1. LONG-TERM CARE REFORM Challenges & Opportunities
Insert Product Photograph Here
June 2007

2. 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.

3. Where are our 10 Million who Need LTCare?
Source: Kaiser, from CMS, National Health Accounts, 2005

4. What’s LTCare costing, and who pays?
$158.2 billion
Source: Kaiser, from CMS, National Health Accounts, 2005

5. AARP has conducted . . . the first national survey focusing on
50+ Americans with disabilities

6. 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 age
By severity
Overall 50
65+

7. 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

8. Most survey respondents’ needs and desires were FAIRLY MODEST
Source: AARP/Harris Interactive Survey of Persons 50 and Older with Disabilities, September 2002
Q. What did you want or need to do but could not do?
Table 13

9. 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.

10. 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

11. 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. I’m 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

12. 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

13. 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

14. Caregiving can have SERIOUS IMPACT on caregiver’s 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

15. 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

16. 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

17. Medicaid expenditures for Home and Community-Based Care INCREASING
Figure 31: Percent of Medicaid Expenditures for Long-Term Care,
Source: AARP Public Policy Institute calculations based on “Medicaid Expenditures for Long-Term Care Services: ”

18. TRANSPORTATION is the MOST DESIRED community 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

19. 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

20. Majority said “better health insurance”most 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

21. 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

22. MORE people with disabilities reporting “postponing needed health care”over 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.

23. GOALS AND OBJECTIVES in REFORM of LTSS
Strategy
&
Policies
for
Reforming
Long-Term
Services
Supports
AARP’s 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

24. GOALS AND OBJECTIVES
Strategy
&
Policies
for
Reforming
Long-Term
Services
Supports
Promote --nationally and in the states-- reform of delivery and financing for long-term services & supports

25. GOALS AND OBJECTIVES REFOCUS reform debate on providing:
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”

26. GOALS AND OBJECTIVES Include ALL populations, people with:
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

27. GOALS AND OBJECTIVES
Strategy
&
Policies
for
Reforming
Long-Term
Services
Supports
4. Define “long-term services & support system” as FOUR separate, but related, components:

28. Long-term Home and Community- based
FOUR COMPONENTS
LTSS 1
Strategy
&
Policies
for
Reforming
Long-Term
Services
Supports
Caregivers 4 3 2
Long-term Home and Community- based
Supportive Services
Housing
Health
Care
. . . plus mechanisms to finance each component

29. 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

30. STRATEGY SEQUENCE Strategy & Policies for Reforming Long-Term Medicaid
Services
Supports
Medicaid
Rebalancing
Federal Insurance
Delivery System
Reform

31. 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

32. 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

33. 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

34. 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

35. 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

36. S T E P 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

37. 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 O N

38. FINANCING LTSS S O U R C E 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