LONG-TERM CARE REFORM Challenges

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LONG-TERM CARE REFORMChallenges Opportunities
Insert Product Photograph Here
June 2007
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FACT The vast majority of the 50. . .

• . . . do NOT require long-term
  assistance
• at any one time.
• FACT Two-thirds of us will require
  assistance at
• some point ahead in our
  life.
• Most American families will face the issue
• of long-term services and supports
• for one or more of our 50 members.

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Where are our 10 Million who Need LTCare?
Source Kaiser, from CMS, National Health
Accounts, 2005
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Whats LTCare costing, and who pays?
158.2 billion
Source Kaiser, from CMS, National Health
Accounts, 2005
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AARP has conducted . . .

• the first national survey
• focusing on
• 50 Americans with disabilities

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Most surveyed could not do something wanted
or needed in last month because of disability
Figure 40
Q. Have there been times in the last month when
you could not do something you really needed or
wanted to do because of your disability or health
condition? Source AARP/Harris Interactive Survey
of Persons 50 and Older with Disabilities,
September 2002
By severity
By age
Overall
65
50
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COST is the MAIN BARRIER to getting more help
Chart from Table 12
Q. What is the main reason why you do not receive
enough help? Base People who need more
help. Source AARP/Harris Interactive Survey of
Persons 50 and Older with Disabilities, September
2002
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Most survey respondents needs and desireswere
FAIRLY MODEST
Q. What did you want or
need to do but could not do? Source AARP/Harris
Interactive Survey of Persons 50 and Older with
Disabilities, September 2002
Table 13
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When asked open-ended question about their
worries concerns, respondents said LOSS of
INDEPENDENCE and MOBILITY
Table 18
Q. Looking to the future, what are your biggest
worries or concerns about having a disability
or health condition? Source AARP/Harris
Interactive Survey of Persons 50 and Older with
Disabilities, September 2002 Note Percentages do
not total 100 because of other responses.
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1/3 said disability has caused loss of control
over HOW they spend, WHO gives services
Chart from Table 20
Q. How much has your disability or health
condition affected your level of control in the
following areas? Has your disability or health
condition caused you to have a lot less control,
somewhat less control, more control, or has it
had no effect on your control over...? Source
AARP/Harris Interactive Survey of Persons 50 and
Older with Disabilities, September 2002
Less
Less
Same
Same
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If home care services needed, 50 with
disabilities prefer own control (vs agency
control) over and management of home care
workers
Table 26
Q. Home care services paid for by the government
could be provided in several different ways. Im
going to describe three possible ways that the
government could pay for home care services. Then
I will ask you the option you would prefer if you
needed these services. If you needed these
services, which of these three options would you
prefer? Source AARP/Harris Interactive Survey
of Persons 50 and Older with Disabilities,
September 2002
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Of majority who receive help, it is from an
UNPAID family member (spouse or child)
Figure 37
Q. Is the person who provides the help to this
person with a disability or health condition paid
or unpaid? Base Those who receive help. Q. Is
the person a family member or friend or some
other type of relationship? Base Those who
receive care. Q. What type of family member
provides you with this help? Base People who
receive care from a family member. Source
AARP/Harris Interactive Survey of Persons 50 and
Older with Disabilities, September
2002Disabilities, September 2002
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Most caregivers LIVE WITH person helped
Figure 38 Living Arrangements of Persons 50 and
Older Who Receive Help with Daily Activities
Q. Does this person live with you? Base People
who receive help on a regular basis. Source
AARP/Harris Interactive Survey of Persons 50 and
Older with Disabilities, September 2002
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Caregiving can have SERIOUS IMPACT on caregivers
current and future income
Figure 13 Changes Made by Caregivers 50 and
Older in Work Life to Accommodate Caregiving
Responsibilities
Question In Your Experience as Both a Worker and
a Caregiver, Did You Ever...? Source National
Alliance for Caregiving/AARP Family Caregiving
Survey, 1997, previously unpublished data of
caregivers 50 and older
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Reliance on informal care FAR GREATER than
on formal care
Figure 12 Percent of Persons 50 and Older in the
Community Receiving Long-Term Care, by Age and
Type of Care, 1994
Sources 1994 National Health Interview Survey,
Disability Supplement, Phase I, National Center
for Health Statistics 1994 National Long-Term
Care Survey AARP Public Policy Institute
Analysis of Data from W. Spector, J. Fleishman,
L. Pezzin, et al., The Characteristics of
Long-Term Care Users, Agency for Health care
Research and Quality Research Report, August 2000
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Estimated value of informal home care FAR
OUTWEIGHS value of paid home care
Figure 33 Total Value of Paid and Informal Home
Care
Source Public Policy Institute analysis based on
LaPlante M., Harrington, C., Kang, T.
Estimated Paid and Unpaid Hours of Personal
Assistance Services in Activities of Daily Living
Provided to Adults Living at Home, Health
Services Research, Vol. 37, No. II, April 2002
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Medicaid expenditures for Home and
Community-Based Care INCREASING
Figure 31 Percent of Medicaid Expenditures for
Long-Term Care, 1989-2001
Source AARP Public Policy Institute calculations
based on Medicaid Expenditures for Long-Term
Care Services 1989-2001 www.hcbs.org/data/medic
aid_lte2001.htm
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TRANSPORTATION is the MOST DESIREDcommunity
service
Table 24
Q. If there were one thing that could be changed
in your community to make it a better place for
you to live, what would it be? Source
AARP/Harris Interactive Survey of Persons 50 and
Older with Disabilities, September 2002
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FEW gave transportation or services high grades
Table 23
Q. For each item, please give your community a
grade from A to F where an A represents
excellent, B represents very good, C
represents satisfactory, D represents "below
average," and F represents terrible for
people with disabilities or health conditions
like yours. What grade would you give your
community? Source AARP/Harris Interactive Survey
of Persons 50 and Older with Disabilities,
September 2002
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Majority said better health insurancemost
important to improving quality of life
Figure 48
Q. For each item I list, do you think it would
cause a major improvement, a minor improvement,
or no improvement at all in your quality of
life? Source AARP/Harris Interactive Survey of
Persons 50 and Older with Disabilities, 2002
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Over 1 in 4 said they are POSTPONING HEALTH CARE
because they cannot afford it
Figure 42
Q. In the past 12 months, have you ever put off
seeking health care which you felt you needed
because you could not afford it, or not? Source
AARP/Harris Interactive Survey of Persons 50 and
Older with Disabilities, September 2002
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MORE people with disabilities reportingpostponin
g needed health careover time
Figure 41
Q. In the past 12 months, have you ever put off
seeking health care that you felt you needed
because you could not afford it, or not? Source
AARP/Harris Interactive Survey of Persons 50 and
Older with Disabilities, September 2002 National
Organization on Disability/Harris Surveys of
Americans with Disabilities, 1998 and 2000 Note
Responses to the above question for June 1998 and
June 2000 are from NOD/Harris Surveys of
Americans with Disabilities in those years. The
AARP/Harris survey in 2002 included the following
screening question Does a health problem,
disability, or handicap currently keep you from
participating fully in work, school, housework,
or other activities, or not? The prior NOD
surveys also included that question, permitting
comparison of responses by subsamples of persons
50 and older who met the same screening criteria
across the three years.
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GOALS AND OBJECTIVESin REFORM of LTSS
Strategy Policies for Reforming
Long-Term Services Supports

• AARPs GOAL
• Create an affordable,
  consumer and caregiver-focused system
  providing
  coverage for, and access to,
  high quality long-term services
  and supports for independent living

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GOALS AND OBJECTIVES
Strategy Policies for Reforming
Long-Term Services Supports

1. Promote --nationally and in the states-- reform
   of delivery and financing for long-term
   services supports

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GOALS AND OBJECTIVES
Strategy Policies for Reforming
Long-Term Services Supports

• REFOCUS reform debate on providing
• Long-term services, and supports
  for independent living
• . . . rather than on long-term care or
  Medicaid Reform

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GOALS AND OBJECTIVES
Strategy Policies for Reforming
Long-Term Services Supports

• Include ALL populations, people with
• developmental disabilities
• mental retardation
• physical disabilities
• . . . while giving priority to
  the needs of elders

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GOALS AND OBJECTIVES
Strategy Policies for Reforming
Long-Term Services Supports

• 4. Define long-term services support system
  as FOUR separate, but related, components

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FOUR COMPONENTS
LTSS
1
Strategy Policies for Reforming
Long-Term Services Supports
Caregivers
3
4
2
Long-term Home and Community- based Supportive
Services
Housing
Health Care

• . . . plus mechanisms to finance each
  component

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OBJECTIVES

• Maintain and expand coverage and access to
  services supports
• Strengthen financial protections for individuals
  and families
• Orient system to consumers and their caregivers
• Define and improve quality
• Achieve affordability for the individual and for
  society as a whole

Strategy Policies for Reforming
Long-Term Services Supports
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STRATEGY SEQUENCE
Strategy Policies for Reforming
Long-Term Services Supports
Medicaid Rebalancing
Federal Insurance
Delivery System Reform
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FIRST Revamp Medicaid

• Revamp Medicaid as one vehicle for both
  System financing ---- Structural
  reform
• See that proposed reforms
• Promote increased HCBS
• Cover additional services, populations
• Eligibility
• Move from categorical to
  financial means plus medical need
• Oppose restrictive changes to eligibility,
  including transfer of assets
• Oppose mandatory, risk-based managed care but
  recognize managed care can be vehicle for reform

S T E P S
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SECOND Delivery Reform

• Improve the DELIVERY SYSTEM through
• Support for family caregivers
• Respite services
• Financial help
• Single point-of-entry
• Navigation assistance
• Workforce development and quality
• Recruitment, retention, OJT
• Enhancing image of workers
• Promote workforce training by U.S. schools, esp.
  community colleges

S T E P S
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SECOND Delivery Reform

• Improve the DELIVERY SYSTEM through
• Consumer-directed programs for obtaining needed
  services
• Quality measures and incentives
• Regulations and standards

S T E P S
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SECOND Delivery Reform

• Support INNOVATIVE MODELS for
  long-term services and supports
• Endorse, help expand, fund effective existing,
  new, or demonstration models, and promising state
  models for
• Financing
• Care delivery
• Use states efforts as means for galvanizing a
  national FOCUS ON REFORM

S T E P S
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SECOND Delivery Reform

• Encourage PERSONAL PLANNING for, and
  family conversations about, long-term care
• Motivate consumers to demand MORE OPTIONS for
  long-term services funding
• PROMOTE PRODUCTS and SERVICES that help consumers
  with
• Decision-making
• Navigation
• . . . through the long-term services
  supports system

S T E P S
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THIRD System Reform

• Federal disability-based insurance system that
  protects ALL Americans
• Expanded chronic care
  coverage and management under all insurance
  programs
• Navigation help financial help
  for informal caregivers

S T E P S
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LONG-TERM CARE REFORMED

• Rebalanced Medicaid to EMPASIZE HOME COMMUNITY
  BASED CARE
• SINGLE POINT-OF-ENTRY and NAVIGATION HELP
• SUPPORTS for INFORMAL CAREGIVERS
• CHRONIC CARE MANAGEMENT under Medicare
• QUALITY IMPROVEMENT throughout
• CONSUMER-DRIVEN OPTIONS
• WORKFORCE DEVELOPMENT
• INSURANCE AGAINST DISABILITY for all

V I S I O N
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FINANCING LTSS

• 1.  Medicaid Rebalancing
• Older Americans Act
• State funding
•  2.  Delivery System Reforms
• Medicare with chronic care funding
• Tax credits for caregivers
• Home equity options
• Private insurance
• 3.  Federal Insurance
• Value Added Tax dedicated to health care
  and long-term care

S O U R C E S