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Segment 3
Folder Title:
Health Reform Technical Work Group on Long-Term Care - 1/19/93 [loose] [2]
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�Withdrawal/Redaction Sheet
Clinton Library
DOCUMENT NO.
AND TYPE
DATE
SUBJECT/TITLE
RESTRICTION
001. memo
Phone No. (Partial) (I page)
12/15/1992
P6/b(6)
002. fax
Phone No. (Partial) (1 page)
12/15/1992
P6/b(6)
003. briefing
paper
Phone No. (Partial) (1 page)
12/21/1992
P6/b(6)
COLLECTION:
Clinton Presidential Records
Health Care Task Force
Lynn Margherio
OA/Box Number:
4811
FOLDER TITLE:
Health Reform Technical Work Group on Long-Tenn Care - 1/19/93 [loose] [2]
2006-0885-F
im763
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�BALANCE BETWEEN MEDICARE AND MEDICAID INITIATIVES
Issue
Assuming a "moderate" amount of money t o be spent on
expanding long-term care services, what should be the balance
between changes i n means-tested programs and changes i n s o c i a l
insurance programs?
Options
1.
Medicaid Only, No Medicare
Increase personal needs allowance t o $100 per month, and
l e v e l of protected assets f o r i n d i v i d u a l s t o $30,000. Allow
i n d i v i d u a l w i t h incomes of up t o 150 percent of poverty t o be
e l i g i b l e f o r Medicaid home care. Mandate states cover broadbased home care program. No changes i n Medicare program.
Pros
o
Targets resources t o low-income population, most i n
need of care.
o
Builds on major e x i s t i n g financing source f o r long-term
care.
o
Addresses both i n s t i t u t i o n a l and n o n i n s t i t u t i o n a l
services.
o
Leaves large r o l e f o r p r i v a t e insurance.
Cons
o
o
Excludes nonpoor from coverage, i n c l u d i n g working
nonelderly.
o
W i l l be viewed as inadequate by advocacy groups.
o
States w i l l r e s i s t new mandates even i f mostly ( o r
t o t a l l y ) financed by federal government.
o
2.
Inconsistent w i t h campaign pledge t o expand Medicare.
Meciicaid lacks broad p o l i t i c a l support of Medicare.
Medicare Only, No Medicaid
Medicare coverage would be expanded t o cover the f i r s t 100
days of nursing home care and broad home care f o r the very
severely disabled. No changes would be made i n Medicaid.
�Pros
o
C o n s i s t e n t w i t h campaign promise t o expand
Medicare,
o
Provides u n i v e r s a l
o
Helps t o balance d e l i v e r y system by expanding home
care.
o
Concentrates new e x p e n d i t u r e s on those a t home and
n u r s i n g home p a t i e n t s most l i k e l y t o be d i s c h a r g e d
alive.
This group has g r e a t e s t need t o p r o t e c t income
and a s s e t s .
o
Leaves s i g n i f i c a n t r o l e f o r p r i v a t e l o n g - t e r m care
insurance.
o
Provides mechanism f o r c o o r d i n a t i n g acute and l o n g - t e r m
care needs.
coverage.
Cons
o
o
Provides some s e r v i c e s t o upper-income e l d e r l y .
o
Home care does n o t " f i t " w e l l w i t h e x i s t i n g Medicare
program. W i l l r e q u i r e major new a d m i n i s t r a t i v e e f f o r t .
o
Given l a c k o f data and u n c e r t a i n t y o f b e h a v i o r a l
response, s i g n i f i c a n t r i s k o f c o s t o v e r r u n s .
o
On home care s i d e , c o m p l i c a t e s p r i v a t e l o n g - t e r m care
insurance.
o
3.
Does l i t t l e t o p r o t e c t n u r s i n g home p a t i e n t s from
c a t a s t r o p h i c costs o f long stays.
Requires s u b s t a n t i a l new revenue sources.
Expand Medicare home care aned Medicaid nursing home c a r e .
Medicare would be expanded t o p r o v i d e broad home care f o r
the e x t r e m e l y d i s a b l e d . Medicaid f i n a n c i a l e l i g i b i l i t y r u l e s
would be l i b e r a l i z e d f o r n u r s i n g home p a t i e n t s .
Pros
o
Can be c l a i m e d t o be c o n s i s t e n t w i t h campaign promises.
o
Addresses b o t h i n s t i t u t i o n a l b i a s and c a t a s t r o p h i c
c o s t s o f n u r s i n g home c a r e .
o
Retains p o t e n t i a l r o l e f o r p r i v a t e insurance.
�Cons
o
o
Advocacy groups may view i n s t i t u t i o n a l b e n e f i t as
inadequate.
o
Because o f u n c e r t a i n t y , c o s t s may be u n d e r e s t i m a t e d .
o
Home care b e n e f i t w i l l r e q u i r e major new i n f r a s t r u c t i v e
development.
o
4.
Creates s t r o n g i n c e n t i v e s t o c o s t s h i f t between n u r s i n g
home and home c a r e .
Requires s u b s t a n t i a l new revenue source.
Expand Medicare home c a r e o n l y
Medicare would be expanded t o cover broad-based home care
s e r v i c e s f o r t h e v e r y s e v e r e l y d i s a b l e d . No changes would be
made t o t h e Medicare n u r s i n g home b e n e f i t o r t o M e d i c a i d .
Pros
o
C o n s i s t e n t w i t h campaign pledge t o expand Medicare,
o
S t r o n g l y addresses i n s t i t u t i o n a l
o
P r o v i d e s u n i v e r s a l coverage.
bias,
Cons
o
Creates s t r o n g i n c e n t i v e s t o s h i f t everyone t o home
c a r e , even those f o r whom i t i s i n a p p r o p r i a t e .
o
Does n o t h i n g about c a t a s t r o p h i c c o s t s i n n u r s i n g homes.
o
Does n o t " f i t " w e l l w i t h e x i s t i n g Medicare.
s u b s t a n t i a l a d m i n i s t r a t i v e development.
o
S i g n i f i c a n t r i s k that expenditures w i l l
estimates.
o
Requires s u b s t a n t i a l new revenue source.
Prepared by: Joshua M. Wiener, The Brookings
(202)797-6266, January 5, 1993.
Requires
exceed
Institution,
�OPTIONS FOR EXPANDING HOME CARE
Issue
The l o n g - t e r m care f i n a n c i n g and d e l i v e r y system i s s t r o n g l y
b i a s e d toward n u r s i n g home r a t h e r t h a n home c a r e . I n 1990
a p p r o x i m a t e l y 7 6 p e r c e n t o f p u b l i c l o n g - t e r m care spending was
f o r n u r s i n g home r a t h e r than home c a r e . P u b l i c o p i n i o n p o l l s
s t r o n g l y s u p p o r t expansion o f home c a r e .
Options
1.
I n c r e a s e and t a r g e t f o r S o c i a l S e r v i c e s Block Grant.
Pros
o
T a r g e t e d t o r e l a t i v e l y low income p o p u l a t i o n .
o
Would h e l p b u i l d home care i n f r a s t r u c t u r e .
o
As an a p p r o p r i a t e d program,
getting out of control.
o
Does n o t f o l l o w medical model.
l i t t l e r i s k of expenditures
Cons
o
o
Excludes nonpoor w i t h home care needs.
o
H i s t o r y o f a p p r o p r i a t e d programs has been t h a t t h e y
don't keep up w i t h i n f l a t i o n o r need.
o
2.
I n c o n s i s t e n t w i t h campaign pledge t o expand Medicare.
Even w i t h maintenance o f e f f o r t r e q u i r e m e n t , some
s t a t e s w i l l s u b s t i t u t e new funds f o r e x i s t i n g f u n d i n g .
Refonn M e d i c a i d ; A l l o w o r r e q u i r e s t a t e s t o p r o v i d e broadbased home c a r e s e r v i c e s ( b u t g i v e s t a t e s c o s t c o n t r o l
powers o f c u r r e n t w a i v e r program).
Pros
o
Targets low income p o p u l a t i o n .
o
B u i l d s an e x i s t i n g w a i v e r
o
Encourages s t a t e
program.
innovation.
�Cons
o
o
Excludes nonpoor i n need o f home c a r e .
o
Medicaid l a c k s p o l i t i c a l support o f Medicare.
o
I f s t a t e o p t i o n , n o t much l i k e l y t o happen over next
few years because o f s t a t e f i s c a l problems.
o
I f mandate, s t a t e s w i l l complain about unreasonable
f e d e r a l requirements w i t h o u t money t o pay f o r them.
o
3.
I n c o n s i s t e n t w i t h campaign pledge t o expand Medicare.
Some r i s k t h a t s t a t e w i l l r e f i n a n c e e x i s t i n g home care
programs.
S l i g h t adjustments t o Medicare home h e a l t h b e n e f i t , w i t h o u t
major p h i l o s o p h i c a l changes. (e.g> a l l o w more u n s k i l l e d
care f o r people a l r e a d y meeting s k i l l e d r e q u i r e m e n t , r e l a x
" i n t e r m i t t e n t " r e q u i r e m e n t t o a l l o w more d a i l y c a r e ,
l i b e r a l i z e "homebound" requirement t o a l l o w pople t o leave
home more o f t e n . )
Pros
o
Makes Medicare home h e a l t h b e n e f i t more u s e f u l t o
chronically disabled.
o
Provides n e a r - u n i v e r s a l coverage.
o
C o n s i s t e n t w i t h campaign pledge t o expand
o
R e l a t i v e l y low c o s t .
Medicare,
Cons
o
o
Because impact i s h i g h l y u n c e r t a i n , h i g h r i s k o f b e i n g
too r e s t r i c t i v e o r t o o generous.
o
4.
Sure t o be p e r c e i v e d as inadequate by e l d e r l y and
d i s a b i l i t y advocacy groups.
B u i l d s on a g e n c y - d i r e c t e d model t h a t n o n e l d e r l y
d i s a b i l i t y group oppose.
Expand Medicare coverage f o r broad-based home c a r e , but
l i m i t e l i g i b l e population t o very s e v e r e l y d i s a b l e d .
�Pros
o
Provides n e a r - u n i v e r s a l coverage,
o
C o n s i s t e n t w i t h campaign pledge.
o
Provides a t y p e o f home-care b e n e f i t l i k e l y t o be o f
use t o c h r o n i c a l l y d i s a b l e d .
o
A l t h o u g h i m p r o v i n g , good home care coverage under
p r i v a t e l o n g - t e r m care i n s u r a n c e i s n o t common.
Cons
o
Cost e s t i m a t e s a r e v e r y u n c e r t a i n . There i s a nont r i v i a l r i s k t h a t c o s t e s t i m a t e s w i l l be t o o low.
o
Does n o t f i t e a s i l y i n t o e x i s t i n g Medicare
o
Unless s t a t e s share i n c o s t s , c o u l d become a f e d e r a l
funds m a x i m i z a t i o n p r o j e c t .
o
To f i t a modest budget t a r g e t , s e r v i c e s w i l l have t o be
l i m i t e d t o very severely disabled population, leaving
many i n need w i t h o u t s e r v i c e s .
program.
Prepared by: Joshua M. Wiener, The Brookings I n s t i t u t i o n , (202)
797-6266, January 5, 1993.
�SHOULD THE HIPC INCLUDE PRIVATE LONG-TERM CARE INSURANCE?
Issue
HIPCs have been discussed e n t i r e l y f o r acute care but c o u l d
a l s o i n c l u d e l o n g - t e r m care s e r v i c e s .
Pros
Could n e g o t i a t e "good d e a l s " from i n s u r e r s , upgrading
q u a l i t y of products.
Could make "group" p r i v a t e l o n g - t e r m care i n s u r a n c e
a v a i l a b l e t o l a r g e numbers o f employees, e s p e c i a l l y i n
s m a l l companies.
Would p r o v i d e a " s i g n a l " t h a t government t h o u g h t
p r i v a t e l o n g - t e r m care insurance was a u s e f u l p r o d u c t .
Cons
o
Long-term care insurance i s o v e r w h e l m i n g l y purchased by
e l d e r l y , not by t h e n o n e l d e r l y . Involvement o f e l d e r l y
w i t h HIPCs f o r Medicare a l t e r n a t i v e s o r Medigap
insurance unclear.
o
C o n s i d e r a b l e e d u c a t i o n necessary t o complete a s a l e .
C u r r e n t p o l i c i e s overwhelmingly s o l d on a one-on-one
b a s i s over t h e k i t c h e n t a b l e . Mass m a r k e t i n g approach
by HIPC may not work w e l l .
o
Most c u r r e n t employer-sponsored p r i v a t e l o n g - t e r m care
i n s u r a n c e i s a "bad buy" because o f poor i n f l a t i o n
protection.
o
U n t i l u l t i m a t e d i r e c t i o n o f A d m i n i s t r a t i o n long-term
care p o l i c y i s s e t t l e d , may be i n a p p r o p r i a t e t o send a
" s i g n a l " e n d o r s i n g p r i v a t e l o n g - t e r m care i n s u r a n c e .
o
I n i t i a l l y , HIPCs have enough t o do w i t h o u t g e t t i n g
s i d e t r a c k e d on l o n g - t e r m care ( o r Medigap) i n s u r a n c e .
I f d e s i r e d , t h e y c o u l d get i n v o l v e d l a t e r on.
Prepared by: Joshua M. Wiener, The Brookings
979-6266, January 5, 1993
I n s t i t u t i o n , (202)
�December 16, 1992
MEMORANDUM
TO:
Marilyn Moon
Korbin Uu
FROM:
Dave Kennell
Lisa Alecxih
SUBJECT:
Estimated Additional Public Expenditures for Alternative LTC Proposals
The attached table provides estimates ol the additional public expenditures associated
with several alternative long term caro reform proposals. Additional public expenditures
represent the expected increase (or decrease) in public spending over current law. The
estimates ol additional public spending account for any decrease in current law spending as
a result of a proposal (e.g., some persons currently covered by Medicaid home and
community-based services that would receive services under a proposal to provide such
services to persons with a specified level of disability). All estimates are in 1994 dollars and
are based on the assumption that the proposal is fully phased-in in 1994.
Below we provide a brief description of the key assumptions used in making these
estimates.
$100 Personal Needs Allowance - Under this proposal the minimum monthly
amount allowed for Medicaid nursing facility residents would be raised from
$30 to $100. In estimating tho cost, we did Q2J include Medicaid residents in
ICF/MRs.
Medicaid Personal Caro Expansions -- Under this proposal, the Medicaid home
and community-based waiver program would be extended to persons meeting
a specified disability criteria and means test. We estimated two variations on
this proposal: 1) one which would cover persons with three or more
impairments in activities of daily living (ADLs); and 2) one which would cover
persons with two or more ADLs. For both variations, the means-tested
D E C - 1 7 - Q ? T H I I
i q ; ? p
•7taT'>ioe:-?c*i
�-2eligibillty was assumed to require participants to have income less than 100
percent of the poverty and countable financial assets less than $5,000.
Medicare SNF Reforms - Under this proposal, small changes to the Medicare
skilled nursing facility benefit would be made. The current benefit covers SNF
care following at least a three day hospital stay. For SNF caro, a beneficiary
has no copayment requirement for tho first 20 days and a daily copayment for
days 21 to 100 based on one-eighth of the Medicare Part A hospital deductible
($91 per day in 1994). We estimated the additional public spending for two
changes: 1) changing the copayment to a straight 20 percent for all covered
days; and 2) changing the copayment to 20 percent and increasing the
maximum covered days to 150.
Medicare Respite Benefit -- We based our estimate of this proposal on
providing caregivers of Medicare beneficiaries who have three or more ADLs a
respite benefit similar to the one under the 1966 Medicare Catastrophic
Coverage Act. The benefit would provide up to 80 hours of home and
community-based services per year and require a 20 percent copayment from
the beneficiary. We assumed that two-thirds of eligible persons would
participate.
Medicare Home Health Reforms - The current Medicare home health benefit
provides skilled services and does not require any copayments of Medicare
beneficiaries. It also requires that the home health visits be part-time and
intermittent. We estimated the additional public spending for requiring
beneficiaries to pay 20 percent cost-sharing We did not assume changes in
the types of covered services. Another possible alternative would require
beneficiaries to pay 20 percent cost-sharing and relax the intermittent and parttime crlleria. We were unable to estimate the additional public spending for
this alternative within this timeframe.
1
2
Home health visits meet these criteria if skilled nursing and home health aide services
combined: 1) are less than 29 hours per week provided on a less than daily basis; 2)
are less than 35 hours per week provided on a less than daily basis, subject to review
by fiscal intermediaries on a case-by-case basis, based on documentation justifying
the need for and reasonableness of such additional care; or 3) are full-time (i.e., 8
hou s per day) which are provided and needed seven days per week for temporary,
but not indefinite, periods of time of up to 21 days with allowances for extensions in
exceptional circumstances where the need for caro in excess of 21 days is finite and
predictable.
r
We note that our estimate of the savings associated with requiring a 20 percent
copayment for Medicare home health services is lower than the Congressional Budget
Office's estimate
DEC-17-92THU
1 9:29
7(?T?ijps?Ri
DP?
�-3-
"ComprQhensive" Long Term Care Reform -- Under this proposal, we assumed
that: 1) disabled persons would be eligible for up to six months of nursing
facility care with a 20 percent copayment and low-income protections based on
a sliding scale; 2) the means-test for Medicaid eligibility for nursing facility care
would be relaxed for countable assets ($30,000 for singles and $60,000 for
married persons) and Medicaid residents would be permitted to retain $100 a
month for personal needs; 3) home and community-based care sen/ices would
be available to persons who require at least stand-by assistance with three or
more ADLs with a 20 percent copayment and low-income protections based on
a sliding scale. For the nursing facility care we estimated the increased public
spending with and without improvements in Medicaid reimbursement levels.
The improvements to Medicaid reimbursement levels were assumed to be a 25
percent increase. This would make the Medicaid reimbursement rate
approximately 90 percent of the current average private pay reimbursement
rate. We also assumed that the current average private pay rate would decline
to the new public payment rate under the alternative with improved Medicaid
rates. The overall effect on the average annual cost of nursing home care
would be an approximately 9 percent increase.
Please call if you have any questions.
DEC-17-92
THU
19:30
�-A-
1
ADDITIONAL PUBUC SPENDING FOR ALTERNATIVE
LONG TERM CARE REFORM PROPOSALS, 1994
(in billions of 1994 dollars)
Elderly
Proposal
Non.Elderly
Total
$100 Personal Needs Allowance
$1.7
$0.2
$1.9
Medicaid Personal Care
3+ ADLS
2+ ADLs
$1.7
$24
$0.8
$1.2
$2.5
$3.6
Medicare SNF
20% copay
20% copay and 150 days
$0.3
$2.1
Medicare Respite
$2.6
Medicare Home Health
20% copay
20% copay and relaxed definition
of intermittent
•$1.2
NA
Comprehensive
Nursing Facility Care
With higher reimbursement
Without higher reimbursement
Home and Community-Based Care
$1.0
$0.9
$4.0
$21.4
$18.5
$16.5
$22,4
$19.4
$20.5
1
Additional public expenditures represent the expected increase (or decrease) in
public spending over current law.
2
See attached m m for a description of each proposal.
e o
1 Q • 7O
"7 |5| ?
1 ©l
�WHICH DIRECTION FOR U.S. LONG TERM CARE?
INDEPENDENT LIVING OR INSTITUTIONALIZATION?
The United States currently spends more than 80% of its long term care dollars on institutional
care (Levit, et al.„ 1991). This figure is totally inconsistent with the desire of older people to
remain as independent as possible even when they suffer from chronic health problems and
disabilities. This skewed expenditure ofresourceson mining homes is also at odds with the
desire of younger disabled persons to live independently and maintain control over their own
lives and care.
Any reform of the U.S. long term care system must provide incentives to develop home and
community based care. 70% of elders with disabilities are now cared for exclusively by informal
caregivers (Liu, et al., 1985). Our goal should be to support and assist these caregivers, not to
replace them. Any system of community based care must include provisions for a full continuum
of care. Needed services include personal care services to assist with normal activities required
for independent living, optional assistance in coordinating care (sometimes called case
management) for iliose who would like it or have cognitive impairments, primary medical care,
adult day care to allow forrespiteand delivery of keyrehabilitativeservices, nursing services,
therapy services, home delivered meals, transportation services, respite care, dementia care,
community mental health services, and otherrelatedservices. Chronic care services must be
coordinated with primary and acute medical care since most disabled elders also have complex
medical problems interacting with their functional disabilities.
Eligibility: A community-based long term care program should provide services to everyone
regardless of age. Basic eligibility criteria should insure that all who need care willreceiveit.
Such criteria might include cognitive impairment, the need for supervision, and some measure
of need for assistance with functional activities. The emphasis should be on preventing those
with disabilities from needing more costly acute medical services or institutional long term care.
Cost Controls: A budget ceiling should be established for home and community care
expenditures. Because inadequate services are now provided, expenditures should be expected
to increase from current levels. Canadian provinces with universal long term care coverage have
shown that they can effectively contain home support service utilization, as long as they
implementtightov erall budgets for expenditures and hours of service" (Miller, 1993). Existing
estimates suggest that, under a universal long term care program, the cost of home and
community care wouldrise50% to 100% over current levels, or approximately $10 to $20 billion
nationwide (Pepper Commission, 1990; Rivlin and Wiener, 1988, Harrington, et al., 1992).
Because some home and community care services are desirable even for healthy people,
utilization controls would have to be established to help assure that eligibility criteria are met and
that authorized service levels are appropriate. Such utilization control could be established in
capitated at-risk delivery organizations or through locally governed health units. Individuals
wishing to manage their own care could be assigned a fixed dollar benefit level and purchase
services of their choice within that limit Budget ceilings could be set at the national, state, and
local levels, backed by utilization ceiling targets for specific types of services.
�Expected Savings: Research on conununity based long term care demonstrations does not indicate
that providing horne and community care services saves money in the short run (Kemper, et al.,
1987; Weissert, et al., 1988), although beneficiary and caregiver satisfaction generally increased.
For the most part, however, these demonstrations have not provided the full range of medical and
social services needed. They also generally have not investigated the potential cost savings in
terms ofreducedhospital utilization, focusing instead primarily on nursing home utilization. Two
innovative demonstration projects, the Social Health Maintenance Organizations (SHMOs) (Leutz,
et al.,1985) and the On Lok Program of All-inclusive Care for the Elderly (PACE) (Zawadski
and Eng, 1988), v/hich provided medical and chronic care benefits on a capitated at-risk basis,
did show promisingresultsin limiting acute care hospital costs for severely disabled elders and
allowing substitution of home and community care services. Experiences in Canada also show
promise for limiting the growth of nursing home beds when adequate community level services
are provided (Kane and Kane, 1985), and thus saving institutional costs in the long run (Miller,
1993). There is no conclusive evidence from Canada that you can save money by shifting from
institutional to noninstitutional services-a lot depends on what happens to home support service
levels and worker wage levels.
Delivery Systems: Innovative delivery systems are needed which offer the disabled the full range
of medical and social services necessary toremainindependent The current system is
fragmented and difficult to access. Disabled elders need additional coordinated systems like the
SHMO and On Lok programs where all basic services are provided through one entity and a
single financing package. Because home and community care delivery systems continue to be
underdeveloped when compared to nursing homes, it will be important to develop other new
models which provide one-stop access to coordinated services.
Quality Assurance:: Uniform quality standards need to be developed for long term care providers.
Increased involvement of users and family members in developing appropriate plans of care, as
well as consumer involvement in governing bodies will help assure appropriate services. The
Independent Living Centers (ILCs) developed by the younger disabled movement are promising
models of consumer involvement and empowerment in long term care that should be emulated
where appropriate. Younger and older disabled, alike, may be able to serve as their own case
managers, if certain cost targets are established within which they can make independent care
purchasing decisions.
In addition to emphasizing the development of home and community care for the disabled, we
suppon building a social insurance model, e.g. Medicare Part C, which will provide universal
access to needed long term care for all people based on need andregardlessof age. The burden
of financing long term care is manageable if spread across the entire population (Harrington, et
al., 1992) with appropriate contributions made by users forresidentialservices, and by the more
affluent through increased inheritance taxes. A long term care system, however financed, must
begin to address the clear preference of the disabled toremainat home. Adequate home and
community care will also, in the long run, allow us to limit expensive growth in institutional care
while developing humane alternatives.
�REFERENCES
Hanington, C , Cassel, C , Estes, C , Woolhandler, S., Himmelstein, D., and Working Group on
Long-term Care Program Design, Physicians for a National Health Program. 1992. "A National
Long-term Care Ftogram for the United States, A Caring Vision," Journal of the American
Medical Association. 266(21):3023-29.
Kane, R. and R. Rine. 1985. A Will and a Wav: What the United States Can Learn from Canada
about Caring for tlie Disabled Elderly. New York: Columbia University Press.
Kemper, P., Applebaum, R., and M. Hairigan. 1987. "Community Care Demonstrations: What
Have We Learned?," Health Care Financing Review. 8(4):87-100.
Leutz, W., Greenberg, J., Abrahams, R., Prottas, J., Diamond, L. and L. Greunberg. 1985.
Changing Health care for an Aging Society: Planning for the Social Health Maintenance
Organization. Lexington, MA: Lexington Books.
Levit, K., Lazenby, H., Cowan, C. and S. Letsch. 1991. "National Health Expenditures, 1990,"
Health Care Financing Review. 13(l):29-54.
Liu, K., Manton, K., and B. Liu. 1985. "Home Care Expenses for the Disabled Elderly," Health
Care Financing Review. 7(2):51-58.
Miller, Robert H., "Containing Use and Expenditure in Publicly Insured Long Term Care
Programs." Beingrevisedfor the Health Care Financing Review. 1993.
Pepper Commission, U.S. Bipartisan Commission on Comprehensive Health Caflall 9§fl Ate tion.
Washington, DC: U.S. Government Printing Office.
Rivlin, A. and J. Wiener. 1988. Caring for the Disabled Elderly: Who Will Pav? Washington,
DC: Brookings.
Weissert, W., Cready, C. and J. Pawelak. 1988. "The Past and Future of Home- and Communitybased Long-Term Care," The Milbank Quarterly. 66(2):309-88.
Zawadski, R. and C. Eng. 1988. "Case Management in Capitated Long-Term Care," HealthCare
Financing Review. 1988 Annual Supplement:75-81.
�Carroll L. Estes, PkD.
Professor, Dept. of Social & Behavioral Sciences
Director, Institute far Health & Aging
University of California, San Francisco
Box 0612, Room N631Y
San Francisco, CA 94143-0612
Phone no. 415-476-3236
Fax no. 415-476-1253
�Caring for the Uninsured and Underinsured
A National Long-term Care Program for
the United States
A Caring Vision
Charlene Harrington ^N. Pi^D: Chrotme Cassel. MD: Carroll L Estes. PhD:
S:e!fie Woolhandler MD. MPH: David J. Hm-.rr-.eisiem. MD:
and ;he Working Group on Long-term Care P'cgram Design. Physicians 'or a National Health Program
l
The financing and delivery of long-term care (LTC) need substantial reform.
Many cannot afford essential services; age restrictions often arbitrarily limit access for the nonelderly, although more than a third of those needing care are
under 65 years old; Medicaid, the principal third-party payer for LTC, is biased
toward nursing home care and discourages independent living; informal care
provided by relatives and friends, the only assistance used by 70% of those
needing LTC, is neither supported nor encouraged; and insurance coverage often excludes critically important services that fall outside narrow definitions of
medically necessary care. We describe an LTC program designed as an integral component of the national health program advanced by Physicians for a
National Health Program. Everyone would be covered for all medically and socially necessary services under a single public plan, federally mandated and
funded but administered locally. An LTC payment board in each state would
contract directly with providers through a network of local public agencies responsible for eligibility determination and care coordination. Nursing homes,
home care agencies, and other institutional providers would be paid a global
budget to cover all operating costs and would not bill on a per-patient basis. Alternatively, integrated provider organizations could receive a capitation fee to
cover a broad range of LTC and acute care services. Individual practitioners
could continue to be paid on a fee-for-service basis or could receive salaries
from institutional providers. Support for innovation, training of LTC personnel,
and monitoring of the quality of care would be greatly augmented. For-profit
providers would be compensated for past investments and phased out. Our
program would add between Si 8 billion and $23.5 billion annually to current
spending on LTC. Polls indicate that a majority of Americans want such a program and are willing to pay earmarked taxes to support it.
(JAM A. 1991-.266:3023-3029)
AMERICAN medicine often cures but
too rarely cares. Technical sophistication
in therapy for acute illnesses coe:dsts with
neglect for many of the disabled. New
hospitals that lie one-third empty house
thousands of chronic-care patients because
even the shabbiest nursing horms remain
constantly full. If the fabric of our acute
care is marred by the stain of the uninsured and underinsured, the cloth of our
long-term care (LTC) is a threadbare and
tattered remnant.
1
For millions with disabilities, the assistance that would enable independent
living is unobtainable. Nursing homes
offered as alternatives to the fortunate
few with Medicaid or savings are often
little more than warehouses. In the
home, relatives and friends labor unaided, uncompensated and without respite. Geriatric training is woefully underfunded and carries little prestige.
Hence, too few physicians are well
equipped to addressremediablemedical problems that contribute to disability, while many are called on to assume responsibility for care that has
more to do with personal maintenance
and hygiene than with more familiar
medical terrain; even when they know
2
14
f
F om tne fVorning GfOuD on Long-term Ciire Program
CeS'gn Physicians for a National Heaitn Prog-am.
Bepn"! 'eauesis to Pnysiaans tor a National Health
Prcgram Tne Camor.dge HosD'tauHarvaro Meflical
Scnooi t - W C a m b n a g e S t Camoriage M A 0 2 i 3 9 l D r
Himmeisteini
JAMA. December 4 1991 -Vol 266 No. 21
what should be done, the needed resources are often unavailable. The experts in providing care—nurses, homemakers, social workers, and the likeare locked in a hierarchy inappropriate
for caring.
With the aging of the population and
improved survival of disabled people ut'
all ages, the need for a cogent LTC policy will become even more pressing. Vet
policymakers have neglected LTC. for a
number ofreasons.(1) They have been
unwilling to accept LTC as a federal
responsibility in an era of cost containment. (2) Meeting routine living needs
is a central feature of LTC, with biomedical issues often secondary. Hence,
logic dictates that the system emphasize social services, notjust medical ones,
with social service and nursing personnel rather than physicians often coordinating care—a model that some physicians and policymakers may find
threatening. And, (3) LTC needs are
largely invisible to policymakers because
the majority of services for disabled people—of any age—are provided by "informal" (unpaid) care givers, mainly female family members, neighbors, or
friends.
Long-term care services are those
health, social, housing, transportation,
and other supportive services needed
by persons with physical, mental, or cognitive limitations sufficient to compromise independent living. The United
States has a complicated and overlapping array offinancingand service programs for LTC. Financing for LTC is
largely independent offinancingfor
acute care and varies depending on
whether the need is intermittent or continuous, short or long term, posthospital or unrelated to hospitalization." Private insurance companies have made
only tentative efforts to market LTC
insurance and currently insure less than
1% of Americans. Insurance for LTC is
unaffordable to most who need it and
5
,
National Long-term Care—Harrington et al 3023
Rtprmtao trom JAVA* Th* Journal ol ttm Amtnctfi U t d l e * AMtecimten
D t c t m D * 4. m i . V o k m 280
Copyright 1991. Amortctn MtcNca/ Attocurton
�cani Act. and Title XX Social Service*.-''
Other public programsfinanceLTC for
the developmentally disabled, the mentally disabled, substance abusers, and
crippled children. State disability insurance programs alsofinancesome LTC.
This multiplicity of programs leaves
enormous gaps in both access and coverage, confuses consumers attempting
to gain access to the system, and drives
up administrative costs. Furthermore,
the system is grossly out of balance,
biased toward acute and institutional
care and away from community-based
health and social services. In contrast,
the proposed LTC program would be
comprehensive, administratively spare,
and "user friendly."
Comprehensive coverage permits use
of the most appropriate services and
may prevent unnecessary hospitalization or institutional placement. Since
most individuals needing LTC prefer to
remain at home/ services should promote independent living and support informal care givers, using nursing homes
as the last resort rather thin as the
primary approach to LTC. Services must
be culturally appropriate for sjiecial population groups includingethnic. cultural,
and religious minorities; the oldest old;
individuals who are mentally impaired
or developmentally disabled; children;
and young adults.
Each institutional provider, eg, community agency, nursing home, home care
agency, or social service organization,
would negotiate a global operating budget with the local LTC agency. The budget would be based on past expenditures,financialand clinical performance,
utilization, and projected changes in services, wages, and other relied factors.
Alternatively, institutional providers
could contract to provide comprehensive LTC services (or integrated LTC
and acute care services) on a capitated
basis. No part of the operating budget
or capitation fee could be used for expansion, profit, marketing, or major capital purchases or leases. Capital expenditures for new, expanded, or updated
LTC facilities and programs would be
allocated based on explicit health planning goals separately from operating
budgets by the state LTC agency. Forprofit providers would be paid a fixed
return on existing equity, and new forprofit investment would be proscribed.
As Physicians for a National Health Program has previously proposed, physicians could be paid on a fee-for-service
basis, or receive salariesfrominstitutional providers. Physicians and other
providers would be prohibitedfromreferring patients to facilities or services
in which they held a proprietary interest. Providers participating in the public program would be required to accept
the public payments as payment in full
and would not be allowed to charge patients directly for any covered service.
Federal and state budget allocations for
LTC services would be separate from
those for acute care, as in Canada.
services. Not all those needing LTC require case management.Case managers and care coordinators would work
with the client, family, and other care
givers to assess adequacy and appropriateness of services, promote efficiency, and respond to changing needs.
Progressive decline in function characterizes many chronic illnesses, while full
recovery is possible in others. Thus,
change in need is a nearly universal aspect of LTC and mandates frequent reevaluation and flexibility. In all cases,
programs should encourage independence and minimize professional intrusion into daily life.
A universal need-based entitlement
to LTC would replace the current irrational patchwork of public and private
programs, each with its own eligibility
criteria, by age, cause of disability, and
income. All income groups would be covered without means testing, which is
cumbersome and costly to administer,
may increase costs in the long run by
causing people to postpone needed care,
creates a stigma against recipients, and
narrows the base of political support for
the program. There are scant data on
how to set simple eligibility standards
that ensure coverage for all in need,
while excluding those for whom LTC
services are a luxury rather than a necessity. We have chosen an inclusive
general criterion (one ADL or IADL)
ADMINISTRATIVE STRUCTURE AND
and have leftfinetuning to local agenELIGIBILITY FOR CARE
cies able to individualize decisions.
With a federal mandate, each state
In all, approximately 3.9% of the
would set up an LTC system with a
population (9.3 million people in 1985)
state LTC Planning and Payment Board
would be eligible for covered LTC serand a network of local public LTC agenvices. An estimated 3.6% (7.6 million
cies. These local agencies would employ
Coverage would extend to anyone, re- persons) of the total noninstitutionalspecialized panels of social workers,
gardless of age or income, needing assis- ized population need assistance with
nurses, therapists, and physicians retance with one or more activity of daily ADLs or LADLs," including only 8 of
%
sponsible for assessing individuals' LTC living (ADL) or instrumental activity of those aged 65 to 69 years but 46% of
needs, service planning, care coordina- daily living (IADL). (ADLs are basic
those aged 86 years and over. Another
tion, provider certification, and, in some self-maintenance activities [ie, bathing,
1.5 million people are in nursing homes
cases, provision of services. These agen- dressing, going to the toilet, getting and residential care facilities, and
cies would serve as the entry points to
outside, walking, transferringfrombed 200000 people are in psychiatric and
LTC within local communities, certify
to chair, or eating]; lADLs relate to a
long-stay hospitals."
eligibility for specific services, and asperson's ability to be independent [cooksign a case manager when appropriate. ing, cleaning, shopping, taking medica- UTILIZATION AND COST CONTROLS
The LTC Planning and Payment Board tions, doing laundry, making telephone
Removingfinancialbarriers to LTC
and the local LTC agencies in each state calls, or managing money].) High-risk
will increase demand for formal services.
would pay for the full continuum of cov- patients not strictly meeting this defini- Long-term care insurance could legitiered LTC services. Each state's LTC op- tion would be eligible for services
mately result in a 20% increase in nursneeded to prevent worsening disability ing home utilization and a 50% to 100%
erating budget would be allocatiid to the
local LTC agencies based on population, and subsequent costly institutional
increase in use of conununity and home
care. Local panels would have the flex- health care by the elderly." Increases
the number of elderly and disabled, the
economic status of the population, case- ibility, within their defined budgets, to in utilization might be expected to level
mix, and cost of living. Each loeal LTC authorize a wide range of services, tak- off after about 3 years, as occurred in
agency would apportion the availsible bud- ing into account such social factors as the Saskatchewan's LTC program."
availability of informal care.
get to cover the operating costs of apOur program would befinancedenproved providers in its community—alWhen case management or care cotirely by tax revenues, without premithough the actual payment apparatus
ordination is needed, the local agencies ums, deductibles, copayments, or cowould be centralized in the state's LTC would assume these tasks or delegate insurance. However, people permaPlanning and Payment Board to avoid
them to appropriate providers, eg, capnently residing in residential care would
duplication of administrative functions.
itated providers offering comprehensive use part of their basic Social Security or
4
31
28
15
17
4
JAMA. December 4. 1991 - Vol 266. No. 21
National Long-term Care-Harrington et al 3025
�i.'ifiilt-ni rates, and |jatieiu • 'Utc'iHeUata.
Inippjviiig the ti-aining. wa^'es. and
ninrale ot' LTC wi.i'kf rs i.- a!.-) crik ial t'j
impn>v)r.)|{thrtumliiv .ifvare. Lxf.g-ttrm
caiv u'ia'ker> i.'.UTe::;!) ear;; l'/1 '.u-i'/i
It-s.- than cuinparahie hospital cinpluyees i L'S Di-par:nif !it of Health and Human Service-. Division nfNui^ing. unpulili.-hed data. l'.i>>i. and 2u'v of nursing hc.ime workers hav e no health insurance. Nursing \:»r.\v? are r.>>'. vuiTfii: ly
required tu j i f i u d e ai'iU!;d-.i".e-clNi.-i-:
registereil nursing care, tew ,a've specialized stat'f sucii as genatiic nurse practitioners, and allies are often inaileijiiately trained. Many home care agencies have no professional staff or consultants. Wages in LTC organizations
receiving payment from the NHPwould
be regulated to achieve parity with the
acute care sector, with funding for this
increase phased in over 5 years.
;:
,
-
;
Funding would also be allocated for
training and inservice education of LTC
professionals, paraprofessionals. and informal care givers. Formal providers
would be required to meet minimum
training and competency standards.
Augmented training is particularly important for nurses and phv sicians, who
often lack experience in working with
the frail elderly, the disabled, and the
mentally impaired and in working with
multidisciplinary teams to develop community services. The development of a
cadre of physicians and nurses with special training in gerontology and geriatrics is essential. These professionals
would play key clinical and managerial
roles in integrating LTC for the elderly
with acute care, as in Great Britain and
other countries.
CONSUMER CHOICE
Consumer choice would be explicitly
fostered by the national LTC program.
Each individual eligible for LTC services would choose among the ceitified
providers in her or his area. Individuals
would select a primary provider organization and/or individual care provider,
including a primary care physician, and
could switch providers if they desired.
An independent ombudsman would resolve consumer grievances over provider
choice. Consumers and/or their delegated representatives would be encouraged to assume control over decisions
regarding their care and would be j^iven
assurance that durable power of attorney and living will provisions would be
honored.
COSTS AND FINANCING
Estimates of current expenditures for
LTC are imprecise because of the diversity of payment sources. In 1990 an
JAMA. December 4 1991 -Vol 266. No .21
e.-tiniated .So-l.o billion was .-pent for
nursing homes. S14.1 billion for equipment and appliances, and .<10.G billion
for home health services. ' In addition.
ah.>ut lu'r '>;>.) billioin of total hospital
cost.- were spent on psychiatric, rehabilitative, and chronic care services. '
Thu.-. the total LTC expenditures were
at least >104 billion in I'M) 116^ of total
health spending!, excluding informal
LTC services. Public programs, primarily Medicaid, currently finance about
half of formal LTC. Medicaid pays for
-IV; . if nursing home care. Medicare for
2''r. and other public payers for 3 £. "
Private insurance covers less than 2"r of
nursing home costs, while consumers
pay iY'r directly out-of-pocket. "'"'•Consumers pay out-of-pocket for 40^ of
home services in the L'nited States.'"
1
1
<
;
4
(>ur program would replace almost all
ofthe 552 billion (all figures in 1990 dollars) currently spent each year on private LTC insurance and out-of-pocket
costs with public expenditures. Additional funding would be needed, particularly in the first few years, to pay for
the increased utilization of LTC for previously unmet needs. The expected utilization increases of 20^ for nursing
homes and 5 < r to IOC* for home health
07
care'-' would cost between $16 billion
and S21.3 billion annually.
Further funding would be needed to
improve quality through increased training, wages, and staffing levels. However, some of these costs would be offset by reduced administrative costs and
improved program efficiency. Additional
savings may result from reductions in
disability and inappropriate hospitalizations. Precise estimates of these costs
and savings are impossible. For our estimates, we assume that the net increase
needed for the quality improvement
measures (after subtracting potential administrative and other savings) amounts
to $2 billion per year.
Overall, a total of $70 to $75.5 billion
in new tax revenues ($380 to $410 per
adult) would be needed to finance our
program. Of this total, $52 billion represents money that is currently spent
privately that would be shifted onto the
public ledger. In effect, a broad-based
tax would replace payments by the
chronically ill. Because LTC has been
seriously underfunded, $18 to $23.5 billion in truly new spending ($100 to $130
per adult) would be needed to expand
care and improve its quality. Since almost every family will use such services
at some point, this seems a reasonable
price for financial protection and improved services for the disabled and
aged.
These revenues could be raised from
several sources, including the Social Se4
curity system, general taxes, and estate taxes. Expanding Social Security
payroll taxes that currently fund Medicare would build upon the existing tax
system and ensure a broad tax ba.-e.
For example, a l f increase in payroll
taxes for both employers and employees would raise about -VJU billion. •' Increasing the earned income tax credit
for lower-income workers to lower their
payroll tax and removing the current
ceiling on Social Security taxes would
generate about •?49 billion in additional
revenue, while making such taxes less
regressive."' Federal estate taxe> are
another logical source of funds for LTC
and would have little negative impact
on low-income groups. A lOCr surcharge
on gifts and estates above $200 000 would
raise $2 to $4 billion. ' " and taxing capital gains at death would raise about
$5.5 billion."
r
1
1
COMMENT
Our proposed LTC program would be
integrated with the NHP, creating a
single comprehensive and universal public program for acute care and LTC. The
program would be federally mandated
and funded but administered at the state
and local levels. A single state board
would contract directly with providers
through a network of local public agencies responsible for LTC eligibility determination and for case management
and/or care coordination. All payment
would be channeled through the single
payment agency in each state.
Single-source payment is key to controlling costs, streamlining administration, and minimizing inequalities in
care.
Private insurance duplicating
the public program would be eliminated
in order to decrease administrative costs,
prevent insurersfromelecting to cover
only the healthiest (hence leaving only
the most difficult and expensive tasks
for the public sector), and guard against
the emergence of two-class care.
Prospective global budgeting for nursing homes and community-based services would simplify administration and
virtually eliminate billing and eligibility
determination. Prohibiting the use of
operating funds for capital purchases or
profit would minimize financial incentives both for skimping on care (as under the current per-diem nursing home
payment system) and for excessive intervention (as under the fee-for-service
payments received by many home care
providers). The separate appropriation
of capital funds would facilitate rational
health planning.
Current capital spending largely determines future operating costs, as well
as the distribution of facilities and programs. Combining operating and capi3155
10 5 6
National Long-term Care—Harrington et al 3027
�I.j. LuP.'an-.e MP D':-; - D:.,::.;••.< F•"\tt
«: H ' t ' t h /..'.',••..•.•>...-.•,.
VVa.-nInjT'in. DC: L'.s Dept u;' Eiiuiariun: l ^ - . " . Pi ^pai-etl
for the National Institute .,r; Di.-.itiilr.\ and Rtkahihtation Re.-rarch.
IS. /.»•<«•>
.•;
r
••»;/
/
.t'L'^'j-':-'-"' !'•'•• ; ' • i U':i.-i-.ir.jf:"n. PC. Employee Benefit Rr.—iuvh in.-tnutt-.
No. j t j .
IT. National Ccr/.er r'uf Htalth Statistics. Hin^ E.
.Sekstvn-ki E. Strakan 0. The National NurMi-.c
Home Sufvey:
.-ummary mr-.hf I'mteil States.
IVm/ W.u.''/' .SM* :';..•/ ifiSTiSo. HT. DHHS publication <PHS> -f'-lT.'».
IH. National Cn.tor
Health Stati.-tto. Sch-.enborn CA. Marann M C a r r m e-tinwtes tV'.tr. the
National Health lntei-vie« Surve.'.: l'r.i'.£-rl State-.
1^7. \VfoI H - ; " h <r„i/.•.,/. i!>»»:N.,. i.;.;. [iHHS
publication 'PHS. «--|."if4.
19. L u K. Manton KG. Liu B.M. H-.:-,- c:u> e.\pen.-es for the .li.-ahleil elderly. HCF
1"V,:T.
-jl-jT.
20. Stone R. Cafferata GL. Saiijfl I Carevrier- of
the frail elderly: a national profile, ("^v..,.//,/.,,;.^.
lft«T:iT:iil6-626.
21. D*-*loi>wr«l>
Agi-g. /:«>.• .4 Rvn,.,t ..r •/..
S/.er.o/ r , . „ . , . - . / f . ' f . „ . .-ly...;;
f " . . . » f . r V . S'»-
.|'p. Wa.-hirpon. DC. L'S Senate: IfeV:!--;.
22. Stone R. Atfinff m the eighties, age oo > tai>
and o\ er — u.-e of community services preliminar>'
data from the .-upplement on nging to the National
Health Interview Survey: l'nited State.- JanuaryJune I Wo. .VCtfS Ail'- Dnln '.•>*>••,:.
23. Families L'SA Foundation calls for a FTC In\estiifation of m.-urance industry abuse of frail elderly nursing home insurance buyers. Pre^s relea.-e.
Washington. DC: Families L'SA Foundation. February 2C. 1990.
21. Rivlin AM, Weiner JM. On-x^
th*
nhled Elderly: Win, \ \ , l l Puy' Washinirton. DC:
Brookings Institution; 19s^.
25. Soitrre Bunk o; Heul'l'
rnnce Dula: L'rdote. Washington. DC: Health Insurance Association of America: 1988.
26. Tl't Amencan Pnhlic IVCH-S Lung-temi Care:
A Surrey C'indnrted ln>- the Amencan Atsociattnn
• if Retired Peri,,,is and the VUlerx Fninidati'ii,
Pnnceton. NJ: R.L. Associates: October 19^7.
27. Kane RL. Kane RA. A Will and a Way: Wl,„t
Ihe i'n,led States Can Learn Fmm Canada Ah;„t
Care nf the Elderly. New York. NY: Columbia
L'niversity Press; 1985.
28. Blumenthal D. Schlesinger M. Drumbeller PB.
Reneifing the Promise: Medicare and Its Refonn.
New York. NY: Oxford L'niversity Press Inc; 1988.
29. Lung-term Care Conference. Washington. DC:
Villers Foundation; 1987.
.10. />rnrf Proposal Long-tenn Care Social Insurance Program Initiatice Washington, DC: Lewin
& Associates: 1987. Prepared for Advisor.- Committee on Long-term Care, sponsored by the Amer-
JAMA. December 4. 1991-Vol 266. No 21
.car. A.-.-ociation .[' Retired Per-.m.-. Okler Women'.- League, and the Villers Foundation.
•11. HimmeL-tem DC. Wuulhandlers. andthe Writing Committee of the W.^-king Group of Program
De-ign of Ph'.>ician.- for a National Health Program. A national health program for the L'nited
St.tte>: a phv-iician.-' proposal. S Engl I Med. 1959:
:;jo:lo2-li'P.
;12. Callahan JJ. Case management for the elderly:
a oanacea'.' J Agmg Socnl p.,1. 19*9:l:lsl-195. '
:l.r H,,*i>ital Statistics rjMi Edlti,,n. Chicago. Ill:
American Ho.-pital Assriciation; 198*i
.11. E-tes CL. The L'nited States: long-term care
ami federal policy. In: Reif L. Trager B. eds. Ini.
,/».,.a/ Pei si,*eti, es ,,n Lmg-'erm Care. New
V..rk. NY: The Hawoith Press:' 19M.r315-:!28.
• lo. l,.t*r>t <dy'.. L',i,g.tei-m Care E.,-j„i„sioii Pno•irnm: Issiie Pnjiers. E\cel.-ior. Minn: InterStudv:
.19S8.2.
:tti. Justice D. State Long-tprm Care Refonn. De
...•',,/,,„*,.t
Co,„min,,ty Cure Systems in Sir
S'a'o*. Washington. DC: National Governor's As.-ociacion: W**.
Kane RL. Kane RA. A nursing home in your
future? .V Engl J Med 1991::!24:827-ti29.
•IK. Freid.-nn E. Pf'itpy*',,,,,,]! D'nninance. Chicago,
III: Aldme Publishing Co: 1970.
:19. Newcomer RJ. Harrington C. Friedlob A. et
al. E, al„ntion of tlie Sucial Health Maintenance
I'liynnizati,,,, Demnnsti-atian Washington. DC: L'S
Dept nf Health and Human Services. Health Care
Financing Administration: 1989. Publication 03283.
10. Zawadski RT. The long-term care demonstration projects: what they are and why they came into
being. Home Health Care Sen-ices Q. Fall/Winter
198:);4::S-19.
11. Campbell LJ. Cole KD. Geriatric assessment
teams. Clin Genatr Med. 1987:3(11:99-117.
12. Hearings Before the Special Committee on Agmg ,,t ihe I S Senate. 99th Cong, 2nd Sess (1986).
13. Hearings Before the L'S House Committee on
Ways and Means. 99th Cong. 2nd Sess (1986).
I I . Kusserow RP. Home Health Aide Sen-ices for
Medicare Patients. Washington. DC: L'S Dept of
Health and Human Services; 1987. Unpublished
report OA101-86-CK)010.
15. Report to the Chamnan. Subcommittee on
Health and Long-term Care. Select Committee on
Aging. L'S House of Representatives: Medicare and
Medicaid: Stronger Enforcement of Sursing Home
Requirements Seeded. Washington. DC: US General Accounting Office; 1987.
16. Institute of Medicine. Improi-ing the Quality
of Care m .Viirsinj Homes. Washington. DC: National Academy Press; 1986.
47. Himmelstein DU. Woolhandler S. Who cares
for the care givers? lack of health insurance among
health and insurance personnel. JAMA. 1991^66:
39W01.
48. Barker WH. Adding Life to Years: Organized
C'ri'ltcr
Sen-ice*
n Great
Br-',l
„ -1 "d
l.,.i.l.'-'i
' « " " ''"' ' ' " L'-ted State-. Baltimore. Md: The
Johns Hopkins L'mverMty Pre.-.-; 19*7.
19. I. S Dept of Commerce. International Trade
Admini.-tration. Health ,i„d Mr,!.,;,I Sen-,res. I ' <
l,„l.,..inq;n„tl„„k ;.'>.'«. Wa.-hmgtoii. DC L S Dept
of Commerce: 199')
50. Hearings Before the H"i'i!l- T'i'k F,,,ri C
,,,,'t.e •„, the Budget. I S «•....<»
R. i „ r .
ti.t.-. iv.nh Cong. 2nd S*» 19»7i '•.e>timun;. ,,f
Nancy Gordon, a.-.-istant .lirector tor Human Resource- and Community Depp
51. Ta.-k Force on Long-term Care Police Re1
jioit
to Congress
anil
'h
t
Secre'ary
L',,••./•''•,;„
Health Care Policies. Wa.-hington. DC: L'S Pept of
Health and Human Service.-; 19s7.
52. Division of National Cost E.-timates. i.lffice of
the Actuary. Health Care Financing Administration. \ati,jnal Health E'-jie'-d't-ires. nt-ri.jintn
Washington. DC: Health Care Financing Admmiatration; 1987:8:1-36.
53. Levit KR. Freedland MS. National medicul
care spending. Health Alf. 1988:7:124-136.
54. Price RJ. O'Shaughnessy C. Lung-term ('are
for the Elderly. Washington. DC: The Library of
Congress: 1990. Congressional Research Service
Issue Brief.
55. Harrington C. Newcomer RJ. Friedlob A.
Medicare beneficiary enrollment in S/HMO In:
Social/Health Maintenance Organization Dei,,,,,,stration Ecaluation: Report on the First Tln^q
Months. Washington, DC: Health Care Financing
Administration; 1987:chap 4. Contract HCFA -o034/CP.
56. Bodenheimer T. Should we abolish the pm ate
health insurance industry'' Int J Health Sen- iw*.i:
20:199-220.
57. Hawes C, Phillips CD. The changing structure
of the nursing home industry and the impact of
ownership on quality, cost, and access. In: Gray
BH, McNemey WJ, eds. For-Pmfit Eiiten,n.<e .„
Health Care. Washington, DC: Academv Pre^s;
1986:492-538.
58. Report to the Subcommittee on Health. Committee on Ways and Meant, House of Representatives: Medigap Inmrunce Law Has Increased
Protection Againet Substandard and Overpriced
Policies. Waahington, DC: US General Accounting
Office; 1986.
59. Evans RG, Lomaa J . Barer ML. et al. Controlling health expenditures—the Canadian reality. .V Engl J Med. 1989:320:571^77.
60. Woolhandler S, Himmelateir DU. The deteriorating administrative efficiency ofthe U.S. health
care system. .V Engl J Mid. 1991;324:1253-1258.
61. Blendon RJ. The public's new oftheftitureof
health care. JAMA. 1988259:3587-3593.
62. Harris L . Majorities Faivr Paesage of Longterm Health Care Legulation. New York. NY:
Louis Harris & Associates; 1988.
National Long-term Care-Harrington et al 3029
Printed ana Publishtd in the United Stares ot America
�TO:
Marilyn Moon
FROM:
John Rother
DATE:
December 22, 1992
SUBJECT:
Assisted l i v i n g
I understand that you a r ^ interested i n information concerning
a s s i s t e d / l i v i n g and i t s /role i n long-term care. Elizabeth
Clemmer and Don Redfoot have put together t h i s material which I
hope may be of use. I t i s based mainly on current or j u s t
completed research sponsored by the Public Policy I n s t i t u t e .
Please c a l l me or Elizabeth or Don i f you have questions or wish
more information.
cc:
Theresa Varner
Jane T i l l y
Marty Corry
P a t r i c i a Smith
Howard Bedlin
�The recognition that people want to be responsible for their
own lives and that public policy should encourage independence
rather than dependence i s changing the way the U.S. approaches
many heretofore dependent groups, including people with
d i s a b i l i t i e s and f r a i l elderly.
Assisted l i v i n g combines a philosophy of independence,
responsibility, privacy, and dignity with group r e s i d e n t i a l
l i v i n g arrangements that offer oversight and assistance with
a c t i v i t i e s of daily l i v i n g (ADLs) as needed. As such, i t offers
both an e n t i r e l y different approach from nursing homes to
providing long-term care to people who need help with ADLs, as
well as a framework for improving care in board and care homes.
As the data below show, assisted l i v i n g does not replace nursing
homes for everyone, but rather provides assistance to those whose
primary needs are for help with ADLs and instrumental a c t i v i t i e s
of daily l i v i n g (IADLs). Assisted l i v i n g i s not an option for
persons needing extensive nursing care.
Assisted l i v i n g i s also a response to major trends affecting
the long-term care marketplace. These trends include the
increasing desire of older people to remain independent and avoid
nursing homes (and the g u i l t of their families on t h i s issue),
the s h i f t toward releasing hospital patients to nursing homes for
subacute care, longer l i f e spans during which people grow more
f r a i l but do not necessarily need nursing assistance, and the
r e a l i z a t i o n that many residents now i n nursing homes do not
require such nursing assistance.
Two studies sponsored by AARP's Public P o l i c y I n s t i t u t e , one
done by Catherine Hawes a t the Research T r i a n g l e I n s t i t u t e (RTI)
on board and care regulations (and soon t o be published) and one
i n progress by Rosalie Kane and Keren Brown Wilson, provide some
of the l a t e s t data relevant t o assisted l i v i n g . Some of these
data are summarized around four issues c r i t i c a l t o a discussion
of assisted l i v i n g :
*
Who l i v e s in assisted living?
*
What i s their quality of l i f e ?
*
What does assisted l i v i n g cost and how is/can i t
be paid for?
*
How i s or can quality of care be assured?
Who lives in assisted living?
*
Data from Kane and Wilson show that publicly funded
programs tend to serve more impaired residents than
private pay programs.
*
Oregon's public program serves people with substantial
ADL needs and/or cognitive impairment:
�-48% of Oregon's Medicaid assisted l i v i n g residents had
transferred from nursing homes as had 25% of the
private pay residents.
- e w data from Oregon show that 42% of assisted l i v i n g
Ns
residents need help with ambulation (over half are
wheelchair or walker dependent), 32% with eating, 39%
with t o i l e t i n g , 30% with transferring and 63% with
bathing.
-Oregon data also show 30% need oversight for safety,
40% for behavioral management (aggression, orientation,
mental disorders) and 15% exhibit s o c i a l l y
inappropriate behavior (e.g., sexuality, eating); a l l
of Oregon's Medicaid residents (25% of total) are
nursing home e l i g i b l e .
~~
*
Data from a county-funded program in Alexandria, VA
show that 35% of residents have mental health problems,
69% have cognitive impairment and 10% are mentally
retarded.
*
Data from Kane and Wilson indicate that private pay
programs serve a greater range of residents, with most
private pay programs having residents who need modest
assistance as well as those with serious impairments
(wheelchair bound, incontinent, cognitively impaired,
using oxygen, e t c . ) .
*
Kane and Wilson data show that in both public and
private programs many residents remain u n t i l d e a t h —
that i s , the assisted l i v i n g program meets their care
needs u n t i l death or j u s t before death:
-In Oregon raw data on discharges show that death i s
the most common reason for leaving assisted l i v i n g
(39%), with 22% moving to nursing homes (e.g., when
they need I v s , require two-person t r a n s f e r s ) , 16% to
t h e i r own homes and 12% to other supportive housing.
-Data from private f a c i l i t i e s are incomplete but
indicate that a higher proportion of residents than in
Oregon are discharged to nursing homes.
What i s the quality of l i f e in assisted living?
*
Residents can l i v e a more "normal" l i f e , with more
independence, autonomy, dignity, privacy and family
involvement than i s available in nursing homes:
�-Kane and Wilson interviews with private pay programs
show strong "recognition that there i s [ s i c ] a good
many years of quality l i f e that many individuals can
enjoy with assistance"; 40% allow pets, most allow
overnight guests, many provide locking units or require
s t a f f to knock before entering, v i r t u a l l y a l l offer
transportation to residents.
-Oregon requires private locking units with
kitchenettes and allows pets; residents e s s e n t i a l l y
l i v e in apartments but receive intensive services;
providers negotiate with families and residents about
the appropriate levels of r i s k for each resident.
*
Anecdotal data and Oregon's experience with nursing
home residents choosing assisted l i v i n g when offered
the option indicate a preference of residents and
families for assisted l i v i n g .
*
Assisted l i v i n g , because i t i s acceptable to people
with a range of needs, allows aging in place; the
exception i s Continuing Care Retirement Communities,
where assisted l i v i n g allows aging on a campus but not
in one place.
What does assisted l i v i n g cost and how
is/can i t be paid for?
*
Private pay programs range from about $900 per month to
$3 000+ depending on level of services and amenities.
*
Oregon's program averages $l,713/month for private pay
residents; for publicly supported residents, Oregon
providers receive funding from residents or SSI to
cover room and board and an average of $891/month from
Medicaid for services.
*
Currently, two major long-term care insurers, Aetna and
American Express, cover assisted l i v i n g ; coverage i s
too recent to provide data on costs.
*
Since 1991, Arkansas has had a Medicaid personal care
benefit that pays providers to cover up to 72 hours of
care/month/resident i f the resident i s SSI e l i g i b l e and
a physician c e r t i f i e s that the care i s needed. Payment
rate i s $11.40/hour and about half of Arkansas'
r e s i d e n t i a l care ( i . e . , board and care) f a c i l i t i e s are
c e r t i f i e d to use the program.
*
Assisted l i v i n g w i l l save some public funds by serving
a proportion of those currently in nursing homes who do
not require that level of care.
�*
Kane and Wilson data show that construction financing
i s the biggest concern of developers;
see attached
transition recommendations for HUD actions that could
expedite financing.
How i s or can quality be assured?
*
Assisted l i v i n g i s regulated in one of three ways:
-as home health, i f f a c i l i t y i s operated as independent
housing with home health agency providing assistance
under individual contracts;
-as board and care home, under the various regulations
in 62 agencies in the 50 states and DC;
-as assisted l i v i n g , under s p e c i f i c regulations for
t h i s type of care; following Oregon's lead, several
states are developing s p e c i f i c regulations for t h i s
level of care.
*
Concerns about quality seem to revolve around the home
health and board and care regulation, not around the
s p e c i f i c assisted l i v i n g regulations. Data from the
RTI study on board and care show that:
-State regulations vary widely even within the same
state (11 states have two different agencies regulating
different types of homes).
-Homes are usually inspected annually but enforcement
i s t y p i c a l l y weak.
-Few sanctions are applied except for corrective action
plans, many of which are only s e l f - c e r t i f i e d .
-In 1990, few state o f f i c i a l s were familiar with
assisted l i v i n g .
*
L i t t l e i s known about the quality of care provided by
home health agencies i n independent housing; even the
national home health association has no information.
*
Policy options for assuring quality include:
-Develop minimum federal standards with public funding
tied to meeting those standards.
-Upgrade existing programs (in housing and board and
care) where possible by:
-using the training programs developed by public
and private assisted l i v i n g programs to t r a i n
staff;
�-funding long-term care ombudsmen adequately and
use them to provide technical assistance to
providers;
-funding r e t r o f i t t i n g where needed.
-Require care plans for a l l residents; Arkansas
requires nurse evaluation of a l l residents receiving
Medicaid personal care funding every 60 days.
-Require states to designate a lead agency that focuses
on regulation and quality control.
-define assisted l i v i n g broadly enough to allow
innovations and f l e x i b i l i t y but narrowly enough so that
consumers and government funding agencies are assured
of consistent product.
End.
�MEMORANDUM
December 15, 1992
TO:
FROM:
Gerben DeJong
Long-term Care Working Group „
RE:
Development of Long-term Care Policy Options for the Incomiiag Clinton Administration
Target population:
Several of us are working to develop policy options on long-term care for the
Clinton transition that may, or may not, be included in a health care reform package. In
the interest of obtaining a wide assortment of views, we are seeking your input to a
series of key issues. Because of your involvement with the needs and concerns of the
above-referenced population, we would like to obtain your answers to the questions listed
below.
We are requesting that you prepare a brief paper, no more than 3 single-spaced
pages (preferably shorter), in answer to the following questions:
1.
How many people in your target population require hands-on
assistance or supervision to meet their everyday needs with
activities such as personal care, getting around, or managing
their financial affairs?
2.
How do the needs differ among various subpopulations of
people within the target population? Do people's preferences
and needs vary by age, gender, family status, or cognitive
ability? How? Do you have data that can characterize these
differences? Please cite data sources to the extent they are
available.
3.
What range of services ought to be included in a welldesigned personal assistance or long-term care benefit package
to accommodate the needs of your target group?
1
'Examples might include personal assistance, chore services, homemaker services, home health services,
hearing interpreter services, reader services, respite care, community-basedresidentialcare, institutional care,
nursing home care, and others.
�Withdrawal/Redaction Marker
Clinton Library
DOCUMENT NO.
AND TYPE
001. memo
SUBJECT/TITLE
DATE
12/15/1992
Phone No. (Partial) (I page)
RESTRICTION
P6/b(6)
COLLECTION:
Clinton Presidential Records
Health Care Task Force
Lynn Margherio
OA/Box Number: 4811
FOLDER TITLE:
Health Reform Technical Work Group on Long-Tenn Care - 1/19/93 [loose] [2]
:
2006-0885-l
.im763
RESTRICTION CODES
Presidential Records Act - |44 U.S.C. 22(l4(a)]
Freedom of Information Act - [S U.S.C. 552(b)|
PI National Security Classified Informaiion 1(a)(1) of Ihe PRA]
P2 Relating to the appointment to Federal office 1(a)(2) ofthe PRA]
PJ Release would violate a Federal statute 1(a)(3) ofthe PRA|
P4 Release would disclose trade secrets or confidential commercial or
financial information 1(a)(4) of the PRA]
P5 Release would disclose confidential advice between the President
and his advisors, or between such advisors |H)(5) ofthe PRA]
P6 Release would constitute a clearly unwarranted invasion of
personal privacy 1(a)(6) of the PRA]
b(l) National security classified information 1(b)(1) ofthe FOIA]
b(2) Release would disclose internal personnel rules and practices of
an agency 1(b)(2) ofthe FOIA|
b(3) Release would violate a Federal statute 1(b)(3) ofthe FOIA]
b(4) Release would disclose trade secrets or confidential or financial
information 1(b)(4) ofthe FOIA|
b(6) Release would constitute a clearly unwarranted invasion of
personal privacy 1(b)(6) of the FOIA]
b(7) Release would disclose information compiled for law enforcement
purposes 1(b)(7) ofthe FOIA|
b(8) Release would disclose information concerning the regulation of
financial institutions |(b)(8) ofthe FOIAj
b(9) Release would disclose geological or geophysical information
concerning wells 1(b)(9) of the FOIA|
C. Closed in accordance with restrictions contained in donor's deed
ofgift.
PRM. Personal record misfile defined in accordance with 44 ll.S.C.
2201(3).
RR. Document will he reviewed upon request.
�Long-term care policy options
December 15, 1992
Page 2
4.
How is eligibility for personal assistance or long-term care
services typically determined within your target population
(e.g., hours of assistance, number of ADLs, etc.)? How ought
eligibility to be determined? Do ypu have data that would
indicate how many people in your target population would
meet the requirements of your proposed eligibility criteria?
Please include such data.
5.
What technologies currently exist or are likely to exist in the
near future that might substitute for human assistance? To
what extent can home modifications and other adaptations
help to reduce the need for human assistance in your target
population?
I would appreciate receiving your brief write-up by 9:00 a.m. Monday morning,
December 21st. Our working group will be meeting in the afternoon. Your materials
will be combined with those of others in forging a more global and comprehensive series
of personal assist<ince/long-term care policy options.
Issues related to financing, federal-state funding, service coordination, role of
private insurance, and others will be addressed by others. If you have strong views or
novel ideas regarding these matters, do not hesitate to share them with me and will share
them with others in the working group.
We would like authors to put their names, affiliations, phone and fax numbers at
the end of the paper so that we can give appropriate credit. This will also enable people
in the next stage of development to contact individual authors. Just use a simple title,
centered and capped on the first page. No cover sheets please.
If you have any questions, please do not hesitate to contact me at:
oo\~\
NRH Research Center
102 Irving St NW
Wafihington, DC 20010
(202) 269-8373 (work)
(202) 269-8399 (fax)
I :'p6/(b)(6) I (home)
Thank you for your assistance.
�MAJOR THEMES IN THE CLINTON
CAMPAIGN AND ADMINISTRATION:
THEIR IMPLICATIONS FOR LTC POLICY
A.
Rebuilding the productive capacity of the American economy through
investment in infrastructure and human capital
This theme works well for the working-age portion of the disabled population.
Providing consumer-driven personal assistance services enable people with
disabilities to go to school, take jobs, and contribute to the community. Need to
invest in people with disabilities to enable them to function independently and
productively in the community.
B.
New Covenant: A reciprocal relationship between the individual, family,
and society; communal responsibility; citizenship.
1.
2.
This theme works well for working-age people with disabilities who not
only want rights but also want the attendant responsibilities.
3.
C.
LTC policy could be linked to the concept of national service. There
simply is going to be a shortage of people willing to provide communitybased assistance that is not linked to professional career ladders.
Community-based LTC could be an important form of national service
opportunity.
Older people with disabilities also want to continue to make a contribution
to community life and leave a positive legacy for the next generation. How
can the availability of community-based LTC help older people meet their
desires to contribute to community and family life?
The character of government in the delivery of services: entrepreneurial,
catalytic, community-owned, market-driven, competitive, customer-driven,
mission-driven, results-oriented, decentralized; one-size govt does not fit all.
1.
We need to device a policy that values consumer choice and control. Users
should be able to choose from a menu of options that dovetail with their
individual needs and living circumstances. Use of cash and vouchers should
be used wherever possible. Modifications in consumer choice and control
will have to be made for those with cognitive impairments.
2.
We need to find ways in which we can forge an effective partnership
between the individual, family, the govt, and various provider entities.
G DeJong
Dec. 16, 1992
��DEVELOPMENT OF LTC POUCY OPTIONS FOR INCOMING CLINTON ADMINISTRATION
Ireceivedthe list of five questions transmitted to me by Beth Soldo of Georgetown. We fortunately had
results on hand from the Narional Long Term Care Survey (NLTCS), a scries of three longitudinal surveys of
the U.S. 65+ population conducted in 1982,1984, and 1989.
Let merespondto the latter part of question 2 (about data resources), since answers to other questions
derive from these sources sod these data arerichenough to answer a series of other questions (e.g., about acute
and post-acute care use of the elderly under the Medicare program; both for the nondisabled and disabled elderly
population).
,
The data we use to respond to your questions are the surveys done in 1982,1984, and 1989 (with a
fourth wave planned for 1993) of the chronically disabled, institutionalized, elderly population. The chief
advantages of these surveys (the work on the 1989 and 1993 surveys is supponed by grantsfromthe National
Institute on Aging) are:
1. The same basic sampling methods and instrumentation are used in each year. This, along with the
use of the same survey organiaation (the U.S. Census Bureau) means thatresultsare highly comparable over
time so that good estimates of trends in the health and functioning of the disabled elderly population can be
made.
2. The credability of these trend estimates is based on having highresponserates (>95%) in all three
years and the fact that our sample is drawn from Medicare eligibility lists - meaning that we can track the vital
status and service use of ail persons (including nonrespondents) drawn for the survey (i.e., almost 100%
coverage of sample persons over time in the Medicare system).
3.
The survey both tracks persons over time (i.e., if they were once chronically (90+ days) disabled
or in a chronic care institution, they received detailed community or institutional surveys thereafter to track
positive and negative changes in disability) and, for each survey date, an age-in sample of persons who passed
aged 65 between two surveys is drawn - in order that at each survey date the entire Medicare eligible elderly
population over age 65 is represented. Thus, the survey is representative both longitudinally and crosssection ally.
4. The survey records are linked to Medicare Part A and Bfilesfrom1982 to 1991. Thus, we have
continuousrecordsof service use for each individual over time, including over periods when Medicare policy
changes were made (e.g., we analyzed the effect of Medicare PPS Lntroducuon in 1983 on hospital and postacute care use; we found Medicare that home health care use was stable for married, disabled persons but
increased rapidly for unmarried, disabled persons;reflectingan interaction of marital stams, early hospital
discharge and the compensation for early discharge by post-acute care use). Recently, we have linked survey
records to individual records from state Medicaid files (i.e., from HCFA's Medstat system).
5. The sample sizes are larger and the extreme elderly and women are well covered. The age range
covered by the survey ("Medicare reported age) is 65 to 118. Cumulatively (including 5,000 case age-in samples
each in 1984, 1989) there are 45,000 elderly individuals with 11,000 deathsrecordedfor the 1982-1991 period
(10,000 cases are age-in not covered for the full time). This identified about 16,500 interviews in the three
years of community disabled persons (i.e., on average of 5,500 per sample year) with 5,080 persons in
institutions covered over time and with the oldest-old sample being 2000+ cases in each year. In the 1993
NLTCS NIA has funded both the base survey (including a 5,000 case age-in sample) and supplements of the
extreme old (95+), African-Americans and the nondisabled (as a comparison group) although funding for the
1993 survey is tight. In addition, we received funding from NIA for a "Ncxt-of-Kin" survey to be conducted of
persons who died two years prior to the 1993 survey to see what terminal health care expenses were, use of
Medicaid musing homes, etc.; this parallels a "Next-of-Kin" survey conducted in 1984.
6. We get detailed information on services provided by family members and formal caregivers (about
12,000 of each type reported in each year).
7. The detailed instrument covers a.) medical conditions, b.) ADL limitations and the special
equipment and personal assistance used to cope with each, c.) IADL limitations, d.) limitations of physical
performance (e.g., climbing stairs), e.) sensory impairment, f.) socio-economic factors (living arrangements;
�family size; household and individual income and assets; use of various types of medical services (including
those not currently covered in Medicare), marital stams, education), g.) use of a broad range of federal
programs; h.) parameters of institutional care use.
Clearly, many questions can be answeredfromthe data set — especially over time. Specific responses
to the five questions are:
1. We produced a paper appearing in the Gerontologist that covered these questions in detail The
major story was that care patterns were changing with persons with lADLs, or two or less ADLs, impairments
were relying more on special equipment; while the severely impaired more often supplemented personal care
with special equipment. Specific examples are that the number having trouble gening around inside was 2.4
million in 1982 and 2.8 million in 1989. This is an increase of 16.3% - which is more rapid than the growth of
the 65+ population (i.e., 14.7%from1982-1989) but slightly iess rapid than expected if using age standardized
rates (i.e., the 85+ population grew 27.9% over the period). Increases were noted in the use of a wide range of
equipment (e.g., used railings - 45,000 (1982) to 100,000 (1989); walkers - 735,000 (1982) to 1,059,000
(1989); use of cane or crutch - 1,333,000 (1982) to 1,497,000 (1989); use of wheelchairs - 362,000,(1982) to
523,000 (1989)). Bathing impairments increased 16.2% (from 2.5 million to 3.0 million) with, for example,
increases in the use of shower seat or tub stool (625,000 (1982) to 1,037,000 (1989); "grab-bars" 691,000
(1982) to 1,079,000 (1989)).
Fundamentally, the elderly impaired population using only equipment rosefrom313,000 (1982) to
631,000 (1989) - an increase of 101.2%. Those using onlv personal assistance declinedfrom1,509,000
(1982) to 1,118,000 (1989) -- an absolute drop of 391,000 or 25.9%. Those using both equipment and
personal assistance increasedfrom2,940,000 (1982) to 3,436,000 (1989), an increase of 470,000 or 16.9%.
These changes varied by age, gender, and disability level. They, however, show that at all levels of impairment
the use of special equipment is increasing while sole reliance on personal assistance is decreasing. This may be
due to increases in the education and income level of recent cohorts who may be better able to use devices to
respond to impairments. This raises the question of whether recent estimates of the cost of LTC services took
into account a.) moderate improvement in the prevalence of disability among the elderly, and b.) the possibility
of capital for labor substitutions (i.e., equipment for ongoing personal assistance was not fully explored).
We feel that the increasedrelianceon equipment is in part a reflection ofreducedinformal care resources
(Le., increased female labor force participation; smaller family size; mobility of family members) 1982 to 1989
and the fact that using equipment may contribute to the social autonomy of elderly, impaired persons.
2. Needs do differ strongly by age (increased disability at latter ages), marital stams (a prime source
of informal care; often hicking for elderly females), income and education (the higher these are the more likely a
person is to defer institutionalization - especially for oldest-old females who are widowed), family status (this
has major effects across racial groups; caregiving patterns are quite different for whites and African-Americans),
and cognitive status. Differences across cognitive status are quite important. This group is likely not to be able
to cope without some personal assistance. Estimates of its size vary. However, this, we believe, is more
apparent than real. Evans et al. (Chapter 13 in The Oldest-Old, Suzman R. ct al., Eds., Oxford University
Press, 1992, pp. 283-302), using data from the East Boston EPESE Study estimated a 47% prevalence of
Alzheimer's disease over 85. They, however, did not use two of the DSM-DI criteria (i.e., social dysfunction
and slow onset). More important they counted persons with any level of cognitive impairment. They suggest
that 25% of this group is "severely" impaired. Thus, estimates of severely impaired in that study, and in the
NLTCS, are quite similar (i.e., in the NLTCS about 600,000 severely cognitively impaired in the community;
another 500,000 in institutions). As indicated above we have detailed socio-economic, medical, and service use
data on the cognitively impaired - as well as other groups.
3. A long term care benefit package must take into account the increasing use of equipment and
housing modification already evident in change 1982 and 1989 in the community disabled elderly population.
This implies one time capital expenditures rather than continuing services may be effective. Also, our data on
longitudinal changes suggest that significant proportions of the chronically disabled elderly (consistent with
small clinical studies like Fiatarone et al., JAMA 263:3029-3034, 1990) can improve in function if physical
therapy is provided. Other crucial elements are nutritional support (which has effects not only on protein-energy
malnutrition, but micro-nutrients may effect both gastric (Penn et al., Age and Ageing 20:169-174,1991) and
general (Chandra et al.. Lancet 340: 1124-1127, 1992) immune function. The income and education data
suggest that persons avoid institutionalization when possible. For males, with spouse alive, this already occurs.
Higher income and education females have drastically lower (about half) institutionalization rates. Thus,
traditional elements of a LTC package (i.e., physical therapy; equipment and housing modifications; nutritional
�support) may maximize the human capital in the elderly disabled population and make institutionalization less
necessary - except for persons with severe cognitive impairment.
In addition, geratric evaluation units can help identify treatable causes of disability. For example, in a
recent nursing home study, four of seven ADLs were strongly related to vision impaiiment which was often
preventable (It., glaucoma) orremediable(i.e., cataracts - lens implants). Thus, the basic idea is to prevent
disability, improvefiincrioingamong those already impaired andreduceinstitutional use to the degree possible.
An issue of importance is that, in the past, community LTC was compared against institutional costs to
determine cost efficacy. Given that institutional care was often less than optimal it is unclear that this is a
reasonable standard. Indeed, in an analysis wc did of New York (a high benefit state) nursing home case mix,
we found that cognitively impaired clients and those with behavior problems were not receiving what was
clinically viewed as desired care. The lack of services for the^cognitive impaired was reflected in the RUGS-H
groups which are based on historical care patterns (Manton et al., HCF Review, 1992).
4. To be considered eligible for the NLTCS one has to be a.) a resident of a nursing home, rest or
convalescent home, with tliree or moreresidentsand 24 hour medical care, or be in a designated chronic care
bed in a hospital, or b.) have an ADL or an IADL impairment (due to physical disability or health) that has
existed, or is expected to last, 90+ days. This defines a general population so that we can examine different
thresholds.
I think eligibility should be based on the health and functional status of the patient with the
services to be provided selected taking into account the family and household arrangements. Those with three
ADLs or more represent a very different group than those with two or less. For one thing, they are likely to
need more medical services and be at high risk of institutionalization. Less impaired people could be handled
with appropriate care in the community. In 1989 there was a total of 6.97 million persons 65+ with some
chronic disability or in institutions. The institutional component was about 1.7 million with those living in the
community broken very roughly into about 1.3 or 1.4 million lightly impaired (lADLs only), 2 million with one
to two ADLs, and 1.9 million with three ADLs plus.
5. This is a major area that we believe has recently, and will continue, to change the mix of services
used by elderly disabled persons. The NLTCS covers services that existed in 1982. There are a number of
technological extensions involving electronic monitoring of persons with health problems, use of control
devices in the home, improved aids to mobility (e.g., walker and wheelchair), and physical prostheses. This
area has not began to be adequately explored.
The above is clearly only an outline of ideas. The NLTCS offers considerable data to delve into these
questions in much greater depth. If you have any questions, please do not hesitate to contact me:
Kenneth G. Manton, Ph.D.
Duke University
Center for Demographic Studies
2117 Campus Drive
Box 90408
Durham, NC 27708-0408
(919) 684-6126 (office)
(919) 684-3861 (FAX)
�tOork
Ucsp
WTO
�Disability Statistics Program
Institute for Health & Aging
School of Nursing
(415) 7 & 9 5 (Office)
8 81
(415) 362-0258 (FAX)
Sunday, December 20,1992
To:
Gerben DeJong
From: Mitch LaPlantc
Re:
**
LTC estimates
Here are my quick answers to the two questions.
As the material I faxed earlier shows, according to the 1987 Narional Medical Expenditure
Survey (NMES) approximately 7.3 million people of all ages get helpfromothers in basic
life activities (i.e., ADL or IADL activities). Of them 2.9 million are under age 65. Soon
to be published datafromthe 1990 National Health Interview Survey shows that 5.0
million people need assistance from another person in IADL only and another 2.7 million
need he p in ADL, for a total of 7.7 million. Of them, 3.4 million are under age 65. The
rates increase with age and are higher for women than men, independent of age (LaPlantc,
1991).
One important unknown is how much assistance (hours of care, etc.) is needed? About
three-fourths of people who need help in basic life activities need help all or most ofthe
time, that is, they can only do these activities rarely. Over half require someone lo be with
them at home all or most of thetime(LaPlantc, 1991). These, data suggest that the amount
of caregiving in terms of hours and timiing is considerable. Of course, most people who
get helpfromanother person get help informallyfromfamily and friends (Stone.Cafferata,
& Sangl, 1987). Less than a quarter of people who have difficulty (a broader group than
those who receive hands-on assistance) get formal help at home or receive community
services (LaPlante & Miller, 1992). The NMES dataraisean equity question in that fewer
nonelderly than elderly people with difficulty in basic life activities receive home health
(8.2% and 18.8%)) or community services (15.7% and 24.6%).
The NMES will be able to estimate caregiving burden better than any source to date. If you
need such estimates, I suggest calling Tamra Lair at AHCPR and asking for them, since the
estimates,
data has not yet been released to the public. Also, Josh Weiner is planning a study of
NMES and could answer questions pertaining to what estimates NMES can deliver.
LaPlante, M. P. (1991, January). Disability in Basic Life Activities Across the Life Span.
Disability Statistics Report (1). Washington, D.C: National Institute for Disability and
Rehabilitation Research.
LaPlante, M. P., & Miller, K. S. (1992, April). People with disabilities in basic life
activities in the U.S. Disability Statistics Abstract (3). Washington, DC: National Institute
on Disability and Rehabilitation Research.
Stone, R., Cafferata, G. L & Sangl, J. (1987). Caregivers of the frail elderly: A national
profile. Gerontologist. 27(51. 616-626.
M
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�Disability
Statistics
Abstract
Number 3
People with Disabilities in Basic Life Activities in the U
A
n estimated 9.5 million (4.0%)
noninstitutionalized U.S. civilians experience difficulty in performing basic life activities due to
mental or physical health problems,
based on 1987 data from the
National Medical Expenditure
Survey (NMES).
Basic life activities include walking, self-care, and community and
home management activities. In
NMES, self-care, also called "activities of daily living" (ADL), includes
bathing, dressing, toileting, transfer,
feeding oneself, and getting about
the home. Community and home
management activities, also called
"instrumental activities of daily
living" (IADL), include household
chores, handling money, shopping,
and getting about the community,
activities. This increases to more
than one in four (26.5%) people for
those aged 75 to 84. At ages 85
and older, almost three-fifths
(57.6%) of the population experiences difficulty in performing basic
life activities. Although people
under the age of 65 are not very
1). However, the likelihood of
having difficulty in carrying out basic likely (1.9%) to experience difficulty, this small likelihood applies to
life activities more than doubles
a very large population. About 3.9
with each succeeding age group
(Figure 1). From 65 to 74 years of million people under age 65 have
age. one in nine (11.8%) individuals difficulty compared to 5.6 million
people age 65 and over.
has difficulty in performing basic
About one person in
twenty-five experiences
difficulty in performing
basic life activities
1
FIGURE 1. Disability In basic life actlvltes by age
People who have difficulty
P o l wixh difficult *tiJ lielped by others
e pe
People with diffiailty
Difficulty in performing basic life
activities occurs at all ages (Table
Disability Statistics Program,
University of California,
San Francisco
Published by U.S. Department of Education, National Instituttt on Disability
and Rehabilitation Research (N1DRR)
Number 3, April 1992
26.S
150.0
0
%
10%
20%
3%
0
40%
50%
6%
0
Percent of U.S. civilian noninstitutionalized population
Source: 1987 National Medical Expenditure Survey Round 1.
�2
Disability Statistics Abstract
TABLE 1. People with difficulty and those who get help In basic life activities
Persons with any difficulty
Persons who get help from others
Total
population
(in 1,000's)
Number
(in1.000'j)
Percent
of total
population
Number
(in 1,000's)
Percent
of total
population
Percent w
difficulty
who get h
Total
237,890
9,511
4.0
'7,298
3.1
76.7
Age
0-17
18-44
45-54
55-64
65-74
75-84
85+
63,900
101,609
22,427
22,046
16,886
8,750
2,274
195
1,524
848
1,324
1,993
2,315
1.310
0.3
1.5
3.8
6.0
11.8
26.5
57.6
178
1.196
620
926
1.463
1.778
1,136
0.3
1.2
2.8
4.2
8.7
20.3
50.0
91.3
78.5
73.1
69.9
73.4
76.8
86.7
0-64
65+
209.981
27,909
3.893
• 5.619
1.9
20.1
2,921
4,377
1.4
15.7
75.0
77.9
Source: 1987 National Medical Expenditure Survey Round 1: authors' original tabulations from public use tapes.
U.S. civilian nonmstitutionaliied population.
others. Although the percentage of Nature of assistance
all individuals under age 65 who
receive help is relatively small, the
The most common activities
number of individuals under age 65 people have difficulty with are
Seventy-seven percent (7.3
million) of the 9.5 million individuals who get help is 2.9 million-40% of getting about the community, doing
light housework, and shopping-all
experiencing difficulty in performing all people who get help.
IADL activities-followed by bathing
basic life activities get help from
and walking (Table 2). Activities
other people (Table 1). Help
which are least likely to pose an
includes informal assistance from
About three in four people obstacle are feeding oneself,
family and friends as well as formal
toileting, and using the telephone.
assistance from service providers. with difficulty get help
While less than one in fifty (1.4%) of from others
In NMES, nature of assistance in
the population under age 65
walking and ADL is measured by
receives personal assistanca, apwhether the activity is performed
proximately one in six (15.7%) aged
without assistance, only with
People age 17 and under who
sixty-five or older obtains help from have difficuity are most likely to get equipment, only with help from
others. Between the ages of 75 and help (91.3%), followed by people
others, with equipment and help, or
84, the proportion increases to one 85 years or older (86.7%). People if the activity can't be performed
in five people receiving assistance
with difficulty in the 55-64 age
even with assistance. Difficulty in
(20.3%). At 85 years or older, one- group are least likely to get help
IADL is measured similarly, but use
(69.9%).
half of all people get help from
of equipment is not considered.
People who got holp from
others
�_ Disability Statistics Abstract 3
Activities vary by nature of
assistance. For the activity of
walking, people who experience
difficulty are most likely (42.9%) to
be assisted by special equipment
For the self-care activities of bathing,
dressing, toileting, transferring from
bed or chair, and feeding, the most
common form of help comes from
others.
munity. two-thirds (64.4%) of
people with difficulty are assisted
by others, while one-fourth
(26.1%) do not get around at all.
To summarize, people are most
likely to use equipment when walking is difficult, are most likely to be
helped by others when self-care is
difficult, and are most likely not to do
home management and community
activities at all when they are difficult
In bathing, dressing,
toileting, bed or chair
transfer and feeding,
people are most likely to
be aided by others
_
^
.
Othar types of aMlstance
m
Other types of assistance include
using special equipment and receiving formal assistance such as home
care and community services
(Figure 2). About 5.3 million
people with a difficulty use assistive
equipment, most often walkers,
canes, and crutches, grab-bars and
railings, seat in shower or tub, and
When continence is. difficult,
people are not likely to be assisted.
About 60 percent of people with
difficulty feeding themselves get
help from others. However, one in
five (21.4%) are unable
to feed themselves, even
FIGURE 2. Common
with aid. In using the
telephone, one-fourth of
Equipment
people with difficulty are
Walker, cane, crutches
not assisted, two-fifths
Grab-bars, railings
get help from others, and
Seat in shower or tub
a third are unable to perWheelchair
form the activity at all. In
Any equipment
managing money, people
Home care
either rely on another
Housework
person for assistance or
Bathing
don't handle money at
Nursing or medical
all. For the home and
Meals
Any home care
community activities of
Community services
managing money, shopSpecial transportation
ping, preparing meals,
Goods/cashfromothers
and doing light houseVisits senior center
work, half or more of
Meals in day care center
people with difficulty are
Any community service
unable to perform these
T
0
activities themselves,
even with assistance. In
getting about the corn-
A
wheelchairs.
About 15 percent of people with
difficulty receive home care, and 21
percent receive community services.
Assistance most frequently obtained
through home care includes house.
w o r k
b a t h i n g >
n u r 5 i
o r
r n e d i c a i i
A b o u t One p e r s o n in seven
w h o experiences difficulty
receives homecare, and
.
one in five receives commur
H'ty Services
—
and meals. The most frequently
used community services include
special transportation, goods or cash
from other than family or friends,
senior center visits, and meals
obtained through a day care center.
types of assistance in basic life activities
1
— i
'
1 '
1 •
r
1,000 2.000 3.000 4,000 5,000
Number of people (in thousands)
Source: National Medical Expenditure Survey Round 1.
6,000
�S N BV:
ET
A Disability Statistics Abstract
TABLE 2. Nature of assistance in basic life activities
Performs activity
With assistance of
Persons with
any difficulty
(in lOOO's)
With difficulty
but without
assistance
Type of activity
Walking
Self care (ADL)
Bathing
Dressing
Toileting
Bed or chair transfer
Continence
Feeding oneself
Any ADL or walking
Community and
home management (IADL)
Using the telephone
Managing money
Shopping for personal items
Getting about the
community
Preparing meals
Doing light
housework
Any IADL
Special
equipment
only
Other
persons
1
"Percent distribution
Unable
to perform
activity
J
3.512
13.0
42.9
26.8
3.818
2,547
1,554
2,902
1,849
561
5,927
13.5
16.4
11.5
26.7
85.9
13.7*
NA
13.1
0.8*
22.8
16.5
4.1*
6.8*
NA
73.4
82.7
52.1
48.4
10.0
58.1
NA
NA
NA
13.7
8.2
NA
21.4
NA
1,689
2,580
4.503
27.1
6.7
4.2
NA
NA
NA
38.5
44.1
40.6
34.4
49.3
55.2
5,591
3.157
7.4
8.5
NA
NA
66.4
31.3
26.1
60.2
4.577
7.850
9.9
NA
NA
NA
38.5
NA
51.6
NA
17.2
NA - Not Applicable
* Estimate has low statistical re'iabdity-stwdard error e*£eeds 30 percent of estimate.
(1) Inclydcs some persons who use equipment and are assisted by others.
(2) Categones are mutually exclusive and distribution sums to 100.0 percent
Source: 1987 National Medical Expenditure Survey Round 1: authors' original tabulationsfrompublic use tapes.
U.S. civilian noninstitutional populabor..
Data source
Data are fronr, the National Medical
Expenditure Survey (NMES), a national
probability sample of civilian noninstitutional population and persons in nur sing
homes and facilities for the mentally
retarded. Data sources are: 1. LaPlante,
M. P. (1991). Recent estimates of the
demand fur and supply of pci bunal
assistance: data from the 1987 National
Medkal Expenditure Survey (NMES).
Paper presented at the Annual Meeting of
the Society for Disability Studies, June;
2. Leon J. and Lair. T. (1990). Functional
status of the noninstitutionalized elderly:
(grant #H133D00006). Written by
Estimates of ADL and IADL diflicuttes
Mitchell P. LaPUnte, Ph.D. and Karen S.
(NMES Research Findings 4); 3. Short. P. Miller. M.Ed. Layout by Shawn E. Miller,
ALeon,]. (1990). Use of home and
M.Ed. Dorothy P. Rice, Sc.D. and Ida VSW
community services by persons ages 65 and Red, M.S.L.S. provided useful comments.
This abstract is one of a ierie» pr^wnting inolder with functional difficulties. (NMES
formation on disability in the US. Statistics preResearch Findings 5).
sented are subject to both sampling and nonCredits
The Disability Statistics Abstract series is fampling error. Ertimatei with low stautieal
reliability (standard error > 30% of the estiproduced by the Disability Statistics Promate) are flagged with an astenik. A compariD
gram, Institute for Health & Aging, School
sons mentioned are statisiiulty sigitiSiam at the
of Nursing. University of California, 201
.10 level of significance or better unless noted.
Filbert Street, Suite 500, San Francisco. CA Comparisons and relationships discussed may
94133-3203, with funding from NIDRR
be affected b/ other unanalyzed factors.
�Recent Estimates ofthe Demand for and Supply of Personal
Assistance:
Data from the 1987 National Medical Expenditure Survey
(NMES)
Mitchell P. LaPlante, Ph.D.
Institute for Health & Aging. N631Y
School of Nursing
University of California
San Francisco. CA 94143-0612
(415) 476-9485
Paper presented at the Annual Meeting of the Society for
Disability Studies, June, 1991, Oakland, CA.
�Table 1. Number of Persons Who Have Difficulty or Receive Assistance in Activities of Dally Living Because of
Chronic Health Conditions, by Type of Activity, Nature of Assistance, and Age: United States, 1987
Ages 5
Type of activity and
nature of assistance
and older
0-17
18-44
S5-M
(SJi
7544
85+
5^4
65-f
Number of penons in thmamvli
AH persons
237,890
63,900 101,609
22,427
2Z046
14*66
8,750
2^74 209,981
27,909
Walldng
Docs with difRcuhy only
Docs with equipment only...
458\
1,508I
Does with equipment and hftlp
512§ 6 ( V 16 •
Does not do even with assistance-.
604
90*
Total
_ 3,512.;
84*
129
72»
47*
103
436
Bathing
Does with difficulty only.-...
Does with equipment only
Does with help only...
Does with equipment and hiip
Total.—
_
77*
56*
225
123
481
_
Does with help only.
„
16*
430j
5 1 6
x\>499 J V 1 2 »
1,923'
77'
679 J
151
3,818
r
58*
82*
105
53*
16*
314
82*
249
41 *
74*
74*
520
113
333
72*
122
169
806
94*
471
62*
131
84*
842
28»
224
227
477
60*
236
69 *
190
118
234
501
1,360
234
1,031
194
322
371
A152)
28*
17*
132
28*
205
100
83 *
212
93*
488
175
109
381
192
858
93*
148
526
204
971
43*
75*
335
211
664
205
168
680
272
1,325
311
332
1,243
607
2,492
25 *
103
4»
412
31 •
550
85*
8*
417
35*
546
32»
3*
296
10*
341
199
6*
825
81*
1,110
220
16*
1,125
77*
1,437
Dressing
Does with difficulty only
—
418
Does with equipment only
—
21 •
—
Docs with help only—
1,950\ A144
Does with equipment and help
157 ) p
3«
2^47
147
Total
308
31 *
410
157
17*
200
103
6*
216
29*
354
Using the toilet
178
Docs with difficulty only
Does with equipment on]y_„ —
355
473
Docs with help only.—.
336
Does with equipment and help
213
Does not do even with assistance....
Total
-.. 1,554
48*
25'
100
26*
23*
222
1312*
21 •
25*
12*
82*
15 •
64*
34*
32*
14*
159
48105
75*
62*
62»
353
34*
83*
100
80*
40»
338
19 •
65*
94 •
8323*
284
76*
101
203
110
89»
579
102
254
270
226
124
975
94*
40*
122
100
102
185
48*
31 *
467
205
105
154
74*
72*
609
ISO
115
193
106
44*
607
80»
97*
121
89'
32*
419
342
164
543
127
91*
1,266
435
317
467
269
148
1,635
216
12*
31 •
259
260
34"
66*
360
404
16*
41 *
461
345
15*
16*
376
580
12*
61 •
653
1,009
'65*
123
1,197
11 *
•—
38 *
4*
—
52*
34*
7*
63*
1938*
161
8*
10*
30*
—
13*
61 *
17*
19*
—
•- 21*
47*
160
4«
3'
40*
29*
95*
244
58*
16*
140
22*
80*
316
r
Getting In & out of bed or chair
776
Does with difficulty only
480
Docs with equipment only
_
Docs with help only
—
396/
Docs with equipment and help
239
Docs not do even with assistance...
Total
— 2,902
Continence
Docs with difficulty only
Does with equipment only...
Docs with help only.Total...-
1,589
—
76 *
— - IS^"
1,849
Eating
Does with difficulty only
._.
Docs with equipment only
Docs with help only._
Docs with equipment and help
Docs not do even with assisUnce....
Total
_
„
48*
" 27 •
40'
115
147
21 *
37 •
19 •
15 •
70*
199
56*
36*
459
86»
169
17 •
103
177
77»
38'
8'
15'
55'
4•
9*
270
110
5*
114
66*
5*
21 •
17*
25*
94*
43
4*
^4026
120
561
70
Source: Natiotul Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statistical reliability—standard error exceeds 30 percent of estimate.
�Tabic 2. Percent Distribution of Persons Who Have Difficulty or Receive Assistance In ActiviHa of Dally Living
Because of Chronic Health Conditions, by Type of Activity, Nature of Assistance, and Age: United States, 1987
Agtgnmp
Type of activity and
nature of assistance
Ages 5
older
0-17
18-44
45*4
55-64
65-74
85+
5-64
65+
100.0
100JD
100.0
Percent distribuHo
All persons
00.0
Walking
Does with difficulty only
Does with equipment only
_..
Does with help only
Does with equipment and help
Does not do even with assistance...
Total...
„.
100.0
10O.O
100.0
100.0
100.0
0.2
0.6
0.2
02
0J
1.5
0.0 *
0.0*
0.0*
0.1*
0.1 •
0.1 •
0.1
0.1 •
0.0* *
0.1
0.4
•
0.4*
OS
0.2*
0.1*
14
0.4*
1.1
0.2*
0.3 *
0J*
2.4
07
2J>
0.4*
0.7
1.0
4.8
02
0.2
0.8
0.4
1.6
0.0*
0.2
0.0*
02
0.1 •
0.1 *
02
0.1
0£
axon-
OS
0.4*
1.0
0.4*
22
02
0.0 •
0.8
0.1
1.1
0.1 *
—
03
CO*
0.4
ai •
—
0.2
0.0*
02
Using the toilet
Does with difficulty only
Does with equipment only.... „ . .,.
Does with help only
.._
Does with equipment and help
Docs not do even with assistance....
Total
_
_
0.1
0.1
0.2
0.1
0.1
0.7
0.0*
0.0*
0.1
0.0*
0.0*
02
0.1 *
—
0.1 *
0.0*
0.1 •
02
Getting in A out of bed or chair
c
Does with difficulty only.-.—...
Does with equipment only
Does with help only.—
._
Does with equipment and holp ..
Does not do even with assistance..Total
0.0
03
0.2
0.4
0.2
0.1
1.2
0.0
—
—
0.1 •
OJ) •
0.0*
0.1 •
0.1 •
„.„.
0.7
0.0*
0.1
0.1
0.8
laling
Docs with difficulty only
Does with equipment only.,.
Docs with help only.
Docs with equipment and help.
Docs not do even with assistance....
Total
0.0 »
0.0*
0.1'
0.0*
0.1
0.2
Bathing
Does with difficulty only...
„„
Does with equipment only
Docs with help orJy._.,
Does with equipment and help
Total
„
Dressing
Does with difficulty only
Docs with equipment only
Does with help only...
Does with equipment and help
Total
M
1 M
1.1*
5.4
0.7*
IJ
1.0*
9.6
1.2 »
10.0
2.6 •
3.0*
52
22.0
0.6
OA
37
0.7
12
U
7.7
1.0
0.6
Z3
1.1
5.1
1.1 *
1.7
6.0
2J
11.1
1.9*
3J*
147
9J
29.2
0.1
0.1
0J
0.1
Oi
1.1
\2
4J
22
t3
OS
0.0*
1.0
0.1*
1.6
0JS
0.0*
2.4
02*
33
IJ)*
0.1*
1.4*
0.1*
13J)
0.4*
15J)
0.1
0.4
0J) *
0J
Oi
0.1*
LD
0J*
5.1
0.1 •
0.4*
0.1 *
02*
02*
0.1 •
0.1 *
0.7
0J*
0.6
0.4*
0.4*
0.4"
2.1
0.4*
OS*
1.1
0.9*
0J*
3.9
4.1 •
3.6*
1.0*
12.5
0.0*
0.0
0.1
0.1
OJJ*
0J
0.4
0.9
1.0
0J
0.4
35
0.0
0.1
0.0*
0.2
0.1*
0.0*
OS
0J)
0.4*
02
OS
0.0*
0.0*
12
0.0
OS
OS
0.8
0.2*
0.1 •
2.1
0J)
12
0.6
0.9
0.4*
0.4*
3.6
0.0
1.7
IJ
12
12
OS*
6.9
0.0
3.5*
4.3*
5.3
3.9*
1.4*
18.4
0.0
02
0.1
0J
0.1
0.0*
0.6
0J)
1.6
1.1
17
1.0
0J
5.9
02
—
0.0*
1.0
0.1 *
0.1 *
1.2
IS
0.2*
0.4*
oi
QS
—
0.0 *
05
•
• 2.1 ••
4.6
15.2
02 *
0.7*
OS*
0.7 •
5J
• 16J
OJ
0.0*
0.0*
- 0.3
3.6
07'
0.4
4.3
0.0*
—
0.1*
—
0.0*
0.1 •
0.0 •
0.1 *
0.1*
—
—
02 *
0.0*
0.2 •
0.0*
0.0 •
0.1
0.0'
0.0*
0.1
0.2*
0.1 •
0J
0.1 •
0J*
1.1
0.6
0.1 •
0.9
—
0.7
0.1 •
0.9
ai*
0.1 •
ai •
9
4J
0.4*
6.2
0.6*
is*
ai
02
0.1
0.1
ai
OJO*
Continence
Docs with equipment only
Docs with help only
Total
-._
-
0.0*
0.2
.
0.1 •
—
0.0*
0.1 •
0.2*
0.0*
0.2*
Source: National Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statistical rcliabilUy—standard error exceeds 30 percent of estimate.
oo . *-
0.4'
0.1 *
02*
1.0
0.1*
0.1 *
—
0.1 *
07*
0.7*
—
2.1 •
0.1 •
IJ*
4.2*
�Table 3. Percent Distribution by Age of Persons Who Have Difficulty or Receive Assistance In Activities of Daily
Living Because of Chronic Health Conditions, by Type of Activity and Nature of Assistance: United States, 1987
******
Type of activity and
nature of assistance
All
»ges
0-17
18-44
4S-54
55-64
65-74
75-84
85+
044
65+
88J
11.7
48.9
Pervent distnbutim
100.0
AH persons
26.9
417
9.4
93
7.1
3.7
li)
12.7*
5.4 •
24.4
10.4 •
ts
17.9 •
163
93'
143 •
123*
14.8
24.7
211
16.7 •
23.8
28.0
23.0
203'
31.2
14.4 •
25.6
13.9'
24.0
6.1 •
15.1
14.0*
133 •
195
143
54.9
37.1
38.7
38.7
51.1
68.4
45.1
619
61.4
61.3
Walking
100.0
100.0
100.0
100.0
Does with equipment and help
Does not do even with assistance.... 100.0
100.0
Total
-
—
1.1 •
4.0*
3.1 •
6.8'
2.6*
18.3 •
8.6
16.7 •
92' 17.1
12.4
Bathing
Does with difficulty only
_
Does with equipment only _
Does with help only
Docs with equipment and help
Total
100.0
100.0
100.0
—
14*
5.8
3.1 •
4.0
14.9*
11.2*
11.7
14.0
116
5.4*
3.4*
6.9
32*
5.4
19.4
16.6*
11.0
10.6 *
118
33.9
21.8
19.8
21.8
215
18.0*
29.7
27.4
237
25.4
8.3*
15.0*
17.4
24.0
17.4
39.7
33.7
35.4
30.9
34.7
60.3
663
64.6
69.1
65.3
100.0
100.0*
100.0
100.0
100.0
—
—
7.4
1.9 •
5.8
16.7*
—
15.8
19.7*
16.1
6.0*
—
8.1
10.8*
7S
24.6
28.6*
11.1
185*
13.9
244
19.0*
21.1
19.7*
21.6
203*
38.1*
21.4
213*
21.4
72'
143*
15.2
6.4*
13.4
47J6
284*
413
51.6 *
434
516
761*
57.7
49.0*
56.4
Using the toilet
Does with difficulty only
Does with equipment only
Docs with help only...—
......
Does with equipment and help
Does not do even with assistance...
Total
„
-
100.0
100.0
100.0
100.0
100.0
100.0
—
—
10.1 •
8.0*
18.8*
7.4
27.0*
7.0*
21.1
7.7*
10.8*
14.3
7.3*
3.4*
4.4*
7.4'
5.6*
S3*
8.4*
18.0*
72*
93*
6.6*
101
27.0*
294
15.9*
29.1*
22.7
19.1 •
23,4 *
21.1
23 A*
18.8*
21.8
10.7*
18.3 •
19.9 •
24.7*
10.8 •
18.3
417285
419
317
414*
373
573
715
57.1
673
58.2
617
Getting In tc out of bed or chair
Does with difficulty o n l y — —
Docs with equipment only
Docs with help only......
..
Does with equipment and htip
Docs not do even with assistance^..
Total —...
100.0
100.0
100.0
100.0
100.0
100.0
—
—
3.7*
4J*
63*
14*
18.9
4.4*
19.7
14.1 *
15.1*
15.8
111*
83*
111
1.0*
93
12.9
213
183
111 *
13.0*
16.1
26.4
213
151
18.7*
30.1*
21.0
193
24.0
19.1
264
18.4*
20.9
103*
20.2*
110
225 •
13.4*
14.4
44.1
341
53.8
311
38.1*
43.6
56.1
66.0
461
67.9
61.9
563
5.4*
—
97*
5.6
104
—
4.3*
9.6
6.9
—
17*
6.2
13.6
15.8*
16.8*
14.0
16.4
44.7"
35.9*
195
25.4
21.1 *
77 3*
24.9
21.7
19.7*
8.7*
203
365
15.8 •
337*
353
635
855"
66.8
64.7
—
—
133 '
—
12-5 '
9.8*
5.2*
—
22.0*
—
2D.8 '
16.8 *
63*
553*
5.7*
—
—
7.7 '
14.3*
—
117 •
15.4*
—
93*
44.2*
18.4*
21.0*
73.1*
31.7*
28.7
10.4*
263*
10.0*
211 *
24.7 •
553*
53.3
15.4*
333*
435
753*
42.1*
46.7
84.6"
66.7*
563
Dressing
Does with difficulty only
Does with equipment only....Does with help only
Does with equipment and h«lp
Continence
Does with difficulty only
Does with equipment only
Does with help only—
Total-—
~ 100.0
IttuO
.
100.0
100.0 •
- 100.0
.... 100.0
Ealing
Does with difficulty only
Does with equipment only...
Does with help only
Does with equipment and help Does not do even with assistance....
Total
100.0*
100.0"
100.0
100.0*
100.0
100.0
its*
Source: National Medical Ex penditure Survey—Household Survey, Round 1.
• Estimate has low statistical reliability—standard error exceeds 30 percent of estimate.
10.8*
10.9*
15.7*
115*
241*
16.9*
31J6
�Tabic 4. Number of Person Age 18 and Older Who Have Difficulty or Rccdve Assistance In Instrumental Activities of
Dally U ving Because of Chronic Health Conditions, by Type of Activity, Nature of Assistance, and Age:
United States, 1987
Type of activity and
nature of assittance
All persona
Ages 18
k older
»-•—/'
>-l7
Usfag the telephone
Does with difficulty
458
Does with help..
651
Does not do even with assistance... 581
Total
1,689
Handling money
Does with difficulty
__. 172
Does with help
1,138
Does not do even with assistance— 1,271
Total „
_
2580
Shopping
Docs with difficulty.—
187
Does with help..™.
1329
Does not do even with assistance-.. 2,487
Total..._
4303
45-54
101,609
173,990
18-44
22.427
54'
71 • •
109
234
55-64
7544
85+
65-74
Number pf persons in thtnumb
22.046
16,886
8,750
1844
2,274 146.081
65+
27,909
23*
35*
6*
64»
40»
76*
38*
155
98*
126
120
344
155
188
130
473
87*
155
178
421
118
182
153
452
340
469
428
1,237
N-ANJL
20»
157
277
454
13 •
89*
56»
159
15*
131
65*
210
61 *
233
185
480
45*
287
297
628
18*
241
391
650
48*
377
398
823
124
761
873
1,758
N.A.
NJL
NX
N~A.
23'
320
256
599
18 •
193
109
320
11 »
240
260
511
495
999
47*
408
690
1,145
22*
230
677
928
52*
753
626
1,431
135
1,076
1,861
3,072
NJL
27.
283
48»
358
54*
428
162
644
81 •
757
347
1,185
111
1,012
400
1523
204
U70
343
1,817
212
2,444
1,118
3,774
83*
175
413
672
NA.
NJi.
N-A.
N.A.
N.A.
Getting about the conununity
Does with difficulty
„.
416
Docs with help.....
_
3,713
Docs not do even with assistance— 1,461
Total
— 5591
NX
N-A.
123
558
133
815
Preparing meala
Does with difficulty
267
Does with help
989
Does not do even with assistance... 1,901
Total
3,157
NX
NA.
N.A.
N-A.
29»
282
200
512
15 •
111
96*
222
46*
83*
205
333
Doing light housework
Docs with difficulty
453
Does with help
_.
— 1,762
Does not do even with assistance.... 2562
Total
4577
NA
NA
NA
NA
56*
395
269
720
14 •
218
139
370
96*
244
324
664
66*
438
183
374
537
1.094
Source: National Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statistical reliability—standard error exceeds 30 percent of estimate
20*
675
371
1,066
70*
227
507
804
25*
110
480
615
90*
476
501
1,067
1,400
2,090
65*
406
595
1,066
40*
123
499
663
165
858
731
1754
288
904
1,631
2,823
178
513
�Table 5. Percent Distribution of Persons Age 18 and Older Who Have Difficulty or Receive Assistance In Instrumental
Activities of Daily Living Because of Chronic Health Conditions, by Type of Activity, Nature of Assistance, and AgeUnited States, 1987
Age groitp
Type of activity and
nature of assistance
Ages 18
fc older 0-17
45-54
1844
55-64
65-74
75-84
85+
1844
65+
Percent dhtnbutitm
All penons
ma
NA.
03
0.4
0.3
1.0
NA
NA
NA
NA
0.1 •
0.1 •
0.1
0J
0.1
0.7
0.7
15
NA
NA
NA
NA
0D
100.0
100.0
10O.O
100.0
100.0
100.0
100.0
100.0
Using the telephone
Docs with help
Does not do even with assistance...
Total
_
—
Handling money
Does with difficulty
Does not do even with assistance..
Total
- -
Shopping
Does with difficulty
_ . 0.1
Does with help—
1.1
Does not do even with asslt;tance._ 1.4
Total
2.6
Getting about the conununity
Does with difficulty
0.2
Does with help
_.. 11
Docs not do even with assistance.... 0.8
Total
37
0.1 •
0.0 •
03 •
02*
03*
02*
0.7
0£ *
07
0.7
10
15
2.1
15
S.4
3.8 •
6.8
7.8
185
0.1
0.1
0.1
03
17
17
15
4-4
0.2
0.3
0.4
0.1*
0.4*
02*
0.7
0.1 •
0.6
0.3 •
1.0
0.4 •
1.4
1.1
25
05*
33
3.4
77
0.8*
10.6
17.2
28.6
0.0 •
03
0.3
04
0.4
17
3.1
63
NA
NA
NA
NA
0.0'
03
03
04
0.1"
0.9
05
1.4
OJO*
1.1
17
23
0.4*
16
19
5.9
05*
47
7S
13.1
1.0 •
10.1
29.8
40.8
0.0*
05
0.4
IJJ
05
23
67
11.0
NA
NA
NA
NA
0.1
05
0.1
0.8
0.1 •
13
0.2 •
1.6
0.2 •
IS
07
2.9
05 •
45
11
7.0
13
114
4.6
17.4
0.9 *
297
163
46.9
0.1
0.9
0.2
17
04
84
4.0
135
#
Preparing meala
Docs with help
Docs not do even with assistance....
Total
_
_..
0.2
0.6
1.1
1.8
NANA
NA
NA
0J0*
0.3
0.2
05
0.1 •
05
0.4 •
1.0
0.2 •
0.4'
0.9
15
05*
1.0
14
4.0
0.8*
2.6
5.8
97
1.1 •
4.8
21.1
27.0
0.1*
03
05
0.7
0.6
13
5.0
75
Doing light housework
Does with difficulty
Does with help.
Does not do even with assistance...
Total
_ _
„_
03
1.0
1.4
2.6
NA
NA
NA
NA
0.1 •
0.4
03
0.7
0.1 *
1.0
0.6
1.6
0.4 •
1.1
15
3.0
1.1
12
37
65
0.7*
44
64
112
1.8 •
5.4
21.9
29.2
0.1
0.6
05
1.2
1.0
37
54
10.1
Source: National Medical Iixpenditure Survey—Household Survey, Round 1.
* Estimate has low statistical reliability—standard error exceeds 30 percent of estimate.
�Table 6. Percent Distribution By Age of Persons Age 18 and Older Who Have Difficulty or Receive Assistance In
Instrumental Activities of Daily Living Because of Chronic Health Conditions, by Type of Activity and Nature of
Assistance: United States, 1987
Typ« of activity and
nature of assistance
All
»ges
0-17
18-M
45-54
55-64
65-74
75-84
85+
044
65+
Paeent distribution
All persons
100.0
N-A.
58.4
119
117
Using the telephone
Does with difficulty
—
Does with help...._
—
Does not do even with assistance.-.
Total...-
100.0
100.0
100.0
100.0
NX
N-A.
NA.
NA
11.8 •
10.9 •
18.8
13.9
5.0 *
5.4*
*1.0*
3.8*
Handling money
Does with difficulty....
Does with help—
—
—
Does not do even with assistanceTotal.—
100.0
100.0
100.0
10O.0
NA
NA
NA
NA
11.6 •
133
21.8
17.6
Shopping
100.0
Does with difficulty
100.0
Does with help
Does not do even with assisbince... 100.0
100JO
Total
NA
NA
NA
NA
Getting about the community
Does with difficultyDoes with help
Does not do even with assistance....
Total
100.0
100.0
100.0
100.0
Preparing meals
Does with difficulty
—
Does with help....
Does not do even with assislancc....
Total—
Doing light housework
Does with difficulty
Does with help
Does not do even with assistanceTotal
-
9.7
5.0
13
844
16.0
8.7 •
11.7 •
64 »
9.2
21.4 •
19.4
20.7
20.4
33.8
28.9
214
28.0
19.0*
234
30.6
24.9
254
28.0
263
264
74.2
710
73.7
731
7.6*
74 »
4.4 •
6.2
8.7 •
115
5.T
8.1
355 •
205
144
184
26.2*
25.2
23.4
24.3
105*
211
30.8
25.2
27.9*
311
313
315
711
66.9
68.7
68.1
123 •
175
103
133
9.6 •
10.6
4.4
7.1
5.9 •
13.1
105
113
353 •
23.9
19.9
212
25.1*
223
27.7
25.4
114*
116
271
20.6
274*
411
251
314
721
58.8
74.8
681
NA
NA
NA
NA
29.6
15.0
9.1
14.6
65*
74
33 •
6.4
13.0 •
115
ll.l
113
195 •
20.4
23.8
211
26.7
273
27,4
271
45*
181
25.4
19.1
49.0
341
235
315
51.0
654
765
675
100.0
100.0
100.0
100.0
NA
NA
NA
NA
10.9 •
285
105
16.2
5.6 »
11.2
31.1 *
17.7
7.0
171 •
8.4*
10.8
105
213
261*
23.0
26.7
255
9.4*
11.1
251
19.5
33.7*
48.1
264
334
66.7
51.9
73.6
661
100.0
100.0
100.0
100.0
NA
NA
NA
NA
114 •
214
11.4
15.7
3.1 •
114
53
8.1
211 •
13.8
13.7
145
40.4
211
217
23.9
143*
23.0
251
233
8.8*
7D
21.1
145
36.4
48.7
30.9
383
63.6
513
69.1
61.7
5.0 »
21.7
Source: National Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statistical reliability—standard error exceeds 30 percent of estimate.
�OCU
Oi
Tabic 7. Number of Persons Using Assistive Equipment Because of Chronic Health Conditions, by Type of Equipment
and Afie: United $btesrf987
X.
Agi group
JL
»T
Type of equipment
ago
1M4
45-54
237,890 63,900 101,609
All persons
0-17
55-64 65-74 7S44
85+
hi umber of penons in Omsanis
22,427
3
Uses seat in shower or tub ^
I
31 •
186
58*
Uses grab-bars, railings ^
/
2
35*
179
Uses raisedtoilet/
j
15 •
g)
Lj Uses portable toilet-^
^
^
Uses Velcro fasteners
5
3'
46»
47'
33'
105
1
38«
22,046
8,750
(J5>
324
364
306
420
995
278
530
701
487
618
1719
248
111 ! 225
479
^©
I'"61 •
133
34'
212
®
41 •
90*
81 •
97 •
20*
63
2^74 te»^81 27^09
I
1
24*
47*
4*
71 •
187 j 130
4*
162
Uses feeding machine
Use* wheelchair S
7
35'
56*
239
56*
120
20 •
4
11'
250
43»
241
7
Uses telephone atnpli Rer
^Uses urination control device
22»
' *-
3*
/3
17 •
Uses any of the above devices /
26'
122
5»
465
347
255
226
178
437
100
15 •
5
Uses walker, cane, crutches
Uses colostomy bag
31'
11*
193
287
245
128
433
745
104
,2
620
412
1
543
33»
37*
16*
32*
25*
17* \
27*
72*
39*
20* \ 56*
711
111
,4
193
1^40
fdfALSource. National Medical Expenditure Survey—Household Survey, Round 1.
' * Estimate has low statistical reliability—standard error exceeds 30 percent of estimate. i»AN
531
J
10'
Uses ipedal dishes, utensiis
65+
16,886
47*
i, Uses protective underwear /
^64
71 *;
976
96*
12*
660
2^89
62 * 301
73*
\^64
131
367
,5
�Table 7a. Percent Distribution of Peraons Using Assfsrive Equipment Because of Chronic Health Conditions, by Type
of Equipment and Age: Uttltcd States, 1987
All
0-17
Typo of equipment
18-44
45-54
55-64
65-74
75-84
85+
044
65+
Pmtnt&trihtfion
All persons
100.0
100.0
100.0
100.0
100.0
100.0
100.0
100.0
100.0
1004
Uses seat in shower or tub
0.6
0.0 •
0.2
03 •
0.7
1.9
47
135
01
34
Uses grab-bars, railings
IS)
0.1 •
0.2
0.6
13
3.1
8.0
21.4
03
67
Uses raised toilet
03
0.0'
0.0*
0.2*
0.6
0.7
18
45
0.1
17
Uses portable toilet
03
0.0'
0.0*
0.2 •
03*
0.8
14
87
0.1
15
Uses Velcro fasteners
02
0.1 •
0.1 •
0.2 •
02*
05*
11
23'
0.1
0.9
Uses protective underwear
.03
0.1 -
0.1
0.0 •
0.4 •
0.6'
1.9
73
0.1
14
Uses special dishes, utensils
0.1
0.1 •
0.0 •
0.1 *
0.1 •
0.1 •
05*
1.1 •
Oi)
03*
Uses feeding machine
0.0*
—
—
Oil*
—
0.0 •
0.0 •
07*
on*
03*
Uses wheelchair
03
0.1 »
0.1
02*
OS
17
18
54
02
14
Uses waiter, cane, crutches
1.4
0.0 •
0.2
1.1
2:0
4.4
11.7
273
0.4
84
Uses telephone amplifier
02
—
0.0'
0.1 •
0.1 •
0.2 •
21
3.1'
0.0'
1.1
Uses colostomy bag
0.0*
Oi) •
—
• —
0.1 •
07 •
03*
07*
0J0*
03*
Uses urination control device
0.1
0.0 •
o •
.
o
00 *
0.1 •
0.4 •
0.4 •
0.9*
0.0*
05
Uses any of the above devices
2.2
02
05
15
3.2
63
0.8
111
Source: National Medkal Expenditure Survey—Household Survey, Round I.
* Estimate has low statistical reliability—standard error exceeds 30 percent of estimate.
174
419
�T>blc 8. Percent Distribution by Age of Persons Using Assistive Equipment Because of Chronic Health Conditions,
by Type of Equipment. United States, 1987
Agt group
Type of equipment
All
•g«
0-17
1844
45-54
55-64
65-74
7544
65+
0-64
65+
7.1
17
1.0
883
11.7
for" 219
25J
Percent istributim
All persons
"'Usesseat in shower or tub
100.0
263
9.4
13.1
100.0 ~
417
93
4.1 •
> SJ3
11.9
j 217
30.0
20.8
26.4
73.6
17.8
17.0
351
155
310
68.0
_ 310 _
19.6
wa.. -
' 2 1 . 6 ; 1 29.7./
703
''Uses grab-bars, railings —
100.0
15'
7.7
•/Uses raised toilets
100.0
11 •
6.7*
5.4*
l/Uses portable toUet <-
I00D
03*
5.0*
5.1 •
9.2*
20.1
Uses Velcro fasteners —
100.0
9J*
21.3*
95*
8.3*
18.2'
21.9
113*
48.4
513
' / u s e s protective underwear -~
100.0
10.7*
93
15*
112*
14.7*
245
26.9
34.1
66.0
Uses special dishes, utensils -
100.0
175*
15.8 •
7.7*
102 •
112*
24.0*
133*
51.0
493*
Uses feeding machine
100.0 •
117.4 *
17.4*
17.4*
473 *
512 *
473*
100.0
51*
111
4.0*
18.0
126.8
219
11.9
-38.4 . _ 6 I 4
100.0
04*
73
71
13.0
a.
30.7
18-6
71.7
Uses telephone amplifier -—
100.0
—
IS*
6.1 *
9.1*
101*
533
193*
17.1 •
83.1
Uses colostomy bag
100.0'
31*
—
—
171*
34.4*
265*
183*
215*
785*
Uses urination control device —
100.0
9.1 *
4.3*
17*
14.4*
385*
70S*
10.7*
29.9*
70.1
Uses any of the above devices
100.0
13
9.1
65
13.4
21.4
28.9
183
31.3
68.7
•/uses
wheelchair **
^Usos walker, cane, crutches -*
Source: National Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statistical reliability—standard error exceeds 30 percent of estimate.
�Table 9. Number of persons with IADL/ADL Difficulty, by Age and Type oi Community Service Received:
United States, 1987
Ajt group
All
1844
0-17
Typ»of equipment
45-54
55-64
65-74
75-84
8S+
0-64
Number of persons in ihoumnds
All persons with difficulty
9511
195
1524
848
1524
1,993
2J15
1,310
3^93
5^19
AD persons getting help
7^98
178
1,196
620
926
1,463
1,778
1,136
2,921
4377
—
—
108
171
Visits senior center regularly
433®
»
60*
94*
60*
—
56*
373
Visits other day care center
87*
4*
36 *
15*
—
3*
Has meals in any day care center
429©
23*
19*
12*
49*
90*
124
Receives meals from outside
366^
—
2*
—
36*
94*
136
26*
46"
regularly
Service organization phones or
visits person
Uses special transportation
Receives any community seirvice
2550
6 9 (P
9
1,995 Q
28*
114
38*
328
43*
74*
181
41 *
3'
45*
86*
43*
125
161
137
104
87*
256
433
576
373
S3*
216
327
98*
5*
91 •
103
32*
298
401
612
1383
1
Gets goods or cash from people
other than family /friends
6 8 (P
0
13*
111
50*
47*
107
Source: National Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statisHcil reliability—standard error exceeds 30 pexconl of estimate.
171
108
1 21
2
-
�Tabic 10. Percent Distribution by Age of Persons with IADL/ADL Difficulty, by Type of Community Service
Received: United States, 1987
Agt group
Type of equipment
All
ages
18-44
0-17
45-54
55-64
65-74
7544
85+
Percent iiitribuiicm
All persons with difficulty
Persons getting help
100.0
100.0
100.0
100.0
100.0
1003
100.0
100.0
76.7
913
785
73.1
69.9
73.4
763
86.7
4.5 •
5.4
7.4
71 •
15*
* -
75.0 4377.0
-
Visits senior center regularly
—
2.1 •
i4'
13 •
—
01 •
11 •
—
1.4 •
373.0 *.',
Visits other day care center
regularly
0.9 *
Has meals in any day care center
4 5 g ) 11.8*
1.2 »
1.4 »
3.7 •
45 •
5.4
8.7
16
Receives meals from outside
3.8(9 -
0.1 »
—
17*
4.7 •
5.9
75*
1.0 * 328.0 C.
Service organization phones or
visits person
2.7(1)
17 •
0.4 •
10 •
13*
3.9 •
33*
1.9* 1813^.1
5.6 •
5.1 •
9.4
8.1
SS
7.9
7.7
(ftxj) * 272 •14.2
103 •
193
21.7
24.9
285
15.7
1383.0
73
5.9 •
5.4
7.4
81
5.7
387.0
Uses special transportation
Receives any community ^srvice
Gets goods or cash from people
other than family/friends
u*
(fS) *• 23.1 •
6.4(1) 6.7 •
3.5 •
Source: National Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statistical reliability—standard error exceeds 30 percent of estimate.
32.0 • C
327.0 £
401.0 7.
�Tabic 11. Persons with IADL/ADL Difficulty Receiving Home Care, by Age and Type of Help Received:
United States, 1987
Agtgmy
All
»8"
Type of equipment
0-17
1M4
45-54
55-64
65-74
7544
85+
0-64
65+
Number of persons in thousands
All person* with difficulty
<
Help Is with bandage-dressing
1524
5*
848
11-
1324
1,993
2315
U10
3,893
18 •
31 •
36*
21*
34*
9*
33*
59*
56*
29*
16*
24*
—
—
96*
64*
122
Help is with oral medication
16*
Help is with injection
—
—
—
Help is with nursing/medical
53'
33»
33«
Help is with bathing
27»
10 •
24 •
71*
197
Help is with dressing
27»
7»
11 •
59*
120
Help is with toileting
13*
4»
—
21*
Help is with getting up/down
10 •
4*
Help is with feeding
10*
—
Help is with walking across room
17"
—
Help is with phone
—
Help is with expenses
26»
Help is with shopping
42*
Help is with driving/transportatiot
102
111
5^19
87*
147
40*
261
61 *
379
83*
45*
262
54*
45*
17*
119
43*
62*
46*
21*
151
5*
25*
28*
10*
4*
33*
47*
46*
21 •
—
6*
16*
22*
36*
6*
74*
—
i*
15*
13*
13*
30*
42*
7*
27*
65'
93*
83*
76*
241
32*
3*
27 »
61 •
68*
66*
63*
196
Help is with meals
51 •
7*
13*
63*
71 »
289
Help is with housework
62»
25*
72*
7»
—
57*
127
125
101
151
271
176
159
597
Gets any home health service
114
65*
137
327
453
273
319
1,054
Duration of home care, in hours
4.2
16
3.2
14
3.9
43
3.2
3.6
Source: National Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statistical reliability—standard error exceeds 30 percent of estimate.
�Table 12. Percent Distribution of Persons with 1ADL/ADL Difficulty Receiving Home Care, by Type of Help
Received: United States, 1987
Ag* group
All
age»
Type of equipment
W7
18-44
45-54
55-64
65-74
75-84
85+
0-64
65+
1,310
3393
5,619
Number of persons, tn tkauwuli
All persons with difficulty
195
524
848
1324
1,993
1315
" P'trcmt distribution
Help is with bandage-dressing
03 •
13*
1.4 •
1.6*
13*
1.6*
0.9*
15*
Help is with oral medication
1.0 •
05*
0.7*
1.7 •
15*
4.3*
0.7*
2.6
Help is with injection
—
—
—
0.8*
13*
—
—
07*
Help is with nursing/medical
35 •
3.9*
25*
5.1
4.1 *
4.9*
3.1
4.6
Help is with bathing
1.8'
1.2*
1.8*
3.6*
85
85
1.6*
67
Help is with dressing
13*
03*
03'
3.0*
5.2
63*
11*
4.7
Help is with toileting
0.9*
05*
—
1.1 •
13*
3.4*
0.4*
11
Help is with getting up/down
0.7*
05*
05*
12 •
17*
35*
05*
17
Help is with feeding
0.7*
—
—
03*
1.1 *
11*
03*
1.0*
Help is with walking across room
1.1 *
—
0.3*
1-7 •
10*
35*
03*
23
Help is with phone
—
—
05*
03*
1.0*
17*
07*
13*
Help is with expenses
1.7*
—
03*
0.8*
0.6*
1.0*
0.8*
0.7*
25*
0.8*
2.0*
3.3*
4.0*
6.3*
2.0*
4.3
2.1 »
0.4*
2.0*
3.1 *
2.9*
5.0*
1.6 •
3.5
3.3*
0.8*
1.0 •
3.2*
5.4
7.7
1.8*
5.1
4.1 *
2.9*
5.4*
7.6
117
13.4
4.1
10.6
75
7.7*
16.4
19.6
20.8
87
18.8
Help is with shopping
j
Help is with driving/transportatio
i
Help Is with meals
Help is with housework
Gets any home health service
I
1.5'
10.3
Source: National Medical Expenditure Survey—Household Survey, Round 1.
* Estimate has low statistical reliability—*landaid error exceeds 30 percent of estimate.
�-
DEC 21 '92 10:16 W R D INSTITUTE O DlSAEILITY/ !
OL
N
C A
\ /
rm FAX
P. 1/7
Fax Number AO?-
From: ^WnA
2 i^^QXio-^
WORLD INSTITUTE ON DISABILITY
510- 16th Street, Oakland. CA 94612-1502; 510-763-4100; FAX 510-76
�D C 21 '92 10: .IS W R D INSTITUTE O DISABILITY
E
OL
N
p.2/7
RESPONSE TO QUESTIONS REGARDING PERSONAL ASSISTANCE SERVICES
(PAS) FOR WORKING-AGE PEOPLE FOR THE LONG-TERM CAXE WORKING
GROUP
BY SIMI LTTVAK
Many of these questions cannot be answeredfromexisting data. These issues need to be
dealt with in more depth in tbe Task Force on Personal Assistance Services that Presidentelect Clinton will form.
•»
WHO NEEDS PERSONAL ASSISTANCE?
There are 9.6 million people of all ages and with all types of disabilities who need the
assistance of another person for personal maintenance, hygiene and household nuuntcnaoce
tasks, including 7.8 million non-mstitutionaUzcd people. L5 people in nursing homes and 3
million people in facilities, for people with mental retaidatioo. In addition there are
300,000 people with hearing impairments who use sign language or oral interpreters to
communicate with hearing people. The number of people with visual disabilities who use
readers and/or drivers is unknown.
1
3
HOW DO NEEDS DIFFER?
There has been no substantive research on whether or how age, gender, family status or
cognitive ability impacts peoples' PAS needs or preferences. What we do know from
experience is that in addition to differing in their capacities to perform daily life activities,
people who need personal assistance vary in their capacity to manage their assistance (see
figure 1). Management tasks include advertising, recruiting, screening, hiring, training,
supervising andfiringone's assistant People may need to complete IRS withholding forms
or verify hours of service as well as advocate for themselves when they have prnhlenu with
the system. There is no data available on the capacity nf people who use PAS to manage
all or some of these management tasks. Nnr u there data on peoples' capacity to leoro
these tasks or on how many people prefer not to do them. County managers of the InHome Supportive Services (11 ISS) Program in California, the largest and one of the oldest
PAS prosjams in the U.S., estimate that between 12 and 15% of the total IHSS population
needs a dosely supervised and monitored service from a provider agency. All others
manage well with independent providers that are hired by the disabled individual direcdy.
IHSS served 174,000 people of all ages («% over age d5) in 1992 who were SSI eligible or
medically needy.
The shape of figure 1 is merely a hypothesis. The number of people at the various levels
of management preference and capacity is a crucial issue for program planning and has a
major impact on program cost Many unproven assumptions about the impact of age and
disability on one's ability and preference for managing one's own services have shajid the
�DEC 21 '92 10:17 WORLD INSTITUTE O DISABILITY
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existing service system. Training individuals who need it, when theyfirstbegin receiving
services, may be costly. If they then "graduate" to being able to manage an independent
provider on their own, ihe cost savings may be tremendous and the levei of user oontrol and
empowerment may be very high.
WHAT Iii THE RANGE OF PERSONAL ASSISTANCE SERVICES NEEDED?
listed bdow are the range of PAS needed by people of all ages and disabilities. An
explanation of each item is appended Tor clarification (figure 2).
1. PERSONAL SERVICES
2. HOUSEHOLD SERVICES
3. CHILD AND INFANT CARB ASSISTANCE
4. LIFE SKILL SUPPORT SERVICES
5. COMMUNICATION SERVICES
6. SECURITY ENHANCING SERVICES
7. MOBILITY SERVICES IN AND OUT OF HOME
8. WORK-RELATED SUPPORT SERVICES
9. SERVICE COORDINATION
JO. ASSIfflWE TECHNOLOGY SERVIGBS
11. EMERGENCY SERVICES
12. PAS USER TRAINING
HOW IS ELIGIBILITY FOR PAS TYPICALLY DETERMINED?
PAS programs vary widely in the way in which they determine eligibility (litvak, cial 1987;
Litvak and Kennedy, 1991). Ninety-percent of all programs look at services needed in
deiermimng eligibility. Seventy-seven percent use some measure of functional ability as an
eligibility criteria. Though the exact nature of these criteria was not asked in our surveys,
iuformation fmm site visits and MIS data on file, indicates that there is no universal
measure like the Katz ADL scale that is routinely used by PAS programs. Physician's
recommendations, accessibility of the environment, cost of service as compared to
institutional care, availability offemilyand nursing home eligibility sine also considerations
for prognun eligibility. In addition most programs have income limiutioas as well Twentyone percent of all programs In 1988 limited services to those with incomes below poverty.
Another 19% limited eligbility to those with incomes up to 200% of poverty level and 21%
had" no Einits or used shding fee scales. The other 49% accepted- those with- incomes
between 200 and 300% of poverty. Programs also limit servicestoparticular age groups and
have limitation on the number of hours or the cost of services availablefromthe program.
All of these restrictions serve to limit the number of people who use the programs.
3
Given the existing services system, its restrictions on amount of service, its disincentives to
employment and nwrriage, its lack of uniformity around the country and concentration in
�DEC 21 '92 10:.17 WORLD INSTITUTE ON DISABILITY
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tbe most puyulotis and social consdoiu states, approximately 2 million people of all ages
and disablities hi the community and another 1.8 million in institutions and nursing homes
received some or all of their PAS needs with public funds in 1988.
HOW SHOULD ELIGIBrLTTY BE DETERMINED?
Any child or adult should be eligibile for PAS who: a) has a perman cut or temporary
physical, sensory, cognitive or mental impairment; b) has an impairment which substantially
limits one or more major life activities-, and c) requires personal assistance services. Tbe
term "irojur life activities" should be definttf to include every day tasks such as caring for
one's self, performing manual tasks, walking, seeing, hearing, speaking, breathing, learning,
remembering, concentrating, reasoning, infommtion and stimulus processing understanding,
and working.
Individusilfi who meet this criteria should be eligible for personal assistance services
regardless of this income. Any child or adult eligible for PAS whose income falls below
300% of poverty should receive such serviu» at no cost States may wish to charge eligible
persons whose incomes exceed 300% of poverty for some portion of the service they receive
based on a sliding scale, not to exceed more than 2% of their net income after disability
related expenses are deducted. No resource test should be applied to nonincome assets or
to spoused income of eligible individuals. Dependent children should be eligible based on
their own income and not that of their parents.
If these eligibility criteria were used, all of tbe approximately 10 million people living at
home and in institutions who need the assistance of another person would he eligible. To
•what extent and how many would actually demnnU publicly funded semces is unknown. The
demand will not reach 100% because many people prefertohave family assist themfora
variety oi reasons. Many do not want someone outside the family coming into their home,
othersfindthat the management of personal assistants is an onerous task, others do not
trust outsiders. A major limitingfectoris the lack of supply of attendants, particularly
reliable p>coplc williog to work for the current low wages and benefits. In such circumstances
and others paying the family either to manage or provide services may prove to be costeffective and obviate the need for costly homecare agency providers.
DOES TECHNOLOGY SUBSTITUTE FOR PAS?
This is not an either/or question. No research has been done on this issue. Technology can
reduce the needforthe assistance of another person with a particular task, but it can lead
to demandforassistance with other tasks.
It is possible within a particular home or a particular work site to design the environment
so the disabled individual is able to perform many tasks by him or henself. Bui when the
individuil leaves that location the technological adaptations do notfollow.It is possible for
some eirrironments to be designed so they are adjustable to individual variations in size.
�DEC 21 '92 10:18 WORLD INSTITUTE O DISABILITY
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P.5/7
Sweden has done innovative work on this for kitchens and bathrooms. However, we are far
from universal design in the environment as a whole in the VS.
Technolojgy m y also open up new areasforassistance. For example, a new ramp and
a
accessible door operation m y allow an individual to get in and out of the house unassisted,
a
but this m y open up more demand for PAS in accessing community services. In addition
a
a particular devise m y need positioning before it can be used and without that positioning
a
assistance, the technology m y be inaccessible. For example, a person who uses a
a
communication devise may need head gear with a pointer placed on her head in order to
use the technology.
1. World Institute on Disability and Rutgers University Bureau cf Economic Research
(1990) Ths nftftri for neraonal aaaiatance. New Brunswick, NJ: Rutgers University;
LaPlante, M. (1989) Disability in basic Efe aotivitiee across the life spaa Dteabilitv
statistics report. 1. San Francisco: Disability Statistics Program, Univereity of California;
Kraus & Stoddard maffl Chart book on dteabilitv In the us. Washington, D.C.:NIDRR.
2.
According to the Survey of Income and Program Participation (SJPP) there are 12.7
million people over 15 years old, with visual disabilities. Visual limitations are defined as
difficulty viewing ordinary print, even with corrective devices. There seems to be no data
available to ted us the number of people with visual disabilities who need assistance with
communication tasks, such as readers. Ittesafe to say that all need assistance with
reading printed and hand written materials, but some may utilize other media and
technology to read while others may require differing levels of reading assistance,
depending upon the nature of their occupations and life styles. The overlap between
those needing assistance with household and personal tasks and those needing reading
assistance is also unknown. One suspects it is high in the aging population. Finally one
could assume that people with visual disabilities who do not live where there is a good
transportation system will have need for drivers.
The National Center for Health Statistics indicates there are 21 million people with
hearing impairments. Of these approximately 300,000 are people who are "prelinguistically deaf', meaning they became deaf before the age of three. Approximately 1 /3
of these pieople are educated orally and, presumably, use oral interpreters. The other
200,000 people use sign language interpreters. Generally people who become hearing
Impaired later in life tend not to be proficient in either mode of communication and must
rely on real-time captioning and other technological solutions to their problems
communicating with hearing individuals. The overlap between those needing Sign
language interpreters and those needing assistance with ADLs and lADLs has not been
investigated.
S.Utvak, $., Heumann, J. & Zukas, H. (1987). Attending to America: Personal
assistance for independent living. Berkeley: World Institute on Dtsabity. Utvak, S. &
Kennedy. J. (1991) Policy issues affecting the Medicaid personal care servieee optional
benefit Appendices A ihrough D. Oakland: world institute on DteabDity.
�r g T ' - g - I B T i g W R D IISSTITUTE OS
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�D C £1 '92 10:21 W R D INSTITUTE O DISABILITY
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FIGURE 2
THE RANGE OF PERSONAL ASSISTANCE SERVICES NEEDED
1. PERSONAL SERVICES inclnding, those appropriateforcarrying our activities of daily
living in or out ofthe home such as, assistance with bathing and personal hygiene, bowd and
bladder care (induding catheterization), dressing and grooming, lifting and transfming, eating
(including feeding), giving medications and injections, tneastzual caie, opeating and maintaining
respirator/ equipment and the provision of assistive technology devises and services:
2. HOUSEHOLD SERVICES, including assistance with meal planning and preparation,
shopping, light housekseping, laundry, heavy cleaning, yardwork repairs and numtcnance;
3. CHILD AND INFANT CARE ASSISTANCE for eligible people with disabilities who are
parents, of children under 18 meant to assist them in carrying out the functions of parenting at
times wtusn they would typically do so if they did not have a disability (e.g. assistance with
diapering, feeding, lifting, or nansportiiig a child);
4. LIFE; SKILL SUPPORT SERVICES, including assistance with money management,
planning smd decision making including computer assisted directions, home management, nse
of mediation, following instnictions, positive behavior management, companion or roommate
services which provide regular supervision upto24 hourfordaily living, peer support, advocacy
and suppcrtforparticipation in social, community or other activates. These services assist the
individual lo acquire, retain, regain, improve, or execute the self-help, socialization,
dedsionmaking, and adaptive skills necessary to achieve and maintain independence,
productivity, and integration and to live successfully in his/her home and mainlain independence,
productivity and integration and to live successfully In his/her home. These services can include
training, prompting, cuing, support or substitute functioning;
5. COMMUNICATION SERVICES Including assistance with interpreting, reading, letter
writing and the use of communication devices, augmentative communication devices and/or
tdecommuaication devices;
6. SECURITY ENHANCING SERVICES including monitoring alarms or systems and making
or arrangingforperiodic contact in person and/or by telephone.
7. MOBILITY SERVICES IN AND OUT OF HOME including, escort and driving, and
assistance with public transportation.
8. "WOIRK-RELATED SUPPORT SERVICES including ongoing services to assist an
individual in perionning wurk-relaied functions necessary to obtain and retain work in an
integrated setting, andtofulfill the functions of a job and personal services on the job;
9. SERVICE COORDINATION induding assistance with recruiting, screening, referring and
managing personal assistants;
10. ASSISTIVE TECHNOLOGY SERVICES, including assistance with evaluating needs,
purchasb£, leasing or obtaining technology, selecting, designing, fitting, customizing, adapting,
applying, maintaining,repairingor replacing such devices, and training and technical assistance
for individuals with disabilities and their family and personal assistance where appropriate.
11. EMERGENCY SERVICES, including substitute or back-up serviceforany of tbe above
services ^ emergency basis and/or when the usual personal assistants are unable to provide
the service.
12. PAS USER TRAINING including age appropriate opportunities to learn to use and control
PAS efltelivdy.
o n
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,
�UNIVERSITY AT BUEFALO
STATE UNIVERSITY OF KEW YORK
Kchabllltation SeM«ith kftainlngCenter
Conununity Integmlon offtrsoniwith TBI
MSSMilrSttett
Butfala New Yeik M21i USA
(714)S».2300
hx: (716) 929-2390
MEMORANDUM
TO:
Gerben DeJong, Ph.D.
Long Term Care Working Group
FROM:
Barry S. Wilier, Ph.D.
RRTC ON TBIAJniversity at Buffalo
Phone: 716 829-2300 (FAX: 716 829-2390)
DATE:
Dec. 18, 1992
RE:
Development of Long Term Care Policy Options For Individuals With Traumatic
Brain Injury CISD
1.
How many individuals with TBI require hands-on assistance or supervision?
There are two significant populations with TBI that require assistance, people who have
acquired brain injury recently and those who were injured years ago.
People whose brain injury is recent tend to fall into one of three categories. First, there
are those who recently acquired TBI, received inpatient rehabilitation (hopefully) and return
home to receive assistance from family members. This assistance is considerable for at least six
months in most cases. An estimate of the number of Americans each year in this category is
30,000. There is another group of approximately 35,000 people each year who require minimal
assistance due to mild or moderate brain injury, who will have problems primarily with
employment. Finally, there is group of approximately 10,000 who are very severely disabled and
will be placed in a nursing home or other long term care health facility.
Second, there is the "woodwork" group, which refers to those individuals who acquired
their brain injury years ago and are now disabled and dependent on family members for
assistance. Our research has found that many people in this group live isolated existences and
if services become available some will emerge from the "woodwork" to obtain them. We
estimate this population to be 200,000 which includes approximately 30,000 in nursing homes
or related facilities. The remaining population (170,000) is multiply disabled and generally
dependent on family members for assistance with personal care etc. In our prevalence study,
we found that approximately 37 % or 63,000 individuals reported needing additional assistance,
with the primary need being transportation (because such individuals are too disabled to drive
and are generally not eligible for assisted transportation services). Approximately 15% (25,500)
report a need for assistance in daily activities.
�2.
How do needs differ among various subpopulations?
The recently injured population (i.e., 30,000) leaving rehabilitation is mostly young,
between 22 and 60 (53 % and their needs are comprehensive. This group has two critical needs:
)
independence and employment. Only twenty percent will be employed and those who are
employed are mostly under employed. Most will return to live with family members in a
dependency relationship. A very small percentage (approximately 2 ) are eligible for personal
%
care services due to physical disabilities. There are also many (34%, 10,000) children (under
22) who are generally more disabled and should.be eligible for services for those with
developmental disabilities. There is also a significant elderly population, aged 60+ (13%, 3700)
who are more frequently released to nursing homes.
The population living in the community is older than people who are newly injured and
includes approximately 1 % (29,000) over the age of 60. Half of this population (85,000) is
7
between the ages of 35 and 55. These individuals are typically unemployed and dependent.
They require minimal assistance in daily living activities, however about 40% (34,000) would
like to live more independently. In order to accomplish this these individuals may require a
transitional living program. The most innovative programs arrange for individuals to have
minimal personal care assistance and affordable housing. This works best when individuals
share attendants, because each individual rarely requires full time assistance, and the type of
assistance required cannot be easily scheduled.
3.
What range of services ought to be Included in a well designed personal assistance
benefit package?
As mentioned above, some individuals graduating from inpatient rehabilitation programs
require about six months of personal care assistance for transition into the community. Some
require more structured programs such as transitional living programs or supported housing
programs. There are approximately 3100 places in transitional living programs and 1200 places
in supported housing programs in the U.S. These programs are very expensive and largely
unregulated. There is also wide regional variation in the availability of programs. Personal
assistance provided to people recently discharged would be very valuable, however, for people
with brain injury, ithe biggest long-term adjustments are in the cognitive and interpersonal areas
of activity. These needs are not generally recognized in the eligibility criteria for personal care
aids. In addition, at least minimal specialized training would have to be provided to assistants
in order to deal more effectively with cognitive and behavioral difficulties.
The personal care assistance needs of individuals living in the community long after their
brain injury, on average, could be met with one to three hours per day. The assistance required
is similar to assistence for individuals who are elderly who often require help with daily planning
or banking or housekeeping. The primary difficulties of individuals with acquired brain injury
are of a cognitive nature and these difficulties prevent a sizeable proportion of affected
Cerbtn DeJong Ph.D.
2
�individuals from living independently or from working in traditional settings. Regarding
employment, most of these individuals are unemployed and require creative interventions to
improve employment outcomes.
4.
How is eligibility for personal care determined and how should this be changed?
The current eligibility criteria for personal care are highly variable depending on state
and reimbursement source. Our own research with individuals with TBI revealed that most who
might have benefittedfrompersonal care were discouraged from even considering it an option.
The few individuals we have encountered who have pursued personal care were judged ineligible
because their problems were cognitive, and therefore harder to define than physical problems.
Because people with, brain injury often IsQk as though they do not have disabilities, and their
problems are not perceived to be "life-threatening", they do not receive vitally needed services.
There are a number of additional questions related to eligibility that need to be addressed.
First, what is the go«il of attendant services? In our view, services should be aimed at increasing
integration of the individual into his/her chosen community. This differsfromwhat we perceive
to be a more common goal of attendant services, namely maintenancft of the individual in his/her
current state. If the goal is integration then eligibility should be based on indices of isolation.
If the goal is maintenance, eligibility should be based on an assessment of disabilities.
Another question is that of threshold. At what point is the need for services sufficient
to warrant paid attendant services? Our experience is that families are currently meeting most
of the personal care needs of individuals, and this has led to high rates of burden and depression.
The likely end result is family bumout and placement of the individual in (expensive)
institutional care. The threshold, we propose, should be based on assessment of disabilities,
assessment of integration levels, assessment of the family situation and assessment of the desires
of the individual to live independently. The threshold can probably be established through
research on how much burden families can bear and how integrated into the community are the
individuals with disabilities.
5.
What technologies might exist to reduce the need for personal assistance?
We have seen a few programs experiment with the use of telephone pagers that remind
individuals when it is time to take medication or attend an appointment. This appearstobe
successful but much more needs to be done to investigate the effectiveness of assistive
technology.
Gerben DeJong PKD.
�DEC 21 '92 11:02 NASfFPD
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�DEC 21 ' 9 2 11 = 03 NASMRPD
P.2
LONG TERM SUPPORT NEEDS OF PEOPLE
WITH DEVELOPMENTAL DISABILITIES
1.
Target Population An estimated 3 million Individuals in the United States
have developmental disabilities (i.e., they have a severe disability that
occurred early in life and which usually can be expected to necessitate
lifelong supports). Approximately half (48%) of these individuals are
under 22 years of age, while the remainder are adults (52%). Mental
retardation is cited as the primary cause of a developmental disability in
slightly less than half (42%) of cases. However, a wide variety of other
etiological conditions also are known causative factors, including cerebral
palsy (15%), other severe learning disabilities (11%), severe childhood
emotional disorders (6%), epilepsy/other seizure disorders (3.5%), autism
(3.4%), visual impairments (2.4%) other nuerologlcal disorders (2.1%)
and a wide variety of other disabling conditions originating during
childhood.
It is important to point out that multiple disabilities are common among the
developmental disabilities population, with the frequency increasing as
the overall severity of the individual's functional impairments increases
(e.g., the incidence of sensory, nuero-motor and seizure disorders is
usually much higher among individuals with profound mental retardation
than it is among individuals with milder cognitive disabilities). It is also
important io note thai not all individuals with a diagnosis of mental
retardation, cerebral palsy, autism, etc. are properly categorized as
developmentally disabled. A1990 household survey, for example,
revealed that approximately one percent of the U. S. population is
mentally retarded at any point in time, or 2.4 million individuals. But only
about half of these individuals would be classified as moderately to
profoundly retarded (i.e., having an IQ of 50 or below) and, thus,
considered to be at high risk of having a substantial lifelong disability.
2.
$ervice/Support Needs. The service and support needs of people with
developmental disabilities are extremely varied, depending both on the
person's age and the nature and extent of his or her disability. The
lifelong trajectory of the disability sets services and supports to this
population apart from those typically required by people who experience a
severe, chronic disability later in life. Rather than assisting individuals to
compensate for skills lost as a result of a disability, the aim of
developmental disabilities services must be to.first help the person
acquire the skills necessary to function with maximum independence as
valued, participating members of the society within which they live. As a
�EEC 21 '92 11 = 04 NflSffSPD
P.3
result, long term care services for people with developmental disabilities
must reach beyond helping people to perform activities of daily living that
are precluded or impeded by the nature of their impairments; rather, they
also must encompass the acquisition and retention of basic life skills many of which society at large, indeed many members of the broader
disability community, take for granted. In addition, a high premium must
be placed on mobilizing and coordinating the activities of a very wide
range of human service systems (e.g., health, education, social services,
vocational training/employment, etc) across the individual's entire
lifespan.
The results of a 1990 stratified sample survey of people with
developmental disabilities revealed a great deal of similarity in the service
and support needs of this population. There was a strong consensus that
vocational training, advocacy, peer support and counseling, and
communication services were in particularly short supply. People with
mental retardation, however, reported a higher need for community living
assistance and training (assistance to maintain a home and other
activities related to residing and participating in the community), while
individuals with physical disabilities reported a higher need for "attendant
care" and assistive technology.
In highlighting these differences, we need to stress that the ultimate goal
of developmental disabilities services is identical to the goal of all other
disability services - i.e., to assist the individual in becoming an
independent, productive and valued member of his or her community.
The types and intensities of services and supports required to achieve
this goal may differ but the central organizing objective Is the same.
3.
Range nf fiarviftes As noted above, people with developmental
disabilities usually require a wide range of human services and supports
across their entire lifespan. While some of these interventions are not
commonly thought of as "long term care services" (e.g., infant
stimulation), they most assuredly play an integral part in any
comprehensive strategy for addressing the needs of this population. To
use: the example of early intervention services, we have ample evidence
to support the commonsensical proposition that correcting or ameliorating
a disabling condition early In a child's life pays handsome dividends in the
long run - both in human and financial terms. It is important, therefore, to
create a broad conceptual framework for thinking about restructuring the
federal government's long term care policies.
With respect to the more specific task of rethinking existing federal
policies governing such traditional sources of LTC funding as the
Medicaid and Medicare programs, we believe there are several critical
Page - 2
�DEC 21 '92 13=24 NASMRPD
P.S
lessons to be learnedfromemerging trends in federal-state financing of
developmental disabilities services which need to be taken into account in
designing a new, more forward-looking set of federal LTC policies. These
trends are best reflected in Medicaid funded home and community-based
waiver programs for people with developmental disabilities. First, while
most states initially covered a rather narrow, conventionally defined,
facility based set of services under their HCB waiver programs (e.g., day
and residential skill training in group houses and specialized daytime
habilitation centers; respite care; case management, etc.), over the past
few years a growing number of states have begun to broaden their
service menus in ways that permit services and supports to be tailored to
the individual needs and preferences of the consumer. The result has
been the gradual emergence of a more diversified array of services and
supports that promote true integration into the community rather than
prefabricated services based on a "treatment-oriented" model.
Second, this shift toward a "supports model" has been accompanied by a
much stronger orientation toward a "customer driven" service delivery
system. The latter change is best exemplified by the growing use of
person-centered planning methods, which emphasize the importance of
first determining the individual's wishes and desires and then - and only
then - beginning to delineate, in consultation with the consumer (and any
other representatlve(s) he/she may choose) the types of services and
support necessary to achieve these life goals.
Third, as the "supports model" begins to take hold, more and more states
and localities are beginning to reject the "continuum of care" principles
that have governed the organization of developmental disabilities
services for the past two decades - i.e., the notion that the service
system should consist of a series of discrete types of treatment-oriented
daytime and residential services through which recipients are expected to
move as they acquire additional skills and the capacity to exercise greater
independence. This largely bankrupt concept, upon which not only
developmental disabilities services but, indeed, most LTC service system
traditionally have been built, is giving way to the notion that, if services
and supports are truely molded to the needs of each consumer there is no
need for such "off-the-rack" service models. Instead, the types and
intensities of required services and supports can be individually fashioned
and delivered.
We feel very strongly that these emerging trends in developmental
disabilities services, and the great promise they hold for creating a more
responsive, customer-driven service delivery system, should be taken into
account in any attempt to re-write federal LTC policies. The policy
impl ications of these recent, grass roots developments, we would argue,
Page-3
�DEC 21 '92 13:25 NftSM^PD
P.S
are nothing short of profound. Rather than approaching the task of
defining the discrete elements of services that should or should not be
part of a restructured LTC benefit package, for example, it would be
preferable to define the service menu in broad, functional terms, In order
to permit those directly responsible for individual service planning to
fashion person-specific service and support plans.
In addition, it will be important to build into any LTC reform legislation
specific methods by which states and localities can transition from old to
new service delivery approaches. For example, over $14 billion federalstate Medicaid dollars will be expended this year on specialized long term
care services for people with developmental disabilities. Despite the
enormous strides that have been made In recent years to introduce new
consumer-driven service delivery models through the HCB waiver
programs and a newly authorized Medicaid coverage option called
"community supported living arrangements" services, almost seven out of
every ten Medicaid dollars ($9.7 billion) are being expended on
approximately 150,000 Individuals who are residing in ICF/MRs - over
100,000 of whom are residents of large public and private institutions. A
forward-looking set of LTC reform policies, therefore, must be designed to
facilitate - indeed accelerate - the process of transitioning from the
outmoded "continuum of care" model, upon which the ICF/MR program
and other facility-based approaches are based, to the new "supports
model", while at the same time ensuring that the best interests of all
consumers are protected throughout this process.
4.
Eligibility Determination. At present, eligibility for developmental
disabilities services typically is determined through a two-tiered process.
First, the individual must meet the state's statutory test of eligibility, which
varies from state-to-state. Historically, states have limited eligibility for
state-funded MR/DD services to individuals who are mentally retarded,
defined in rather broad terms [N.B., Since the focus of such services
generally has been on people with more extensive service needs, the
population served always has included individuals with other types of
developmental disabilities that often occur in conjunction with mental
retardation (e.g., cerebral palsy, epilepsy, emotional disorders, etc.)]. In
recent years, however, more and more states have begun to extend
eligibility to persons with developmental disabilities other than mental
retardation, in doing so, some states have adopted the purely functional
definition that appears in the federal Developmental Disabilities Act, while
others have chosen to limit eligibility to just certain etiological conditions
in addition to mental retardation (typically cerebral palsy, epilepsy, and
autism). Still other states retain a "mental retardation only" eligibility
criteria. The extent to which non-retarded individuals have gained
improved access to services, however, still varies considerablyfromstate
Page - 4
�DEC 21 '92 13=25 NflSTRPD
P.4
to slate, even in states which now use the federal definition of a disability
to determine basic eligibility for services.
Quite aside from changes in written eligibility criteria, the relatively slow
pace with which services are being expanded to persons with
developmental disabilities other than mental retardation can be traced to
the lack of earmarked state appropriations for this purpose. The reality is
that day to day practice tends to change very slowly when service
eligibility is expanded in the absence of new financial resources especially when, as is the case with most MR/DD service delivery
systems, there already are long waiting lists for such services.
Second, once an individual isfoundeligible to receive state-funded
mental retardation/developmental disabilities services, the next question
that must be answered is: is he or she eligible to receive Medicaid
benefits. This determination, made through a separate process, usually
hinges on the seventy of the disability (linked in most states to the SSI
test of disability) and the individual's (plus in the case of children and
family's) income and resources.
Once an individual with a developmental disability is found eligible for
Medicaid benefits, he or she Is potentially entitled to receive all services
covered under the state's Medicaid plan. However, in reality unless a
determination is made that the individual also needs the level of services
provided by an ICF/MR, the range of long term services and supports that
can be financed on his or her behalf through the Medicaid program is very
limited (indeed virtually non-existent) in most states. The practical impact
of this determination is illustrated by the fact that, in most states, at least
90 .percent of all Medicaid dollars that are expended on long term care
services for people with developmental disabilities are devoted to
furnishing either ICF/MR services or home and community-based waiver
services. Keep in mind that the sina qua non of waiver eligibility is that a
participant in a DD-related waiver program must be found to otherwise
require care in an ICF/MR.
In thinking about the reformulation of eligibility requirements under a new
federal long term care program, there are three principal objectives which
should be pursued:
move from a categorical to a functional basis for determining
eligibility for federally-assisted services or supports;
decouple the range and types of long term services and
supports an individual Is entitled to receive from his or her
need for institutional services; and
Page - 5
�DEC 21 '92 12:07 NASfFPD
P.S
provide the individual with positive incentives to engage In
remunerative work, without the perceptions loss of
necessary benefits.
While each of these changes would result in a sharp improvement in
program equity, compared to existing policies, they also would add
significantly to the overall public cost of benefits, again compared to
existing Medicaid policies. The question then is: at what point do the
added costs of achieving such equity become politically intolerable.
Using deficits in adaptive living skills as the sole basis of eligibility for
LTC services is inappropriate in the case of many people with
developmental disabilities. For example, only about 20 percent of
individuals with mental retardation require assistance in performing basic
like skills (e.g., dressing and bathing). Yet we know that at least half the
population has such serious cognitive limitations that they are likely to
require services and supports on at least an episodic basis throughout
their lives. Furthermore, experience suggests that a significant portion of
those with milder intellectual disabilities will face emotional problems and
other complications that will need to be addressed, often on an ongoing
basis.
5.
Technological Improvements. There is little question that the more
extensive use of modern technology could help to improve the cost
effectiveness of long term supports and services provided to people with
developmental disabilities. The expanded use of adaptive equipment,
prosetic devices and other technological applications which have been
spawned by activities under the Technology Assistance Act of 1988 is just
one example of the ways that people with developmental disabilities can
benefit from the use of modern technology. The current excitement in the
field about facilitated communication as a method of allowing people
heretofore lacking communication skills to express themselves is another
example.
With the use of numerous types of emergency response systems and
programmed learning techniques, we are beginning to understand that
many people who we once thought required human support and
supervision on a round-the-clock basis can live in their own homes and
apartments, safely and securely, if such modem technological
applications are available. There are numerous other examples of this
phenomenom that are beginning to demonstrate their effectiveness
across the country.
Page - 6
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P.3
Given the huge and burgeoning demand for disability-related services
and supports, it would be unrealistic to expect that demand for human
assistance would not continue to grow. At the same time, the prudent and
effective use of technology hold promise for filling some of the present
day gaps in a manner that should prove to be both liberating for the
individuals involved and highly cost-effective.
Robert M. Gettings
National Association of State
Mental Retardation Program Directors, Inc.
December 18, 1992
(703) 683-4202
Page - 7
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© 2 0 2 347 4023
NATIONAL
ASSOCIATION
OF
DEVELOPMENTAL
DISABILITIES
COUNCILS
1234 Massachusetts Avenue. NW •
Suite 103 •
Washington. DC 2000b
•
202-347.1234
FAX C O V E R
TO:
FAX:
(FAX 202-347-4023)
FROM:
DATE: I ' l i l j l Q i
t•
MESSAGE:
NO. OF PAGES TO FOLLOW:
�12/21/92
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(jl009
LONG TERM SERVICES POLICY OPTIONS FOR PEOPLE WITH
MENTAL RETARDATION/DEVELOPMENTAL DISABILITIES AND
OTHER DISABILITIES
The long term services and supports needs of people with
d i s a b i l i t i e s , and as a subset of that group people with mental
retardation/developmental disabilities/ must be considered in the
basic premises and design of any" approach to refonn. Addressing
issues within the design to accomniodate people with disabilities
w i l l be Insufficient to meet the expressed needs of the disability
community. Any approach to long term services and supports muat be
done with consideration from the beginning of the distinct need,
preferences, and requirements of people with d i s a b i l i t i e s and their
relationship to overall social goals of promoting empowerment.
independence and inclusion.
Supports for people with d i s a b i l i t i e s must be directed
toward f u l f i l l i n g their f u l l potential, toward their
Independence, productivity and ability to be contributing
members of their communities, and to be fully included
participants in society.
Long term services and supports for people with mental
retardation/developmental d i s a b i l i t i e s must address the
particular needs of individuals who experience disability
early in l i f e and with more significant effects,
resulting i n specific and unique needs over their
lifetime.
A long term services and supports system must make
available a broad and comprehensive variety of social,
support, health-related and individualized services.
F l e x i b i l i t y i s c r i t i c a l in order to allow for selection
by the consumer to meet individualized needs and address
individual goals.
The needs of people with d i s a b i l i t i e s go well beyond
health care. Long term services and supports must not be
medicallzed, must provide personal assistance services,
cmd promote positive images of people with d i s a b i l i t i e s
as well as positive l i f e outcomes.
The system must also include varied providers of social,
support, health, and individualized services, not solely
medically-based providers.
Quality assessment must be based on the achievement of
individually chosen l i f e goals and objectives through the
provision of long term services and supports.
Eligibility
must be determined
based
on
functional
�12/21/92
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The irystem must also include varied providers of social/
support, health, and individualized services, not solely
medically-based providers.
Quality assessment must be based on the achievement of
individually chosen l i f e goals and objectives through the
provision of long term services and supports.
E l i g i b i l i t y must be determined based on functional
c r i t e r i a regarding limitations i n a l l aspects of l i f e
including daily living, decisionmaking, communication,
self-care and direction, mobility, information and
stimulus processing and other areas.
Individual choice and control (not token participation in
service coordination) must be hallmarks of the system
which provides long term services and supports.
Individuals receiving services must have the opportunity
and the influence to evaluate and control the
effectiveness and quality of services.
Any shift in the funding of the system must consider the
breadth of services and funding in the current broad set
of
systems
for
people
with
mental
retardation/developmental d i s a b i l i t i e s , mental Illness,
physical d i s a b i l i t i e s , cognitive disabilities and sensory
disabilities.
Christina Metzler
NADDC
202-347-1234
$010
�12/21/92
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[fi 001
NADDC
© 2 0 2 347 4023
NATIONAL
ASSOCIATION
OF
DEVELOPMENTAL
DISABILITIES
COUNCILS
1234 Massachusetts Avenue, NW •
Suite 103 •
Washington, OC 20005
•
202 347-1234
FAX COVER
TO:
FAX:
FROM:
(FAX 202-347-4023)
DATE:
NO. OF PAGES TO FOLLOW:
MESSAGE:
WML
�12/21/92
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Mental Retardalion/Dcvclopmental Disabilities
Metzler
Page 1
PEOPLE WITH MENTAL RETARDATION/DEVELOPMENTAL DISABUJnES
For puipoaea of ttua diacuseion, thr tenn mcaUl rcUriUtioo/d«velopaa«Btal disabilities is usedtoreflectthe term as
it is used by state governments and the systems which have developed around services funded tor people with mental
retardation/develcpmental disabilities as defined by the various states. This paper is not intended to reflect the
federal definitioo of developmental disabilities which is broader and wider, emphasizing severity and onset prior to
age 22.
Furthermore. dis«ai3sions of long term services and who might need supports including personal assistance services
must include a broader ranee of indfridnals.
Also the design of any new health care orovisinn svstem andtebenefits and structure must be considered before an
adequate and appropriate approach to long term services can be developed The health care svstem should not be
completely separate from the long term svstem nor ahouid a medical/health approach be the onlv issues in lonp term
services.
1. How manv txaople in vour target population require hands-on assistance or supervision to meet their everyday
needs with activities?
Defining the numbers and needs in the context of "hands-on" assistance limits discussion of the appropriate goals
of a long term services system. Any attempt to clarify the numbers of people with disabilities (induding those with
mental retardation/developmental disabilities) requiring long term seivices and supports must be done in a larger
context of overall needsforsupports and other services.
(Refer to questions 2 and 3 for information on services that should be available.)
Analysis of the c umbers should be done with expansive views of "hands on assistance." For instance; Umits in "getting
around" should include transportation dependence for individuals who cannot either drive themselves or manage
public transportation due to physical or cognitive or mental impairment Likewise, "managingfinancialaffairs* may
be an indicator Ibr more extensive sodal incompetence and the need for more than occasional support and for soda]
self-management (e.g., avoiding sodal exploitation or rejection, recognizing dangers, understanding future
consequences ol: present behaviors) and other training (e.g., vocational support). Thus the estimation of numbers
should cast a net which includes these issues as indicators. For example, 73% of persons receiving Social SecurityDisabled Adult Quid benefits have representative payees.
Critical points in answer to this question ore:
* While the existing service systems do not in general use the federal definition of developmental disabilities, much
research has been done to tiy to apply that definition. With the definition's emphasis un severity and functional
limitation in critical life areas, these analyses can provide useful statements about how many people might need
supports. However, people in the cunent mental retardation/developmcatal disabilities svstem who do not meet the
test of severity must be considered to have a right lo be "grandfathered" in under anv new approach, perhaps with
different services provided.
* Estimates of the population which is encompassed under the federal definition of developmenttl disabilities range
from .9% (LaPlante, National Health Interview Survey analysis and Charles I akin, analysis of institutional population
by Charles Lakin) to 13% (Illinois Developmental Disabilities Planning Council, 1987) to 1.65% (Lakin and others).
Consideration must be given to increased survival rates among children with significant disabilities as well as
increased longisvity of people with severe and profound disabilities.
* People who meet the federal definition of developmental disabilities would be expected to need some level, type
�12/21/92
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Mental Retardation/Developmental Disabilities
Metzler
Page 2
and intensity of "liands-on" supports among other supports.
* The federal definition of developmental disabilities presents afimctionalapproadi but cadnde« <rifntfif«^t numbers
of people because of the aee of onset A purely functional approach would include people with significant brain
injuries, spinal cord injuries and other disabilities which may occur after age 22. These people need supports as well
* Discussions must extend to who needs which services. "Several researchers (Lakin, Jaskulski) have examined the
impact of offering a more desirable set of services on utilization. It should be dearly raonfnfcuri tfiflt d^fffgn
the svstem affects how and in what piapner people will access services. Certainly people do not need Inappropriate,
overly intense services. Individualized provision of service may result in very different patterns of usage, cost, etc
(Related questions arc discussed under 4.)
2 How do the needs differ among various subpopulations of people within the target population?
See question 3. for a description of the services which should be included in a total package.
Again, it must be stressed that defining the needs of various subpopulations depends on the context If consumer
choice and control are at the base and the system is operationalized to provide truly individualized services, what
people access and in what intensity might vary considerably from what we could project now. Someone who is
receiving institutional care at present might choose an array of very different supports if such were available.
In the 1990 National Consumer Survey of 15,000 individuals who meet the federal definition of developmental
disability (Temple University) differences were determined between people with mental retardation (which included
60% of the sample with either a primary or secondary diagnosis of mental retardation) and those with other physical,
cognitive or sensory disabilities. The sample was randomly selected with probability proportional to size. Existing
date was used to guide the selection of the sample to include appropriate proportions of people in various disability
categories (menUd retardation, physical, sensory, and emotional.) For instance, the guidance given to implemented
was to include 42% of the people with mental retardation as a primary disability; this was achieved. The remaining
disability categories were represented in the sample at approximately the recommended levels: physical 40%, sensory
10% and emotional 8% of the sample declaring these as primaiy. In addition, 15% declared a secondary diagnosis
of mental retnrdxition, totalling nearly 60% who had some level of retardation.
Differences in service need can he seen in data from this survey andfromother souroes.
VARIOUS DISABILTTIES: While many of the declared support needs were similar across all primaiy disabilities
(high levels of need for vocational training, health care, therapies, peer support and counseling, and communication
services) there w.ere two areas of difference. People with mental retardation reported a higher need for community
living assistance and training (assistance to maintain a home and other activities related to residence and participation
in a community.) People with physical disabilities reported a higher need for what was called "attendant care" and
assistive technology.
In the survey, both groups reported high needforcommunication supports. This should be interpreted to go beyond
"substitute" conutnunication services, such as iEterpreters for those with bearing impairments, to facilitation cf
communication. Failure to be able to nrmmplwh both receptive and expressive communication may not be limited
to sensory impairments but includes muscular control, cognition and other aspects of commnnication.
CHILDREN: Because developmental disabilities most often occur at birth or in early chfldhood, the service needs
of children and families must be considered. In several states, the concept of family supports has been instituted to
provide the family unit with assistance. These programs often supplement Medicaid waiver or other aavices provided
to the child in the home and community. Family and children's supports include technology, respite, personal care,
�12/21/92
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(2|004
Mental Retardation/Developmental DisabOilies
Metzler
Page 3
equipment and supplies (e.g., diapers for older children), service coordination, behavioral training, and other
specialized services. In the National Consumer Survey, families with children most often requested personal support
services, respite services, sodal supports (like peer counseling), and assistive technology.
LATE CHUDHOOD/EARLY ADULTHOOD: The needs of people must be considered along the lifespan. The
character of needs for this age group and the current critical lack of seivices for those emergingfromschool
programs between ages 18 and 22 must be viewed seriously and specially. TYansition to adult life and supports must
also be addressed.
ADULTS: For people to achieve fall potential, productivity and participation, supportsforadults must include life
and career planning, training in life sldDs (includmg vocational training and work support), independent living
supports (such as training in or provision of housekeeping,financialmanagement assistance, assistance in other
activities of doily life). Adults in the National Consumer Survey listed case management as one of the highest needs.
Transportation was a high need and also was identified as not met in the cunent system.
MULTIPLE Dl&VBUJTIES: People with severe disabilities often have multiple disabilities. Particulariy, persons
with severe or profound mental retardation often have other sensory or physical disabilities which compound the need
for individualized approaches. (See attached table.)
Overall, the National Consumer Survey date can be interpreted to mean people may have a high need for a few
services, but they need choice, variety, flexibility (in services and intensity) and control
3. What range of services oueht to be included in a well-designed personal assistance or long-term care program?
Most of the need) of people with mental retardation/developmental disabilities can be met with personally provided
seivices in a variety of settings. This applies the concept of personal assistance services to much of the supports
needed, while specialized seivices such as therapies and rehabilitation must also be made available. These services
must be available; in people's homes, in work settings, in educational settings, in community settingsforrecreation
and participation. People with mental retardation/developmental disabilities need training and habilitation supports
to promote optimum development, a support which may not be needed by persons with other disabilities or
disabilities which occur later in life.
Extreme caution must be taken in considering the option of induding any institutional or nursing home services for
people with disabilities exceptforisolated instances. Ihis would also indude community seivices which are provided
in even 8 or 15 "lied" designs. The disability community has worked long and hard to demonstrate that people with
a disabilities, no matter how significant or how complex the needs, need not necessarily be served in a segregated
or medical fadlily. People with severe disabilities have clearly expressed their preferenceforcommunity living and
participation. Supports can be provided in the home and in the community. In addition, eomparisons with
institutional careforpurposes of eligibility or allowed level of service or funding are inappropriate and inconsistent
with the goals of promoting full functioning for all persons. Indeed recent Medicaid policy (under the Community
Supported living Arrangement'! Seivices option) completely divorces eligibility,financingand service levds for
community servicesfroma comparison with institntional or nursing facility services.
Services must indude a full range, along with maximumflexibilityto provide other services which meet individual
needs. The range should indude: personal services, household services, child and infant care assistance, community
living supports, communication services, security services, mobility services, work-related supports, service
coordination, training and habilitation, therapies (physical, behavioral, occupational,respiratory,etc), nursing
services, assistive technology and emergency services.
This wide range is being used in (he Home and Community Based Waiver programs as follows:
�12/21/92
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81005
Mental Retardation/Developmental Disabilities
Metzler
Page 4
Service
Percent of states offering under HCB
Day Habilitation
87%
Residential Habflitatioa
39%
Respite Care
38%
Supported Employment
31%
Case Management
27%
*
In-IIome Services
24%
Home Modifications
21%
Prevocational Services
21%
Personal Care
20%
Adaptive Aids
1%
9
Transportation
1%
9
Hierapy/Related iSerrices
1%
6
Supported Living
15%
Health-Related Snvices
1%
4
Behavioral
8
%
(Source: National Association of State Mental Retardation Program Directors, 1992)
Under Community Supported Living Arrangements state plans, a similar list can be offered: personal assistance,
habilitation, emergency assistance, adaptive equipment/assistive technology, home modifications, supports for
community participation, respite care, transportation and other services.
4. Higibility
Eligibility must be determined along functional lines, with consideration of Activities of DaOy Living and on what
called "instrumental activities of daily living" (lADLs) (shopping, food preparation,financialand other affairs
management, decisionmaking, etc.). This allowsforinclusion of individuals with cognitive and mental oonditions
which limit not physical function but other equally important aspects of leading a full life.
In terms of the present system, several items of data can be considered. Because offry[imfa qf offered options and
current eligibility criteria, these should not be considered comprehensive either for inclusion of all persons with
developmental disabilities or all others with disabilities which imply a need for long term supports.
Nevertheless, many states have developed a methodologyfordetermination of an eligibility which combines functional
assessment and other factors. In addition, studies have been done of many elements of the service system to further
illuminate the numbers of people who might be eligible for long term seivices and supports. These efforts have
looked at data such as SSI, nursing facility residents, residents of ICF/MRs and community facilities, and others.
Such previous analyses can be consolidated, with further compilation (and indeed much was done in the REPORT
TO THE SECRIiTARY OF DHHS - 1968; see lefeieuce bekrw) could be helpful in clarifying this issue and issue
in question 1. Some elements of this research arc presented to show the breadth of data in etdsteace:
* As of June 1989, 147,148 individuals received seivices in ICF/MR Medicaid facilities (large and small, public and
private) (Lalo'n, 1991). 98,135 people were receiving Home and Community Based waiver services as for FY 92-93.
(National Association of State Mental Retardation Program Directors, unpublished data).
* Other persons with physical disabilities receive other waiver services.
* 106,000 individuals between the ages of 18 to 54 reside in nursing facilities and persona] care homes. (AHCPR
Report #92-0060). Of those 25.9% had limits in 4 or 5 ADLs with no related mental or cognitive conditions; 22.8%
had no ADL limits but had one or more mental disorders or mental retardation; 242% had a high number of ADL
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�12/21/92
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Mental Retardation/Developmental Disabilities
Metzler
PageS
limiutiuns plus a mental diaorder or mental retardation; 20.8% had cue to 3 ADL lumts in oombinatioa with mental
disorders or mental retardation.
* 600,000 individuals receive Sodal Security-Disabied Adult CUM benefits. These indfriduab are often premmed
to have a developmental disability and are likely to need personal supports.
* The Report to the Secxctaxy estimated, by using income* maintenance
and service data as proxies estimated 12 millkra persons might need long term supports.
All of the above may be (weriapping; farther consolidation could clarify the number who could be espected to need
long term supports.
5. What techuolggjes cunentfr ppfl qr m
to qfet itt fty near futiffg thflt might sahsfihity for hnmaB
assistance? Caji adaptations help to reduce the need
l>»mnn »-' «««nr y
,
t
Technologies wlliidi are improving services and supports for people with mental retardation/devdopmeata] A\p*Qtrtei,
Assistive technology devices as well as new technologies Cor training (supported erapluymcnt) and development
(behavioral training) are greatly increasing how much human potential can be enhanced in individuals with significant
disabilities. Use of these technologies and methods can reduce the needforintensive servicas, ait dam on the need
for monitoring (e.g., in use of technological approaches to emergency services), and promote optimal development
(e.g., in use of wmmunication devices.)
Prepared by.
Christina Metzler
cjo National Ajsotialion of Developmental Disabilities
(NADDC)
1234 MassachiMCtts Av. NW #103
Washington, DC 20005
202-347-1234
202-337-1462
FAX 202-347-4023
Assistance provided by.
Tecla Jaskulski 301-854-3030
Elizabeth Boggs
P6/(b)(6)
THIS PAPER DOES NOT NECESSARILY REFLECTTOEVIEWS OF NADDC
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Menial Retardlatioii/Developmental DisabOilies
Metzler
Page 6
REFERENCES AND RESOURCES
Charles Lakin
University of Minnesota
Center for Residential and Community Services
612-624-5005
David Braddock and Richard Hemp
University of Dlinois-Chicago
University Affiliated Program in Developmental Disabilities
312413-1647
Tecla Jaskulski
Jasknlsld and As.tociates
301-854-3030
Temple University
Celia Feinstein
215-787-6561
Report to the Secretary
from the Working Group on Policies Affecting Mentally
Retarded and Other Developmentally Disabled Persons
March 1988
Department of HHS/Officc of the Assistant Secretary for Planning and Evaluation
(contact Metzler for copy)
8007
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P-
02
trains, schodulea and (if nMdsd) tiros, tha aide; in tha lattar,
aides are responsibla to health oare aganciaa.
4. Eligibility for PAS- The distinction between eaployment-relatad
and other support services i s crucial to discuss eligibility. State
VR agencias establish number of reader hours paid for clients in
college or other training. Employers negotiate reader hours vith
their B/vi employees. Research i s needed to document the range and
determinants of varying levels of,support for reader services! and
their adequacy.
W have no data on whether/how eligibility for health-related
e
PAS for B/VI persons differs from people vith other impairments. As
noted, analysis of SOA~1984 could be useful, as could data generated
by state programs to provide IL aervioes to "elderly blind persons'
(Title V l l ^ - Rehab Act). Future policy should ensure that rehab
techniques are offered to B/VI persons of a l l ages before assigning
PAS. Nevertheless, PAS should be vieved not as an alternative to
independence but as a support for independence in other activities.
1
5. Technology. "High" and "Low" . Existing technology i s well-suited
to substitute for the human assistant in much reading, visually
impaired persons who can read magnified print benefit from low-tech
systems such as hand-held or spectacle-mounted magnifiers, or hightech CCTVs. Blind persons who cannot benefit from magnification may
read independently by using OCR systems vith speech synthesis, or
braille output computers. (Schreier et al, 1991)
The major barriers to acquiring this equipment are cost and
lack of information (Uslan, 1992) (As noted above, generational
attitudes toward high-tech may limit usage.) Also, society's
increasing use of computer graphics (which are hard to translate to
speech or braille) is threatening, at least temporarily, B/VI
persons' gains from computers.
High-tech approaches to O M known as Electronic Travel Aids
&,
(ETAS), have not had widespread acceptance compared to improvements
in techniques for using the low-tech long cane, (see National
Research Council report.)
H m modification and other environmental adaptations can
oe
greatly reduce B/VI persons' need for human assistance. For
example, braille labels on food supplies and clothing reduce need
for help with cooking and dressing; non-glare surfaces and color
contrast enhance independent preparation of and eating meals, etc.
Independent access to, and within, public areas can be improved by
large print and braille signage, and audible information.
Prepared by Corinne Kirchner, Ph.D., Director of social Research,
American Foundation for the Blind (AFB).
Other contacts: Hark Uslan, AFB National Technology Center
Alan Dinsmore, AFB Government Relations Department
�12/21/92
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1420
p
-
01
75+). Most acquired visual impairment gradually, from diseases
associated with aging, and do not become totally blind; most have
other impairments, mainly hearing and orthopedic; most are women;
very few are employment-oriented. This cluster of characteristics
sharply limits the number who obtain rehab services that could
enhance independence, and limits alternative techniques for visionrelated tasks. Barriers include stereotyped attitudes about aging
and blindness among B/VI persons themselves, often reinforced by
health cure workers; vocational orientation of much rehab (and
inadequate recognition that some elderly blind persons do have
vocational needs, including reading); resistance to "high tech"
solutions (probably generational; future cohorts w i l l very likely
embrace computerized assistive devices).
A much smaller group, ages 18-64, have needs primarily for
reader aasistance that i s vocationally (including educationally)
related, carried out at home or at work/school. This age group i s
more likely than the elderly to have become B/VI at birth or at an
early ago, to be totally blind, and to have had sudden onset —
features that nevertheless characterize only a minority of the
group. Multiple impairment i s less likely but i f present, i s more
likely to include cognitive. This age group, especially the younger
portion, i s likely to have had rehab. The small subgroup who are
highly educated and employed tends to prefer hiring readers to f i t
their schedules and tschnical needs, over using volunteers.
The cohort of children born blind has grown in recent years due
to increased survival of those with very low birthweight and
multiple impairments. Their PAS needs in adulthood may resemble
those of today's oldest B/VI people more than today's young adults.
Data sources exist to describe in more detail the PAS needs and
current solutions of these subgroups, but require speoial analyses.
For persons 55+, SOA-1984 i s valuable because of i t s measures of
visual status and ways of doing ADLs/IADLs.
Two AFB studies, not large or representative enough for
national estimates, offer insights on type, extent and payment for
personal services and technology for reading and mobility among
adult B/VI persons, employed versus not (Kirohner & Harkins, 1991;
Kirchner et a l . , 1992).
3. Benefit Package. The key to effective PAS for persons who are
B/VI i s f l e x i b i l i t y , in contrast to current standardized packages.
Services may be needed on a minimal or intensive basis, sporadic or
ongoing. The range of services should include readers for mail,
b i l l s , medications and other health care instructions; assistance
with diabetic or other chronic illness management, e.g., glucose
testing, injections; grocery and other shopping and other necessary
transportation; meal preparation. For a l l these tasks, some B/VI
people do not need assistance 1£ they are taught alternate
techniques ar>ft other impairments do not interfere. Employmentrelated reading services should include reading done at home.
I t i s worth noting that use of readers by B/VI college students
and persons in high-status occupations provides extensive precedent
for the emerging "management model" for PAS juajuia the traditional
"medical model". In the former, the person with a disability hires,
�12/21/92
12:53
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P. 01
LONG-TERM CARE/PERSONAL ASSISTANCE NEEDS OF PERSONS WITH BLINDNESS
OR SEVERE VISUAL IMPAIRMENT IN THE U.S.
(See page 4 for details on abbreviations & references.)
introduction - Blindness or severe visual impairment (B/VI) impacts
daily life in numerous ways, mainly via limitations in reading print
and aattina around outside. Rehabilitation training in alternate
reading methods and in orientation t mobility (O&M) reduces greatly
the need for personal assistance but does not eliminate i t .
Some B/VI persons (mainly those with advanced age and/or
multiple impairments) have substantial needs for personal assistance
in basic activities of daily living (ADLs) which f i t a traditional
concept of health-related long term oare. The health care system
has traditionally pQfc reimbursed the specialized services of
"rehabilitation teaching" (which teaches alternate techniques for
self-care activities) or for O M even though analogous serviaes
&,
such as physical therapy and occupational therapy for stroke
survivors are reimbursed. This inequity should be corrected.
The discussion next addresses the questions posed by the Longterm oare Working Group.
1. Target Population EBtlaatga- By one estimate, nearly 5 million
persons of a l l ages in 1990 had visual impairment severe enough
(includes a small minority with total blindness) to require at least
occasional assistance from another person for reading or getting
around. About 4.3m were community-based and .Sm were in longterm
care institutions. ("Severe Visual Impairment" i s defined as
reported inability to see to read ordinary print even with glasses.
Estimates based on rates from 1984 SOA for ages 554- years; adjusted
rates from 1977 HIS for <55 years; also, 1977 Survey of
Institutionalized Persons. Less than .im ara ohildren <18 years.
See Nelson & Dimitrova, in press.)
A more conservative estimate comes from applying age-specific
rates from 1987 N E (LaPlante & Miller, 1992) of "persons with any
MS
difficulty who get help from others in basio life activities" to
the estimated prevalence of noninstitutional persons with B/VI:
this approach yields 3.3m persons.
We presume that among those who are community-based, most of
their vie ion-related needs for help are handled Informally by
household members, or i f they live alone, by other relatives,
friends or neighbors. Reader services for letters, b i l l s , etc., and
driver services for shopping, medical appointments, etc. may be
provided by volunteers organized by private rehab agencies, which
are concentrated in urban centers, or by churches in smaller towns.
There i s evidence that much staff assistance to B/VI persons in
nursing homes, e.g. for eating or dressing, would not be needed i f
rehabilitation were provided.
2.
Subgroups. Modified slightly, the characteristics suggested
(age, gender, household/family status, cognitive and other
impairments, employment status) are major determinants of subgroup
preferences and needs for assistance.
Most B/VI people are elderly (about 70% are 65+; over 40% are
�12/21/92
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P-03
ABBREVIATIONS
AFB - American Foundation for tha Blind
CCTVs - closed circuit television
ETAs- Electronic Travel Aids
IL - Independent Living services
N E - National Medical Expenditure Survey, conducted by the Agency
MS
for Health care Policy Research
OCR - Optical character recognition
05M - Orientation and mobility *
PAS - Personal assistant services
SOA - Supplement on Aging to the Health Interview Survey, 1984,
conducted by the National Center for Health statistics.
REFERENCES
Kirchner, C. and Harkins, D., iBsuea and Stratft <afl toward inprovir>
Baplovment of Blind or Visually Impaired Persons tn TiUnMa. New
York, NY: AFB, 1991 (unpublished study report).
ff
7
Kirchner, C, McBroom, L., Nelson, K., t Graves, W., Lifaatvlea o
Employed Legally Blind People', A study of axpenditurea and Time
Mississippi State, MS: NSU/RRTC, 1992.
LaPlante, M. & Miller, K., "People with Disabilities in Basic Life
Activities in the U.S.", Dlaabiltty statiatloa Abatra^. Nunber 3,
April 1992.
Nelson, K.A. & Dimitrova, G., Statistical Brief #36! " 'Severe
Visual Impairment' in the U.S. and tbe States, 1990'', J. of viaual
Impairment and Bllndneaa. in press.
Schreier, E,, Leventhal, J., & Uslan, M , "Access Technology for
.
Blind and Visually Impaired Persons," Technology and DiBabllitv.
1991, v.l (1), pp. 19-23.
Uslan, M , "Barriers to Acquiring Assistive Technologyi Cost and
.
Lack of information", J. of Visual Impairment and Blindneaa. Nov.
1992, pp. 402-7.
�
Dublin Core
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Title
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Health Care Task Force Records
Creator
An entity primarily responsible for making the resource
White House Health Care Task Force
Is Part Of
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<a href="https://catalog.archives.gov/id/10443060" target="_blank">National Archives Catalog Description</a>
Description
An account of the resource
<p>This collection contains records on President Clinton’s efforts to overhaul the health care system in the United States. In 1993 he appointed First Lady Hillary Rodham Clinton to be the head of the Health Care Task Force (HCTF). She traveled across the country holding hearings, conferred with Senators and Representatives, and sought advice from sources outside the government in an attempt to repair the health care system in the United States. However, the administration’s health care plan, introduced to Congress as the Health Security Act, failed to pass in 1994.</p>
<p>Due to the vast amount of records from the Health Care Task Force the collection has been divided into segments. Segments will be made available as they are digitized.</p>
<p><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0885-F+Segment+1"><strong>Segment One</strong></a><br /> This collection consists of Ira Magaziner’s Health Care Task Force files including: correspondence, reports, news clippings, press releases, and publications. Ira Magaziner a Senior Advisor to President Clinton for Policy Development was heavily involved in health care reform. Magaziner assisted the Task Force by coordinating health care policy development through numerous working groups. Magaziner and the First Lady were the President’s primary advisors on health care. The Health Care Task Force eventually produced the administration’s health care plan, introduced to Congress as the Health Security Act. This bill failed to pass in 1994.<br /> Contains 1065 files from 109 boxes.</p>
<p><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0885-F+Segment+2"><strong>Segment Two</strong></a><br /> This segment consists of records describing the efforts of First Lady Hillary Rodham Clinton to get health care reform through Congress. This collection consists of correspondence, newspaper and magazine articles, memos, papers, and reports. A significant feature of the records are letters from constituents describing their feelings about health care reform and disastrous financial situations they found themselves in as the result of inadequate or inappropriate health insurance coverage. The collection also contains records created by Robert Boorstin, Roger Goldblatt, Steven Edelstein, Christine Heenan, Lynn Margherio, Simone Rueschemeyer, Meeghan Prunty, Marjorie Tarmey, and others.<br /> Contains 697 files from 47 boxes.</p>
<p><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0885-F+Segment+3"><strong>Segment Three</strong></a><br /> The majority of the records in this collection consist of reports, polls, and surveys concerning nearly all aspects of health care; many letters from the public, medical professionals and organizations, and legislators to the Task Force concerning its mission; as well as the telephone message logs of the Task Force.<br /> Contains 592 files from 44 boxes.</p>
<p><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0885-F+Segment+4"><strong>Segment Four</strong></a><br /> This collection consists of records describing the efforts of the Clinton Administration to pass the Health Security Act, which would have reformed the health care system of the United States. This collection contains memoranda, correspondence, handwritten notes, reports, charts, graphs, bills, drafts, booklets, pamphlets, lists, press releases, schedules, newspaper articles, and faxes. The collection contains lists of experts from the field of medicine willing to testify to the viability of the Health Security Act. Much of the remaining material duplicates records from the previous segments.<br /> Contains 590 files from 52 boxes.</p>
<p><strong><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0885-F+Segment+5">Segment Five</a></strong><br /> This collection of the Health Care Task Force records consists of materials from the files of Robert Boorstin, Alice Dunscomb, Richard Veloz and Walter Zelman. The files contain memoranda, correspondence, handwritten notes, reports, charts, graphs, bills, drafts, booklets, pamphlets, lists, press releases, schedules, statements, surveys, newspaper articles, and faxes. Much of the material in this segment duplicates records from the previous segments.<br /> Contains 435 files from 47 boxes.</p>
<p><strong><a href="http://clinton.presidentiallibraries.us/items/browse?advanced%5B0%5D%5Belement_id%5D=43&advanced%5B0%5D%5Btype%5D=is+exactly&advanced%5B0%5D%5Bterms%5D=2006-0885-F+Segment+6">Segment Six</a></strong><br /> This collection consists of the files of the Health Care Task Force, focusing on material from Jack Lew and Lynn Margherio. Lew’s records reflect a preoccupation with figures, statistics, and calculations of all sorts. Graphs and charts abound on the effect reform of the health care system would have on the federal budget. Margherio, a Senior Policy Analyst on the Domestic Policy Council, has documents such as: memoranda, notes, summaries, and articles on individuals (largely doctors) deemed to be experts on the Health Security Act of 1993 qualified to travel across the country and speak to groups in glowing terms about the groundbreaking initiative put forward by President Clinton in his first year in the White House. <br /> Contains 804 files from 40 boxes.</p>
Publisher
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William J. Clinton Presidential Library & Museum
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2006-0885-F
Text
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Paper
Dublin Core
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Title
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Health Reform Technical Work Group on Long-Term Care – 1/19/93 [loose] [2]
Creator
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White House Health Care Task Force
Health Care Task Force
Lynn Margherio
Identifier
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2006-0885-F Segment 3
Is Part Of
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Box 29
<a href="http://clinton.presidentiallibraries.us/items/show/36148" target="_blank">Collection Finding Aid</a>
<a href="https://catalog.archives.gov/id/12093088" target="_blank">National Archives Catalog Description</a>
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Clinton Presidential Records: White House Staff and Office Files
Publisher
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William J. Clinton Presidential Library & Museum
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Adobe Acrobat Document
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Reproduction-Reference
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3/16/2015
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42-t-12093088-20060885F-Seg3-029-013-2015
12093088