A 360 Look at LongTerm Care

1
A 360? Look at Long-Term Care

• Jeffrey S. Crowley, M.P.H.
• Senior Research Scholar
• Health Policy Institute, Georgetown University
• [phone]/jsc26_at_georgetown.edu

2
What are Long-TermServices and Supports?

• Long-term services and supports assist
  individuals in meeting essential needs for
  maintaining a quality of life with maximum
  dignity and independence. This includes housing,
  transportation, nutrition, technology, personal
  assistance, and other social supports.
• While commonly used, long-term care is not the
  preferred term for the assistance that
  individuals need individuals believe they need
  assistance and not care.
• In the context of health-related services, and
  assistance provided through Medicaid, we are
  generally talking about non-medical services that
  assist individuals in performing activities of
  everyday life.

3
Most of todays elderly are at risk of
impoverishment from nursing home stays

• Average annual cost of a year of nursing home
  care 70,000
• Median household income of the elderly 25,000
• Median household income of an elderly woman
  living alone 12,000
• Median wealth excluding home equity 23,885
• Median wealth including home equity 108,885
• Bottom 30 percent of the elderly have essentially
  0 net worth

SOURCE Census data cited in OBrien 2005.
(ltc.georgetown.edu/pdfs/nursinghomecosts.pdf)
4
Most of the elderly have insufficient assets to
pay for one year of nursing home care
(Share of the elderly with enough assets to pay
for 1 year, 1-3 years, 3 years of nursing home
care at 70,000 per year)
SOURCE Lyons, Desmond, and Schneider, June 2005,
Kaiser Family Foundation, Distribution of Assets
of the Elderly Living in the Community.
kff.org/medicaid/loader.cfm?url/commonspot/securi
ty/getfile.cfmPageID53591
5
People with Long-Term ServicesNeeds, 2000
63 are age 65 and above 37 are under age 65
Total 9.5 Million
SOURCE Rogers and Komisar 2003. NOTE
Georgetown University Health Policy Institute
analysis of the 2000 National Health Interview
Survey, and A. Jones, 2002. The National Nursing
Home Survey 1999 Summary, Vital Health
Statistics 13 (152). Community residents unable
to perform at least one activity of daily living
or instrumental activity of daily living and
nursing home residents.
6
Share of People Age 65 Receiving Long-Term
Services
SOURCE Unpublished estimates from Brenda C.
Spillman of the Urban Institute, based on the
1999 National Long Term Care Survey, reported in
OShaughnessy, 2005. NOTE Receipt of
long-term care is defined as receiving human
assistance or standby help with at least 1 of 6
ADLs or being unable to perform at least 1 of 8
IADLs without assistance.
7
Medicaids Role

• Medicaid is the major source of public financing
  for long-term services and supports for people
  with disabilities and seniors.
• The introductory text of the Medicaid Act reads,
  For the purpose of enabling each State, as far
  as practicable under the conditions in such
  State, to furnish(2) rehabilitation and other
  services to help such families and individuals
  attain or retain capability for independence or
  self-care, there is hereby authorized to be
  appropriated for each fiscal year a sum
  sufficient to carry out the purposes of this
  title. (1901 of the Social Security Act)
• Forty years later, Medicaid has become the
  nations de facto long-term care safety neta
  role that it was not designed to fill. This came
  about largely as a result of policy failures
  outside of Medicaid, driven by the failure to
  achieve a national consensus on how to plan for
  and finance long-term services and supports.

8
National Spending on Long-Term Services, 2003(in
billions)
Total 181.9 billion
SOURCE OBrien, Georgetown Health Policy
Institute based on CRS Analysis of data from the
National Health Accounts, Centers for Medicare
and Medicaid Services. Includes unpublished data
from CMS on Medicare and Medicaid expenditures
for hospital-based nursing home and home health
care, and data from Medicaid expenditures under
HCBS Waivers.
9
Medicaid Expenditures for Long-Term Care,
1994-2004 (billions of dollars)
Total 45.7 billion
Total 89.3 billion
SOURCE Burwell, Sredl, and Eiken, 2005. Fiscal
year expenditures.
10
Medicaids Institutional Bias

• Medicaid has both mandatory services that states
  must provide and optional services which can also
  receive federal matching payments.
• Under the Medicaid Act, nursing facility services
  are mandatory and a variety of community-based
  services are optional. This is called Medicaids
  institutional bias.
• There are three ways state Medicaid programs can
  provide home and community-based services 1)
  through the mandatory home health benefit 2)
  through one of several optional state plan
  services and 3) through home and community-based
  services waivers.

11
Medicaid Coverage and Financing for Long-Term
Services and Supports

• Home health A mandatory benefit that
  historically has emphasized the provision of
  skilled, medically-oriented services in the home.
  Access can be greatly restricted through level
  of care requirements.
• Optional services States can offer services,
  such as personal care, rehabilitation services,
  private duty nursing, physical therapy, and
  occupational therapy. Services must be provided
  statewide without enrollment caps.
• Waiver services 1915(c) home and community-based
  services (HCBS) waivers that allow states to
  target specific populations and geographic
  locations. Enrollment caps are permitted and
  must be budget neutral. Waiting lists for HCBS
  waivers are long, and in some cases persons can
  be forced to wait for several years. In 2005,
  more than 206,000 people with disabilities were
  on HCBS waiver waiting lists. The number of
  people on waiting lists has grown significantly
  in recent years.

12
The Impact of the OlmsteadDecision on Medicaid

• In 1999, the Supreme Court issued its decision in
  the case of Olmstead v. L.C. This was the
  Courts first effort to interpret the meaning of
  the Americans with Disabilities Act (ADA) as it
  relates to health and long-term services.
• The Court found that the unjustified
  institutional isolation of people with
  disabilities is illegal discrimination
• Olmstead case was not based on the Medicaid law.
  Rather, Olmstead established that state Medicaid
  programs must operate in ways that comply with
  the ADA.
• The Courts decision did not change the Medicaid
  law or require an end to the institutional bias.
  
• Although the promise of Olmstead as a tool for
  the advancement of the civil rights of people
  with disabilities in Medicaid has not yet been
  fully achieved, the Olmstead decision has led to
  important policy responses.

13
Challenges to Ending Medicaids Institutional Bias

• Financial Constraints on Medicaid Ending the
  institutional bias by creating a new entitlement
  to community living services has the potential to
  incur substantial new costs for federal and state
  governments.
• Affordable HousingMedicaid funds generally
  cannot be used for housing, and there are
  currently inadequate resources to ensure access
  to appropriate housing through Section 8 and
  other subsidy programs.
• Labor ShortagesThere is a shortage of direct
  care workers who are trained and willing to
  provide community-based personal assistance and
  other long-term services.
• Political PressureThe nursing home industry and
  organized labor are both politically powerful
  lobbies that have worked against
  de-institutionalization efforts in the past.

14
Diverse Populations have Diverse Needs

• There is a diversity of beneficiaries who rely on
  Medicaid long-term services. Effective policy
  solutions must accommodate the diversity and
  extent of individual needs.
• Consider
• Persons with mental retardation and developmental
  disabilities
• Persons with mental illness
• Persons with spinal cord injuries and traumatic
  brain injuries
• Persons with Alzheimers disease and dementia

15
Intermediate Care Facilities for Persons with
Mental Retardation (ICFs-MR)

• Optional Medicaid service added in 1967
• 7,400 ICFs-MR in U.S. serving 129,000 people
• Institution (or distinct part of an institution)
  that is primarily for the diagnosis, treatment,
  or rehabilitation for people with mental
  retardation and provides, in a protected
  residential setting, ongoing evaluation,
  planning, 24-hour supervision, coordination, and
  integration for health or rehabilitative services
  to help individuals function at their greatest
  ability.

Source Centers for Medicare and Medicaid
Services, http//www.cms.hhs.gov/medicaid/icfmr/de
fault.asp
16
Changing Models of DeliveringMR/DD Services

• Recent trends have been toward providing MR/DD
  services in community settings and/or in smaller
  ICFs-MR
• Nonetheless, ICFs-MR tend to serve persons with
  MR/DD who have more severe disabilities than
  persons receiving non-ICF-MR services
• In 2002, 367,456 persons with MR/DD received HCBS
  waiver services, at a per person average cost of
  roughly 35,000

Source State of the States in Developmental
Disabilities Project, 2003, The Coleman Institute
for Cognitive Disabilities, University of
Colorado System
17
Persons with Mental Illness

• Roughly 40 million Americans experience some type
  of mental disorder every year5 of these
  individuals have serious mental illness, such as
  schizophrenia, major depression, or bipolar
  disorder
• Medicaid accounts for more than 50 of state and
  local mental health spendingexpected to reach
  60 by 2007
• 16 of adult Medicaid beneficiaries (age 21-64)
  and 8 of children in Medicaid use mental health
  or substance abuse services
• 9-13 of Medicaid spending is for mental health
  care.

Sources Policymakers Fact Sheet, NAMI,
September 2002 and Whither Medicaid? A Briefing
Paper on Mental Health Issues in Medicaid
Restructuring, The Campaign for Mental Health
Reform, September 2004.
18
Current State of Mental Health Treatment

• Despite perceptions to the contrary, mental
  health treatment is effective and recovery is
  possible
• Treatment effectiveness rates for disorders like
  schizophrenia, bi-polar illness, and major
  depression compare favorably with many surgical
  treatments and physical health conditions
• Community treatment is often cheaper and more
  cost-effective than inpatient hospitalization.
  Fewer than 70,000 people receive inpatient mental
  health treatment in state hospitals
• Due to gaps in access to mental health coverage,
  jails, prisons, and juvenile facilities have
  become primary sources of mental health treatment
  for many

19
Critical Medicaid Mental Health Services

• Medicaid mental health services include medical
  and clinical services (prescribing medications,
  counseling, and psychotherapy), psychosocial
  rehabilitation, partial hospitalization, and
  assertive community treatment
• Targeted case management and rehabilitation
  services are optional service categories of
  critical importance when providing comprehensive
  mental health services
• Medicaid was never intended to replace state
  mental health system IMD exclusion is a policy
  since Medicaids inception that prohibits
  Medicaid funding for institutions for mental
  disease (i.e. inpatient facilities with 16 or
  more psychiatric beds) for persons under 65

20
Assertive Community Treatment (ACT)

• Recognized as a model evidence-based practice for
  long-term treatment that has been shown to
  substantially reduce hospitalization, increase
  housing stability, and moderately improve
  symptoms and quality of life
• Multidisciplinary teams provide intensive
  services to persons with severe mental illnesses
  majority of services delivered where consumers
  live and work provides and coordinates care
  helps manage symptoms and provides immediate
  crisis response
• In 1999, President Clinton authorized ACT for
  Medicaid reimbursement several states cover ACT
  under their state plans federal policies and
  conflicting rules have created barriers to
  broader use of ACT in Medicaid

21
Persons with Spinal Cord Injuries and Traumatic
Brain Injuries

• Brain Injury An insult to the skull, brain, or
  its covering, resulting from external trauma,
  which produces an altered state of consciousness,
  or anatomic, motor, sensory, or cognitive or
  behavioral deficit
• Traumatic Brain Injury (TBI) A brain injury
  that results in short or long-term problems with
  independent function
• Spinal Cord Injury (SCI) A lesion to the spinal
  cord or cauda equina resulting form external
  trauma with evidence of significant involvement
  of two of the followingmotor deficit, sensory
  deficit, bowel and bladder dysfunction

22
Early Intervention is Criticalfor People with TBI

• 5.3 million Americans living with a disability as
  a result of TBI
• 1.5 million sustain a TBI each year, but only
  80,000 experience the onset of long-term
  disabilities following a TBI
• Individuals with serious TBI generally need early
  intervention and long-term management
• Due to Medicares waiting period, Medicaid is
  disproportionately responsible for paying for
  extensive early intervention services

Source Brain Injury Association of America,
2001.
23
People with Spinal Cord Injuries Have Extensive
Long-Term Needs

• Roughly 250,000 Americans have spinal cord
  injuries
• 11,000 new injuries occur each year 82 in men
  56 of injuries occur between ages 16 and 30
• Following injury, average length of acute care
  stay is 15 days, followed by 44 days in a
  rehabilitation unit
• Average cost for the first year of services is
  198,000
• 31 of persons with spinal cord injury have
  Medicaid coverage

Source University of Alabama, National Spinal
Cord Injury Statistical Center, March 2002.
24
Post-Acute and OngoingRehabilitative Services

• Inpatient Rehabilitation Hospitals Provide
  intensive post acute services that allow
  individual to learn skills necessary to maximize
  their independence when they leave the hospital
  (learning how to transfer/move their bodies,
  dress, bath, toilet, and eat in new ways)
• Home Health Provides assistance with skilled
  care that many individuals with TBI or SCI
  require to live independently in their community
  and stay out of the hospital some states
  provide skilled care through certain 1915(c)
  waivers
• Outpatient Therapies Provide ongoing support
  required by many individuals to reinforce the
  time-limited services received in the inpatient
  setting

25
Persons with Alzheimers Diseaseand Dementia
4.5 Million Americans with Alzheimers Disease
Source Alzheimers Association based on Urban
Institute tabulations from the 2000 Medicare
Current Beneficiary Survey, excludes dual
eligibles in Medicare managed care plans.
26
Long-Term Services Needs areExtensive and
Expensive

• Alzheimers disease requires 24 hour a day care
  and lasts an average of 7 to 8 years from
  diagnosis
• At any one time, at least 70 of people with
  Alzheimers disease are living at home, but
  slightly more than half of Medicaid beneficiaries
  with Alzheimers disease reside in nursing homes
• The average cost of nursing home care in urban
  areas is nearly 62,000 per year for a shared
  room
• Community services are also expensive agency
  provided home care averages 18 per hour and
  specialized dementia care at an adult day center
  ranges from 4565/day

Source Alzheimers Association.
27
Alzheimers Disease Burdens Families

• Persons with Alzheimers disease require
  assistance with personal tasks (bathing,
  dressing, feeding, and toileting),
  round-the-clock supervision, cueing, and stand-by
  assistance to help the person with dementia
  retain their functional abilities and protect
  them from harm
• Survey found that caregiving takes a heavy toll
  on families2/3 of working caregivers missed
  work 14 gave up work altogether nearly half of
  non-spouse caregivers were providing financial
  assistance (usually to a parent) averaging
  218/month

Source Alzheimers Association and National
Alliance for Caregiving.
28
NASI Report Highlights Challenges Facing Nation

• In November 2005, the National Academy for Social
  Insurances Long-Term Care Study Panel issued its
  report, Developing a Better Long-Term Care
  Policy A Vision and Strategy for Americas
  Future
• Panel cited the following shortcoming with our
  current system
• Unmet needs
• Burden on caregivers
• Financial Jeopardy for families
• Limitations in Medicaid
• Quality Problems
• Demographic Challenges
• Panel identified universal approaches (I.e.
  social insurance on the model of Social Security)
  and means-tested approaches (I.e. floor of
  protection within Medicaid) that could address
  these problems also recognized that policy
  makers could choose from a mix of public and
  private financing and delivery options.
  Successful models exist in other countries.
• Major challenges remain over achieving consensus
  for action