Susan Fox PhD PresidentCEO WIHD Director Center for Disability and Health Associate Professor of Health Policy and Management Background and Significance Age as an important sociological concept Riley 1987 ID: 704080
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Slide1
The Intersection of Aging and Disability: Why Should We Be Concerned?
Susan Fox, PhDPresident/CEO WIHDDirector, Center for Disability and HealthAssociate Professor of Health Policy and ManagementSlide2
Background and Significance
Age as an important sociological concept (Riley 1987)Interdependence of aging and social change, particularly salient with aging of baby boomersUnprecedented aging of the population:Baby boomers are largest cohort in history (Kingson 1996)Increased longevity of those with chronic, disabling conditions (Heller et al. 2010)
Many
boomers are facing their own aging as well as caring for aging
parentsSlide3
Aging of Baby Boomers Will More than Double the Number of Older Adults Age 65+ with Disabilities
0
2
4
6
8
10
12
14
16
1996-00
2000-04
2005-09
2010-14
2015-19
2020-24
2025-29
2030-34
2035-39
2040-44
2045-49
Number of
Older Adults
with Disabilities
(in millions)
2+ ADLs
1 ADL
IADL Only
Source
: The Lewin Group based on the Long Term Care Financing Model
. (2006)Slide4
LTC Conundrums
Funding for long term care services is inadequateLTC system maintains a historical institutional bias despite individual preference to remain home and policy focus on HCBSCurrent focus on home and community based care and changes in health care delivery put families at the center of the long term care systemInformal, family caregivers are the under-recognized cornerstone of the long-term care system providing 80
% of long-term care services
(
Thompson 2004)Slide5
So, How Did We Get Here?Slide6
Understanding our Past
19th CenturyExtended FamiliesPublic care for those who were indigentPoor housesShort life expectancy (48 for men; 51 for women) (Kinsella & Velkoff 2001)
Even shorter for persons with disabilities
Late 1800’s
Specialized institutions developed for children and persons with mental illness and those with disabilities
Poor houses or almshouses became “old age homes” (
Skocpol
1991;
Winzelberg
2003)Slide7
Early 20th Century
1935: Passage of Old Age Assistance and Social Security (Roosevelt)Private nursing homes developed to serve elderly who now had resources to pay for careLittle effort to regulate quality of care1947: Hill Burton
Act
Federal funds for health care facilities, including nursing homes
Nursing homes mirrored hospitals as opposed to previous model of “old age”
home
(
Winzelburg
2003)Slide8
1960’s: A Decade of Radical Change
Civil Rights Movement1963: JFK signed into law the Community Mental Health Act (Also known as the Mental Retardation and Community Mental Health Centers Construction Act)Provided funding for community-based mental health and developmental services agencies.Slide9
1960’s: Government Funding for Institutional Care
Medicaid and Medicare Established (1965)Medicare: funds medical services for those over 65 and younger people with disabilitiesMedicaid: elderly poor, children and adults with disabilitiesUnder Medicaid, nursing home services are an entitlement
Activists assured that Medicaid and Medicare were aligned with nursing home interests and home and community based services were limited.
The nursing home industry burgeoned
Older Americans Act Established: Funds community and social services for older adults and their caregivers (1965)Slide10
1970’s and 1980’s
1970’s: Families of individuals with IDD who lived in institutions became increasingly concerned about the conditions at state run institutionsFamilies in many states filed class action lawsuits1980’s: Problems with Long Term Care began to surfaceHigh Cost of institutional carePoor Quality of services
Impoverishment to qualify for Medicaid
1985: Home and Community Based Care Waiver Program established as an optional Medicaid service yet
i
nstitutional bias continued.Slide11
Federal Policy Context: Continued Shift to Home and Community Based Care
1990: Americans with Disabilities Act1999: L.C. vs. Olmstead 2001: Bush Administration’s New Freedom Initiative2001 – 2011: Real Choice Systems Change Grants 2003: Administration on Aging (AoA
), now part of the Administration on Community Living (ACL), launches ADRC efforts
2006: Medicare Changes: Part D and Preventative Services added
2006: Money Follows the Person
2006:
AoA
Community Living Act: Choices for Independence
2010: Patient Protection and Affordable Care Act (Health Care Reform)
2012: Balancing Incentive ProgramSlide12
THE INTERSECTION OF AGING AND DISABILITYSlide13
People
Aging with disability and aging into disabilityNewness of aging with lifelong disabilities; reluctance of older adults to view themselves as “disabled”Differences between currently older population and aging cohort of baby boomersIntellectual Developmental Disabilities and Dementia (esp. for persons with Downs Syndrome: 6x greater risk)(Janicki & Dalton, 2000)Aging caregivers of adults with disabilities and/or aging spouses/parentsSlide14
Systems
Aging into disability or with lifelong disabilities: Need to bridge aging and disability systemsSimilarities between systems: marginal/undervalued; underfunded; reliance on caregivers; workforce shortage for personal care; etc.Differences between systems: chronological
vs. functional;
person- centered
vs.
program-driven
;
different system priorities; large numbers of unidentified clients
;
non-affiliations
Lagging
public policy in aging and role of coalitions as
de facto
policySlide15
Historical Approaches to Planning: The Aging Services System
The “system” and its agents have traditionally determined what programs will be put in place, and then people are placed or fit into those programs.Programs have traditionally been developed to meet generalized area of needs of older adults, rather than meeting the needs of individuals.Funding mechanisms: Medicare, Medicaid, Older Americans Act (Administration on Aging), Social Security, Private Pay, Community and Faith Based Organizations. Little coordination of funding sources.Slide16
Person-Centered Approaches
Older adults become more individuated over time, thus, our approaches to assisting should be focused on the individual; not on programs.This is a relatively novel approach within aging services, despite social work focus on self determination
Current older adults have unique concerns when compared to younger cohorts
Older adults may be hesitant to accept assistance from “outsiders” or be viewed as “disabled”Slide17
Person-Centered Approaches to Care
17The individual drives decisions
Explore preferences
Who can help? Family? Friend?Slide18
Cogintive
Physical
Emotional
Social
Spiritual
Need to
look at the whole personSlide19
WHY DO YOU THINK THE INSTITUTIONAL BIAS IN LTC PERSISTS DESPITE ADVOCACY FOR PERSON-CENTERED HOME AND COMMUNITY BASED CARE?