collaboration
    is needed between these two populations in developing LTC options.
    Local health providers, community leaders and policy-makers must
    involve both these groups as key stake-holders in planning LTC
    services.

9.  **Start-up Funding:** There is a sizeable disparity among tribes
    with regard to existing infrastructure and each tribe's ability to
    start up LTC services. Many tribes do not have the start up costs to
    develop reimbursable Home and Community Based Services or other LTC
    services. Once started these programs could become self-sustaining
    with adequate reimbursements. It is recommended that start up funds
    be provided to tribes to cover the initial planning and start-up
    costs.

10. **Ombudsman for Indians:** While each state is supposed to have an
    ombudsman to oversee and investigate complaints about mistreatment
    in nursing homes, a consistent theme arose in Roundtable discussion
    suggesting that complaints are not responded to. More advocacy is
    needed through existing or expanded ombudsman services for Medicaid
    patients who are mistreated, dropped from programs unfairly, or for
    other causes. A possible federal role may be needed to oversee state
    responses to tribal complaints.

11. **Task Force on Indian Long Term Care:** The Federal Government
    should keep tribal and urban Indian LTC providers informed of
    activities, plans and actions taken resulting from a recent
    initiative involving the Administration on Aging (AoA), the
    Administration on Native Americans (ANA), the Center for
    Medicaid/Medicare Services (CMS) and the Indian Health Service (IHS)
    to work together in developing a task force to address Long Term
    Care issues in Indian Country. Additional agencies, such as Housing
    and Urban Development (HUD) should be added to this important
    effort.

# 

![](media/image7.png){width="1.272047244094488in" height="3.0in"}

**LONG TERM CARE IN INDIAN COUNTRY: IMPORTANT CONSIDERATIONS IN
DEVELOPING LONG TERM CARE SERVICES**

**Linda J. Redford, R.N., Ph.D.**

The need for long term care services in American Indian/Alaska Native
communities has been recognized by the federal government and tribal
communities for over a decade. In 1990, the Indian Health Service (IHS)
convened a roundtable of experts on long term care. This group reported
that there existed a lack of focus on geriatric health care in the IHS
and concluded there was a need to develop a continuum of care, i.e., a
complete range of home, community-based and institutional services, to
meet the needs of Indian elders (Indian Health Service, 1993). The
consensus statement from the roundtable also emphasized the need for
systematic data on American Indian elders' long term care status before
the development of services could proceed:

> Long term care in reservation settings...has yet to be defined or
> quantified, and requires more analysis than has been done so far.
> Required data is either outdated or nonexistent. Needs assessments,
> particularly functional assessments, have not been extensively done on
> a community level. The data from these assessments must form the basis
> for measurements of demand as well as the planning and design of
> services (Indian Health Services, 1993, pg.5).

Tribal organizations have reiterated the importance of long term care.
At the 1992 National Indian Conference on Aging, 1,400 American Indian
elders and service providers ranked the need for long term care as first
among health concerns for elders nationwide (National Indian Council on
Aging, 1993).

Today, a decade later, there has been little movement by IHS to assume a
major role in long term care. Tribes are increasingly recognizing the
need to seek other public and private resources and/or develop the
resources internally to provide long term care for their elders. This
paper highlights factors important for tribes to consider in the
planning and development of long term care services.

#### Assessing Long Term Care Needs

#### 

The need for long term care in Indian Country is immediate and growing.
According to the 2000 Census, there are approximately 2.5 million people
who identify themselves solely as American Indian or Alaska Native. If
individuals reporting more than one racial/ethnic category are included,
there are 4.1 million American Indians in the United States today.

The numbers of American Indian/Alaska Native elders vary considerably,
depending on the source and the definition of elder. Using the
definition of elder as persons 55 years of age and older, there are
approximately 296,000 American Indian/Alaska Native elders according to
the 2000 Census. If the age 60 years is used, there are over 205,600
elders. All of these numbers represent a significant increase over the
numbers reported in the 1990 Census. Part of the increase is the result
of an acknowledged undercount of American Indians in the 1990 Census,
but rapid growth in the elder segment of the American Indian population
accounts for a considerable portion of this change. It is estimated that
the American Indian elder population will grow just over 14 percent
between 1995 and 2030, more than doubling the number of persons likely
to need long term care.

#### *Collecting and Using Data*

"We already know the problems. We don't need more data, we need
solutions." These are common responses when the need for data on long
term care is suggested. They are also understandable given that past
efforts at data collection have not always resulted in fast responses.
Data have, however, substantiated the need for long term care and are a
key element in planning and developing services at the local level.

There are many sources of data and the source may dictate its use. Data
on population characteristics, such as U.S. Census data or data from
national surveys, help in estimating current and future needs in a large
population group. Local surveys will tell the story of current needs in
a tribe. The following sections focus on different sources of data, with
examples of what has been learned from the different sources about long
term care need in Indian Country.

## Using Existing Data Sources

Secondary data sources, such as the U.S. Census Data are commonly used
to estimate the need for long term care in a population. In the U.S.,
risk of disability and need for long term care has been shown to
increase with age among most ethnic groups. The Census provides
information on numbers and percentages of elders, allowing estimates of
long term care need.

In addition to advanced age, poverty and low educational levels have
been shown to have a strong association with poor health and a greater
likelihood of disabling conditions. Rather than directly influencing
health, poverty and low educational levels are often a proxy for poorer
access to healthcare, less information to inform positive health
behaviors, and fewer incentives to promote and protect one's health. The
1990 Census indicated that 36 percent of Indian elders age 65 and older
had incomes below the poverty level. Over 60 percent of American Indian
elders age 60 and over had not completed high school. This suggests that
the need for long term care among Indian elders is likely to be greater
than in the general population of the U.S.

The likelihood of disability is generally extrapolated from age and
socioeconomic data when using the Census. There is minimal information
in the Census pertaining directly to disability, although both the 1990
and 2000 Census do include a few questions about individual health and
physical function. In the 1990 Census, 25 percent of American Indian
elders age 60 and older reported a mobility limitation, 5 percent a
self-care limitation, and 10 percent reported both (Bureau of the
Census, 1990). Data on disability from the 2000 Census are not available
at this time.

Secondary data, particularly that based on national survey data and
Census reports, may not be particularly helpful to individual tribes in
planning long term care services. The diversity within the American
Indian/Alaska Native population is not adequately captured in national
data.

Indian Health Service data provide some insights into long term care
needs, although the data focus primarily on medical care issues. Mansion
(1989) studied IHS statistics on hospital admission, stay, discharge,
and readmittance by disease and age. He found repeated hospitalizations,
both for exacerbations of chronic conditions and also for the apparent
purpose of providing respite for overburdened families. He interpreted
these findings to indicate a lack of adequate long term care resources
in tribal communities. Manson also asserted that Indian Health Services,
despite their resistance to commit to long term care services, was
already deeply involved in long term care by the late 1980's. It might
be argued that, rather than truly providing long term care, IHS has
become the Band-Aid to cover inadequate long term care.

####### Surveys of Long Term Care Need

Community surveys are frequently used to identify and quantify long term
care needs. The 1991, the National Resource Center on Native American
Aging (NRCNAA) at the University of North Dakota, with money provided
through a cooperative agreement with the Administration on Aging, began
a project to promote needs assessments of tribal elders. Tribes are
invited to use a standardized survey instrument (*Identifying Our Needs:
A Survey of Elders*) and standard data collection procedures to conduct
local needs assessments. The data are analyzed by the University of
North Dakota and tribes are provided statistical data for their local
areas. The data are then added to the "aggregate" file that represents
an overview of Indian elders. Currently there are data from 83 tribal
needs assessments, with a total of 8,560 respondents (Ludtke and
McDonald, 2002).

Data from these surveys provide useful information to guide tribes in
planning long term care and monitoring the impact of that care.
Information is provided on specific disease conditions, as well as the
limitations resulting from those conditions.

Activities of daily living (ADLs) are a particularly salient indicator
of long term care need. For example, the Tribal Elders Survey has shown
that 18.5 percent of Indian elders need assistance with bathing as
compared with 12 percent of the general population. American Indians
displayed a higher prevalence of disability across all ADLs (NRCNAA,
2001).

In 1994, the Elderly Nutrition Program Evaluation (ENPE) assessed the
OAA Title VI nutrition program's effectiveness in serving American
Indian/Alaska Native elders. Over half of the meal program recipients
were overweight, placing them at high risk for heart disease, diabetes
and other chronic conditions. American Indians participating in the
study reported an average of three diagnosed chronic health conditions.
Chronic conditions are likely to affect function in older persons. Among
the ENPE participants, 33 percent had difficulty or were unable to shop
for food, 26 percent had difficulty or were unable to prepare meals, 24
percent had difficulty with bathing, and 12 percent had difficulty
taking medication (Ponza et.al., 1996).

##### 

##### Focus Groups and Talking Circles

Focus groups or talking circles with tribal members and service
providers is another approach to developing a general picture of
disability and LTC need. While these are not particularly effective
approaches to attaining actual measures of need, they are very useful in
identifying the overall scope of needs, prioritizing needs and
determining community preferences regarding how needs should be
addressed.

Hennessy, John and Roy (1998) used a combination of structured survey
interviews and focus groups to study long term care needs in the Santa
Fe Service Unit. Using surveys, they identified the numbers and
percentages of persons suffering from various health conditions and the
types of impairments and the levels of impairment among various age
groups in the population. Utilizing focus groups, they were able to
determine the physical and emotional impact of disabling conditions on
those providing care, primarily family members. They found many families
were overburdened with care responsibilities for disabled family members
and were not prepared to deliver the needed care. They concluded that
there is a need for comprehensive geriatric assessment, support
services, and caregiver training in American Indian communities

Focus groups and survey interviews are feasible on reservations and in
densely populated American Indian communities, but may have limited
value in urban and non-reservation rural communities where the target
population is more dispersed and cannot be easily identified. Only half
of American Indian elders live on reservations, with the remainder
spread across urban and rural areas of the U.S. Identifying the needs of
Indian elders residing off reservations poses a very different set of
challenges and requires different approaches. While this issue is beyond
the scope of this paper, it is an area that deserves concerted
attention.

## Comprehensive Assessment of the Elderly

Assessing the need for long term care services in a community is far
more complex than often realized. Surveys rarely provide all the
information necessary to fully identify and quantify long term care need
in a population.

Long term care needs are sometimes hidden or go unrecognized. Spouses or
other family members may gradually take over the roles of a loved one
without consciously recognizing the increasing levels of impairment.
Other times family members attempt to hide or deny the failing abilities
of a spouse or parent. Among American Indians, the cultural norms and
expectations around elder care may also influence the dialogue around
care-giving making it more difficult to identify unmet needs.

A serious issue, both for tribal communities and communities in general,
are the elders in poor health and with deteriorating physical and/or
mental abilities who live alone. Among this group, the more subtle
indicators of need for services often go undetected until there are
major health consequences. The elderly person who no longer remembers to
take medications properly or is too depressed to eat properly may not be
apparent to the casual observer or to the trained clinician who is too
busy to observe changes or does not understand cultural manifestations
of certain conditions.

The failure to recognize long term care needs is less likely in the
close-knit context of the reservation community, but only half of Indian
elders live on reservations. There is very little information on urban
Indian elders.

Comprehensive geriatric assessment programs have been proposed as a
strategy for identifying long term care needs in the elder population. A
major issue with geriatric assessment in the American Indian population
is the dearth of culturally appropriate tools for measuring physical,
functional and mental/behavioral impairment in the Indian population.
Daily activities necessary to live on many of the reservations in this
country are quite different than those of most other populations in the
U.S. Activities like chopping wood and hauling water are not asked on
the functional assessment tools used most frequently.

Accurate assessment of mental and emotional well-being is also
problematic given the vast differences in cultural beliefs about mental
illness, the labeling of emotions and their perceived causes, and the
variability in manifestations of mental and emotional problems. For
example, little is known about Alzheimer's disease in the Indian
population because of differences in acceptance, interpretation and
tolerance for the symptoms and behaviors. Likewise, the validity of
standard depression measures in the American Indian population is
questionable. Manson and colleagues (1990) developed the Indian
Depression Schedule (IDS) that includes consideration of local customs.
The Center for Epidemiological Studies Depression Scale has also been
shown to have good internal consistency in Indian populations (Curyto
et. al., 1997).

With culturally appropriate tools and well-trained assessors, the
individualized approach to geriatric assessment is desirable for
obtaining the most objective assessment of long term care needs. Initial
geriatric assessments are best conducted in the elder's usual living
environment, but this can be cost-prohibitive in rural areas where
distances between elders can be enormous.

Medical models of geriatric assessment are particularly time consuming
and costly. Generally, the medical geriatric assessment is not required
unless the elder has unstable or poorly managed chronic conditions or a
diagnostic evaluation is needed.

#### *Informal Caregiving*

The development of effective and efficient formal service system hinges
on understanding the role of the family and community in long term care.
The goal should be to complement and support existing patterns of care,
not to supplant them. Once the prevalence of long term care need is
established, the issue becomes how needs are currently being met, who is
providing the care, what assistance do the current caregivers need, and
what needs are not being met.

The bulk of long term care services in this country are provided within
the family. It is estimated that 90 percent of long term care for
American Indians/Alaska Natives is provided within the family and is
unpaid (Baldridge, Pecos, & Dosedo, 2000). National data indicate that
36 percent of long term care service expenditures are out-of-pocket.
There are no data on out-of-pocket expenditures for long term care among
Indian populations, but such estimates may be of little value. They
reflect only the monies spent on formal services and do not account for
caregiver time, the amount of lost wages, nor expenditures on necessary
supplies, medications, and private assistance with care.

Family care for elders is consistent with the values and stated
preferences of American Indians. Elders are held in high esteem and most
families want to care for their elders in ways that preserve and promote
their dignity and honor cultural traditions, but the gap between values
and the realities of caregiving can be immense.

Lifestyles among American Indians are changing, whether they live on the
reservation or in the city. Women, who are the primary caregivers, are
increasingly entering the workforce and are not available to provide
care. Young often leave the reservation, leaving the old to care for the
old. The demands for care have also increased dramatically in the last
few decades. Prior to the 1970s, few American Indians lived to advanced
ages. Today, life expectancy among American Indians is nearing that of
the general U.S. population. With increasing age comes an increasing
likelihood of needing long term care. Values around elder care are only
now being put to a stringent test in the American Indian population. The
growing concerns about elder abuse and neglect in this population may
reflect the stresses wrought when values and expectations collide with
reality.

In a study of caregivers residing in the IHS Santa Fe Service Unit, New
Mexico, Hennessy et.al. (1998) found that 60 percent of caregivers
considered their elder care responsibilities to involve substantial
physical and emotional demands. The problems experienced by the
caregivers included sleep deprivation, concerns about not doing a better
job of caregiving, not enough time for themselves, a loss of control of
their lives, and feeling angry toward the care recipient. Among those
studied, the care recipients were quite impaired with 92 percent
exhibiting one or more problem behaviors such as wandering or agitation
and close to half were incontinent (John et.al., 2001).

Despite these feelings caregivers expressed about their care
responsibilities, less than 10 percent of caregivers indicated they
frequently wished they could relinquish caregiving responsibilities.
This illustrates the pervasive sense of cultural obligation regarding
elder caregiving in the American Indian community. Still, caregivers did
actively seek assistance from others and admitted some degree of
resentment when help was not forthcoming. This indicates that caregiving
is tolerated, but not passively accepted.

A better understanding of the personal and contextual factors
influencing perceptions of burden among Indian caregivers will help
service providers to better tailor and target services. Not only is this
likely to reduce costs by eliminating the provision of unnecessary and
unwanted services, but will also bolster and support the family role in
caregiving.

# Funding Long Term Care

Long term funding care in Indian Country reflects the fragmentation,
lack of coordination and gaps found in long term care generally in this
country. The problems are magnified, however, by the rural location of
many tribal groups and their lack of access to major sources of home and
community-based services funding.

In 1995-1996, the Administration on Aging, the Native Elder Health Care
Resource Center at the University of Colorado and the National Resource
Center on Native American Aging at the University of North Dakota
surveyed key tribal program administrators of 108 tribes concerning
funding and availability of home and community-based services in Indian
country and the barriers encountered in establishing such services.
Families were found to be the primary providers of home and
community-based long term care services. There remained, however, an
extensive need for services that was largely unmet. Although an array of
funding sources existed for home and community-based services, the
sources were fragmented and insufficient to meet the need (AoA, 2000).

In 2001, the National Indian Council on Aging (NICOA), through a grant
from the Retirement Research Foundation, conducted a similar survey of
the tribes with Title VI Programs. Of the 109 tribes responding, the
results were essentially the same as found in the earlier survey. Even
among those tribes who were tapping a number of funding sources for
health and long term care services, needs were not being met and
fragmentation remained.

It is beyond the scope of this paper to provide detail about all the
funding sources available for long term care, but tribes need to
understand the role of Medicaid, Medicare, Indian Health Service,
Veterans Administration, the Older Americans Act programs, and private
insurers in long term care. Other less recognized contributors to long
term care include the Department of Housing and Urban Development (HUD)
and the U.S. Department of Agriculture. Although these agencies do not
directly fund long term care services, they often provide resources to
develop and maintain the infrastructure necessary to support long term
care.

## 

## Community Capacity and Service Infrastructure

Effective and successful long term care services systems are exceedingly
difficult to build and maintain. Funding alone does not guarantee
success and a wide range of factors must be considered in the
development of service systems

#### *Considering Options for Care*

It is vital that tribes have a thorough knowledge and understanding of
the long term care options available within their own communities,
surrounding communities and the state. It is also important for tribal
leaders to understand the unique needs and preferences of their people
and think creatively about how those needs may best be addressed. It is
easy to assume that the most common models or the new "model of the
week" is what is needed. For example, in a recent survey conducted by
NICOA, a very high percent of tribes indicated their greatest long term
care need was nursing home care or assisted living. While this may be an
important option for care that is lacking on reservations, it is also
the option that appears to be the least acceptable to elders and their
families. Studies of American Indian elders and their family caregivers
have consistently shown that elders do not want to be cared for in
nursing homes and families use nursing homes only as a last resort. Low
occupancy rates in some reservation-based nursing facilities support the
contention that this is not a particularly acceptable solution, even
when available on the reservation.

Assisted living may be a more acceptable option, providing the elder a
more home-like environment while providing the needed services to
relieve family caregivers. Still, the upfront development costs and
maintenance costs of nursing facilities and assisted living are high and
the feasibility and acceptability of these options need to be carefully
studied before tribes should invest resources in these directions.

The tendency to focus on residential and institutional care options is
not surprising, since these options consume a significant amount of long
term care dollars and attention in this country. Over the last decade,
however, there has been an attempt nationally to move away from the
intense focus on institutional care to improvements in home and
community-based care that may allow more frail elders to live at home.
Reservation communities, with the exception of some of the very large
reservations, provide the well-defined and circumscribed type of
community where home and community-based services can be provided
efficiently and economically. Still, a relatively small amount of
available dollars for community-based care goes to reservations and when
services are available, there are frequently lengthy waiting lists.

The funding for home and community-based services is generally tied to
funding streams controlled at the federal and/or state level. The needs
of tribal communities are rarely considered in the allocation of these
resources and tribes may have little or no say in the services available
to their people. This may be due to a lack of awareness in tribal
communities of the options available to support long term care,
indifference on the part of some funding agencies toward supporting
services on reservations, ignorance within agencies regarding tribal
needs and rights to certain funding streams, or some combination of
these factors.

#### *Infrastructure Assessment*

A complete inventory of the funding streams for home and community-based
care in the community and state is an important prerequisite to planning
at the tribal level. Tribal leaders must have a thorough knowledge of
eligibility criteria for services through specific programs and the
particular policies or practices that may affect access of American
Indians to the services. In some cases, it may be possible for tribes to
negotiate with federal government or states for a portion of monies that
can be tribally controlled. In other instances, tribes may at least be
given a voice in the design and allocation of services

Before embarking on the development of tribal-based services, tribes
must determine their capacity and limitations in providing various forms
of care. Capacity includes such factors as financial feasibility,
workforce availability and the commitment of tribal leadership. These
are all critical to the development and sustainability of services.

The planning process used by the American Indian Disabilities Technical
Advisory Council (AIDTAC) at the Research and Training Center on Rural
Rehabilitation Services, University of Montana, is one model to assist
tribes to clarify their needs and capacities to provide long term care.
AIDTAC works with those tribes that have demonstrated a commitment to
change and development. They have designed a two-day planning process
with tribes that entails a train-the-trainer format.

The National Indian Council on Aging (NICOA) is completing a study of
long term care on reservations. The next step in this program is the
development of informational materials to assist tribes in understanding
the myriad of funding opportunities that can facilitate long term care
development on reservations. NICOA is also developing a self-assessment
tool for use by tribes in assessing their resources and capacity for
developing and delivering long term care services.

There is a significant need for information about the processes for
developing and managing long term care models that work well in Indian
Country. Even basic information necessary to plan services is often not
available to tribes. For example, information about the real costs of
providing the services is key to decisions regarding the financial
feasibility of a particular service. This information is usually not
readily shared by outside community providers. Models from Indian
Country may provide the structural, process and fiscal information
necessary to bolster the planning process for tribes.

While it is helpful to know about the models that are working well, it
is also instructive to know about programs that have not worked and why
they failed. Information regarding failures in initiating and sustaining
services may help other tribes avert similar fates in their service
programs.

#######  

####### Transportation

The direct provision of long term care must be considered within the
broader context of the community and the services necessary to support
long term care. Transportation is a vital component to ensure
availability of long term care services. Availability means that people
can get to the service or the service can be brought to them. In rural
areas, the necessity of traveling long distances to receive or deliver
services makes service delivery expensive and often impractical. Over 60
percent of the American Indian/Alaska Native population lives in tribal
areas that are over 50 miles from a city of 50,000 or more population
(Kingsley et.al., 1995). Major providers of care tend to be aggregated
in the larger and more densely populated urban communities and are often
unwilling or unable to bear the cost of delivering services to rural
areas.

The likelihood of rural Indian elders getting into the urban area for
services is even more remote than the delivery of services to them.
Transportation is generally inadequate in tribal communities. In a 1995
Indian Tribal Transit Study, only 13 percent of respondents indicated
that their current transit systems met the needs of their respective
communities (National Congress of American Indians, 1996).

Availability of vehicles and distance are not the only issues impacting
service delivery in rural areas. Inclement weather, unpaved roads and
rugged terrain can also pose major barriers to the delivery of services.
On many reservations, these factors combine with geographic distance to
increase windshield time for providers and escalate the cost of service
delivery.

####### Housing and Amenities

Long term care is generally provided in the home or in a housing
facility designated for persons needing long term care. On reservations
where care in the home is preferred, it is important that housing be
accessible, safe and provide an environment that facilitates caregiving.
Regrettably, housing conditions on many reservations are inadequate and
crowded. It is estimated that a fifth (20%) of American Indian/Alaska
Native homes do not have safe drinking water or indoor toilets (AOA,
1996). The lack of such basic amenities can pose considerable hardships
on elders and their caregivers.

Supportive housing options for persons needing long term care are rare
on reservations. Although such options are likely to be found in the
outside community, they rarely provide care that is sensitive to the
cultural preferences and values of Indian elders. As noted previously,
interest in the development of supportive housing on reservations is
often directed toward the nursing home model. This is the most
restrictive institutional form of long term care and the most difficult
to sustain. Before embarking on the development of a nursing home,
tribes need to carefully assess the need on the reservation for this
level of care and the capacity of the tribe to support such a model
financially and with an adequate and appropriate workforce.

#### *Workforce Issues*

The recruitment and retention of professional and ancillary workers in
long term care is a growing problem nationwide and particularly critical
in rural areas. On reservations, workforce issues are compounded by the
loss of young to urban areas, low educational levels, and a host of
social and behavioral health issues that plague many of the young
remaining on the reservations.

The availability of a trained, competent, and committed workforce is
vital to the development and survival of long term care services in
Indian Country. The development of a workforce to sustain a full
spectrum of services may take months or years. It entails the
recruitment, training, and retention of a workforce comprised of
ancillary and professional providers.

####### Recruitment and Training

A number of programs have been implemented with the intent of increasing
the recruitment of personnel in the health and long term care fields. It
has been shown that early introduction to health career options is
important to future recruitment efforts. Programs such as "Kids into
Health Careers" are aimed at introducing youth to careers in the health
and long term care fields. Programs are also available to tutor ethnic
minority and disadvantaged youth in math and sciences to better prepare
them to enter health professional programs.

Tribes have the authority to structure and administer their own cash
assistance and employment and training programs under the Personal
Responsibility and Work Opportunity Reconciliation Act of 1996. Known as
the Tribal Assistance to Needy Families (TANF) program, this program has
been used by tribes for education and job training. To date, most of the
monies have gone to support basic education, GED preparation, two and
four-year postsecondary degree programs and certificate programs for
people who are unable to secure unsubsidized jobs (Brown, 2001). This
program offers tribes the ability to provide or pay for training to
build a health and long term care workforce.

Other avenues for recruitment were suggested by attendees at the
Roundtable on Long term Care held in Albuquerque in April, 2002. One
approach is the recruitment of individuals who have been family
caregivers and who have the experience, a realistic perspective of the
demands of long term care, and the commitment to providing quality care.
Suggestions also included educational talent searches within tribal
colleges. It was acknowledged that early identification and mentoring of
American Indian students for the health professions is a needed avenue
to growing a professional workforce necessary to provide care on
reservations and in urban Indian centers.

An expanding number of educational programs provided via the Internet
offer new and more accessible opportunities for training without leaving
the reservation. This can save tribes considerable money for
transportation and lodging of individuals while they are in training and
increase the likelihood they will remain on the reservation to work.
While the telecommunications infrastructure is still not in place for
all tribes to utilize this resource, it is an option for some.

Casinos have proven an economic resource on many reservations and can
fuel many educational and service programs. They are, however, a
double-edged sword for the long term care industry. Casinos generally
offer better pay and better working conditions than available in the
health and long term care fields, thereby drawing off potential workers.

####### Issues in Retention

The field of long term care poses few attractions for workers, even
those already in the health and supportive services workforce. The pay
is low, benefits are inadequate or nonexistent, working conditions are
often difficult, and the work is physically and emotionally exhausting.

In a qualitative study of personal care attendants in Alaska, Johnson
and Branch (2001) found a number of factors influenced their attitudes
about their jobs and their likelihood of remaining in the job. The major
problems personal care attendants faced included low pay, lack of
benefits in some agencies, large amounts of paperwork, onerous tasks,
unstable work schedules, and lack of respect from health professionals.
Those who succeeded and enjoyed their jobs found pleasure and
gratification in helping others. As one PCA stated, "PCAs must be
'people-people' (Johnson and Branch, 2001, pg 8)." These are attributes
that are difficult to teach, but critical in most helping professions.

This study also provides some very interesting insights into the
job-associated factors important to PCAs. Training was viewed as
important in making their work easier and helping them to deal with
difficult situations. All of them felt that developing training programs
that created "career ladders," allowing workers to advance to positions
of increasing responsibility and pay in the healthcare field were
important in recruitment. There were varying opinions on recruitment
bonuses, annual bonuses, and incentive pay for timely paperwork, but in
general these were thought to be positive incentives for workers.

Both recruitment and retention of workers needs a multifaceted approach.
Wages and benefits for paraprofessional and professional worker are
currently inadequate to entice or maintain the best workforce. Tribes
need to forge alliances with organizations representing long term care
providers and elder advocacy groups to encourage states to consider
"wage pass-throughs" in which states designate some portion of a public
program long term care reimbursement to increase wages and benefits. Use
of tribal resources to bolster wages and benefits should also be
considered.

#### Summary

The development of appropriate, effective and sustainable models of long
term care is difficult in any community. Knowledge and thoughtful
planning are key elements to success, but are easily overlooked or
short-circuited in the rush to implement services. This paper highlights
key elements in long term care planning and implementation drawn from
the literature, research and information provided by participants in the
IHS Roundtable on Long term Care in Albuquerque in April, 2002.

Timely and quantifiable information is an important component in the
design, development, implementation, and evaluation of long term care
services. Data regarding the needs and preferences of the tribal
population serves as a foundation for the development of effective and
acceptable long term care services. Although tribes vary widely in their
expertise relating to designing and collecting data, strategies and
tools designed for American Indian communities are available or can be
adapted for use. When needed, tribes should seek technical assistance to
ensure that their planning efforts are grounded in accurate information.

More importantly, data must be analyzed and used effectively to instruct
the planning process, support funding proposals, and demonstrate
outcomes of care. It is at this step that the use of data for planning
often falls apart and disillusionment with the process of collecting
data is engendered. The more proficient tribes become in the use of data
from a variety of sources, the more likely they are to compete
successfully for funding and subsequently to provide tribal members
services that effectively and acceptably meet their needs.

The information needed to develop effective care systems goes beyond
knowing the needs of the tribe to having an accurate and realistic
assessment of tribal resources and capacities, as well as knowledge of
external resources that may be tapped for startup costs, ongoing
support, and expansion of services. Long term care service dollars are
spread over a complex and fragmented maze of federal, state, and private
agencies that may have little knowledge, understanding, or empathy with
tribal customs or the realities of service delivery on reservations.
Competition for these resources is intense due to limitations in
coverage for long term care services. Further complicating access to
external resources is the fact that many tribes face a steep learning
curve regarding available resources, complex eligibility criteria, and
onerous regulatory requirements. Concerted efforts must be made to
provide education and technical assistance to tribal organizations
interested in developing or contracting for long term care services.

Tribal resources are important for maximum flexibility, but there exists
considerable disparity among tribes in regard to available tribal
resources and the expertise necessary to develop, sustain and expand
resources. Some tribes may require considerable capacity building before
embarking on the development of locally controlled services. The needs
of other tribes may best be served by collaborating with existing
community providers in developing culturally sensitive and appropriate
services, as well as training and hiring tribal members to assist in the
provision of services.

Some tribes are developing good track records in meshing external
services and/or funding streams with tribal resources to implement
culturally sensitive service systems. Information on these models and
the processes undertaken to accomplish them needs to be broadly
disseminated for use by other tribes. Information on models that are
working well in Indian Country is currently very sparse.

Finding monetary resources to support long term care services is not
easy, but may prove easier than addressing the infrastructure issues
that impede service delivery. Vast distances, lack of transportation,
inadequate housing and few, if any, supportive housing options pose
significant barriers to long term care service delivery. Addressing the
long term care needs within tribes will require a comprehensive plan for
infrastructure development. This requires a working knowledge of
federal, state and private agencies that support community development,
housing and transportation programs. Many of these programs have little
direct relationship to long term care services, but are critical to an
effective long term care services system.

The shortage of professional and paraprofessional long term care workers
is currently one of the most serious barriers to service and one that is
likely to become more severe as the population ages. Addressing
workforce issue requires both short-term initiatives and long term
development tasks. Short-term initiatives may include providing higher
wages, increased worker benefits, improved working conditions, and
creative recruitment strategies within new worker pools.

Meeting the need for more professional workers, particularly more
American Indian/Alaska Native workers, will require a much longer-term
approach. Strategies need to include encouraging students to consider
health care careers early and get the academic preparation necessary for
acceptance into health professional programs. Other important
initiatives include availability of scholarships and other forms of
financial assistance to cover tuition and educational expenses,
provision of academic support to increase the likelihood of academic
success of students from educationally disadvantaged backgrounds in
health professional programs, and provision of career ladders for
paraprofessionals wanting to advance into the health professions.

American Indian/Alaskan Native communities will face increasing need for
long term care services over the next several decades. Families will
continue to be a vital part of a long term care service system, but they
are a resource that must not be overburdened as care demands increase.
Tribal communities must look internally and externally for resources
that will facilitate the development of a comprehensive long term care
system to meet the diverse needs of the elderly, the disabled and their
families. Some tribes may have the resources to assume full control over
the development and management of services. Most tribes will need to
combine tribal resources with external funding and forge strategic
alliances with some providers external to the tribal community to
develop and sustain a comprehensive system of care. Now is the time for
tribes to be systematically planning for the future long term care needs
of their populations and taking educated risks to experiment with models
of care that are culturally sensitive, yet viable within the constraints
of the current environment

######  

###### REFERENCES

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in American Indian and Alaska Native Communities.* Report produced by
the AoA, Native Elder Health Care Resource Center, University of
Colorado, and the National Resource Center on Native American Aging,
University of North Dakota.

Baron, A., Manson, S., Ackerson, L., and Brenneman, D. (1990).
Depressive considerations. In C.C. Attkisson and J.M. Zich (Eds).
*Depression in Primary Care: Screening and Detection.* New York:
Routledge.

Bureau of the Census (1990). *1990 Census of the Population, General
Population Characteristics.* Pub. No. 1990 CP-1-1, 1990.

Curyto, K., Chapleske,E., Lichtenberg, P. Hodges, E., Kaczynski, T., and
Sobeck, J (1997). *Prevalence and Prediction of Depression in American
Indian Elderly.* Paper presented at he 50^th^ annual meeting of the
Gerontological Society of America, Chicago.

General Accounting Office (1995). *Long term Care: Current Issues and
Future Directions*, GAO/HHS-95-109, April, 1995.

Hendrix, L. (2001). *Health and Health Care of American Indian and
Alaska Native Elders.* A Curriculum Guide funded by the Bureau of Health
Professions, HRSA.

> http://www.stanford.edu/group/ethnoger/index.html

Hennessy, C., John, R., and Roy, L. (1998). *Long Term Care Service
Needs of American Indian Elders in the IHS Santa Fe Service Unit*.
Report funded by Centers for Disease Control and the Indian Health
Service.

John, R. (1999). Aging among American Indians: Income security, health
and social support networks. In T. P. Miles (Ed.), *Full Color Aging:
Facts, Goals, And Recommendations For America's Diverse Elders* (pp.
65-91). Washington, DC: Gerontological Society of America.

Johnson, A. and Branch, K. (2001). *Long term Care Workforce Recruitment
and Retention in Rural Alaska: a Report on Personal Care Attendant Focus
Groups*. Project supported by a grant from the Alaska Mental Health
Trust Authority.

Kingsley, G. T., Spencer, V. and Simonson, J. (1995). *Assessment of
American Indian Housing Needs and Programs: Final Report*. Urban
Institute, August, 1995.

Ludtke, R. and McDonald, L. (2002). *Functional Limitations of Native
American and Alaskan Native Elders*, Presentation at the Indian Health
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Manson, S. (1989). Provider assumptions about long term care in American
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Manson, S. (1989). Long term care in American Indian communities: Issues
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Transit Report,* March, 1996.

National Indian Council on Aging (1993). *Indian Aging Agenda*
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National Resource Center on Native American Aging (NRCNAA) (1998).
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National Resource Center on Native American Aging (NRCNAA) (2001).
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### Roundtable Discussion of Implications and Recommendations Regarding Planning for LTC Services

1.  **Indian Models by Design:** Planning tends to follow dollars rather
    than be rooted in tribal culture, values and community based input.
    In the past, nursing homes represented the extent of our
    understanding of LTC. Today, Assisted Living Facilities and
    Home/Community Based Services are the preferred approaches. What are
    the best models for Indian communities? Grassroots planning is
    needed to determine appropriate service models for Long Term Care.
    Native culture and values must play a key role in defining the types
    of LTC services most appropriate for a community and way in which
    services are delivered.

2.  **Involve the Stakeholders:** Identify those who should be involved
    in the planning process. There needs to be involvement of Tribal
    government, service providers, Indian elders, Indians with
    disabilities and their families or advocates, and the informal
    "shakers and movers" in the community.

3.  **Evaluation:** There has to be an evaluation of the current
    capacity for long term care. This includes an inventory of available
    services with eligibility criteria and identification of the
    provider agency. Models should be designed with flexibility to
    adjust to changing needs and demand.

4.  **Collaboration:** Attention in the planning process to improved
    collaboration between existing service networks and providers will
    produce more options and expand the array of services potentially
    available in Indian communities.

5.  **Data and Demographics:** Demographic data is important to
    understanding the level and types of LTC services needed in a
    community. Planning for future services includes prioritization to
    determine which services should be developed first and which can be
    developed later.

6.  **Technical Assistance:** Tribes and local Indian communities must
    be provided quality technical assistance that is adaptable to local
    culture and demographics. The planning process used by American
    Indian Disabilities Technical Advisory Council (AIDTAC) at the
    University of Montana represents an excellent and culturally
    appropriate approach to providing technical assistance for tribes
    for long term care planning.

7.  **Workforce Development:** Involvement of the tribal colleges and
    universities is important in recruiting and training local
    caregivers. Retention of home caregivers remains a difficult issue
    in some areas. Formal caregivers are low paid and the jobs often
    have low status and high turn-over. Some suggested solutions are:

-   Recruit family/caregivers to formal caregiving. These are
    individuals who are already caregivers and therefore have shown that
    they have what it takes to do this.

-   Validate caregivers with experience by giving them a mentoring role
    for others; Tribal recognition of their contributions; treating
    experienced caregivers as experts and asking for their input; make
    sure that caregivers are part of the team in the care of the elder
    and that they have ready access to the professionals involved in the
    care team; support groups for caregivers.

8.  **Policy Issues:** Federal agencies can make a greater contribution
    to assist tribes and local Indian communities address LTC issues.
    Various Federal and State agencies supporting LTC services must
    understand that smaller Indian communities may require more
    flexibility in meeting requirements for licensure and certification.
    More clarity is needed for tribes and Indian elders to better
    understand Medicaid and Medicare restrictions and issues such as
    estate recovery. State and tribal collaboration to secure Medicaid
    waivers, which support LTC services in Indian communities, should be
    encouraged and supported.

9.  **Funding Implications:** Funding for LTC services in Indian
    communities is currently severely inadequate to begin to develop the
    range of services required. A greater investment in LTC services is
    necessary at all levels, including Federal, State and local/tribal.
    Some of the potential ways in which more resources could be targeted
    at LTC included the following:

-   Target IHS Research and Education grants to long term care issues.

-   Target Administration for Native Americans (ANA) social and economic
    development grants to long term care issues.

-   Educate policy-makers about needed increased funding for the IHS to
    cover long term care services as well as basic services.

-   Establish third party billing training programs for tribes and local
    providers for long term care services.

    ![](media/image7.png){width="1.272047244094488in" height="3.0in"}

## HOW DO WE UNDERSTAND AND INCORPORATE

**ELDERS' TEACHING AND TRIBAL VALUES**

**IN PLANNING A LONG TERM CARE SYSTEM?**

**J. Neil Henderson, Ph.D.**

# Introduction

The fact that Indian Country is experiencing increased life span
provokes the need to give the utmost consideration to the many-faceted
issues of long term care. One of these matters is the crucial importance
of carefully crafting types of long term care that respect and preserve
elders' roles as treasured holders of tribal culture. This is not a
perfunctory, small matter. This is similar to the way that some tribes
have special people to guard, preserve, and keep vital sacred ceremonial
objects. However, in this case, it is *all* elders who naturally carry,
guard, and nourish tribal culture in their minds, spirits, and voices.
The problem is the elders' role as tribal culture keeper can be defeated
by long term care in two ways: 1) the lack of sufficient, quality long
term care, and 2) the use of typical, institutional models of long term
care that isolate the elder from family and community.

The lack of sufficient, quality long term care can defeat elders'
efforts to keep tribal culture alive by allowing elders to sink into
physical, mental, and spiritual declines in excess of that which may be
expected from chronic ailments alone. Unless elders' health and function
are well cared for, their ability to be vital participants in home and
community life is lost. When their participation is lost, the tribal
culture which they hold is lost to the community. Although some good
examples of tribal long term care exist, sporadic availability of
appropriate long term care can kill tribal culture by preventing the
maximization of elders' socialization with the community and across
generations.

The use of typical institutional models of long term care can defeat
elders' efforts to keep tribal culture alive by over-reliance on
bio-medically derived concepts of LTC. These biomedical concepts serve
as a hidden meta-model driving thinking and action. This is why nursing
homes, for example, usually look more like hospitals than homes. It is
also why psychosocial care suffers while physical care is obsessively
given the vast majority of attention. Also, the implicit reliance on
today's majority culture way of life has influenced not only nursing
home design, but home-based care as well. For example, some issues which
are very commonly used across this country include a near devotion to
age segmentation as evidenced by the commonness of separating those with
the most years into special categories, locations, and economic
jeopardy. The loss is the continuous connection with all generations
that could naturally occur were it not for the separation of older
adults from their extended family.

# Initial Conditions for Problem Solving

"Initial conditions" refers to the foundations of thought used to tackle
a problem. It is like the starting point for thinking, or the set of
unquestioned assumptions that are used as the first stepping stones
leading to problem resolution. These initial conditions *must* be right
or all else that follows is flawed. The topic of concern here, "keeping
culture in long term care," requires that a specific and correct
understanding of "culture" and "long term care" be given. In an effort
to best align the problem solving process with correct initial
conditions, both "culture" and "long term care" will be examined since
both have extreme variance in how they are conceptualized.

# Dynamic Culture

It may be surprising that "culture" is the more difficult concept to
define and apply. This is due to the very fluid nature of culture along
with the fact that it is constantly changing. Common thoughts about
culture include the notion that culture is the collection of values,
beliefs, and perceptions learned as a member of a social community.
While this is basically true, the error is the lack of attention to the
dynamic nature of culture. Culture is always moving, changing, and
shifting. Too often, culture is wrongly made trivial by simply
identifying some traits about a group that seem different from another
group. This approach of "trait listing" to understand culture is
guaranteed to lead to failed applications in real communities because
people are much more complex than a simple list of traits.

*Culture and Personality*

Moreover, trait listing does not account for the fact that culture is
expressed through individuals who each possess certain personalities
that "filter" culture as they use it. This can produce observations that
some individuals in a community do not behave in accordance with some
traits in the list that is supposed to apply to them. The reason is that
personality can also "filter" the expression of culture, causing an
apparent disconnection with the overall cultural system. But, this is
not a problem because all communities have the flexibility to
incorporate large amounts of behavioral differences. In fact, such
differences are sometimes the sources for new developments in culture
that help people adjust to new conditions.

*Invisible Culture*

Culture is also challenging because it is essentially invisible itself.
It is an operating system that is only sometimes made visible by human
action. The ways that people produce things from houses, to cars, to
clothes all represent culturally based notions of how things should be.
Yet, some parts of culture are entirely and always invisible, although
very much acting on peoples' thoughts and behaviors.

*Culture as a Writhing Knot*

A useful definition of culture is that it is a writhing knot of
constantly mutating values, beliefs, and perceptions expressed
individually by people with different personalities. Consequently,
efforts to account for culture in human services are very difficult.
However, a correct understanding of culture and its dynamic nature will
allow problem solving to be ever closer to an accurate target. The
result is a greater opportunity to keep *real* culture alive in all the
issues that need attention.

# Long Term Care

The subject of the phrase "long term care" is "*care*." "Long term" is a
modifier that simply states that the care to be given occurs over a
significant period of time. First, "care" is a common fundamental of
communities. Communities can't exist unless care is given to nurture
children so that they can survive into adults. The problem is that for
"older adults," care is not always so vigorously or freely given. How
can this be when cultural values have usually been very favorable toward
elders? There is no simple answer to this vexing question. Yet, it can
be shown that the current national culture, as a political and economic
business machine, has developed in a way that causes late life to be a
time of greatest risk for financial loss just when the greatest lifetime
risk for health and functional limitations to occurs. The combined
burden can be huge.

*Care and the Social Need of People*

Care is best viewed as ways to provide for the spiritual, emotional, and
physical well-being of a person. Since people are inherently social, a
situation in which a person can experience life with some degree of
contact and connection with others fosters a heightened sense of
well-being. Isolation is fear-inducing and punishing to human life.

*Care and Attitude*

Care, as an issue, does not carry with it definitions or directions of
what, when, where, or even how to provide care or to be caring. Each of
these aspects of care must be discussed. The "what" aspect of care
suggests that care can be manifested in many ways. For example, care can
be shown by voice tone as well as the delivery of medicines. Also, care
can occur simply by one's presence. It may be that the most important
aspect of care that will be conveyed to the care-receiver is that of
"attitude" on the part of the caregiver. A *sincere* attitude of respect
is needed for the optimal connection to be made to an elder.

Of course, care can be the doing of tasks that are needed for promoting
health and well-being. These include the tasks of bed and body care as
well as psychosocially beneficially tasks like visiting, activities,
walking with someone, reading, etc.

*When to Care*

When care should be given is also an undefined matter. For some elders,
care provision is not a full-time necessity. For others it is mandatory.
It is possible that some elders would thrive on intermittent care or a
type of care balanced by careful preservation of their sense of
independence. This means that there is a potential negative to
"over-caring" which can lead to learned helplessness. Care should be
given at an appropriate time in accordance with the needs and
preferences of the care receiver.

*Where*

Where to provide care is both easy and difficult. In one sense, care can
be given regardless of location. On the other hand, a type of care
needed may require specialized locations, staff, or technology. However,
much of the type of care needed for older adults, in the context of
medical stability, is psychosocial and, consequently, not so dependent
on technical equipment. Still, psychosocial care can require very
specialized knowledge by a caregiver, such as a spiritual leader, social
worker, psychologist, etc. No matter what the problem, however, a
friendly visitor remains powerful medicine.

Locations for care are many. As is common from the "continuum of care"
perspective, care of many types can be delivered at home, day care, meal
sites, senior centers, and, of course, outpatient centers, assisted care
facilities, and nursing homes. People prefer to stay at home so much of
care is delivered to the elder person there. Also, special spiritual
nurturing can be done on home land or tribally special land and
constitutes an important place of care. In addition, many types of
spiritual nurturing can be brought to more institutional settings.

*How to Care*

How to provide care is an extremely challenging matter. While it may
seem strange, care can be given without being in the presence of the
care receiver. For example, many types of care are brief ways of
"touching base" with a person at home alone, such as phone calls,
letters, cards, and gifts. These ways cannot account for all care, of
course, but should not be ruled out as important ways to keep people
feeling connected, particularly in widely spaced living areas. More
commonly, caregiving is a type of personal interaction that can variably
be given by lay persons, paraprofessionals, and trained health care
professionals. Each of these types of caregivers can have important
roles in assisting the elder to maintain optimal function and
well-being.

# Keeping Culture In Long Term Care: Rituals Of Respect

Creating a system of long term care that keeps culture in it can be
done, *but only with real intent and unflagging commitment*.
Transforming the intangible values of culture into action is where the
commitment and work occurs. The cultural transformation is done by
crafting rituals which symbolize the values that are intended to be
incorporated into daily operations. *Rituals are simply behaviors that
are symbolic of certain cultural values, designed for a specific
purpose, are standardized throughout the culture, and consistently
repeated.*

There are specific types of rituals. A menu of rituals for keeping
tribal culture in long term care includes rites of 1) passage, 2)
renewal, 3) intensification, and 4) revitalization. These are the basic
tools by which directed, controlled culture change will occur. Rites of
passage relate to marking the change from one status to another (e.g.,
birthdays, retirement, entry into long term care). Rites of renewal are
to remind people of a certain status that one or a group of people have
(e.g., elder, parent, caregiver). Rites of intensification are to
reinforce the status that a certain person or group has (e.g., elder,
holders of culture, communicators of tribal culture). Rites of
revitalization are to re-capture a former status or even set of roles
(e.g., the value of elders, intergenerational communications, tribal
cultural values).

#### Brief Examples of Rituals of Respect in Long Term Care

*Rite of Passage*

As an elder becomes a user of long term care services, whether at home
or in a facility, develop an appropriate *celebration of inclusion* into
the new set of services that emphasizes CARING. This can be a gift of
food, or smudging, a prayer song, or an actual few steps through a
portal or archway that is specially built for such a brief ceremony.
These rituals should be accompanied by people and maybe even animals
that are important to the person. Note that the specifics of such a rite
of passage are HIGHLY variable and are expected to vary greatly from
tribe to tribe and person to person.

> **EXAMPLE:** In an elder's home\-\--The elder who is new to the
> service system is at home in his or her familiar and comfortable
> surroundings. By preplanning and permission of the elder, long term
> care workers come to the house with an appropriate person (who may
> also be an elder) who is considered worthy of offering a blessing to
> the service recipient. This person may be a spiritual leader
> independent of the long term care service group, or may happen to be a
> staff member of the service group. These people will greet the elder
> and explain that they are there to get to know the elder and the
> family as well as for the elder to get to know the people of the
> service agency. It may be that some of these occasions will be marked
> by people who have known each other for years. But, this doesn't cause
> a problem. The service people and the spiritual leader will welcome
> and honor the elder as a person they will provide special care for.
> The spiritual leader may offer a prayer, smudge the elder by using a
> feather fan or eagle feather to move the smoke of sage and/or cedar
> over the elder, or sing a prayer song. After this blessing, an
> appropriate gift can be given to the elder. Gifts may be of a kind
> that are important to the tribal culture, such as tribally valued
> foods, art, or books that are considered appropriate. This Ritual of
> Respect should convey a definite sense of caring and honor for the
> elder. It should convey a future in which the elder thrives in the
> emotional and spiritual sense in the midst of caring others.

Please keep in mind that the specifics of this example will change
according to the tribal cultures involved.

*Rite of Renewal*

At regular intervals of long term care service, a rite of renewal can be
developed which reminds the person that they are specially cared for in
ways that keep them connected to the tribe. This may be an elder or
elders who have been using services for a season or two. The interval
can be by all seasons or selected ones. The specifics could include a
party atmosphere with more serious elements as well, such as smudging,
songs, or gifting. Someone may want to say a few words that emphasize
that the elder is special to their community, family, and the caregiving
staff (again, whether at home or in a facility).

> **EXAMPLE:** Like birthdays, it feels affirming to be regularly
> reminded that one matters to others and that a person's "specialness"
> has not "worn off." Service providers, an important person in the
> tribal community, and family may be involved in the renewal and
> reminder of caring and importance extended to the elder. These people
> can meet with the elder at their own home or even at a facility for
> ways to show the elder respect, honor, and that they are cared for.
> The elder may be placed in a special seat or location. The others can
> gather around them. Each person may say aloud a variety of things that
> reflects the elder's value to them and the community. Sometimes these
> things are very humorous and other times, they may be quite solemn in
> tone. The group may sing a tribal song or a prayer song. They may show
> pictures that involve the elder taken over the last season or year.
> Then, to mark the end of this Ritual of Respect, someone may make
> reference to looking forward to the next season or year of helping to
> provide care for the elder. Making note of the elder's value to the
> community is fully appropriate.

*Rite of Intensification*

At regular intervals, a ritual of intensification can be developed to
bring attention to fact of elders' unique and valuable role as holders
of tribal culture. This may be for one or a group of elders. The
specifics may include the elder(s) telling stories, singing, or dancing.
Also, old pictures of the elders can be enlarged as used as a device for
the elder to tell of the old ways, since parts of the picture my
stimulate memories of how life was (clothing, technology, housing,
etc.). Perhaps this could be done in the presence of youth of the tribe
and/or family. Again, the specifics will vary in accordance with tribal
culture.

> **EXAMPLE:** Service providers can preplan a picture or slide show
> that contains examples of the older life ways of the tribe. The more
> specific to the early days of the elder, the better. It may be that
> most of the other participants will not be of the same generation. The
> elder becomes the unique and special holder of the actual lived
> experience that relates to the pictures. In this way, the elder's life
> is seen as unique, a living lens into the past that may be otherwise
> lost. In this ritual, the elder is the single teacher in the group.
> All others are the elder's students. This Ritual of Respect can end
> with prayer, songs, or gifts, and the promise of another time of this
> special honor.

*Rites of Revitalization*

At regular intervals, that may be seasonal or related to tribal
histories, a rite of revitalization may be developed for elders to be
re-established as cultural leaders and guardians of tribal culture. This
may include an elder or elders who may be asked to speak in the way of
authority for the tribe, open-ended, without time limits. The elders
should be honored in culturally appropriate ways, such as gifting,
smudging, or showing how their advice and guidance has been helpful to
the tribe.

> **EXAMPLE:** The timing of this Ritual of Respect may be attached to
> important tribal culture events that come from history or tribal
> religion. Perhaps it is also seasonal. By preplanning, service
> providers can assist the elder, if necessary, in organizing their
> preparation for offering some words of wisdom that they have learned
> over their life or to reinforce some of the tribal values that have
> always existed. The listeners must be the long term care service
> providers, and may also include others, such as family and friends. It
> may be that the elder can be helped to get their tribal regalia in
> place, if that is appropriate, for conducting this Ritual of Respect.
> The telling of a story or giving admonitions (without time limits) may
> be promoted by prior help in recollecting such matters, but only if
> this is necessary due to some impairment. Otherwise, the elder will
> speak on their own. This Ritual of Respect should further cement the
> importance of the elder to the community.

# Keeping Culture In Long Term Care: Tribal Values

The discussion of culture, care, and ritual establishes the initial
conditions for solving the problem of how to keep culture vital while
delivering long term care in multiple settings, governed by external
policies. The task now is to apply a reality-based concept of culture
into a reality-based notion of long term care for elders. The task here
is to identify ways to elicit tribal culture from elders about what
their life experience has taught them that tribal culture and care
should be like. In this way, the elders can have the primary voice in
the development of types of long term care that fit with their
expectations. Also, those non-elders who are involved in the policy and
fiscal aspects of long term care will be mandated to listen to the
elders and then act on their behalf to the ultimate degree possible.

*Culture: Seen, Thought, and Hidden*

There are some ways to think about culture that provide a framework for
developing a plan for how culture can be integrated with long term care.
First, culture can be very explicit and easily seen, like in pictures,
designs, and styles of structure. Second, culture can be more invisible
by being expressed in thinking and behavior, like in knowing about
spiritual matters or how family behavior should be in different
situations. Last, culture can be out of the user's awareness, yet still
powerfully operating. For example, all cultures have rules about how
close people stand to each other when talking. Some cultural rules are
further apart and others closer together. But, no one even thinks about
them, unless someone violates the hidden rule. Then, a distinct sense of
discomfort occurs so powerful as to make the person begin to move around
to find the spacing that makes the proper feeling of culturally correct
distance.

The "talking distance" case is a mundane example, but other aspects of
"hidden culture" are more important and can dictate how people think
when problem solving. For example, when people think of typical long
term care in a nursing home, the caregiving staff is thought of as those
that do nursing, activities, and those who work in the kitchen to
provide nutritious food, and maybe some others like those in social
services. However, research has shown that the housekeeping/janitor
staff can be some of the most important people to provide psychosocial
care. We don't even think of them being care providers because they
don't wear white, deal with charts, provide body care, and don't have
any specific training about giving direct care. Yet, actual behavior
shows that they may very well be some of the best providers of
psychosocial support. The lesson is that trying to conceive of what long
term care is like by using our usual problem solving tools may not give
the best results. What can be done to get beyond this thinking block?
How can tribes find what is traditional culture and long term care is,
or should be? There is no easy answer to this. However, there are means
usable to elicit the ways that people think about real culture. This may
include structured interviews, research-style focus group, open-ended
interviews, and specific elicitation interviews. Both quantitative and
qualitative analysis would follow to produce valid results. After
getting such information, *collaborative communications with elders* can
lead to better long term care design and operation.

*Techniques to Tap Elderhood Cultural Values*

There are a variety of ways to tap into the cultural values of our
elders. The following are provided as examples for consideration and to
perhaps trigger additional ideas based upon the unique cultures in your
own community.

-   Have current elders identify and talk about their memories of how
    elders used to be treated; Give examples of behaviors of elders;
    Native Language use to show elder respect; Stories that had themes
    which valued elders; Rituals/ceremonies that showed respect for
    elders

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-   Collect pictures from the old days and ask elders to look at them
    and talk about the old days, particularly the ways that elders were
    treated.

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-   Talk about the favorite foods of each tribe.

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-   Talk about the favorite ceremonies or most important ones.

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-   Talk about what fears are present about typical nursing home stays.

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-   Ask what an elder is?

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-   Make the senior center the actual "center" of the community.

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-   Just like a language course, have an "elder respect" course for all
    staff that provide care. Culture is learned both "automatically" and
    by specific teaching.

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-   Integrate the senior care with child care.

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-   Have senior day in all of the schools or an hour per week of elder
    day in which the respect for elders is talked about by elders and
    youth.

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-   Have a lunch day in which the kids provide a lunch for the elders.

    Examples of rituals for keeping culture in long term care could also
    include the following.

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-   Reminiscence Therapy in cultural context.

-   Pet Therapy in cultural context that include local animals common to
    the tribal area or important to tribe's in symbolic ways. In some
    situations, some clan animals may be important to be included, if
    appropriate, for the clans.

-   Native Talking Circles.

# Summary

In order to keep culture in long term care:

-   Have a serious intent to do so.

-   Use appropriate experts (e.g., anthropologists, sociologists,
    historians, etc.), PLUS tribally based experts, PLUS elders as those
    who will guide the process.

-   Consider that elders in the tribe may vary in chronological age from
    "young elders" to "older elders" and that the social status of
    "elder" may be different from those people who are elders due to a
    long life.

-   Anticipate that in keeping long term care in culture there may be
    confrontations with bureaucratic, policy, and legal barriers. Be
    "creative" to avoid defeat by such intrusions.

-   Elders may benefit from some organization among their ranks to help
    provide guidance about keeping culture in long term care.

-   Develop a program of Rituals of Respect for Elders as a means to
    ensure that culture and long term care go together.

**Roundtable Discussion of Implications and Recommendations**

**Regarding Culture and Traditional Values in LTC**

1.  **Must Be a Serious Intent:** We cannot make it to the priority
    list, unless it is taken seriously. Culture needs to be seen as just
    as important in our health systems as the protection of life and
    limb.

2.  **It Can Be Done Cheaply:** You don't need to build new structures
    with multi-million dollars. Modest investment to ensure cultural
    components can make a huge difference.

3.  **Best Practices:** Look for models and best practices of how
    culture has been kept within LTC settings.

4.  **Support of Policy-Makers:** Demand that there be a policy to
    support a program of including culture in the care. This should be a
    requirement of a planning process..

5.  **Culture as an Integral Component:** Cultural appropriateness, or
    rituals of respect should be recognized as an essential part the
    care and should be included as a component of the quality of care in
    any evaluation.

6.  **Anticipate Changing Traditions and Multi-Culture:** Culture is a
    dynamic process and each cohort of elders may see things
    differently. Elders are multi-cultural. There are multi-cultural
    experiences through geographical location, marriage, education,
    media, life experience. There is no "one size fits all" cultural
    component. This is not a problem, but is inherent to understanding
    the dynamic nature of culture.

7.  **Physical Access to Elements:** Ensure access to culturally
    important things to the elder, such as access to horses, foods,
    sacred places, practices.

8.  **Make Human Needs Priority Over the System Needs at all Times.**
    While realizing you cannot ignore regulations and law, human needs
    must always be considered first.

9.  **Planning for LTC Involves Community and Elders:** LTC which is
    planned and developed within tribal culture and communities will
    more likely meet the needs of elders. Elders must be involved from
    the start and continuously in "real and meaningful" ways.

10. **Government Encouragement of Cultural Models:** Tribal, federal,
    and state governments must include the considerations of culture in
    the development of LTC policies and programs.

    ![](media/image7.png){width="1.272047244094488in" height="3.0in"}

**HOW DO WE ADDRESS THE LONG TERM CARE**

**NEEDS OF URBAN INDIAN ELDERS?**

**Ralph Forquera, M.P.H.**

## Introduction

Like other Americans, American Indians and Alaska Natives are an aging
population. Findings from the 1990 and 2000 census indicates that as
many as 60 to 70 percent of Indian people are now living in American
cities.^1^ A growing number of these Indian people are living into their
70s, 80s and beyond. The life expectancy of Indian people has increased
dramatically in the past several decades. Improvements in health care
and state-of-the-art medications are helping to prolong the life of many
Indians including those who live in urban areas.

With this knowledge in hand, the future need for long term health care
for urban Indian elders appears on a collision course with the realities
of Indian health service development and financing. For urban Indians,
the problem could be even more pronounced although the availability of
information to assess the extent of this problem is not currently
collected. So, how are the long term health care needs of urban Indians
going to be address.

This paper will describe the current status of health care for urban
Indians, the implications of this system on long term health care for
urban Indians, the problem that long term care financing will have for
urban Indians, and the probable need for special services in the future.
Lastly, some speculation on the cultural and historic biases that must
be addressed if we are to plan for this impending crisis will be
presented.

## The Urban Indian Landscape

Urban American Indians and Alaska Natives (AI/AN) represent the largest
segment of Indian people in the United States. The 2000 census indicates
that over 60% of the 2.5 million Americans who marked "Indian only" on
their census form live in American cities.^2^ When the figure for Indian
plus another race is considered, the percentage is even higher
(estimated at over 70%).^3^

The movement of Indian people to American cities has been an on-going
process since the turn of the century. Today, urban Indians are
multi-generational. Third generation urban Indians co-exist with Indians
just arriving in cities. Those who have only known urban life cannot be
easily distinguished from those who only recently have arrived from
reservation lifestyles as we consider planning for long term care needs.
The service demands of these apparently disperate groups are actually
separated only by the cultural demands of the groups, biases established
in cultural norms that may enhance or interfere with service access.

When Indian people leave reservations for American cities, they
generally lose eligibility for benefits granted to them when living in
these areas.^4^ This includes access to health care services offered
through the Indian Health Service. Except for a small contracting
program authorized under Title V of the Indian Health Care Improvement
Act (P.L. 94-437)^5^, few resources are made available to address the
health care needs of off-reservation Indians. As a result, there is a
lack of continuity in the availability of health care for urban Indians
and little national data available to describe the needs of those
affected. However, as the population ages, and as the demands of chronic
health care necessitating coordinated disease management and medications
grows, the lack of a uniform system to care for the needs of this
rapidly growing population is likely to mean poorer health outcomes for
urban Indians as they age.

The current Congressional policy regarding Indian health is heavily
influenced by a set of principles established in 1970 aimed at
encouraging tribal self-governance and local management of
federally-sponsored Indian benefits, on Indian reservations, that are
controlled by local federally-recognized Indian tribes themselves.^6^
This being the case, little attention has been given to Indians that
live away from federal reservations, in part a result of insufficient
funding for the Indian Health Service itself and other Indian programs
by the U. S. Congress.^7^

In the case of Indian health, urban Indians have, since 1979, received
just over 1% of the annual funds Congress appropriates to support the
health of Indian people. During this same period, the Indian population
has shifted toward urbanization in large numbers. Inadequate support to
reservations and the need for jobs or schooling have lured increasing
numbers of Indians to urban areas.

In FY-2001, Congress appropriated just under \$30 million for urban
Indian health assistance.^8^ These funds support 34 contracts and a
series of small categorical service grants to community-based,
non-profit agencies that are governed by Indian people. These
independent agencies are located in a limited number of urban
communities in 17 states.^9^ Because they do not have the protections of
tribal trust lands, urban service providers are subject to local and
state rules, regulations, and laws including all state and federal
non-discrimination laws.

In FY-2000, over 90,000 Indians received assistance through this
incomplete network of urban Indian health providers.^10^ None of the
current contractors provide services that would meet the definition of
long term care.^11^

With few exceptions, there are no clearly defined urban Indian
communities. In most cities, urban Indians are geographically dispersed
throughout a metropolitan area. The urban Indian community is tribally
mixed. It is not uncommon to find Indian people from more than 200
different federally-recognized Indian tribes in some urban cities.^12^
Those of mixed racial backgrounds may or may not identify as Indian on
census reports or other official documents. Racial misclassification on
official documents such as birth and death certificates has been well
documented for both reservation and urban Indian populations.^13^ Thus,
determining the exact size of an urban Indian population in a given area
is proving to be a considerable challenge.

The Urban Indian Health Program

The 34 agencies that contract with the Indian Health Service to provide
assistance to urban Indians make up the Urban Indian Health Program for
the nation. The contractors are themselves highly diverse in their size
and services offered. Eleven contractors provide what is considered
"comprehensive medical services," i.e., direct, full-time, outpatient,
primary medical care, as well as other direct and supportive health care
services to their communities. Unlike services through the IHS and
tribes that are often offered at no cost to the Indian beneficiary,
direct health care at urban programs is provided using a sliding-fee. To
further afford to provide direct health care, urban programs frequently
rely on additional funding from local, state, private, and non-Indian
federal sources that are generally allocated to care for those Americans
in poverty or in the lower socio-economic strata in the society.^14^

An additional eleven contractors provide limited medical care, i.e.,
services offered on a more limited basis in time or types of direct care
that can be offered. Often, these programs may have a part-time
physician or a nurse or mid-level health provider, often without the
direct support of a laboratory or on-site pharmacy assistance.^15^

The remaining 12 contractors do not provide any or very limited direct
health care services. These programs offer as their main service:
information, referral, and outreach/education to assist urban Indians in
gaining access to non-Indian health care, be it from private health
providers or non-Indian community health centers. In some areas, urban
programs may also assist urban Indians who might be eligible for direct
care at a tribal or IHS facilities to reach these facilities with
transportation assistance or other facilitative activities.

Another dimension of the urban Indian health program is the more
flexible eligibility standards for assistance than is required of urban
Indian programs. IHS and tribal services are often restricted to Indians
who are members of federally-recognized Indian tribes. For urban Indian
health programs, eligibility is broadened to include those Indians who
are no longer affiliated with a federally-recognized tribe. This
includes Indians who were displaced as a result of the relocation and
termination policies of Congress during the 1940s and 1950s, as well as
those Indians who reluctantly chose to leave their reservation homes for
jobs, education, or to escape reservation poverty. Additionally, there
are countless urban Indians who were adopted by non-Indian families over
the years, a practice that continues today, and thus were raised outside
of an Indian community where cultural beliefs and practices could be
learned. Most lost touch with their Indian roots. A number do not even
know the tribe from which they were adopted.

Finally, urban Indian health programs are situated in cities. As such,
programs and services are subject to federal and state
non-discrimination laws requiring that services are to be offered to
anyone who seeks aid. These distinctions are important to consider when
planning for services as these different standards may affect approaches
to the problem both on and off reservation.

### Long Term Care Facilities 

Currently, there are no nursing homes or other long term care facilities
in the United States that are owned and operated exclusively for urban
Indian people. The 34 agencies that contract with the federal Indian
Health Service to serve urban Indians provide primary health care and/or
referral assistance only. There are no urban Indian hospitals and only
fragmented access to specialty care in urban Indian facilities, i.e. a
consulting obstetrician, podiatrist, optometrist, etc. may offer some
in-facility assistance either as a volunteer or under contract.

A few physicians working for urban Indian health programs have reported
attending to a very few Indian patients in nursing homes or consulted on
Indian patients in non-Indian long term care facilities.^16^ But this
practice is seen as an extension of their regular patient/physician
relationship with a given patient and not a specifically defined part of
their medical practice.

In an informal e-mail survey of the urban Indian health programs, only
two reported that their primary care physicians had visited a nursing
home or convalescent hospital to assist with care for an Indian client.
We speculate that there are Indian people in long term care facilities
across the nation, but because of the limited scope of urban program
activity, it is not possible to assess the extent of Indian people using
long term care facilities.

### Financing and Long Term Care

American Indians and Alaska Natives are one of the least insured of all
Americans. A report by the Henry J. Kaiser Family Foundation on
enrollment of Indian people into Medicaid, Medicare, and SCHIP found
that few Indians, although eligible for these publicly sponsored
programs, actually enroll.^17^ Even fewer Indians appear to buy private
health insurance although data on the percentage of Indians with private
health coverage from their employment is unavailable.

According to the Urban Institute, financing for long term health care
comes primarily from Medicaid and Medicare respectively.^18^ Private
insurance made up only about 5% of the \$54 billion spent on long term
care in 1995. Medicaid, which is a state administered program, is the
major source of non-hospital financial assistance to the elderly,
especially those with a disability.^19^

Medicare eligibility is not universally guaranteed for Indian people. In
the past several years, a few reservation elders and Alaska Native
people usually from remote villages who never paid into Social Security
have been found. Since these individuals never worked in a job where
payment into Social Security was required, we found that they did not
qualify for Medicare coverage when they reached age 65. While the number
of Indian people who find themselves in this situation is small, the
group represents a unique challenge for securing health care financing
for both long term and general primary care assistance.

Lastly, the fact that Indians eligible for Medicare and Medicaid fail to
enroll in these government-sponsored programs may support the notion
that similar practices would exist for long term care. As such, the
manner in which long term care is financed in the country would appear
to offer limited options for Indian people including those living in
American cities. This assessment can also be reached with regard to
private health insurance. Already, few Americans in general, familiar
with the importance of health insurance, are known to buy private long
term care coverage. It is probable that Indians, both on and off
reservation, do not purchase private long term health care insurance.

#### Home Health and Other Outpatient Assistance

Many Indian families in urban areas continue the traditional cultural
practice of caring for family members in a multi-generational way. This
notion that family loyalty and support is an obligation would reinforce
creating more home health care options for long term health assistance.
Unfortunately, there is no existing data to clearly show how extensive
home health aid is currently being handled by Indian people. Most urban
Indian programs that provide direct care only refer patients for long
term care from non-Indian providers. Seeking licensure as a home health
care agency may be an option for future consideration.

In Seattle, the majority of Indian elders served by the Seattle Indian
Health Board live alone or with family or friends. We have a number of
clients who must use wheel chairs or have other disabilities. We find
that most continue to live either alone or with relatives maintaining
quite nicely.

Indian elders that we care for seem quite self-reliant and independent.
Those requiring assistance rely on family and friends who appear to
accept this responsibility with few complaints. This finding further
reinforces the potential of developing home health options through urban
Indian health programs, an approach that deserves greater exploration
and planning.

### Perceptions of Long Term Care

In most parts of the country, perceptions of long term care, both
facilities and access to home and other assistance, is not always
favorable. Countless headlines report physical abuses and neglect in
long term care facilities. Funding for these organizations is often
deficient leading to staffing shortages, facility maintenance problems,
inadequate program management, and an atmosphere that many people would
consider inadequate for their loved ones. Most of the Indian elders that
I spoke with in Seattle said they would refuse to go to a long term care
facility. Those receiving home health care complained about their
workers. Many felt they were not receiving the help they deserved, and
when they complained, they felt they were labeled as "troublemakers" by
officials.^20^

The attitude and treatment by staff responsible for helping individuals
receive and maintain public assistance for their long term care was also
cited as a barrier. In some cases, elders felt they were treated in an
abusive and insulting fashion. The attitudes of these public servants
contributes to the lack of follow through on the part of clients
referred for assistance. A few of those I spoke to felt that the workers
sent to their homes were not adequately trained. At least one mentioned
that their health care worker had robbed them. Such incidents are
quickly communicated to the broader Indian community reinforcing the
already skeptical perceptions about outside, mostly non-Indian, helpers.

### Staffing

The issue of staffing is a frequent complaint by Indian clients in urban
areas. While most urban programs try to hire well-trained Indian
professionals and support staff, they are difficult to find and
expensive to employ. The insufficiency of funding for urban Indian
health programs limits the salaries that can be paid for skilled Indian
employees. In addition, the overall number of Indian people in training
for health professions has declined in the past decade. There is an
overall nursing shortage in the nation, and the number of Indians
choosing health professions is down from the mid-1990s.

### Urban Indian Programs and Long Term Care

The current health care commitment for urban Indians in the nation does
not adequately address the primary care needs of this population let
alone the need for long term care for the elderly or disabled. Congress
has chosen to restrict its commitment to urban Indians to just over 1%
of its annual appropriation while the population of Indians living in
urban areas is growing. With little political strength in most
metropolitan areas, urban Indian health programs, while a logical choice
for the planning of long term care options, are themselves mired in
maintaining current services. Most do not possess the necessary planning
capacity to effectively study long term care needs.

The urban Indian health programs I spoke to are aware of the need for
additional elder care and the crisis in long term health care that looms
on the very near horizon. Several programs are instituting elder
programs designed to keep Indian elders healthier. Many operate or
support hot meals programs, social and cultural programs, and special
programs to address diabetes, heart disease, and other chronic
conditions which may help to reduce or postpone the need for long term
care. But we know that the Indian population, like all other Americans,
is aging. Indian people already experience higher rates of chronic
diseases and at younger ages than the general population. In addition,
the demands of contemporary city life combined with changes in family
dynamics will likely interfere with the historic patterns of caring for
sick or elderly family members. Unlike their reservation counterparts,
urban elders may not live with or close to their direct families.
Therefore, urban Indian elders cannot completely "count on" family for
their care as they age.

### Summary

It is clear that urban Indians will have need for long term health care
as they age. The ability to incorporate long term care services into
urban Indian health programs is not defined. Since the urban Indian
health network has not even established a uniform national primary care
health system, it is unlikely that this group will be in a position to
accept the challenge of creating a long term health care capacity in the
near future.

Existing financing methods for long term care, already inadequate for
the general public, will also pose a challenge for urban Indians. The
current economic downturn is decreasing Medicaid budgets as they become
prime targets by state officials for cost reductions in the aftermath of
severe state budget shortfalls. Since a majority of the cost for long
term care comes from Medicaid, the budget crisis will have a direct
effect on eligibility and future funding.

The lack of sufficient funding has already affected the quality and
quantity of long term care beds around the country. Further reductions
in reimbursement will likely force current long term care facilities to
restrict access or even close. The shortage of well trained and
appropriately-skilled professional and support staff to work in long
term care facilities or to offer home health services is likely to
continue.

While the picture presented above would appear bleak, one bright spot
may be the historic manner in which Indian people have cared for their
elders and those with long term disabilities. Indian Country continues
to show greater acceptance of persons with disabilities or elders
needing personal assistance. Indian families continue to accept their
historic obligation to care for their elders and those who need help. So
while the mainstream long term care picture may not appear pleasant,
creativity, devotion, and a sense of community may be a strength to be
exploited in finding solutions to the long term health needs of urban
Indians.

**Roundtable Discussion of Implications and Recommendations**

**Regarding Urban Indian LTC Issues**

1.  **Urban Indian Needs Assessment:** We don't know the numbers of
    individuals with disabilities or the numbers of elders in need of
    LTC in urban settings. Indians tend to move back home toward their
    later years to retire. Needs assessments are needed to better
    understand elderly and disability in urban Indian communities.

2.  **Training and Orientation on LTC:** Urban Indian health programs
    serving the 34 cities under the IHS Urban Program should receive
    more in depth training and orientation about LTC for elders and
    Indians with disabilities.

3.  **Urban Indian Involvement:** Federal and State LTC programs should
    encourage urban Indian community involvement in LTC systems in the
    urban environment and begin a dialogue with urban Indian service
    providers.

4.  **Focus on Home and Community Based Services:** Nursing homes and
    skilled nursing facilities are likely beyond the scope of urban
    Indian health centers, but Home and Community Based Services (HCBS)
    and training of Personal Care Attendants (PCA), or home health aids,
    are areas that we can focus on and also create opportunities to work
    in collaboration with tribes to provide those services.

5.  **Dissolve Artificial Barriers Between Urban and Tribal
    Communities:** We need to get away from the tribal and urban
    distinction when we talk about services for Indian people. Indian
    people travel back and forth between urban and reservation
    communities. We need to look at each other as collaborators and not
    competitors. This message needs to get to the leaders, so that this
    collaboration is not just words but can become reality.

    ![](media/image7.png){width="2.544488188976378in" height="6.0in"}

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**NURSING HOME SURVEY REPORT**

Bruce Finke, MD

In March and April of 2002, the National Indian Council on Aging (NICOA)
conducted a survey of nursing homes operating on Reservations or in
American Indian and Alaska Native communities. The goal of the survey
was to develop a current list of facilities owned or operated by Tribes,
and to provide some characterizing data about them.

The nursing homes were identified using a variety of sources, including
IHS and NICOA reports^1,2^ and informal lists at the Center for Medicare
and Medicaid Services (CMS). Each of these listings was assumed to be
incomplete, and it is likely that the list below is also not fully
complete.

1.  What Indian Community or Tribe do you serve?

  ------------------------------------ ----------------------------------
  **Facility**                         **Community or Tribe**

  Chinle Nursing Home                  Navajo/Dine

  White River Health Care Center       Rosebud Sioux

  Jourdain/Perpich Extended Care       Red Lake Band of Chippewa Indians
  Facility                             

  Norton Sound Health Corporation      Alaska Native

  Carl T. Curtis Health Education      Omaha Tribe of Nebraska
  Center                               

  Laguna Rainbow Nursing Home and      Pueblo of Laguna
  Elderly Care Center                  

  Blackfeet Care Center                Blackfeet Nation

  Awe Kualawaache Care Center          Crow Indian Tribe/Northern
                                       Cheyenne Tribe

  Choctaw Residential Center           Mississippi Band of Choctaw
                                       Indians

  Gila river Indian Care Center        Gila River Tribe

  Tsali Care Center                    Eastern Band of Cherokee

  Colville Tribal Convalescent Center  Colville Confederated Tribes of
                                       the Coville Reservation
  ------------------------------------ ----------------------------------

-   All but one facility listed themselves as tribally owned. The Chinle
    Nursing Home is owned by a Navajo non-profit organization.

2.  How many beds do you have?

-   Bed size varies from 42 to 120, with an average of 52 beds per
    facility.

-   The median bed size is 48.5, meaning half of the facilities have
    fewer than 48.5 beds.

3.  Approximately what percentage of your beds over the past year has
    been filled with American Indian or Alaska Native people?

-   Facilities reported between 50% and 100% occupancy by American
    Indian or Alaska Natives.

-   7 of the 12 facilities reported 100% Native occupancy and 10/12
    facilities reported 70% or higher Native bed occupancy.

4.  Approximately what has been your occupancy rate over the past year?

-   Occupancy rates ranges from 50% to 100%.

-   Average occupancy rate is 64.75%.

-   Median occupancy rate is 69%, meaning half of the facilities have
    occupancy rates below 69%

5.  Do you receive reimbursement from:

    1.  Medicaid?

-   92% (11/12) of facilities report receiving Medicaid reimbursement.

    1.  Medicare?

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-   58% (7/12) of facilities report receiving Medicare reimbursement

    1.  VA?

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-   25% (3/12) of facilities report receiving Veterans Administration
    reimbursement

    1.  Tribal Funds?

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-   42% (5/12) of facilities report receiving reimbursement from tribal
    funds.

6.  Do you have currently have unfilled positions

    1.  Certified Nursing Asistants (N.A.s)

-   75% (9/12) of facilities report unfilled Nursing Assistant
    positions.

    1.  RNs, LPNs

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```
-   50% (6/12) of facilities report unfilled RN/LPN positions.

    1.  Administrative Staff

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```
-   25% (3/12) of facilities report unfilled administrative positions.

7.  Have you had difficulty filling unfilled positions or retaining
    staff (yes/no)

    1.  Certified Nursing Asistants (N.A.s)

-   83% (10/12) of facilities report difficulty filling Nursing
    Assistant positions.

    1.  RNs, LPNs

```{=html}
<!-- -->
```
-   58% (7/12) of facilities report difficulty filling RN/LPN
    posisitons.

    1.  Administrative Staff

```{=html}
<!-- -->
```
-   25% (3/12) of facilities report difficulty filling administrative
    positions.

### RESOURCES

1\. Indian Health Service National Resource Directory for American
Indian and Alaska Native Elders. 1996.

2\. John R, Baldridge D. [The NICOA Report: Health and Long Term Care
for Indian Elders]{.underline}. A Report of the National Indian Council
on Aging for the National Indian Policy Center. 1996.

![](media/image7.png){width="1.272047244094488in" height="3.0in"}

![](media/image8.wmf)**CENSUS INFORMATION ON AMERICAN INDIANS AND ALASKA
NATIVES**

**IMPLICATIONS FOR LONG TERM CARE**

**MARIO D. GARRETT PH.D.**

DATA ANALYSIS SERVICE

April, 2002

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height="5.1090277777777775in"}

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height="2.5541666666666667in"}

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height="5.097222222222222in"}

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height="5.166666666666667in"}

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**ECONOMIC ANALYSIS OF LONG TERM CARE**

Bruce Finke, MD

*The following is a prepared response to the question:*

What would be the overall funding (including staffing and equipment)
that would be needed for the Indian Health Service to provide long term
care for the elderly, in the form of Skilled Nursing Facilities and
Nursing Home services.

# Response

Using the data and assumptions detailed below, an estimate of the yearly
cost of Skilled Nursing Facilities and Nursing Home services for the IHS
user population is between **\$620,370,000** and **\$825,750,000.**

This estimate attempts to reflect the cost of staffing, equipment, care,
and ongoing capital expenses, but not initial start-up costs. It is
likely that it significantly underestimates the cost involved in new
construction of facilities. It is based on reimbursement levels provided
by states for these services, substantially lower than those provided by
private payers.

The Indian Health Service does not now provide Skilled Nursing Home and
Nursing Facility services and does not have an established methodology
for forecasting these costs. The estimates provided here represent a
"best guess" using currently available data.

# Data and Assumptions

Need for Skilled Nursing Home and Nursing Facility Care is determined by
multiple factors, including elder's functional limitations, availability
of family support, elder's preferences and values, and acceptability of
available services. Functional status represents the most quantifiable
and best-studied predictor of need for long term care services.

The largest available data set on the functional limitations of American
Indian and Alaska Native elders suggests the following prevalence rates
of need for help in activities of daily living (ADLs: bathing, dressing,
eating, getting in or out of bed, walking, and using the toilet).^1^

  ------------------------------------------ ------------ ---------------
  **Functional Limitations**                 **Age        **Age 65 and
                                             55-64**      older**

  Moderate (limitations in one activity of   18%          23.4%
  daily living or two instrumental                        
  activities of daily living)                             

  Moderately Severe (limitations in 2        6.6%         7.4%
  activities of daily living)                             

  Severe (limitations in 3 or more           10.7%        14.7%
  activities of daily living)                             
  ------------------------------------------ ------------ ---------------

Data from a earlier, smaller sample of this population, suggests that
9.6% of AI/AN elders 55 years and older had 4 or more ADL
limitations.^2^ Data on functional limitations among nursing home
residents in 1997 indicates that the mean number of ADLS with which
nursing home residents needed help was 4.4%.^3^

Using the most recent IHS User Population data with age breakdowns
available (1997)^4^, we can estimate the number of IHS beneficiaries
with the following functional limitations:

  ---------------------------------- ----------- ----------- -------------
  **Functional Limitation**          **Age       **Age 65    **Total age
                                     55-64**     and older** 55 and
                                                             older**

  Moderate (limitations in one       12,417      17,461      29,878
  activity of daily living or two                            
  instrumental activities of daily                           
  living)                                                    

  Moderately Severe (limitations in  4,553       5,522       10,075
  2 activities of daily living)                              

  Severe (limitations in 3 or more   7,381       10,969      18,350
  activities of daily living)                                
  ---------------------------------- ----------- ----------- -------------

  --------------------------------------------------------- -------------
  **Functional Limitation**                                 **Age 55 and
                                                            older**

  Limitations in 4 or more ADLS (9.6%)                      13,786
  --------------------------------------------------------- -------------

The cost of care varies across a range determined by regional costs and
intensity of care, but a reasonable figure derived from reimbursement
schedules of several states for is **\$45,000** per year^5^ per client.
This figure reflects the cost of staffing, equipment, care, and ongoing
capital expenses, but not initial start-up costs.

Using the data and assumptions detailed below, the yearly cost of
Skilled Nursing Facilities and Nursing Home services for the IHS user
population can be conservatively estimated to be between
**\$620,370,000** and **\$825,750,000.** The lower estimate is based on
the cost of services for only those elders whose functional limitations
(4 or more ADLs) most closely match those of current nursing home
residents in a national sample. The higher estimate is based on the cost
of services for all elders who meet nursing home eligibility standards
under most state Medicaid programs (3 or more ADL limitations).

This estimate attempts to reflect the cost of staffing, equipment, care,
and ongoing capital expenses, but not initial start-up costs. It is
likely that it significantly underestimates the cost involved in new
construction of facilities.^6^ It is based on reimbursement levels
provided by states for these services, substantially lower than those
provided by private payers.^5^

## NOTES AND REFERENCES

1.  The National Resource Center on Native American Aging at the
    University of North Dakota Center for Rural Health. The data were
    derived from the \"Identifying Our Needs: A Survey of Elders\" - a
    needs assessment project being conducted by tribes across the
    nation. The data file contain 8,560 respondents representing 83
    tribes.

2.  Activity Limitations Among Native American Elders. Report 01-2 of
    the National Resource Center on Native American Aging at the
    University of North Dakota Center for Rural Health. October, 2001.

3.  Sahyoun NR et al. The Changing Profile of Nursing Home Residents:
    1985-1997. Trends in Health and Aging. Aging Trends No.4.
    March 2001. Centers for Disease Control and Prevention. National
    Center for Health Statistics.

4.  1997 Indian Health Service User Population. Indian Health Service
    Program Statistics Team. Contact: Edna Paisano, Principle
    Statistician, Program Statistics Team.

5.  Data from the states of Washington, North Dakota, and New Mexico.
    For comparison, the AARP published national private pay average
    costs for nursing home care at \$4,654 per month or \$55,848 per
    year.

6.  The cost of new nursing home construction in North Dakota averages
    \$120,000 per bed when there is a mix of single and double rooms.
    This would place the cost of a 60 bed unit at \$7.2 million.
    Personal conversation, Muriel Peterson, North Dakota Department of
    Human Services.

# Further Discussion

"Long-term care is a set of health, personal care, and social services
delivered over a sustained period of time to persons who have lost or
never acquired some degree of functional capacity.\"(Kane and Kane)^7^

The long term care needs of American Indian and Alaska Native elders
must be met by an array of resources which provide needed services in
the least restrictive setting possible in a manner consistent with the
elder's wishes and cultural values.

While nursing homes are one element of a long term care system, they are
the most restrictive and most expensive setting. In addition, the small
population size and dispersed pattern of AI/AN elders makes nursing home
construction and management (where economics of scale dictate larger bed
capacity) less economically feasible.^8^ Finally, the removal of an
elder from the home and family setting is often unacceptable and
undesirable to the elder and the family. It has the potential, by
removing the elder from daily interaction with the extended family, to
disrupt the cultural continuity of the family and community.

Alternatives to nursing homes have taken an increasing role nationally
and in AI/AN communities. Particularly promising are home and community
based models that focus on the cost effective provision of services in
the least restrictive setting. Services include personal care and
homemaker services, meal preparation, housing modification, case
management, caregiver respite and caregiver training. Settings range
from the elder's own home to small and medium sized (6-30 units) home
settings for elders and the disabled in which needed personal care
services can be delivered.

The data presented in the above discussion can be used to estimate the
costs of provision of home and community based care to the entire
population of AI/AN elders with functional limitations.

  ---------------------------------- ----------- ----------- -------------
  **Functional Limitation**          **Age       **Age 65    **Total age
                                     55-64**     and older** 55 and
                                                             older**

  Moderate (limitations in one       12,417      17,461      29,878
  activity of daily living or two                            
  instrumental activities of daily                           
  living)                                                    

  Moderately Severe (limitations in  4,553       5,522       10,075
  2 activities of daily living)                              

  Severe (limitations in 3 or more   7,381       10,969      18,350
  activities of daily living)                                
  ---------------------------------- ----------- ----------- -------------

Cost of care assumptions can be derived from the North Dakota Department
of Human Services average expenditure data for individuals with similar
levels of functional limitation. We can use these cost of care
assumptions to estimate the total long term care costs for the IHS user
population if all eligible individuals received services.

+----------------------------+------------------------+----------------+
| **Functional Limitation**  | **Average expenditure  | **Projected    |
|                            | per client per year in | costs**        |
|                            | North Dakota^9^**      |                |
|                            |                        | **AI/AN 55 and |
|                            |                        | older**        |
+----------------------------+------------------------+----------------+
| Moderate (limitations in   | \$4,632                | \$138,394,896  |
| one activity of daily      |                        |                |
| living or two instrumental |                        |                |
| activities of daily        |                        |                |
| living)                    |                        |                |
+----------------------------+------------------------+----------------+
| Moderately Severe          | \$4,992                | \$50,294,400   |
| (limitations in 2          |                        |                |
| activities of daily        |                        |                |
| living)                    |                        |                |
+----------------------------+------------------------+----------------+
| Severe (limitations in 3   | \$10,254               | \$188,160,900  |
| or more activities of      |                        |                |
| daily living)              |                        |                |
+----------------------------+------------------------+----------------+

The total cost of care for home and community based services for IHS
served elders with moderate, moderately severe and severe functional
limitation using these estimates would be **\$370,850,196**. This
compares quite favorably to the estimated cost for skilled nursing home
and nursing facility care derived above from the same set of
assumptions.

These cost of care assumptions do not include housing. Some elders will
not be able to be cared for in their own home and will need housing as a
part of the long term care package. Housing costs can estimated by using
the State of Washington average reimbursement level of \$22,000 per year
for housing in small and medium sized homes (up to 30 beds) under the
Medicaid waiver program.^10^ Although we do not have data indicating the
need among AI/AN elders for housing as a component of long term care, we
can make an assumption for the purposes of this discussion. If we assume
that 10% of the 58,303 AI/AN elders with functional limitations require
housing as an element of long term care, we can add an additional
\$128,266,600 to the cost estimate.

This would bring a total cost of care to \$**499,116,796.**

These cost estimates suggest that all eligible AI/AN elders in with
functional limitations could be served in the community at substantially
less cost than would be required to serve only the neediest 25% in
nursing homes.

# ADDITIONAL REFERENCES AND NOTES

7.  R. A. Kane & R. L. Kane. Long-term care: Principles, programs, and
    policies. New York, NY: Springer, 1987.

8.  Trends in Nursing Home Size. National Nursing Home Survey. Centers
    for Disease Control and Prevention. National Center for Health
    Statistics.
    <http://www.cdc.gov/nchs/about/major/nnhsd/nnhs_chart.htm>

9.  Personal communication, Muriel Peterson. North Dakota Department of
    Human Services.

10. Personal communication, Shelly Zylstra, Washington State NWAAA.

    ![](media/image25.png)

[^1]: William F. Benson of The Benson Consulting Group serves as
    National Policy Advisor to NICOA and president of The Benson
    Consulting Group and is the former head of the U.S. Administration
    on Aging (DHHS). The author wishes to acknowledge the contributions
    to this paper made by Dave Baldridge, executive director of NICOA,
    Eric Carlson, attorney with the National Senior Citizens Law Center,
    and Linda Redford, Ph.D., director of the Geriatric Education Center
    at the Center on Aging of the University of Kansas Medical Center.

[^2]: *Activity Limitations among Native American Elders*. National
    Resource Center on Native American Aging, University of North
    Dakota. Report 01-2. October 2001

[^3]: Ibid.

[^4]: *National Indian Aging Agenda for the Future*. National Indian
    Council on Aging. 1995. Note Appendix I

[^5]: *The NICOA Report: Health and Long Term Care for Indian Elders*.
    Robert John and Dave Baldridge. A report by NICOA for the National
    Indian Policy Center, 1996.

[^6]: *Indian Health in Nine State Medicaid Managed Care Programs*. Mim
    Dixon. September 1998.

[^7]: *Long term Care Service Needs of American Indian Elders in the IHS
    Santa Fe Service Unit* (draft). Catherine Hagan Hennessey, Robert
    John, Lonnie C. Roy. July 1998

[^8]: Author's conversation with Alan Allery, director of the NRCNAA,
    2001

[^9]: *Home and Community-Based Long Term Care in American Indian and
    Alaska Native Communities*. Administration on Aging, U.S. Department
    of Health and Human Services, Native Elder Health Care Resource
    Center, University of Colorado, National Resource Center on Native
    American Aging, University of North Dakota. December 1996.

[^10]: *Long term Care in Indian Country: A Project to Establish
    "Building Blocks" for Tribal Use in Planning for the Long term Care
    Needs of Indian Elders*, a project of NICOA in partnership with the
    National Senior Citizens Law Center funded by the Retirement
    Research Foundation (Chicago, IL), and the Geriatric Education
    Center at the Center on Aging of the University of Kansas Medical
    Center.

[^11]: It is not yet clear whether the "owned by tribe" and "operated by
    tribe" has overlap within the responses and if so to what extent. In
    other words, it may be that among the five tribes operating a
    nursing home 4 of them own the facility. (Question no. 5)

[^12]: Designed with consultation from Dr. Bruce Finke of the IHS and
    administered and analyzed by Eva Gardipe and Heather Mann of NICOA.

[^13]: These numbers appear skewed by OK, e.g., 10 of 11 reporting OK
    tribes report the availability of home health care a far greater
    percentage than among all other tribes

[^14]: Excluding OK tribes

[^15]: Please address comments on this paper to Mim Dixon, Mim Dixon and
    Associates, 1618 Spruce Street, Boulder, CO 80302, or via e-mail to
    <mimdixon@hotmail.com>, or by FAX at 303-443-4733, or by telephone
    at 303-674-9513.

[^16]: This paper relies primarily on information presented in
    *Understanding Medicaid Home and Community Services: A Primer*
    (Smith 2000). To make the paper more readable, the only times this
    reference is specifically cited is when there is a direct quote that
    is tied to a page number. Unless other references are cited, it
    should be assumed that the source of information is Smith (2000).

[^17]: The elderly comprise only about 10 percent of the total Medicaid
    beneficiaries (Wiener 2000).

[^18]: Formerly the Health Care Financing Administration

[^19]: For acute and chronic medical care, Congress has funded the
    Indian Health Service at less than 60 percent of the need, as
    compared the the federal employee benefit package.

[^20]: Under OAA, there is great variation in long term care services
    from state to state and even within states by Area Agencies on
    Aging.

[^21]: Some tribal organizations are designated as AAA, including the
    Inter Tribal Council of Arizona and the Navajo Nation.

[^22]: According to Tilly (2001) states with large AI/AN populations
    that have a significantly lower percentage expenditure on
    institutional care include Oregon with 40-49 percent of the LTC
    Medicaid budget spent on institutional care; Alaska, Washington,
    Wyoming, and New Mexico in the 50-59% category; and California,
    Montana, Utah, Minnesota, Michigan and Wisconsin in the 60-69%
    category. At the higher than average category is Nevada with 80-89
    percent of Medicaid LTC spent on institutional care.

[^23]: Nationally, 71 percent of adults who require assistance receive
    it from unpaid caregivers (Tilly 2001). It is possible that the
    percentage is higher in Indian Country, but that has not been
    substantiated.

[^24]: In 1998, 38 states had CON programs and 19 states had a
    moratorium on new construction of nursing homes (Wiener 2000).

[^25]: The Supreme Court qualified this decision to take into account
    the professional judgment of the appropriateness of the placement,
    the preferences of the people who are affected, and the resources
    that are available to support the needs of the entire group of
    people with disabilities who are entitled to state-funded services.

[^26]: Medicare was never designed as a long term care program. The
    Medicare reimbursement guidelines allow for only medically-directed
    episodic care, not the continuing or chronic care that is the
    hallmark of long term care.

[^27]: An excellent example of this type of synergy on the national
    level was the passage of the Diabetes Grant funding for Indian
    health that was approved on the coattails of a broad campaign for
    diabetes funding by national advocacy groups, such as the American
    Diabetes Association.

[^28]: Now called Centers for Medicare and Medicaid Services (CMS).

[^29]: As a policy alternative, if the federal government were going to
    fund long term care in Indian Country through state Medicaid
    programs, they could carve out that funding to go directly to tribes
    and circumvent the costly step of negotiation and billing Medicaid.
    While this might be the preferred approach, it is not the subject of
    this paper.

[^30]: At the present time, no waivers have been proposed to target
    tribal areas.

[^31]: Some types of immigration status also qualify for Medicaid.

[^32]: This ceiling for federal participation is 133.3 percent of the
    highest amount paid to a family of the same size that receives Aid
    for Families with Dependent Children (AFDC).

[^33]: 40 states provide Medicaid automatically to everyone who receives
    SSI payments in any month, while 11 states are more restrictive.

[^34]: Also, the funds needed to support a disabled adult child must be
    deducted.

[^35]: This is often considered a Medicaid Qualifying trust, designed
    more to assure eligibility rather than to result in recovery.

[^36]: In 2000, the 300 percent of SSI was the equivalent of \$1536 per
    month.

[^37]: This includes people receiving home and community based services.

[^38]: Despite a prohibition of "Medicaid estate planning" in the
    Balanced Budget Act of 1997, there is a thriving industry to advise
    middle class and wealthy individuals about how to transfer, shelter
    and under-report their assets to qualify for Medicaid nursing home
    care without the consequences of estate recovery (Weiner 2000).

[^39]: Weiner (2000) regards this as an attempt by states to shift costs
    from Medicaid to Medicare. He points out that the Medicare program
    has resisted this trend, both to control costs and to protect
    Medicare beneficiaries' freedom of choice of providers.