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The family as caregiver to the long term care elderly: A resource to protect

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The family as caregiver to the long term care elderly: A resource to protect

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Content THE FAMILY AS CAREGIVER TO THE LONG TERM CARE ELDERLY: A RESOURCE TO PROTECT by Gail Di ane Wi tney A Thesis Presented to the FACULTIES OF THE LEONARD DAVIS SCHOOL OF GERONTOLOGY .AND OF THE SCHOOL OF PUBLIC ADMINISTRATION UNIVERSITY OF SOUTHERN CALIFORNIA In Partial Fulfillment of the Requirements for the Degrees MASTER OF SCIENCE IN GERONTOLOGY AND MASTER OF PUBLIC ADMINISTRATION December 1981 UMI Number; EP58898 All rights reserved INFORMATION TO ALL USERS The quality of this reproduction is dependent upon the quality of the copy submitted. In the unlikely event that the author did not send a complete manuscript and there are missing pages, these will be noted. Also, if material had to be removed, a note will indicate the deletion. Disserfeition P uD iisn sn g UMI EP58898 Published by ProQuest LLC (2014). Copyright in the Dissertation held by the Author. Microform Edition © ProQuest LLC. All rights reserved. This work is protected against unauthorized copying under Title 17, United States Code ProQuest LLC. 789 East Eisenhower Parkway P.O. Box 1346 Ann Arbor, Ml 48106 - 1346 D/4yf5" 6 ' C : ? C ) c ; 5 Of OffOÆfO^OOY OÆjryff^^TTF fy lfx « 2:0^ 0.4Z}Zf0f^ZA ^000 7 (S*erO<7 W Th'is thesi-s^ written by Gail Diane Witney under the direotor of % e r Thesis Committee ^ and approved by all its members, has been pre sented to and aooepted by the Dean of the Leonard Davis School of Gerontology and, the Dean of the School of Public Administration or Urban Planning (underline one). in partial fulfillment of the requirements for the degree of ■ I m j M k __ ......... _ _ ..... .-.1 . . ... ... ‘ Oedn Date TEESic COMMITTEE . k f Dean C hatrman ACKNOWLEDGEMENTS First of a l l , I would lik e to thank Dr. Ruth B. Weg for her patience, counsel and resources in her role as my Thesis Committee Chairperson. I t was not easy to write a thesis in Washington, D. C. and have i t edited and approved in Los Angeles — but Ruth helped me do i t . In addition, I would lik e to thank Dr. Paul Kerschner, of the American Association of Retired Persons/National Retired Teachers Association, who was repeatedly helpful as my thesis committee member and Washington, D. C. resource. Data of c r i t i c a l importance were provided by the National Center for Health S ta t is tic s . In that organiza tion I would lik e to thank Mrs. Barbara Feller for her persistence in seeing that the computer runs requested were produced in a timely fashion. Mrs. Maureen Steinbrunner, of the Office of the Assistant Secretary of Planning and Evaluation, Department of Health aind Human Services, was responsible for the liaison with NCHS. Supplementary data and advice were provided by Drs. Robert Morris and dame Callaghan of the Center for Health Poli cy Analysis and Research at Brandeis University; Dr. Burton Dunlop, of the Urban I n s t it u te , Dr. George Maddox, of Duke University; Dr. Theodore Marmor, Head of Health Care and Epidemiology at Yale University, and Dr. Elizabeth Kutza at the University of Chicago. I thank them all for th eir interest and thoughtful insights. i i F in ally , I would like to thank all of those persons at the Administration on Aging (AoA) who helped make i t possible for me to undertake this project during my time with the AoA. This l i s t includes Mr. Byron Gold for his support and confidence in my a b i l i t y to carry out the project; Miss Debra Pontisso for lending me a shoulder every once in a while; Dr. Harry Posman for approving my transfer to the Office of the Deputy Assistant Secretary of the Department of Health and Human Services, and Miss Kathleen Morrison, Deputy Assistant Secretary of the Office of Human Development Services, within the DHHS. 1 EXORDIUM I t is worthwhile to view the historical antecedents, the events during the past 150 years, in order to understand the family's changing role over time in providing a creative environment for its sick, old, and disabled members. In the early dawn of our history, as a nation, family and extended networks took care of th e ir own and rarely were family members, no matter how many degrees of kinship removed from the immediate family, sent to in s titu tio n s . In fa c t, there were few i n s t i t u t ions av ailable, either in number or d iffe re n tia te d according to social or medical problems, which could be used by families. There were poor houses which had th eir histo ric origin in the poor laws of England which were transported bag and baggage to American socie ty;' and there were j a i l houses. Individuals who were incor r ig ib le , unable to pay th e ir debts, or who committed other crimes or were sick or old and had no family were placed in such in s tit u tio n s . As long as family and extended kin were available, these individuals served as natural support systems for such members and i n s t i t utionalization was not part and parcel of the value system for such families. In the early 19th Century, the United States was ripe for rapid absorption of the technology which accompanied the Industrial Revolution in the Western world. The factory organized along bureaucratized lines made tremendous impetus in its development as a consequence of the War Between the States which began in 1861.......... The demends of the market place led to the extensive development and general acceptance of large scale organizations. These, bureaucratically organized, were best suited to deal with uniformly occurring situations and problems and to treat and handle a large and polyglot population democratically. Soon non-family organizations and in s titutio ns shared family functions. Families and organizations both cared for i l l , disabled, deviant and elderly persons, not necessarily working to g e th e r.. . . .Special in stitutio ns to provide human ser vices manned by new professionals and cadres of non professional workers organized into support systems. M.B. Sussman, Ph.D. January, 1979 IV TABLE OF CONTENTS EXORDIUM Section 1 . THE THESIS' AND ITS PURPOSE.................................... 1 • Statement of the Problem 1 Purpose of the Report 3 2. THE LONG TERM CARE POPULATION.............................. 8 A Definition 8 Service Components Needed 10 3. THE FAMILY AS A CAREGIVING U N I T . . . .................. . . 16 Introducti on 16 The Family Setting: A Strong Caring Unit 18 The Burden of Care giving on the Family Caring Unit 22 4. CRISIS POINTS WHICH AFFECT FAMILY CAREGIVING CAPACITY...................................................... , , 25 Introducti on 25 Major Crisis Points 25 Impli cati ons 27 5. LEVELS AND AMOUNT OF FORMAL SERVICES PROVIDED WITHIN OUR PRESENT LONG TERM CARE SYSTEM.......................................................................... 30 Are Appropriate Levels of Care Chosen? 30 Amount of Formal Service Provision Available: Measuring Unmet Need 32 6 . BARRIERS TO THE PROVISION OF COMMUNITY BASED LONG TERM CARE.................................................... . 36 The Present Long Term Care System and Barriers to Care Provision 36 V Section 7. POLICY OPTIONS................ 47 The Present Long Term Care System: The Development of a Case Management System 47 Additive Effects of Current Program P o1i cy j on Caregiving Capacity '48 Community Based Long Term Care Services Expansion 50 Income Assistance Incentives 53 8. CONCLUDING REMARKS.............................................. 59 APPENDIX 1. TABLES................................. 61 LIST OF REFERENCES............................... 68 Vf S E C T I O N 1 THE REPORT AND ITS PURPOSE Statement of the Problem The scope of public responsibility for Long Term Care (LTC) has become a major policy concern as escalating health care costs and a growing incidénce of chronic d is a b ilit y meet a stagnant economy. Over a twelve year period, national expenditures for nursing home care alone grew from 1 . 3 . to 12.6 b i llio n dollars, an increase of 869 percent. This increase is a result of the interaction of many factors including higher u t i l i z a t i o n , general i n f l a t ion, in te n s ific atio n of services and shifting of expendi tures from state to the federal government. In re la tiv e terms, national nursing home care costs have grown from 3.3 percent of national health costs in 1965, to 7.8 percent in 1977 [1]. To date, 1.3 million persons are liv in g in nursing homes. The Congressional Budget Office (CBO) estimates total national spending for all LTC services to have been 18.1 - 20.4 percent of total national health expenditures in that year [2]. The no n -institutionalized LTC populat ion is estimated between 28 - 30 million people. This increased spending in LTC is largely due to coverage of 1 LTC services by Federal programs, p a rtic u la rly by Medicaid. In 1977, Federal and State programs paid 57% of all nation al costs for nursing home care and 51 - 57% of such costs for all LTC services in 1976 [3]. Medicaid alone paid 51% for all national expenditures for nursing home care in 1977 and 28 - 31% of national expenditures for LTC care services in 1976. As a result of the aging population and the im pact of ju d ic ia l decisions. Federal costs for LTC are expected to continue to increase [4]. The number of per sons 65+ is expected to grow from over 24 million now to 55 million in the year 2030. The Department of Health, Education and Welfare (DHEW) stated that "judicial decis ions requiring that involuntarily committed mentally i l l and retarded patients be served in the least r e s t r ic t iv e settings could increase spending by b illio n s of dollars" [5] . However, despite this projected increase in spending, pra c titio n e rs , cldénts and experts believe that many of the LTC population in need of heal th/social ser vices are either not receiving them, or are being served in an inappropriate manner. I t is common 1 y said that the present LTC delivery system fa ils to accommodate many, p a rtic u la rly those with needs for n o n -institutionalized or community services. Close to 90% of all public LTC expenditures pay for in s titu tio n a l care [6]. Many persons in need of LTC services are unnec essarily or inappropriately in s tit u tio n a liz e d in order to receive public support for th e ir care. Estimates from empirical studies of the proportion of nursing home res idents inappropriately placed range from 6% to 76% [7]. DHEW (1978) estimates this figure to be anywhere from 10 to 40%. The Purpose of This Report While not evident in present funding patterns, there is a growing awareness that LTC is neither exclus ively medical nor in s t i t u t i o n a l . LTC has maintenance support and non-medical dimensions and, for most persons, can be provided in a wide variety o f n o n - i n s t i t u t i o n a l i z e d liv in g arrangements, includuing one's own home, supervised community residences, boarding homes, small group homes, domiciliary care and others. Any lis t in g of LTC services makes i t apparent that they can and are being provided by family and friends. As Table la indicates, families and friends are presently supplying most LTC services to the disabled population. However, families providing such care endure much s a crifice in so doing. Moreover, when th e ir care- giving capacity gives out they are often l e f t with one a lte rn ativ e - - in s t it u t io n a l iz a tio n of a loved one. A l t e r natives, in the form of community based LTC and aid to families receives l i t t l e attention and even less reimbursement' While the changing age structure and l i f e expec tancy of the population have and w ill continue to increase the volume of vulnerable people who need LTC, changes in the structure of the family are also occurring that may make the family less able to assure care or support to those members who need i t . New family forms, coupled with an increase in divorce, decline in household size, and growth of single parent families raise the question of whether the tra d itio n a l family caring unit can even give care to those of its members who need i t . One outcome of the increased pa rticipatio n by women in the labor force has been to raise the price of family members caring for the homebound. Potential income foregone is an opportunity cost becoming more vis ib le to those who must remain at home. While more evidence is needed to chart in which direction the historical trend is headed, i t appears to be toward more reliance on formal agency provision of care. A review of these factors suggests that the a b i l i t y of families to continue to care on behalf of their elderly and disabled may decrease in the next decade. The size of this decrease cannot be predicted with great certainty. I t is wise, however, to develop policies that w ill reinforce incentives to the family caring unit, so that choices other than in s titu tio n a l care w ill be a v a i l able to disabled adults, children and th e ir fam ilies. 4 In order to move toward the design of policies which w ill encourage the development of a family centered and community based LTC system, one must address the f o l 1owi ng i ssues: 1. Who are the no n-in s titu tio n a lize d LTC population? 2. What do they report needing (services and sup ports) to enable them to remain in a family versus an in s titu tio n a l liv ing arrangement? 3. Where, how, and by whom are these LTC services presently provided? 4. What services are presently available to this population in the community? 5. Based upon the above, what are some of the barriers to meeting these needs and therefore maintain communi t y / f ’ami ly support systems? 6. What are some of the strategies for correcting the present barriers to meeting these needs? 7. What is the nature of the dynamic interaction between stages of chronic/functional d i s a b i l i t y , family, or informal support systems and the movement toward the use of formal publicly financed services? The following conceptual framework was designed . ' .*■ and used by the author to examine the above issu,'es. The a v a i l a b i l i t y of a range of altern ativ e liv in g arrangements emerges as a key variable in the successful planning and implementation of a community based LTC support system. i This than 0 f a range of liv ing arrangements implies more a physical structure and includes the construct "fami 1 y caring unit." 1 A "family caring unit" can mean many types of responsible care giving agents (the disabled person him/herself, his/her family and informal supports, family substitutes, and formal service provider agents) who provide substantial physical emotional, social, and economic support services to the ch ro n ic a lly /fu n c tio n a lly disabled person in a variety of a ltern ativ e hometype liv in g arrangements. The range of non-medical LTC services are f a i r l y uniform across and within the liv ing arrangements but vary in how they are provided (degree of informal versus formal), and in what intensity of mix (in accordance with c lie n t differences and a v a i l a b i l i t y of services). A range i he 1ude \k of a lte rn a tive thé ' f o l 1owi ng : liv in g arrangements may FORMM. SUPPORTS AND SERVICES k FAI-IILY FAMILY CARING G ITMT q DAYCARE - 3 INFORMAL SUPIORTS - C FAMILY 6 RESPITE COKGRECATE IKXJSING q SERVICES SUPIORTS SMALL GROUP HOMES INSTI- DOM TUTIOXAL ICILIARY CARE CARE ICF q SNC SETTINGS INFORMAL SUPPORTS AND SERVICES In addition, a decision tree has been developed to aid in determining which living arrangements may be preferable by c lie n t type and the range of service needs across and within such arrangements. The tree id e n t ifie s , in descending order, the points of r e la t iv e ly greater v u ln e ra b ility and Indicates times of crises when changes in support systems become necessary. ( See Tables 2a and b] S E C T I O N 2 THE LONG TERM CARE POPULATION A Definition Two population groups were considered in describing the LTC population: the "chronically i l l " and the "funct ionally disabled." Although these categories can and do often comp i rs e some of the same people, they do not e n t ir e ly overlap. There are chronically i l l people whose illness is not associated with any demonstrable functional d i s a b il i t y , and there are those who are functionally disabled as a result of acute or non-chronic, illn e s s . The target LTC population is that group which was id e n tifie d as hav ing functional d i s a b i l i t y as a result of, or in association with, a chronic illness or chronic condition - in and out of in s titu tio n s . I t includes the physically disabled, the deve1opmenta 11 y disabled, the chronically mentally i l l and the f r a i l eld erly. The data base referred to throughout this report is the National Center for Health S ta tis tic s 1977 Health Interview Survey (HIS). This HIS is a survey of the c iv i l i a n , no n-in s titu tio n a lize d population and defines the population by lim ita tio n of functional a c t i v i t y due to chronic conditions. The HIS has grouped the population into three categories of chronic a c t i v i t y lim ita tio n : those unable to perform major a c t i v i t y (LA 1); those 8 able to perform usual a c tiv i ty but limited in amount or kind (LA 2); and those able to perform usual a c t iv i t y but limited in outside a c t iv i ty (LA 3), resulting in the f o 1 - 1owi ng breakdown : LA 1 = 7 ,6 5 5 ,4 0 4 (7.6 m illion ) LA 2 =14,336,114 (14.3 m illion) LA 3 = 6,585,232 (6.6 m illion) TOTAL 28.5 M illion A major problem with respect to the HIS data base is the extent to which i t adequately represents those non- in s t it u t io n a l iz e d , functionally disabled individuals with mental illness or retardation. The National Plan for the Chronically Mentally 111 - estimates its target population to range between 1.7 and 2.4 million persons. The devel opmental 1 y disabled population, under th eir new 1978 "functional definition" is estimated at 3.4 m illion per sons, the majority of whom are n o n -in s titu tio n a liz e d . I t is not known how many of these l a t t e r two categories were already included in the HIS data set. Also, HIS does not include those individuals who reside in group homes for the mentally retarded. The HIS data plus adjust ments for the above states factors have resulted in a total estimate of the LTC population at approximately 28 - 30 m illio n . This report .concentrates upon the LA 1 population who report needing assistance in the house, outside of the house, ..inside ^vand outside of the neighborhood. and a subgroup who needs help both inside and outside of the neighborhood in order to stay at home. Due to the sev e r ity of th e ir chronic illness and functional lim itations the entire LA 1 group constitute those most "at risk" of i n s t i t u t i o n a l i z a t i o n . Over the past 50 years, this group has been brought to the attention of DHEW because they acquired a measure of entitlement to public aid due to th e ir i n a b i l i t y to work. For a breakdown of the type of help needed, see Table 3. Regardless of the age or sex of the LA 1 person, they lis ted family and friends as the greatest source of help (86 - 87%). Inspection of the "source of help" data, cross tabulated by sex and age, revealed differences in degree of reliance upon family and friends versus formal agencies and are discussed in Sections 3 and 4. The family, however, s t i l l prevails as the primary help source, i Service Components Needed The Under Secretary has commissioned three cross cutting research reports to examine the health and social service needs of the LTC population who are either i n s t i t utionalized or community based. The "Illness and D is a b il it y Report" focussed upon medical services needs. The Dependency Report examined personal care (bathing, dress ing, eating, and t o ile t in g ) ne eyds . - T hi s rep p rt Çp c u s s e d on those non-medical services and supports which are -jq necessary to enable the LTC population to liv e in the community with th e ir family and friends. These services include income (to procure services), personal assistance (encompassing homemaker, chore, shopper, transportation aid, morale building, aid with housefixing and re loc a tion), day care and respite, counseling, and advocacy, a ll of which can be provided in a variety of liv in g arrangements. Income. Adequate income held by à disabled person or a w illin g family presumably permits the purchase of many necessary services without recourse to public provision. I t may permit w i l l i n g , caring family members to provide personal assistance without such members having to enter the wage labor force. I t may also permit a family to maintain another member at home versus resorting to a nursing home or other more fu l l y funded f a c i l i t y . Income, here, was defined as only that extra margin of disposable income a v a i l able to purchase personal attendant services from others: a sum above and beyond the normal requirements of a non-disabled person for housing, food, et cetera. Personal Assistance. The major services included are : 1. homemakers to assist disabled persons with house hold maintenance on an in te rm itte n t, part-tim e, or f u ll-tim e basis; 2. shopping and other mobility aids involving an 11 adult to assist the disabled person with tasks out- ' side of the household; 3. transportation for the f u lf illm e n t of necessary functions by the disabled person, such as shopping, procurement of household goods or v i s i t to medical care ; 4. chore services, usually of an in term itten t and short-term nature, involving maintenance or repair in household or clean-up on premises; 5. morale-building in the form of counseling or friendly v i s i t i n g , often necessary at a time of crisis to reinforce people's willingness to remain in the community; and, 6. reassurance and telephonedevices to f a c i l i t a t e quick access to help in case of a rapid or unex pected • change in physical capacity and to allow contact with others. Housing and residence. Modification of physical pre mises or assistance to locate more appropri a t e , s u i t able housing for the disabled may make the difference between the a b i l i t y of a disabled person to remain in a private residence or not. The a b i l i t y to locate more appropriate, suitable housing depends upon its a v a i l a b i l i t y in the community. Day care and respite services. These represent part- time attendant care for the disabled outside his/her 12 home, offering respite for other caregivers for part of the day while assuring adequate attention to the very disabled. Day care also functions as a positive th e r apeutic service for the disabled person. Physical security of a neighborhood may also spell the difference between a disabled person's willingness to continue liv in g in a normal community. Communities in which there is a high risk of physical attack or violence may seriously erode the determiniÇioh-' - - es pecially of the elderly - to continue to liv e outside of a protected i n s t it u t io n . Counseling. The reader should not confuse counseling in the sense of therapy but define i t in the following ways : 1. For crisis counseling or monitoring on the Public Health model. Here a network of counselors are triggered to enter each situation where a c ris is occurs (death of a spouse, newly id e n tifie d major physical d i s a b i l i t y , aging of a caregiver, e t c . ) . The purpose is eith e r: (1) to help an informal family and friendship network re-mobilize i t s e l f to provide care; (2) to link elements in (1) with supplementary formal supports, for a temporary period; (3) to determine whether the formal system is beyond reconstituting, in which case public dependence becomes necessary. 1 3 While these functions are similar to those of a case manager, they d i f f e r in being organized to enter before decisions about dependency have been made, when relationships may be perturbed and f l u i d , and when a decision to re-form informal supports can best be made, with or without formal agency help. The comparable model is that of the public health nurse who contacted every mother with a newborn child. Few mothers use public resources, but very vulnerable ones were id e n tifie d early. 2. A variant of this is the approach f i r s t proposed by the Federal Council on Aging in which a most vulnerable class ( e . g . , all over 75 years old) were regularly monitored by case managers and advoca t e s . 3. F inally, there is maintenance counseling which is an integral part of case management when public services are provided ( i . e . , when "dependency" as we have defined i t e x is ts ). This "counseling" follows a publicly dependent population on a maintenance basis to assure best use of resources f i t t e d to changing c lie n t l i f e chances. Advocacy Services. Advocacy - in the strongest sense is action taken by or for the powerless to restore to them a measure of control over th e ir own s i t u a t i o n . 14 Much of this action is directed at obtaining improved and more comprehensive services for this population by moni toring the services presently available, identifying major service inconsistencies and rigorously espousing needed changes. 15 S E C T I O N S THE FAMILY AS A CAREGIVING UNIT Introducti on Service needs of the LA 1 LTC population cannot be examined independently of the liv in g arrangement in which such services are being provided. Nor can the histo rical evolution of the formal social services system be ignored. T r a d itio n a lly , the family, as caregiver, has pro vided the assistance needed by its disabled re la tive s. These patterns are s t i l l true today. The HIS data clearly reinforce that families remain the primary help source for the LA 1 population of both sexes and at all ages. Of the 18 - 64 year old population who report having a help source, 86% name relatives as th e ir major source. Among those 65+, 87% name re la tiv e s . These patterns remain sim i l a r when broken down by sex and age. (See Tables la and b) Formal services appear to be -introduced when family supports either do not exist and/or are unwilling to provide services. This tra n s itio n can be seen when we look at the older LA 1 population. There is a higher reported use of formal services among males and females, 65j^ who are confined to bed than among those between ages 18 - 64. Bedridden males and females, 65+ report a combined use of " Nurse and other " as 15% and 16 24% respectively. There was also a simultaneous increase in reliance upon relatives among women 65+ (88% versus 82%). Reliance upon relatives and formal supports both increase as the degree of help needed became more intense. Relatives remain the primary help source for all degrees of help needed. While a "family caring unit" may mean many types of responsible caregiving agents, who provide substantial physical, emotional, social and economic supr v port services to the disabled, this report has examined how services are delivered in a family setting. , The HIS data r e fle c t just how important the family setting is to the L A I population's a b i l i t y to stay in the community. The'family setting is home for close to 90% of this population (see Table lb ). Not only is i t home but its members (re la tiv e s ) act as the primary help source, regardless of how great the d i s a b i l i t y . Other research indicates how hard families fight to keep th e ir disabled at home - and how great the burden of caregiving can be. Since i t is presently the strongest source of help and also the home for so many disabled, responsible government must begin to id e ntify the formal service needs due to changing family circumstances and the barriers which presently in h ib it adequate provision of those services to those at home. Only then can the appropriate interventions to enhance the family's a b i l i t y to continue as a strong support system to its disabled be advanced. 1 7 The Family Setting: A Strong Caring Unit Use of Formal Services. The use of formal services is strongly influenced by three factors: family cap acity for caring, community capacity for providing informal support, and the d i s a b i l i t y level of the LTC c l i e n t . In terms of family capacity, four sets of family arrangements can be id e n t ifie d , each of these being further subdivided according to the closeness of the family relationship - e.g. between spouses, between other r e la tiv e s , between parents and children. The four arrangements are that the (1) LTC person: has relatives and lives with them; (2) the relatives liv e separately but close by; (3) the relatives exist but liv e far away; or (4) no relatives ex is t. In each sub-category, the closeness of the family r e l a t i o n ship, willingness, and ca pability to take responsibil ity can vary, and affe c t the measure of true family capacity. Other Evidence Supporting Family Caregiving E ff e c t iv e ness. A s ig n ific a n t body of research support the HIS findings that families are e ffe c tiv e and w illin g caregiving agents. Although much of this research concerns the elderly population, i t is suggested that family acts as a resource, to varying degrees, across the LTC population. 18 Families provide substantial help. The bulk of home health and home health aide services (80%) for the elderly and chronically disabled are provided by family members [8]. Ohter important contributions to the current p o rt ra it of the role of family are two GAO reports. The GAO study of services for the elderly in Cleveland showed that 23 percent of the sample were assessed as impaired. Of those impaired, 56 percent were receiving services from family or friends [10]. Provided on this informal basis were transportation (60%), checking (44%), homemaker (20%), administrative and legal (15%), meal preparation (13%), housing services (12%), coordination (8%), groceries and food stamps (7%), continuous supervision (6%), nursing care (3%), and general financial help (2%). When these elderly were asked i f a primary source was available i f sick or disabled, 87% answered "yes". Of those who did have a person who would be a v aila ble, 89% names a family member [11]. In 1977, a national prob a b i l i t y study revealed that of the 181 bedfast elderly the primary caretaker was the spouse: 38% of the housework was done by the spouse, 44% of the meal preparation, and 30% of the shopping [12]. Children, were the next helping source. Formal social service agencies were infrequently mentioned. 19 Mahoney, in a reanalysis of Harris Poll data, found that among those elder persons with children, almost all had interchanges of some form. Ninety percent received g i ft s ; 70% received direct physical a s s is t ance when they were i l l ; 45% reported receiving money; 34% received help with errands; and 27% received help in fixing things around the house [13]. The presence of immediate relatives also makes i t possible for bed fast persons to liv e outside of in s titu tio n s ]14]. The family, as a caring unit, seems to influence the rate and timing of i n s t it u t io n a l iz a t io n of the chronically i l l / f u n c t i o n a l l y disabled. The following statements become of great import: "Maddox has stated that for many individuals who are at high risk of i n s t i t u t i o n a l i z a t i o n , the absence of an e ffe c tiv e family unit is a crucial factor in th eir institutionalization." ]15] "Individuals lacking strong family and economic supports are lik e ly to be prematurely admitted to nurs ing homes." [16] In a l l , the most s ig n ific a n t finding is that d i f f e r ent individuals with sim ilar levels of impairment, ranging from moderate to t o t a l , were, on the one hand, in s k ille d care f a c i l i t y nursing homes, and, on the other, able to remain in the community. As Tables 4a and b indicate, while there is a high correlation 20 between in s tit u io n a liz a tio n of an elderly family member and the level of impairment, those elderly persons who are "greatly" or "extremely" impaired and are liv in g with family, kin or friends - espec i a l l y with family - are less lik e ly to be i n s t i t u t i o n alized than those who are living alone. The Family Caring Unit as an Effective Economic Resource. The finding here that was striking was that family and friends "pay" far more than community formal service agencies for maintaining the elderly member at home regardless of impairment le v e l. In a recent study by Sussman (1979) a cost/benefit analysis was run on the v i a b i l i t y of providing economic support to fam ilies. The basic premise was that " i f i t could be demonstrated that 'interventions' were less costly than existing practices in a given service area, and that such new ways could enhance current program outcomes, then one has some evidence that resource allocation and change in organizational structure may be warranted." [17]. Although his cost data are by no means conclusive, those available and analysed indicated that i t was far less costly to provide economic supports to families than to have severely disabled elderly in in s tit u tio n s . This finding may be s t r 0ng 1 y <c0r r ë 1 ate^: ' with the above presented research findings. 21 During 1977, the GAO conduected a cost/benefit analy sis of another of the sample of elderly in Cleveland, Ohio, in order to determine when the cost of caring for a sick older member at home exceeded the cost of i n s t i t u t i o n a l i z a t i o n . As Tables 4a and b indicate the following conclusions can be drawn but not pro jected nationally: 1. the average monthly cost or value provided to the elderly by family or friends exceeds the cost or value provided by agencies for all seven levels of impairment, and as impairment rises so does the re la t iv e value of family caregiving; and, 2. for the 10% of the no n-in stitu tio n a lized who f a l l above the breakeven point, the costs for families rise. At the breakeven point, family and friends are providing over $287 of monthly ser vices for every $120 being spent by formal agencies. The Burden of Caregiving on the Family Caring Unit As stated in the introduction, the family's capacity to provide care to the LTC c lie n t influences the degree to which formal agencies become a service delivery resource. When the family's caring capacity to provide help is high (present, w illin g and ab le), the majority of services are provided informally to even the "greatly" impaired LTC c lie n t. ' 22 However, the burden of providing care to an impaired family member, p a rt ic u la r ly by an elderly woman to an a i l ing husband, when there is mental impairment, or when the re la tiv e is working, can be enormous. The strain or burden to the family caring for the mentally impaired elderly was most systematically studied by one group in 1975. They studied 110 mentally impaired elderly and found that over three fourths of the families said that they were facing some burden, while 40% said i t was a severe burden. The burdens included nursing care, demands for atten tion , the development of physical and mental ailments in other family members, restric tion s on employment opportunities, and social and leisure lim itation s [18]. S im ila rly , other researchers have addressed the wife's work in caring for a disabled husband. In her work s itu a tio n , she bears a heavy emotional load, but has no colleagues or supervisor or education to help her handle th is . He own l i f e and its needs compete constantly with her work requirements. She may be limited in her performance by her own ailments [19]. In addition, heavy financial burdens are placed upon the family under the present LTC system. The cost of LTC are frequently f in a n c ia lly catastrophic for the in d iv iduals and families involved. The CBO estimates that 60% of the disabled, 73% of the disabled e ld e rly , and 76% of the in s t it u t io n a l iz e d population, in contrast to only 23 of the general population, have houshold incomes below $7,000 per year [20]. With present high service purchase costs such low incomes leave many families unable to purchase the services they may need and are not e n title d to - a detriment to both the disabled and the family. At a rapid rate the disabled and th e ir families con sume whatever psychological and economic resources they have and are often in danger of family breakup, mental illn e s s , and a possible existence in poverty. I t is important to understand the crisis points which precip it a t e a change in the family's caring capacity, and the way in which these c ris is points may be linked to service needs and formal service provision. Section 4 discusses such crisis points and the poss ible future implications for families and th e ir disabled i f we are not able to respond to them as th e ir caregiving cap'aci ty changes . 24 S E C T I O N 4 CRISIS POINTS WHICH AFFECT THE FAMILY'S CARING CAPACITY Intro duct ion Tables 2a and b display a "decision tree" model which W s been developed to id e ntify those crisis points when altered l i f e chances throw open the decision whether (and how) the family as a caring unit can be reconst itu te d , or whether (and how much) help from a formal support system is required. In short, i t addresses (in gross terms) where we would like to see the disabled per son along the continuum of care so that she/he has the option to remain in the community. Major Crisis Points Loss of caregiver, whether spouse or other r e la t iv e , or f r i e n d . Loss may be due to death, to illness of a caregiver, or to increasing age and enfeeblement of a caregiver. At this crisis point certain minimum services seem lik e ly to be activated: crisis counseling and personal contacts which could strengthen the capacity of remaining family members to decide i f they w ill step into the breach or continue to help despite the reduction in caregiving volume. Such coun seling may be reinforced by supplementary 25 v i s i t i n g , by the a v a i l a b i l i t y of short term day care and respite services. . In more extreme cases, homemaker, chore, and transportation services may be activated; but at this c r i t i c a l time, i t would seem that counseling, morale building, and person al contacts plus short term concrete help are a minimum package of services to help the informal system reconstitute i t s e l f . Reduction in the capacity of ca re giv er. This usu a ll y results from a s ig n ific an t weakening of the only available caregiver by reason of age or d is a b i l i t y . In these situations, i f the weakening is not disastrous, homemaker and chore services, respite services or day care may be added to the less intensive mix of services in the f i r s t exam ple to provide r e l i e f to the caregiver. Relatives or caregivers experience a change in income or are worn out with caregiving. For relativ e s who have, in fact, been giving help, the capacity to continue may be seriously under mined by reduction of income either through in f la tio n or unemployment, th eir own aging, or weariness of the caregiving function. The reper tory of services involved here can include the foregoing plus the possible introduction of 26 income supplements for the special needs of personal assistance. This may allow the caregiv ing family to continue to provide services without threatening the income support of the rest of the family. I t may also reduce the pressure on the disabled. Serious physical deterioration in the m obility, mental and/or physical independence of the dis abled person. Serious or catastrophic illnesses with residual d i s a b i l i t i e s and very old age, espe c i a l l y over 75, are danger points at which the capacity of the family to continue to care for th e ir disabled becomes threatened. For them, all of the above combinations of services, with the addition of intensive physical attention and some form of sheltered liv in g arrangements become crucial for community maintenance. Implications The incidence of each of the above mentioned crisis points w ill increase as the age of the vulnerable population rises. Loss of caregivers, reduction in capacity of caregiver, loss of income, and deterioration of the disabled person also occur with the developmentally disabled, mentally retarded, chronically mentally i l l , but 27 the f r a i l elderly are cle a rly more l i k e l y to be subject to these crises. The U.S. population in 1900 included 6 million people over 60. I t now includes 35 m illion persons over 60, and the numbers w ill continue to rise. Even more to the point, between 1970 and 2000, the 85+ population w ill grow twice as fast as the 75 - 84 year old group, four times as fast as the 65 - 74 year old group, and ten times as fast as the 60 - 64 year old group. In addition, the number of women over 85 is expected to nearly double between 1970 and 1980 [21]. As the older population increases and as i t becomes d i f f i c u l t or impossible for a family to provide care in th e ir own home, other housing arrangements which provide structure and services but not always the fu ll array of services should be available. Congregate housing, small group or domiciliary care may make up for the loss caused by such crises, yet not provide an overabundance of care in an overly r e s t r i c tive setting. The CBO also estimates that in 1976, the number of adults needing to liv e in personal care homes, sheltered liv ing arrangements, and congregate housing exceeded the number actually residing in such f a c i l i t i e s by more than 1.1 m illio n . By 1985, they estimate that 1.1 - 1.3 m illion adults w ill have unmet needs for personal care homes , sheltered liv in g arrangements, and 28 congregate housing. S im ila rly , they estimate that in 1976, 1.4 - 2.2 m illion more adults "needed" home health care or day care than the number served. By 1985, they estimate that 2.9 to 4.3 million adults w ill have unmet needs for homebased services [22]. The above discussion raises two issues: (1) the a b i l i t y of families to continue to care on behalf of the elderly and disabled may be on the decline; and (2) the future a v a i l a b i l i t y of both a lte rn a tiv e community housing arrangements and home based services is already in ; question. Immediate action must be taken to develop policies that w ill enhance the family's caregiving cap acity and ensure that choices other than in s titu tio n a l care w ill be available as changing family demographics and crises occur over the next decade. 29 s E C T I 0 LEVELS AND AMOUNT OF FORMAL SERVICES PROVIDED WITHIN OUR PRESENT LTC SYSTEM Are Appropriate Levels of Care Chosen? Crises may render a family unable to continue providing care, or the same amount of care. I f this hap pens or the family is otherwise unwilling or unable to provide care, i t may turn to formal service agencies. But, what presently happens when they seek formal services? Are they routed to the appropriate level of care? One 1967 study illu s t r a t e d that mentally incom petent e ld e rly , were, to th e ir own detriment, receiving too high a level of care [23]. Some individuals were assigned to a group which received care from profession a lly trained social workers, while the remainder were helped by lesser trained social workers.The death rate of the l a t t e r group was lower, ostensibly due to a lower rate of i n s t i t u t i o n a l i z a t i o n . Because all forms of help were greater in the former group, the authors concluded that the more professionally trained workers "overdosed" the c lie n ts . Families were relieved, but at the expense of the e ld erly . Although these study results are s t i l l chal lenged, questions may be raised as to whether the approp ria te level of care was being provided. 30 A recent Urban In s t it u t e survey of various professionals frequently involved in LTC placement decis ions indicated that need for s k ille d medical care was not necessarily the key factor in placing a person in a nursing home. Lack of knowledge by the decision maker of alternatives may be a more important decision factor. Again, professionals seemed to direct clients into more r e s t r ic tiv e levels of care. Other studies indicated that many workers were more l i k e l y to have serious reservations regarding the a v a i l a b i l i t y and usefulness of community services and, therefore, they were more able and lik e ly to play i t safe and recommend in s t it u tio n a l care [24]. Numerous studies have led us to believe that a sig n ific a n t percentage of those in s t it u t io n a l iz e d need not be. The estimated range of inappropriate decisions varies so much that i t causes questioning of the a b i l i t y to agree on who needs to be in a nursing home^. Yet given this q u a lif ic a t io n , i t is s t i l l d i f f i c u l t to escape the conclu sion that many are misplaced. Choice of inappropriate levels may be due to a bias by professional or family toward taking the "path of least resistance" or "playing i t safe", to lack of agreed upon standards for choosing the appropriate level of care, to financial incentives which seem to favor in s titu tio n a l care, to a lack of knowledge of availa b le , or a lack of 31 community based alternatives which may support the family' caregiving capacity when the c ris is occurs. Amount of Formal Service Provision Available: Measuring Unmet Need A Q u a l i f i e r . Many feel that the present system has fa ile d to meet the needs of the n o n -in s titu tio n a liz e d LTC population. DHEW (1978) stated that between 3.6 and 7.8 m illion disabled persons were, however, receiving help from family or friends. The CBO (1976) estimated that up to 1.4 million disabled adults who were liv in g alone received no care, either formal or informal; i t is not estimated, however, what proportion of these persons did not, in fa c t, need any care by others [25]. I t must be understood .that i t is very d i f f i c u l t to measure need, p a r t i c u l arly unmet need. Instruments which measure need are not developed enough to be consistently predic tiv e . Individuals with the same physical capacity may, because of individual chara c teristic s , housing arrangements, and presence of family and informal supports, have very d iffe re n t unmet needs. They may also have d iffe r e n t desires for care as opposed to needs. No studies, to date, factor all these things into the measurement of need, and therefore a ll must be seen only as p a rtia l indications of need. 32 Unmet Need. Unmet need was measured among i n s t i t u tionalized elderly persons in Massachusetts [26]. Among the social services studies were transportât-, ion, personal care, housekeeping, social a c t i v i t i e s , emergency assistance, food shopping, and food pre paration. The majority of elderly persons (88%) reported no unmet needs. However, there were ■ : sharp differences in the level of unmet need within the sample. Only 7% of the elderly liv in g with th e ir spouse had one or more unmet needs, compared to 17% for those who lived alone, and 22% who lived with th e ir children. The incidence of having one or more unmet needs increased with age, from 6% for the 65 - 69 age group to 28% for those 85 years and over. Transportation was the type of service most frequent ly cited as a problem. About It had unmet transport ation needs and considered i t a big problem, another 24% were somewhat re s tric te d or had some problems with transportation, and the remaining 69% were generally s e l f - s u f f i c i e n t and unrestricted. Another study team conducted additional interviews with 250 of the above persons [27]. These respond ents were divided into need categories based on whether (1) services were needed to stay in the community; (2) needed services plus sheltered hous ing; or, (3) they needed 24 hour care in an ins t i t - 33 ution. Among the minority of the subsample who f e ll in the l a t t e r two groups, 24% had unmet needs in the areas of medical care, food preparation, food shopp ing, personal care, housekeeping, transporta1 1pn or social interaction . Based on the GAO study i t was estimated that 1 in 3 older adults had illnesses tbat in terfered greatly with th e ir daily a c t i v i t i e s . These illnesses includ ed mental impairment (14%), a r t h r i t i s (14%), c i r c u l ation (8%), heart trouble (6%), and high blood pres sure (5%). These illness es, along with the wearing out process of aging, caused many older people (39%) to have trouble doing routime. daily tasks [28]. In addition, 27% needed help in performing one or more tasks, and 12% could not do one or more tasks even when helped. These people had the most trouble doing housework (29%), getting places within walkimg d is tances (22%), and going shopping. AO also demonst rated that 65% of th e ir sample were defined as need ing some kind of help. Only 8% were defined as receiving a ll of the help they needed, while 57% needed additional help. F in a lly , i t could be argued that the need for day care and respite has been demonstrated by its rapid expansion (from 15 - 600 centers) over the past six years - despite poorly coordinated funding mechanisms 34 and unavailable funds. Close to 25 Federal funding sources exist each covering certain aspects of the development of a center. Waiting l i s t s are long, centers are few in rural areas and due to heavy transportation costs, even those located in c it ie s ^ may be d i f f i c u l t to access. Evidence exists indicating unmet LTC needs, although measures are not preceis and often do not take into account factors (.e .g family supports) which may offset perceived needs. Barriers to meeting these unmet needs ex,ist and are discussed in Section 6. 35 S E C T I O N 6 BARRIERS TO THE PROVISION OF COMMUNITY BASED LTC The Present LTC System and Barriers to Care Provision The following l i s t s some of the barriers to the provision of LTC in the present system which appear to decrease the capacity of LTC persons to remain in their family settings and may f a c i l i t a t e i n s t i t u t i o n a l i z a t i o n . The problems presented were substantiated by refe rral to present le g is la tio n or regulation, LTC policy researchers, caseworkers, public opinion, family members, and LTC consumers. Lack of a Case Management Function. The current system lacks important case management functions. There is no centralized information, r e f e r r a l , and counseling, no comprehensive package of services, or one for p u l l ing together d iffe re n t financial and service resources. There is no one central rationing agent for allocating lim ited resources for service delivery and financing among those with LTC needs (p a r t ic u la r ly for personal social services in community and in-home settin gs). There is no centralized mechanism for assuring and as sisting placement in the most cost e ffe c tiv e care set ting, no centralized coordination of Service-del i very and funding sources, no centralized patient monitoring and periodic 36 reassessment of needs, or no centralized advocacy for individual clie nts. The burden for finding the appropriate level and combinations of services rests primarily with the individual c lie n ts , th e ir families and certain professionals, who, i t may be asserted, are i l l equipped to do so [29]. Additive Effects of Current Program Policies on Fam i l y Caregiving Capacity. What follows is an analysis of certain public programs and th e ir possible impact on the financial and caring behavior of families of LTC persons. Although not all of the programs co ordinate with the services mentioned in this report, the additive effects of d iffe rin g e l i g i b i l i t y c r i t e r ia , scope and types of benefits, resource intens ity and care provider pool, can and do have major impact on clients and th e ir fam ilies. Medicare. This program is the most universal of all Federal health programs and serves d ire c tly the en tire elderly population. Funds are expend ed largely for acute hospital care and physicians . services, and thus are not helpful to those with comprehensive LTC needs. Of the $20 b i llio n budgeted for the program in FY 1977, less than $0.5 b i l l i o n was spent on home health care ser vices [30]. The immediate impact on families 37 relates d ire c tly to restric tion s placed on home health care services*. Current program mandates r e s t r i c t this service coverage to merely 12 to 15% of the total needy population (based on CBO estimates). Medicare restrictions on the number of days per year in s k ille d nursing f a c i l i t i e s when a c l i e n t may be in need of short term s k i l l ed treatment, results in a corresponding in cre mental build up of copayments a fte r an i n i t i a l twenty day period. This can quickly drain in div idual and family resources, f a c i l i t a t i n g spend down to Medicaid e l i g i b i l i t y and, thus, may encourage keeping the LTC c lie n t i n s t i t u t i o n a l ized. Medicaid. Medicaid's role as the prime government purchaser of nursing home services is analogous to Medicare's role in the purchase of hospital services. While Federal regulations for home health benefits are more lib e ra l than under Medicare, States have sig n ific a n t leeway in implementing these benefits ( i . e . some lim it the number of annual v i s i t s ) . Medicaid reim-n burses home health aide v is its and also may reimburse personal care assistance in the home; although only nine State Medicaid plans provide such reimbursement. The national Medicaid _________________________________________________________ 3B__ expenditure and services u t i l i z a t i o n figures suggest several issues impacting on fa m ilies. F i r s t , State e l i g i b i l i t y requirements and service res tric tio n s place many marginally poor beyond the scope of needed services. Secondly, Medicaid reimburses all in stitu io n a l costs for those e lig ib le s placed in in s tit u tio n s . This not only favors in s tit u tio n a l settings, but discourages shared family financial supports (though efforts are underway to recoup portions of these costs through new consolidated SSI-Medicaid deeming guidelines and State programs to co llec t fixed percentages of family income.on a sliding scale basis). F in a lly , the in s ig n ific a n t Medicaid expenditures directed toward home health and personal care services place the government sup port burden on the limited categorical grant monies available through T i t l e I I I of the Older Americans Act and T i t l e XX of the Social Security Act to meet the large volume of unmet need. T i t l e XX. The T i t l e XX program has quickly become the major government provider of a variety of social and personal support services for a wide variety of populations. Though close-ended at $2.7 b i l l i o n natio n a lly . T i t l e XX provides around 39 15 percent of its funds for in home services to the elderly and disabled ($465 m illion) [31]. The primary services provided are homemaker, chore, transportation, day care, and counseling services. States are required to make SSI, AFD,C, and Medicaid recipients e l i g i b l e for T i t l e XX services; other e l i g i b i l i t y is l e f t to the States. Many marginal poar are, thus, lik e ly to remain outside the scope of the T i t l e XX delivery network; a coverage prob lem sim ilar to those noted in Medicaid and SSI. A recent survey compiled by the Office Of Human Dev elopment Services of HHS found that 29 State T i t l e XX programs make specific provisions for selected in home attendant care services for the disabled or impaired children or elderly e l i g i b l e for services [32]. In nine States, such services could be provided by distant relatives or friends. In four, only agency providers could be u t i l i z e d . In four other States, services were re s tric te d to care of the mentally retarded, severely disabled, or the physically abused. In the remaining eight, families could provide a range of homemaker, chore, and related home management and personal care a s s is t ance tasks, although in a few of these States proof of economic need by such families was required. 40 Social Services under the Older Americans' A c t: T i t l e I I I . The Older Americans' Act, as amended in 1973, provides under T i t l e I I I a network of area wide agencies on aging. In 1978, they were funded at an annual level of $450 m illio n . Their purpose is to coordinate, fund and advocate for a wide variety of social and personal care services aimed at the near poor elderly over 60, whose service needs might otherwise go unattended. Access and in home services are two of the p r i o r i t y services mandated. T i t l e I I I is frequently u t i l i z e d to supplement direct services provided through T i t l e XX, Medicaid, and other public programs. Though an increasing proportion of funds is targeted at services such as home health and related in-home services, the funds are in s u f fic ie n t and the mission of T i t l e I I I is tooifrQadly defined to be of sign i f i c a n t r e l i e f on a national scale to families and individual s.in home settings not assisted through other public programs who f a i l in the marginal resource category [33]. SSI . The major Federal income maintenance program supporting those in need of LTC services is the Supplementary Security Income (SSI) Program. However, SSI is intended to provide s u ffic ie n t 41 resources for food and shelter only, and is not intended to provide resources for the LTC needs required for survival in family settings. Several areas of immediate policy concern are raised in reviewing the implementation of SSI. Morrison found that a small percentage of elderly who are e li g ib l e have, in fa c t, not applied for SSI perhaps due to its stigma of being seen as a welfare payments program [34]. The one th ird reduction in benefits for those liv in g in the household of others may also act as a disincentive for direct caring by family and friends, and instead, result in in s tit u tio n a l piacement. D is a b ilit y Payments Program (OASDI). The other major Federal income maintenance program is the D is a b ilit y Payments Program of the Social Security Administrat ion. The cost of this program has been rising dramatically in recent years though this now seems to be le v e llin g o f f. Last year, more than $18 b i l l i o n was expended at a per capita cost of $3,000. The median age of those covered is rising as w ell. I t is now at 55 years and s t i l l gradually ris in g . The number of those covered by the programs, both in general, and among the elderly fa lls well below the national estimates of the functionally disabled [35]. Beyond the limited scope of elig ib le s 42 covered by the program is the question of scope of benefits. What is provided could be considered an early retirement income; i . e . amount s u f f ic ie n t to provide for basic liv in g costs only. Additional costs related to health and personal care needs must be provided through individual or family resources or through other government entitlement programs. I t is safe to say that sim ila r to SSI, the d i s a b i l i t y payments program, as i t now stands, does not protect the disabled against long'term care needs, and, thus, must be primarily provided through the assistance of family and friends, unless the total income level meets State Medicaid or T i t l e XX e l i g i b i l i t y c r i t e r i a . Lack of Monies for Community Based Services Expansion As many parts of this report have indicated, few of the public entitlement programs re ally fund community based services for the LTC c li e n t . Most of the burden is shouldered by T i t l e I I I - B of the Older Americans' Act, T i t l e XX of the Social Security Act, and some monies from the Administration of Developmental D i s a b i l i t i e s . All of these programs have r e l a t i v e l y low ceilings when compared to those of T i t l e XVIII (Medicare), and T i t l e XIX (Medic- ! aid ). Neither of the last two t i t l e s re a lly provide much in the way of nonmedical or community based LTC services. 43 T i t l e I I I - B of the Older Americans' Act w i l l , in FY 1981, provide $219 m illion of that T i t l e ' s funds to provide social services to all elderly - the w e ll, the fun ction ally disabled, and the homebound. Of the funds expended in FY 1981 for in-home services, 15 percent w ill be expended for the homebound e ld e rly. Based on approximately $460.00 per person per year, AoA estimates that 82,000 homebound or functionally disabled w ill be assisted in 1981. (This estimate assumes that an individual w ill receive home v is its or services throughout the year i . e . 52 v is its per year). The AoA believes that this dollar amount is an inadequate amount of resources for assisting families to delay or prevent unnecessary i n s t i t u t i o n a l i z a t i o n . The T i t l e XX ceiling of approximately 2.7 b i l l i o n dollars has not changed considerably since 1972 and in f la t io n has used much of th e ir service delivery d o lla r. In addition, because T i t l e XX is basically State operated. States do not have to target resources at the LTC population. Reporting requirements do not reveal how much of th e ir dollar nation wide is spent on LTC, but practitioners and administrators believe that i t is far from s u ffic ie n t to meet the growing demand for services. Income Disincentives for Enhancing Family Caring Capacity The disabled LTC population and its family is even less able to burden the cost of LTC than the public 44 at large- Roughly 70 percent of the disabled and 73 per cent of the disabled eld erly have family incomes of less than $7,000 per year. Even i f the above agencies had the services av aila b le , i t is questionable to what extent the fam ilies' income levels would allow them to eith e r purchase or to q u alify for them. I t should also be pointed oiiit that when a LTC c lie n t and family are re a lly in need of services from the public, i t is often during a cris is period. Decisions are quickly made and options may be overlooked. In addition, many of the caretakers of the disabled are themselves disabled or e ld e rly . Their income often consists of solely d i s a b i l i t y or retirement income. The majority of the' disabled do rely on income transfers \ for maintaining at least a basic standard of liv in g . The few examples of the severely disabled individuals who have risen to high positions in management or government may be valuable as symbols rather than re fle c tin g the r e a l i t y of the situation of many. To cite a few examples: The 1972 SSA survey found that only 32.8 percent of the severely disabled were receiving OASDI benefits [37]. The CBO report on Long Term Care for the Elderly and Disabled, 1977, estimates that the number of DI and SSI recipients (non-aged) in 1975 as 3.6 million [38]. 45 In a study of the DI program based upon a sample of applicants, i t was found that the average gross annual income from all sources was $3,322 [39], The study also showed that those who were denied benefits were as poor, i f not poorer, than the beneficiaries of the Social Security DI program. Although the above presented data are inconclus ive, i t appears that present programs providing non-medical in-home and other services to the non-instituionalized disabled in th e ir family settings are inadequate to meet the present need among the LTC population. The growth of the elderly population, th e ir longer l i f e expectancy as well as changes in the family structure, portend a much greater demand for LTC services. The fact is that this country w ill have to deal with many more elderly and disabled persons over the next few decades. 46 S E C T I O N 7 POLICY OPTIONS The Present LTC System: Encourage Development of a Case Management System I t is argued that personnel are needed to pro vide assistance to LTC individuals and th e ir families in dealing with the fragementation and complexity of the present LTC system. Although the Department is already moving forward on the "Channeling Demonstrations and Sys tems Development Grants" project, results w ill take sev eral years to come in. Policy Option #1: Encourage Closer Program Coordin ation in States which Combine Reimbursement Programs The OHDS encourages closer program coordination in the 38 states which presently have "umbrella" agen cies administering T itle s XIX and XX, and in 6 states which have T itle s XIX and XX of the Social Security Act, and T i t l e I I I of the Older Americans' Act under the same administrative domain. Policy Option #2: Gatekeeping Mechanism Over Nursing Home Admission State Medicaid agency must ensure and enforce that a preadmission case management assessment be completed on all potential nursing home or in s tit u tio n a l applicants as a contingency for Medicaid reimburse- 47 ment. Additive Effects of Current Program Policies on Family's Caregivinq Capacity: A lternative Measures Policy Option #3: Experiment, at the Federal Level, with Federal Reimbursement Under SSI for Domicilary Care of a Mildly Disabled Person Presently, rather than supplementing the Federal payment with State funds, some States may place these people in Intermediary Care F a c i l i t i e s (ICFs) The extent of this practice has not been measured but the cost implications of inappropriate levels of placement are p o te n tia lly great - and may be robbing public coffers of funds for services expansion. Policy Option #4: Expand and S ta b iliz e Noninstit- utional Safeguards that Presently Protect Nursing Homes Public financing for home care services could be given the same safeguards which surround nursing home reimbursement, thus, encouraging expansion and s t a b i l i t y of n o n-institu tiona l a lte rn a tiv e s . Nursing home rate setting formulas provide a b u ilt in allowance for capital or start-up costs; pro tection against s t a f f "down" time and cost of liv in g in f la t io n increases. Such incentives could encourage the expansion of such liv in g arrangements as day care centers. Policy Option #5: Use Nursing Home Funds for Pro vision of Community Based Care Reduce incentive for i n s t it u t io n a l iz a t io n by using r : 48 an approach in which funds for nursing home care can be used for n o n-institu tiona l care i f the l a t t e r cost is not over some fixed percent (say 75%) of the former. This would involve overcoming the problem of the appropriate id e n t ific a tio n of persons at imminent risk of in s tit u tio n a l admission but would be a move closer to the use of community based services. Hopefully, proper case management efforts would ameliorate t h e " i d e n t i f i c a t i o n " concern. Policy Option #6: Recommend Changing the Homebound Requirement with Respect to Provision of Home Health Aides Under T i t l e XIX Under T i t l e XIX there is a homebound requirement in 23 states, although not mandated by federal regulation, for the receipt of home health services. H is t o r ic a l ly , this requirement was to ensure that O.T. and P.T. services were being delivered to those who rea lly couldn't get to f a c i l i t i e s . Re commend changing the homebound requirement with respect to the provision of the home health aide component only, thus increasing clients served. Policy Option #7: Provision of Medicaid Coverage to Some Who Are Not "Categorically E ligib le" - With Respect to In-Home Services Provision Allow States the option of providing Medicaid cov erage for certain low income aged, blind, and in d iv iduals who need in-home services on a regular basis and who are not "categorically e lig ib le " for Medi-^ 49 caid because th e ir incomes exceed the cash a s s is t ance standards. Community Based LTC Services Expansion Policy Option #8: Increase T i t l e I I I - B Funds Under the Older Americans' Act Increasing the budget of T i t l e I I I - B funds in FY 82 w ill allow expanded in-home, information and r e f e r r a l , and transportation services to the functionally disabled and home-bound elderly - to aid th e ir families in delaying or preventing unnecessary i n s t i t u t i o n a l i z a t i o n . To enact any increase in budget, one of two le g is la t iv e actions must occur: 1. appropriations language which specifies that the increased funds w ill be used to provide in-home and access services; and, 2. an amendment to the Older Americans Act which causes the major portion of the increase to be used by State and area agencies to provide in-home and access services. Policy Option #9: Increase Ceiling on T i t l e XX Funding Available for In-Home Services Although T i t l e XX is the largest provider of the services discussed in this report (14% of 1979 budget went to in-home services but does not t e ll us how many were LTC disabled), that budget has not increased much since 1972, and in fla tio n has a f f e c t ed the a b i l i t y to provide services. I f an increase 50 is not possible the, perhaps, appropriations language could also be developed specifying that a certain portion of funds be used for LTC people in the provision of in-home and maintenance service. Policy Option #10: Encourage the I n i t i a t i o n of Collaborative Efforts Between CETA and HDS Some options which can increase services, provide needed manpower (for licensing, inspection, and quality enforcement) and in a l l , improve the "well being of community based liv in g arrangements "_are presented. 1. Support Services. In this area, we would be looking toward the development of a cadre of people who could be used to strengthen our a b i l i t y to reduce unnecessary i n s t i t u t i o n a l i z ation. These individuals could work in con junction with the professionals who regularly provide in-home health and homemaker/chore services. Having such people available could also stimulate State and local organizations to be somewhat creative in designing programs for th e ir use. 2. Day Care. Here is a s ig n ific a n t monitoring requirement in our new day care regulations. CETA training analagous to that discussed above could be employed in the day care area. In both instances our rationale would be the 51 Federal government's in terest in assisting the States to carry out a Federally imposed respon- S i b i l i ty . Policy Option #11: Expand Upon HUD Experiment With Regard to Housing and the Developmentally Disabled The Department may wish to expand upon the HUD research i n i t i a t i v e to determine what c r i t i c a l var iables in sheltered housing predict optimal care. For example, a major policy issue in residential services for mentally retarded persons concerns the trend toward the p r o l if e r a t i o n of small residential alternatives to large, public in s tit u tio n s . While there is support for the development of residential alternatives to large, congregate i n s t it u t io n s , there is as yet l i t t l e empirical data which aids in determining what c r i t i c a l variables in the small residential environment predict optimal care. Thus, court decrees and State policy declarations are setting the maximum size of small f a c i l i t i e s of 6 - 1 0 residents t y p i c a l l y , regardless of the com prehensive developmental needs of the residents. In other words, size has become the apparent c r i t i c a l variable in small f a c i l i t y development when there is some evidence which suggests size is but one of a number of c r i t i c a l variables in providing optimal care in a residential setting. I t should also be noted however that while there is ____________________________________ E2___ a trend toward the development of smaller f a c i l i t i e s over 70% of all public residential f a c i l i t i e s for the mentally retarded s t i l l have over 200 residents each and 19% house over 1,000 residents each, which suggests that i t remains an important goal to reduce the overall size of residential f a c i l i t i e s . The HDS contribution could be to add funds to closely examine the desirable in medical and non-medical support services in such liv in g arrangements. Policy Option #12: Conduct LTC Manpower Studies - Examine Manpower Issues Related to Providing LTC Community Based Services Without available trained manpower, recommendations for changing LTC program e l i g i b i l i t y , financing and service delivery options may be meaningless. The LTC problem is upon us now - and i t w ill increase over the next decade. I t is necessary to construct an overall manpower strategy based upon expected u t i l i z a t i o n factors for both in s tit u tio n a l and non-institutiona l systems, sta ffin g patterns, and demographic trends over the next decade. The e s t imated cost of such a study is $350,000 for FY 82. Income Assistance Incentives for Enhancing Family Caring Capacity Policy Option #13: Eliminate the SSI Reduction in Benefits Applied When Beneficiaries Live With Others As indicated in this report, since SSI is only meant to cover basic food and sh e lte r, there are times 5 3 when the LTC c lie n t cannot afford the services necessary to remain in the community. There are situations where families with disabled relatives are better off f in a n c ia lly i f that person is in s t it u t io n a l iz e d . Eliminating the reduction could act as an incentive for families to provide services longer eith er through formal or informal means . Policy Option #14: Recommend That When a Client is Being Means Tested, the Actual Income of His/Her Family be Used as a Basis for E l i g i b i l i t y The functionally impaired person, is from the per spective of many policies and programs for the pro vision of services, considered to be a part of a family unit, when the family may re a lly be incapable of providing much financial help. This line of thinking would require the government to prove that c h ild re n s ', spouses', r e la t iv e s ' resources are actually available to the disabled person and his service needs. To c l a r i f y , the family of the LTC c li e n t should be id e n t ifie d as part of the LTC population in terms of determining true capacity to help. Policy Option #15: Examine the In s titu tio n a l Bias in Services E l i g i b i l i t y Under Medicaid Another factor which works to bias in favor of in s titu tio n a l placement is Medicaid e l i g i b i l i t y . In States which cover the "medically needy" expenses _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ I_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ for in s tit u tio n a l care are often high enough to make many of those who are in s t it u t io n a l iz e d quickly e l i g i b l e for Medicaid, while expenses for home health services are generally not high enough to make many persons with sim ilar needs e l i g i b l e for Medicaid. For many low-income disabled, the only adequate source of financial assistance is Medicaid and its nursing home benefits. Policy Option #16: Recommend Provision of Cash Incentives to Families to F a c i l i t a t e Caregivinq in the Community Even some r e l i e f may allow families to carry on longer than they presently do. At best, incentives f a c i l i t a t e the process and make i t easier for the already committed and do l i t t l e to change the minds of the refusers. Such an option must be targeted at certain fa m ilie s , not un iversally, possibly toward : 1. those whose caregiver is also old or f r a i l ; 2. those whose caregiver is working and no other help source is available ; or, 3. those who must pay private agencies or neigh bors, e t c . , because formal services are not in place ( i . e . ru ra l, low inten sity service areas). Family Support Payments Aid to Families with Dependent Parents An abbreviated description of one possible approach is to call i t Aid to Families with 55 Dependent Parents. The machinery is in place through SSI. One approach would be to simply state that any SSI recipient who lives with a supporting family member would be given an additional payment of X amount to be provided to the supporting family member. Another approach would be to lim it payment to those chronically functionally disabled whose only income source is SSI. For example, many younger disabled persons have not worked enough quarters to also receive DI, and, therefore, may be in greater need of a cash payment to help th e ir fam ilie s . S im ila rly , many function a l l y disabled older persons may be receiving OASI, private insurange pensions. Medicare (Part A), etc. and, thus, place a' less financial burden on th e ir providers. However, the caveat to be considered is that the cost of care needed may vary inproportionately to the age or type of disabled person. Close examination of possible formula options is recommended. Direct Grants to Fam ilies. Another approach is through a program of direct grants to families administered through a State or local agency. A subsidy is paid on a monthly basis 56 with a maximum of X. In exchange for the subsidy the family is required to keep accurate records of expenses incurred on behalf of th e ir disabled kin. E l i g i b i l i t y for pa rtic ip atio n includes disposable family income, degree of d i s a b i l i t y , relationship to the caregiving family and residency. The grant is provided to the family member designated as primary caregiver on behalf of the disabled r e la t iv e . The amount of grant is determined by deducting a portion of the financial capacity or income of the disabled r e la tiv e from the estimated cost of care. F ifty percent of the difference between the cost of care and the disabled person's a b i l i t y to pay is borne by the family with the remaining f i f t y percent, not to exceed X do llars, is provided by the grant. This pay ment scheme is predicated on the b e lie f that the costs of meeting the non-medical needs of the LTC client^are frequently beyond that person's financial capacity. When this person is being cared for at home, by family members, i t is assumed that the family is compensating for this difference by contributing time as well as money. Consequently, the burden is shifted from the impaired re la t iv e to the 57 family member, who are then expected to manage without any external support or incentives. Tax Proposals Increases in the Exemption for Dependents. As opposed to creating a new type of credit or exemption, i t may be desirable to expand that existing for dependents. Of course, this exemption applies to a much broader group of individuals, p rin c ip a lly children. I t is also l i k e l y that any increase in the dependency exemption would be accompanied by an increase in all personal exemptions, so as to simplify the calculation of exemptions in general. Expansion of the Credit for Child and Dependent Care Expenses. The existing credit for child and dependent care expenses applies to expenses incurred in paying someone to care for children or dependents so the taxpayer can work. The dependents must liv e in the same household and be unable to work for themselves. The credit is limited to 20 percent of up to $2,000 of expenses for one child or dependent, or $4,000 for two or more. Thus, the maximum credit is $400 for one child or dependent, $800 for 2 or more. 58 S E C T I O N 8 CONCLUDING REMARKS While the changing age structure and l i f e ex pectancy of the population have increased the volume of vulnerable people who need LTC, changes in the structure of the family have also occurred that may make the family less able to assure care or support to those members who need i t . New family forms coupled with an increase in divorce, decline in household size, and growth of single parent families raises the question of whether the tra d itio n a l family, as a caring unit, can even give care to those of its members who need i t . One outcome of the increased pa rtic ip atio n in the labor force has been to raise the price of family members caring for the homebound or disabled. Potential income foregone is a real opport unity cost becoming more v is ible to those who must remain at home. More evidence is needed to chart in which direction the h is to ric al trend (toward increased use of formal services) is headed, but i t certa inly appears to be toward more reliance on community based formal agency provision of care. / Current trends in changes in the family are relevant to the family's future capacity to give long term care to a member who needs i t . The effec t of these 59 changes is presumed to be s ig n if ic a n t. At this point, however, one must speculate rather than give specific estimates. Three variables on which some information exists are considered: - general trends in contemporary family structure - age related family situations and liv in g arrangements - changing longevity and l i f e cycle of women and men A review of the above factors suggests that the a b i l i t y of the family to continue to care on behalf of the elderly and disabled may decrease in the next few decades. One cannot predict the size of this decrease with great ce rtain ty. For example, while we know that more middle aged women are entering the labor force we do not know i f these are the same women who now care for the disabled at home. I t is wise, therefore, to develop policies that w ill reinforce incentives to the family caring unit, so that choices other than in s tit u tio n a l care w ill be a v a i l able to the disabled, th e ir families and future generations. 60 TABLE 1 A: SOURCES OF HELP: PERSONS UNABLE TO PERFORM MAJOR ACTIVITY DUE TO CHRONIC CONDITIONS AND (2) LIMIT ATION IN FUNCTION AND WITH SOURCES OF HELP, BY AGE: 1977 Type of Table: Percent D istribution (V e r tic a l) C iv ilia n Non in s tit u tio n a l Population With I1#itat1em In Function [1] Sources of Total Confined Needs Help Getting Around Selected &ibgroups Help to Bad In Mouse In Neighbor hood Outside Neighbor hood Confined to bed 6 Needs Help Getting Around Mouse Needs Help Getting Around In and Outside Neighborhood P E R S O N S U N A B L E TO P E R F O R M M A J O R ACTIVITY D U E TO C H R O N IC CONDITIONS [2] 18-64 years TO TAL [3] 100 100 100 100 100 100 100 Relatives 86 83 K 84 86 86 84 / Friends 20 23 26 23 23 33 23 Nurse 5 9 7 6 S 15 6 Other 7 9 10 10 8 13 10 s 65+ years TO TA L ra] 100 100 100 100 100 100 100 Relatives 87 89 89 88 87 90 88 Friends 17 9 12 16 18 9 16 e e Nurse 8 14 16 11 9 20 11 Other 11 14 14 11 11 16 11 18-64 years total, 13] . 100 100 100 100 100 100 100 y Relatives 88 82 88 84 88 82 84 Friends 16 14 14 17 17 21 17 Nurse 4 6 6 6 4 17 6 Other 5 7 6 6 4 15 5 65+ years : total F3] 100 100 100 100 100 100 100 i E Relatives 86 87 89 85 85 92 85 Friends 20 10 15 21 23 13 21 Nurse 6 12 15 9 7 21 9 \ Other 9 11 9 9 9 7 9 18-64 years TO TA L [3] 100 100 100 100 100 100 100 Relatives 83 82 83 84 83 88 84 / Friends 27 31 35 29 30 40 30 Nurse 7 11 8 6 7 14 6 Other 10 11 13 14 12 11 15 < u 65+ years 1 to ta l 13] 100 100 100 100 100 100 100 Relatives 88 90 90 89 88 89 89 Friends 13 8 10 13 13 8 12 Nurse 10 15 15 11 11 20 11 Other 14 16 16 13 13 19 12 [1 ] Persons nay be classified as having acre than one functional lim itatio n . [2] Persons unable to perform major a c tiv ity are classified In the MIS as LA 1. [3] Date restricted to persons with lim itation In function and with sources o f help. Such persons m ay have more than one source of help; therefore, the sum of persons ln y source of help w ill not add to to ta l. 61 TABLE I B : LIVING ARRANGEMENTS: PERSONS UNABLE TO PERFORM MAJOR ACTIVITY DUE TO CHRONIC CONDITIONS, BY AGE AND WHETHER LIMITED IN FUNCTION: 1977 Type of Table Percent Distribution (V e rtic a l) C iv ilia n Noninstitutional Population With Limitation In Function [1] Living Arrangements 1 Total Confined to Bad Needs Help Getting Around Selected Subgroups In House In Neighbor hood Outside Neighbor hood Confined to bed -1 Needs Help Getting Around House Needs Help Getting Around in and Outside Neighborhood P E R S O N S U N A B L E T O P E R F O R M M A JO R ACTIVITY D U E TO C H R O N IC CONDITIONS [2] 18-64 years TO TA L 100 100 100 100 100 100 100 Living alone 13 15 9 10 13 13 10 With nonrelative 3 3 5 4 3 2 4 With spouse 62 58 52 52 52 48 52 With other relative 22 24 35 34 32 38 34 65+ years TO TA L 100 100 100 100 100 100 100 Living alone 17 13 11 16 16 13 16 With nonrelative 2 3 3 3 3 2 3 With spouse 60 51 44 39 41 44 39 With other relative 21 33 42 42 39 40 42 / 18-64 years TO TA L 100 loo 100 100 100 100 100 Living alone 12 10 4 8 8 5 8 With nonrelative 3 5 6 6 4 6 6 With spouse 68 68 66 62 64 50 62 With other relative 17 17 24 24 24 39 24 65+ years TO TA L 100 100 100 100 100 100 100 Living alone IS 1 1 9 14 15 7 14 With nonrelative 2 4 3 4 4 3 4 With spouse 73 69 67 62 62 63 62 With other relative 10 16 21 20 19 27 . 20 18-64 years T O TA L 100 100 100 100 100 100 100 Living alone 16 20 12 12 18 17 12 With nonrelative 3 1 4 2 2 2 With spouse 39 47 40 39 36 45 39 With other relative 42 32 44 47 44 38 47 65+ years TO TAL 100 100 100 100 100 100 100 Living alone With nonrelative With spouse With other relative 21 3 26 50 14 3 38 45 13 2 32 53 17 2 24 57 17 3 24 56 15 3 37 46 17 3 24 56 S i/i ■ f o i I I [1] Persons m ay be classified as having more than one functional lim itatio n . [2] Persons unable to perform major a c tiv ity are classified In the HIS survey as LA 1. 62 TABLE 2A: DECISION TREE MODEL (PERSONS UNDER 65) ALL FUNCTIONALLY DISABLED Age Group THE Y O U N G UN D ER 17 ADULTS 18-64 A b ility to condud major a c tiv ity THE A G ED 65 A N D O VER - © M O D ER A TE SEVERE DISABILITY DISABILITY Prog^iosis STABLE 1 DETERIORATION ■Level and source of incdme ADEQ UATE INCO M E Source; TRANSFER PA YM EN T INDEPENDENTLY SECURE W O R K DEPENDENT O N SPO USE O R OTHER :U R E ^ loss V INADEQUATE INCOM E Reason: DENIED INCOME TRANSFERS (BENEFITS) UNABLE TO W O R K L O W INCOME FAMILY O R N O FAMILY ^ Capacitvi fo r s e lf care M O D ER A TE LIMITATIONS IN A DL SEVERE L IN IMITATIONS \DL l.iY_ing_.arra ngemen ts LIVES ALO NE LIVES WITH O THER Change in other N O C H A N G E C H A N G E IN O THER LO SS O F CAREGIVERS DISABILITY/ ILLNESS/ ADVANCED A G E EM PLO YM ENT N O M O R E WILL TO C A R E DEATH FAMILY DISSOLUTION ^ Relatives and informal network^ RELATIVES N EA R AND/OR SUPPORTIVE INFORMAL N E TW O R K N O RELATIVES O R LIVING FA R A W A Y P O O R N E TW O R K CHARACTERISTICS O F ENVIRONMENTAL MIX , 1. LOCATION: "RURAL, URBAN, ' S U B UR BA N I 2. TYPE O F HOUSING I 3. COMMUNITY SAFETY , 4. AVAILABILITY O F AMENITIES . 5. TYPE & A M O U N T O F FO R M A L N E TW O R K , 63 TABLE 2B: DECISION TREE MODEL (PERSONS OVER 55) — - > ® ADVANCING A G E THE AG ED 65+ IN COMMUNITY INSTITUTIONALIZED N O T H O M E B O U N D H O M E B O U N D ADL FUNCTIONAL DISABLED LIVES W/FAMILY O R OTHERS LIVES ALO NE [ family NEARl [T am ilY far i [h i CFC I f LO CFC I [ h i CFC ] [ LO CFC~| EST. INF SUPPORTS N O EST. PATTERNS [ h i cfc EST. INF7 SUPPORTS m IS TT^ PATTERNS EST. in f ; SUPPORTS STIGMA I I DISORG. | STIGMA | | DISORG. STIGMA I V ] INCREASING RELIANCE O N FO R M A L PUBLIC SUPPWÎS N O FAMILY LO CFCle J N O EST. j PATTERNS I DISORG. iGAl [ ^ [GÂ1 [PAI [gK] [F&'l FgA| [ & | \gK] [Al [~ G A ~ ] [PAl K E Y ADL = A c tiv itie s of Daily Living CFC = Capacity fo r Care (W illingness, REsources) EST. INF. SUPPORTS = Established Community-Based Informal Supports N O EST. PATTERNS = No Established Patterns of G A = Good A v a ila b ility of Services PA = Poor A v a ila b ility of Services 64 TABLE 3: TYPE OF HELP NEEDED BY LA 1 POPULATION BY FUNCTIONAL DISABILITY AND SEX. in Cvj VO cn CD Cvj c r> CO C O CO CSJ u_ o g o o o o o o o o o o § o o o CO 0 0 lO CO m 0 0 CO CO CVJ CO CO CVJ 3 -e CO o L O lO CVJ o 0 0 o CO in o o o o o o o o o o o o o o CO o o in in 00 o in u n o in o CO CO in in I/) X in cn o L O CVJ CVJ m o o o o o o o o o o o o o o o o o o CO o o o cn CO CO o o CO CO *o c n t A ■o • I — o O 4 -> + -> 0 » QJ -O CD CD "r— *r— in O C l a ^ 4- c t A -o C L lA CL CL o > -O O O Z J Z o z c ^ o -O ^ or W &_ < 1 > * r - W o w w *o d ) o m s- 3 00 CO 65 TABLE 4A: IMPAIRMENT LEVELS OF INSTITUTIONALIZED AND NONINSTITUTIONALIZED PEOPLE (Percentages) ■ a N CO 00 c c u o =9 C O ■ a N C L C O O O C\ j O J C O (/) S- C O ) o ■ O T - r— (/) < u c (U -O E -o N " I— • I - + - > < 0 3 c s: o + -> -O C O C L. •r— < L ) O •!— (U O J Q _ > S- • =3 L U C O c fO I — C XJ o < u + - > XJ S- < u o C O Q . « 0 (U CO Cd s - I O ) +J + -> c c C D 0 ) < L ) O (_) E I— C L O >> O X 5 +-> I— O r - OJ ^ C O > 4-> S- < U (U (U O s : > • I - c ( /) C fO o : =3 E C 3 o m 3: <Ü 3 X 5 x : Q c I— ft3 • • • O i + -> o c C • T - (U Z C D E <C to E *4- OJ f O o C O x : C O s - > > <=C 3 X 3 Q 3 r— +-> m • oo c I — O (O OJ •I— 3 x : + - > c + - » o to c s : i - 3 O Lc_ < C 4 - 66 TABLE 48: LIVING ARRANGEMENT OF GREATLY OR EXTREMELY IMPAIRED ELDERLY ENTERING INSTITUTIONS (Percentages) o in C M 00 3 C in in o ro m O in C M LO CD C r> cn - a 4 -> Q u in in Q. CO CD u_ >> in s- <v ( U S - ■O ra o 1 — 4 - L U o o T3 ( U *o 0) -C ( U ( U 4 -> + -> z ‘ p — s- c cu o =3 JC 4 - • h - ( U ( U • s z • • ■ o O + -> -C •I" + ■ > > 4- o c O ra s- o ( U o. 4 -> t — 3= CD ra S- C s- ( U ( U 0) E + - ) c o +- ) in ( U zc ( U ra C D C 3 Û 3 c S - o o • c u CD 1 — in r— I — in >> 1 o c u C J O O S - S - * r — + -> c n 1 C L c o Q E o o. O C o C D oc o r— o r c • > c o • • O < = c ( U + -> « r— C D o S - 4 -> s- o f C • 3 CO o ( U • CO oc r c =3 67 REFERENCES CITED Section 1 [1j Gibson, R.M., Fisher, C.R. National Health Expend itures, fiscal year 1977. Social security Bulletin July, 1978. [2j Congressional Budget Office (hereinafter referred to as the U.S., CBü) Long Term Care: Actuarial Cost Estimates. August, 1977. Table 1, p. 12. [3j U.S. Department of Health, Education, and Welfare. Office of the Secretary. Major Initiatives in Long Term Care Community Services. Briefing memorandum for July 14, 1978, meeting. [4J Ibid. [5J Ibid. [6j U.S. Congressional Budget Office (hereinafter re ferred to as the U.S., CBO). Long Term Care of Elderly and Disabled. February, 1977. Table 5, p. 14. Section 3 [8j Brody, S.J., Poulshock, S.W., Masciochhi, C.F. The Family Caring Unit: A Major Consideration in the Long Term Care Support System. The Gerontologist, 18, 556 - 561, 1978. [lOj Comptroller General of the United States. Report to the Congress: The Well Being of Older People in Cleveland, Ohio. Washington, D.C. United States Accounting Office, 1977a. [llj Ibid. [12j Shanas, E. The Family as a Social Support System in Old Age. A paper presented at the 30th Meeting of the Gerontological Society, San Francisco, California, November, 1977. 68 [13] Ib id. [14] Maddox, G.L. Families as Context and Resource in Chronic Illn e s s . In S. Sherwood (ed) Long Term Care: A Handbook for Researchers, Planners, and Providers. Spectrum Publishers, I n c ., New York, 1 97 5. [15] Ib id. [15] Barney, J.L. The Prerogative of Choice in Long Tern Care. The Gerontologist. 1 7 : 434 - 441 , 1 977. [17] Sussman, M.S. Social and Economic Supports and Famfi [18] [19] Environments for the E l d e r l y . Final report to the Admi n i s tration on Aging. January, 1 9 79. Grad de Alarcon, J ., Sainsbury, P., Costain, W.R. Incidence of Referred Mental Illn e s s in Chichester and Salisbury. Psychological Medicine. 3 2 - 5 3 1 97 5. Golodetz, A., Evans, R. I . , Gibson, C. The Care of the Chronically 111: the "Responsor" Role. Medical Care. 3: 385-394, 1969. [20] CBO, 1977a. Section 4 [21] U.S., CBO. 1977a. [22] Ib id . Section 5 [23] [24] Blenkner, M., Bloom, M., Nielsen, M. A Research Demonstration Project of P rotective Services. Social Casework. 483-499. 1 971. Dunlop, B.D., Durman, E.C. The Role of Family, Pro fessional Payment Source in Long Term Care Placement Decisions. The Urban In stituteT- ( Unpublished d r a f t , 1980. [25] U.S., CBO. 1977a. 69 [26] Branch, L.G., Fowler, F. The Health Needs of the Elderly and Chronically Disabled in Massachussetts A paper submitted to the Massachusetts Department of Health, by the Survey Research Program: A Joint F a c i l i t y of the University of Massachusetts/Boston and the Joint Center for Urban Studies of M .I.T. and Harvard University, March, 1975. [27] Sherwood, S., Morris, J ., Gutkin, C. The Needs of Elderly Community Residents of Massachusetts. Draft report to the Administration on Aging under Grant #90-A-641/01. [28] U.S., CBO. 1977a. Section 6 [29] U.S. Office of the Comptroller General. Conditions of Older People: National Information System Needed September, 1979. [30] Wallack, S.S. Callahan, J.J. Major Reforms in Long Term Care: A Systematic Comparison of the Options. A publication of the Center for Health Policy Anal ysis/Research. University Health Policy Consortium. Boston, Massachusetts, 1980. [31] Excerpts from the T i t l e XX State Plan, 1978-79. [32] U.S., DHEW. Task Force Report on Long Term Care. [33] Callahan, J. R esponsibilities of Families for their Severely Disabled Elderly. University Health Policy Consortium, Boston, Massachusetts, July, 197 9. [34] Ibid. [35] Ibid. [36] Ibid. [37] Excerpts from the Social Security Administration Survey Report, 1972. [38] U.S., CBO, 1977. [39] Ib id . 70

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Creator Witney, Gail Diane (author)

Core Title The family as caregiver to the long term care elderly: A resource to protect

Contributor Digitized by ProQuest (provenance)

Degree Master of Science

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag OAI-PMH Harvest,Social Sciences

Format application/pdf (imt)

Language English

Permanent Link (DOI) https://doi.org/10.25549/usctheses-c37-406490

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Identifier EP58898.pdf (filename),usctheses-c37-406490 (legacy record id)

Legacy Identifier EP58898.pdf

Dmrecord 406490

Document Type Thesis

Format application/pdf (imt)

Rights Witney, Gail Diane

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Access Conditions The author retains rights to his/her dissertation, thesis or other graduate work according to U.S. copyright law. Electronic access is being provided by the USC Libraries in agreement with the au...

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