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Home: Home & Community-Based Services Information: Senate Special Committee on Aging Summary Report of Findings SENATE SPECIAL COMMITTEE ON AGING
LTC encompasses more than health care. It comprises a variety of services that an aged and/or disabled person requires to maintain quality of life - including housing, transportation, nutrition, and social support to help maintain independent living.
Especially in light of the Olmstead decision, alternatives to institutional care should continue to be expanded for all persons.
Consumer and their families should be involved in care decisions about LTC services.
Home care services should support but not necessarily replace family caregiving.
Increased access to respite services and training for family caregivers is needed to sustain their efforts and ensure that people receive care in the least restrictive setting possible.
People of all income levels should have access to LTC services.
Just as no "one size fits all" type of care exists for individual LTC needs, financing options must be similarly flexible.
Any LTC system should encompass a "universal approach" and support both disabled individuals under the age of 65 as well as older Americans who may or may not also have disabilities.
Report Section Summaries: The Senate report summarizes information from all the hearings into specific service categories - not by each hearing. The information that follows is taken directly from those categories. Occasionally, I have added information at the end of a section that I thought would be useful, such as in the section on assisted living. I have also changed the order of several sections. I have tried to use the language in the document when summarizing. The report includes much of the information upon which federal legislators will make decisions about LTC, although there are some conspicuous absences such as the role and use of the Older Americans Act programs in LTC. The full report, and other testimony, can be accessed at http://aging.senate.gov/events. Once in the site, click on Committee Report: Aging Committee Finding Summary. Long-term Care Defined As defined by the Congressional Research Service, LTC is "a wide range of supportive and health services for persons who have lost the capacity for self-care due to illness or frailty." The need for LTC services is generally defined by one's need for assistance in ADLs (activities of daily living) such as bathing, eating, dressing, toileting. The report notes that the current LTC system is a "patchwork system" in need of cohesive and comprehensive reform. Disability and Aging Almost 11 million people of all ages have a disability and require some form of assistance.
Nearly 5 million are severely disabled - needing assistance with 3 or more ADLs. 80% of severely disabled persons are over 65.
Only 1.8 million of the 11 million persons with a disability receive institutional care.
The probability of disability increases with age. 58% of those over 80 have a severe disability. Demographic changes suggest that the number of disabled elderly will increase by 1/3 to 1/2 by 2040.
A major factor in keeping someone in the community is the availability of family to provide care.
Current Financing Unsustainable Medicare and Medicaid were established in 1965 to cover primarily acute medical and health care for elderly and poor.
With the evolution of LTC and aging of population, Medicaid now is the single largest public payer of LTC services, paying 45% of the total LTC expenditures in FY00, while Medicare payed 14%, primarily for home health services.
There is a federal institutional bias in LTC. While funding for home and community based services (HCBS) and waiver services have increased, in FY00, 58.5% of total Medicaid spending was for nursing home care.
Medicaid costs account for 20% of state budgets, and is the single largest expense after education.
Medicaid is thought of as coverage for poor individuals, but many beneficiaries are considered "middle class" and have spent down income and assets to qualify and receive assistance with the high costs of LTC.
While public funding of LTC is substantial, 1/3 of all LTC expenses are payed out-of-pocket by individuals and families.
Without substantial reform, by 2030 Medicare, Medicaid, and Social Security will consume nearly 3/4s of total federal revenue.
There is a national momentum towards a more integrated community based LTC system fueled by personal preference for and cost effectiveness of HCBS, as well as the Olmstead decision that supports providing services in the most integrated setting.
Home and Community Based Services (HCBS) Studies show that the greatest preference of elderly and disabled persons is to stay in their home and community. Almost 80% of elderly who receive LTC services and 41% of severely disabled persons live in their home or a community-based setting.
Federal policy and funding does not reflect this preference. In FY00, 72.5% of Medicaid spending was for institutional care, and only 27.5% was for HCBS. While institutional care is an entitlement, most HCBS services are optional and expanding HCBS generally requires states to apply for waivers.
Cost effectiveness is a major argument in favor increasing HCBS, but a counter argument is that it is less expensive because housing, meals, and the costs (out-of-pocket and lost wages) to individuals and family caregivers aren't included in calculations.
Governors and others also argue that there could be savings from blending funding streams, in particular Medicare and Medicaid, to avoid duplication or delay of services - and provide more preventive and HCBS.
Medicaid Waivers Medicaid HCBS waiver program, created in 1981 by amending section 1915(c) of the Social Security Act, intended to correct the institutional bias. While it hasn't corrected the bias, it has changed the ratio and grown from a $1.2 billion program in 1990 to a $12.7 billion program in 2000.
All states except Arizona have at least one 1915c waiver. The number an type of services vary from state to state, but demand is uniformly high and generally exceeds the caps set by state to limit the services or slots.
One frequent criticism of waivers is that while they are the alternative to institutional services, they done include payment for supportive housing costs.
Olmstead Olmstead v L.C., 1999 Supreme Court ruling, upheld Title II of the Americans with Disabilities Act (ADA) that prohibits states from keeping people in institutions when they could be "reasonably accommodated" in less restrictive settings.
Outcomes of the decision include: creating alliances among aging and disabled communities, creating a "lifespan" approach to LTC rather than a disability or aging view, funding and implementation of Real Systems Change Grants to facilitate demonstrations and compliance with Olmstead, greater interest and demonstrations in HCBS services that include consumer direction, support for quality of life as an outcome measure.
State Initiatives to Expand HCBS States/governors see need to increase flexibility in Medicaid and system and provide critical "early intervention" for all elderly
13 states have MMIP projects (Medicare/Medicaid Integration Programs) that integrate Medicare acute and Medicaid LTC services through a managed care venue.
Initiatives to improve recruitment and retention of workforce.
Cash and Counseling and other types of consumer directed care and family caregiver programs which include the ability to hire family and friends, provide counseling on services management and other issues.
State and/or local funds used for early intervention/prevention programs.
State pharmacy assistance programs are offered by almost half of all states.
Partnerships with private insurance companies to create LTC insurance programs - generally 2 models, "dollar for dollar" and "total assets" - expansion of either is prohibited by federal law.
Single point of entry programs to create more effective access to services.
Increasing assisted living/housing for low/moderate income seniors such as the Coming Home Program.
Caregiving Family caregivers seen as cornerstone of LTC.
1 in 3 adults care for a family member or friend. 75% of caregivers are women. On average women provide 18 years of care for an elderly parent.
Caregiving exacts a heavy toll physically, psychologically, and financially. One study showed a worker who takes care of an older relative on average looses $659,139 in wages, pension benefits, and social security income.
Only 5% of elderly who need LTC rely exclusively on paid care. 65% of elderly rely exclusively on friends and family, while 30% use a combination of family and paid services.
Family caregiving is a significant resource to the economy - cost of informal LTC services estimated at $196 billion.
Support for family caregiving important. Respite care provides hourly or daily temporary care/support enabling the primary caregiver a break. This support can extend the time over which a person can continue to provider care to a relative.
Federal support through new National Family Caregiver Program, added in FY 2000 reauthorization of the Older Americans Act. Other supports include tax credits for caregivers and tax deductions for purchase of LTC insurance. Assisted Living (AL)
Assisted living is a relatively new residential option with currently 33,000 facilities.
Most (90%) private pay.
A majority of states provide some AL through Medicaid waivers, but this serves fewer than 60,000 Medicaid recipients.
Not federally regulated. States vary on defining and regulating AL. Self accreditation used by only small numbers of facilities.
Aging Committee called on AL providers and consumer groups to develop recommendations on ensuring quality in AL. Over 30 organizations and groups involved in this process - the Assisted Living Workgroup (ALW)- coordinated by AAHSA. (Actually there are more than 40 organizations participating in the AWL. And, the Senate only looked at formal new ALs - didn't include the thousands of bed and board/mom and pops - small homes which provide housing and support to elderly and have been around for many years).
Adult Day Services (ADCs) Viable, cost-effective service options that have become a practical and appealing part of LTC services that helps keep individuals at home and/or in the community.
Recent national study completed by Partners in Caregiving funded by Robert Wood Johnson Foundation (RWJF) provides information on types and growth.
3,493 ADCs serving persons age 18-109 with a variety of chronic conditions such as dementia, mental retardation/developmental disabilities, physical disabilities and chronic health conditions.
ADCs are social (37%), medical (21%) or combined (42%). Service range from meals and recreation to therapies and medical services.
The majority of ADCs are not for profit, operate under a larger parent organization, and are open at least 5 days per week.
The average charge is $56/day, and with 38% of revenues coming from public pay and 35% from out of pocket.
ADCs serve those in the community. The average length of participation is 2 years. The number one reason for discharge is placement in a residential setting, e.g. nursing home, AL.
The need for ADCs is evident by the growth - 26% of currently operating centers were opened within the last five years, and a needs analysis completed by the study group showed a need for more than 5,000 new centers. (Another fact not included is that the majority of new centers are combined medical/social and for profit.)
Long-Term Care Insurance 6 out of every 10 persons who reach age 65 will need some LTC services.
Cost of LTC create enormous expenses for public and private payers, and this will increase. Cost of nursing home care is @ $50,000/year and @ $20,000 for HCBS/year.
LTC insurance emerged in the 1980s to help individuals protect against the costs of LTC. Number of polices sold has grown slowly, from 815,000 in 1987 to over 7 million in 2000, covering @ 7% of the population.
Policy coverage increased to include HCBS and generally covers AL, home care service such as nurses, therapies, home health aides, and informal home care services such as non-licensed caregivers, adult day care, hospice and respite.
People more likely to purchase LTC insurance if it is offered by an employer.
In an effort to increase purchase of LTC insurance policies, Congress passed Long-Term Care Security Act of 2000 that provides coverage for federal employees, see as a model program.
Workforce Shortage Number of health care professionals and para-professionals is not keeping pace with increasing need driven by demographics.
Of all 125 medical schools, only 3 have geriatrics departments. While Medicare supports almost 100,000 residency/fellowship positions, @ 300 are in geriatric medicine.
Bureau of Labor Statistics estimates that personal and home care assistance will be the fourth fastest growing occupation by 2006. The number of jobs available is expected to increase by almost 75%, while that of nurse aides will grow by just more than 25%.
Factors such as rates of economic growth, purchaser ability, and people willing to become direct care staff will make it exceedingly difficult to meet the demand. Other issues that create challenges are the low wages and benefits for these positions.
Recruitment and retention efforts must include sufficient training and education to ensure that all staff are able to perform appropriate tasks. The workforce challenge is being addressed via legislative vehicles for grants to increase staffing levels and quality of care.
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