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

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.

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

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

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

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+

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

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

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.

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

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

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

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

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

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

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

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/medicaid_lte2001.htm

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

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

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

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

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.

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

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

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”

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

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

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

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

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

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

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

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

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

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 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

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

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