Long-Term Care: Availability of Medicaid Home and Community Services for Elderly Individuals Varies Considerably
Published: 2002-09-26T00:00:00

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: As the baby boomers age, spending on long-term care for the elderly could quadruple by 2050. The growing demand for long-term care will put pressure on federal and state budgets because long-term care relies heavily on public financing, particularly Medicaid. Nursing home care traditionally has accounted for most Medicaid long-term care expenditures, but the high costs of such care and the preference of many individuals to stay in their own homes has led states to expand their Medicaid programs to provide coverage for home- and community-based long-term care.
section_title: What GAO Found
paragraphs: GAO found that a Medicaid-eligible elderly individual with the same disabling conditions, care needs, and availability of informal family support could find significant differences in the type and intensity of home and community-based services that would be offered for his or her care. These differences were due in part to the very nature of long-term care needs--which can involve physical or cognitive disabling conditions--and the lack of a consensus as to what services are needed to compensate for these disabilities and what balance should exist between publicly available and family-provided services. The differences in care plans were also due to decisions that states have made in designing their Medicaid long-term care programs and the resources devoted to them. The case managers GAO contacted generally offered care plans that relied on in-home services rather than other residential care settings. However, the in-home services offered varied considerably.

section_title: Letter
paragraphs: The aging baby boom generation is anticipated to greatly expand the  demand for long-term care services, with some estimates projecting that  spending for long-term care for the elderly could nearly quadruple by 2050.  Medicaid, the joint federal-state health-financing program for low-income  individuals, is currently the largest payer for long-term care services and is  anticipated to face substantial increases in spending as demand for long- term care increases. While coverage of nursing home care has  traditionally accounted for the bulk of Medicaid long-term care  expenditures, the high costs of such care and many individuals’ preference  to receive care in their homes as long as possible has led many states to  expand their Medicaid programs to provide additional home and  community-based services for those who would otherwise be eligible for  nursing home care.
Home and community-based services for elderly individuals with  disabilities can include in-home care involving personal care attendants to  provide hands-on care with activities such as bathing and eating,  household support for activities such as laundry and meal preparation, or  custodial supervision to ensure the safety of someone requiring ongoing  monitoring. Community options can include adult day care, which  provides temporary care in a group environment, and permanent care in  alternative residential settings, such as assisted living facilities or adult  foster care, for those who are not able to remain in their home but who do  not require nursing home care.
Because most home and community-based services are optional elements  of state Medicaid programs, states have discretion in what services are  covered, who may be eligible, and what services they receive. Additionally,  local case managers, who screen Medicaid-eligible individuals to  determine what services they qualify for based on their level of disability,  often have discretion to customize care plans based on the individual’s  needs, preferences, and availability of care services, including unpaid care  provided by family members or other informal caregivers.
The Senate Special Committee on Aging has been examining the current  provision of long-term care to further discussion of what role the public  sector should play in assuring that long-term care needs will be met for the  impending surge of persons who will need care—the aging baby boom  generation. In light of this, you asked us to examine how the availability of  Medicaid-covered home and community-based care that is available for  elderly individuals with disabilities varies both across and within states.  Specifically, we addressed  1.  the extent to which home and community-based services were  available within selected states’ programs for Medicaid-covered long- term care services for the elderly;  2.  the Medicaid-covered long-term care services that local case managers  would offer for two hypothetical elderly individuals with disabilities  based on the levels of unpaid informal care provided by family  members; and  3.  the extent to which care offered to the same hypothetical individual  with the same level of informal support varied among the selected  states.
To answer these objectives, we selected four geographically diverse  states—Kansas, Louisiana, New York, and Oregon— that varied in the  extent of spending for Medicaid home and community-based services for  individuals who are elderly and disabled. In each of these states, we  interviewed state Medicaid officials and reviewed information about home  and community-based services covered by their Medicaid programs. Based  on data the states reported on Medicaid expenditures to the federal  Centers for Medicare & Medicaid Services (CMS) for 1999, the most recent  year for which data were available, we also estimated the amount each of  these states spent on several categories of long-term care services for the  elderly.
To obtain information about the availability of long-term care for our  hypothetical elderly individuals with disabilities in these states, we  conducted interviews with 4 case managers responsible for Medicaid  home and community-based services in each state—a total of 16 case  managers. We asked the case managers to prepare detailed care plans for  six hypothetical situations we presented to them using the same  assessment tools and professional expertise that they would with  Medicaid-eligible clients they served. The six hypothetical situations  represented two elderly persons with certain disabilities and each with  three different scenarios illustrating different levels of informal care  available from family members. In each scenario, the two elderly persons  would have been eligible for nursing home care, but preferred to receive  home or community-based services when possible. If the state had a  waiting list that would preclude the case managers from immediately  offering Medicaid home and community-based services to new clients, we  asked them to assume that the hypothetical individuals had exited the  waiting list and could receive these Medicaid-covered services. Although  some case managers also identified non-Medicaid services that the  hypothetical clients could receive or seek, such as Medicare home health  services, programs offered through the Older Americans Act, or state or  locally subsidized programs, other relevant services may have been  available that the Medicaid case managers did not include in their care  plans.  We did not evaluate the adequacy or appropriateness of the care  plans offered by the case managers for meeting the long-term care needs  of our hypothetical individuals.
The first hypothetical person was a woman who had difficulty performing  everyday activities due to physical limitations, while the second was a man  who had difficulty due to cognitive limitations. Specifically, our  hypothetical individuals were the following:  Abby: an 86-year-old woman with debilitating arthritis who is chair-bound  and whose husband, who had previously cared for her, recently died.
Scenario 1: Abby lives with her daughter who provides most of Abby’s care  but is overwhelmed by also caring for the daughter’s infant grandchild.
Scenario 2: Abby lives with an elderly sister who provides most of Abby’s  care, but the sister has limited strength making her unable to provide all  care.
Scenario 3: Abby lives alone, and her working daughter visits Abby once  each morning to provide care for about 1 hour per day.
Brian: a 70-year-old man cognitively impaired with moderate Alzheimer’s  disease, who has just been released from a skilled nursing facility after  recovering from a broken hip.
Scenario 1: Brian lives with his wife who provides most of his care and she  is in fair health.
Scenario 2: Brian lives with his wife who provides some of his care and  she is in poor health.
Scenario 3: Brian lives alone because his wife has recently died.
Appendix 1 provides additional description of these hypothetical Medicaid  clients, including their specific limitations and needs for additional care  services.
We performed our work from June through September 2002 in accordance  with generally accepted government auditing standards.
subsections: section_title: Background
paragraphs: Long-term care includes many types of services needed when a person has  a functional disability, whether physical or cognitive. Individuals needing  long-term care have varying degrees of difficulty in performing some  activities of daily living without assistance, such as bathing, dressing,  eating, toileting, and moving from one location to another. They may also  have trouble with instrumental activities of daily living, which include  such tasks as preparing food, housekeeping, and handling finances. They  may have a mental impairment, such as Alzheimer’s disease, that  necessitates supervision to avoid harming themselves or others or need  assistance with tasks such as taking medications. Although a chronic  physical or mental disability may occur at any age, the older an individual  becomes, the more likely a disability will develop or worsen.
Assistance for such needs takes many forms and takes place in varied  settings, including institutional care in nursing homes or alternative  community-based residential settings such as assisted living facilities, in- home care services, and unpaid care from family members or other  informal caregivers. Approximately 64 percent of all elderly individuals  with a disability relied exclusively on unpaid care from family or other  informal caregivers; even among almost totally dependent elderly—those  with difficulty performing five activities of daily living—about 41 percent  relied entirely on unpaid care.
Long-term care is financed through a variety of sources, primarily public  programs. Nationally, spending from all public and private sources for  long-term care for all ages totaled about $137 billion in 2000, accounting  for nearly 11 percent of all health care expenditures. Medicaid, the joint  federal-state health-financing program for low-income individuals,  continues to be the largest funding source for long-term care. In 2000,  Medicaid paid 46 percent (about $63 billion) of total long-term care  expenditures. Individuals’ out-of-pocket payments represented the second  largest source of payments for long-term care—a larger part of long-term  care spending than for other types of health care services such as  physicians and hospitals. These out-of-pocket payments accounted for 23  percent (about $31 billion) of total long-term care expenditures in 2000.  Medicare, private insurance, and other public or private sources financed  the remaining shares of these expenditures.
States share responsibility with the federal government for Medicaid,  paying on average approximately 43 percent of total Medicaid costs.  Within broad federal guidelines, states have considerable flexibility in  determining who is eligible and what services to cover in their Medicaid  program. Among long-term care services, states are required to cover  nursing facilities and home health services for Medicaid beneficiaries.  States also may choose to cover additional services that are not mandatory  under federal standards, such as personal care services, private-duty  nursing care, and rehabilitative services. For services that a state chooses  to cover under its CMS-approved state Medicaid plan, enrollment for those  eligible cannot be limited but benefits may be. For example, states can  limit the personal care service benefit through medical necessity  requirements and utilization controls.
States may also cover Medicaid home and community-based services  (HCBS) through waivers of certain statutory requirements under section  1915(c) of the Social Security Act, thereby receiving greater flexibility in  the provision of long-term care services. These waivers permit states to  adopt a variety of strategies to control the cost and use of services. For  example, states may obtain CMS approval to waive certain provisions of  the Medicaid statute, such as comparability, which generally requires  states to make all services available to all eligible individuals statewide.
With a waiver, states can target services to individuals on the basis of  certain criteria such as disease, age, or geographic location. Further, states  may limit the numbers of persons served to a specified target, requiring  additional persons meeting eligibility and need criteria to be put on a  waiting list. Limits may also be placed on the costs of services that will be  covered by Medicaid. To obtain CMS approval for a HCBS waiver, states  must demonstrate that the cost of the services to be provided under a  waiver (plus other state Medicaid services) is no more than the cost of  institutional care (plus any other Medicaid services provided to  institutionalized individuals). These waivers permit states to cover a wide  variety of nonmedical and social services and supports that allow people  to remain at home or in the community, including personal care, personal  emergency response systems, homemakers’ assistance, chore assistance,  adult day care, and other services.
Medicare—the federal health financing program covering nearly 40 million  Americans who are aged 65 or older, disabled, or have end-stage renal  disease—primarily covers acute care, but it also pays for limited post- acute stays in skilled nursing care facilities and home health care.  Medicare spending accounted for 14 percent (about $19 billion) of total  long-term care expenditures in 2000. During the early and mid-1990s,  Medicare became an increasingly significant funding source for individuals  receiving continuing home health care, including home health aide  services that may at times substitute for other long-term care services. The  adoption of an interim payment system in 1997 to better control spending  growth was followed by a sharp reduction in the number of home health  visits and spending covered by Medicare. A new home health prospective  payment system was implemented in October 2000 that was intended to  more closely align Medicare payments with patient needs. While it  provides funding that allows a higher number of home health visits per  user than under the interim payment system, it also provides incentives to  reward efficiency and control use of services. The number of home health  visits declined from about 29 visits per episode immediately prior to the  prospective payment system being implemented to 22 visits per episode  during the first half of 2001. Most of the decline was in home health aide  visits.
section_title: Selected States Varied in Expenditures for and Design of Medicaid Home and Community Services
paragraphs: Each of the states we reviewed—Kansas, Louisiana, New York, and  Oregon—covered home and community-based services in their Medicaid  programs, but differed in how much of their Medicaid spending for long- term care for the elderly they dedicated to home and community-based  care and how they designed their programs for these services. In general,  Kansas and Louisiana spent a smaller portion of their Medicaid long-term  care expenditures on home and community-based services than the other  two states, and many of these services had recently not been available to  new clients because both states had waiting lists. New York had the  highest Medicaid spending on long-term care services for the elderly, with  per capita spending nearly two-and-a-half times the national average. In  addition, most of New York’s home and community-based services were  covered through its state Medicaid plan, making the services available to  all eligible Medicaid beneficiaries. Oregon spent much less on nursing  home care than other states, with a higher share of its long-term care  expenditures for the elderly dedicated to home and community-based  care.
The four states we reviewed allocated different proportions of Medicaid  long-term care expenditures for the elderly to federally required long-term  care services, such as nursing facilities, and to state optional home and  community-based care, such as in-home personal support, adult day care,  and other home and community services. (See table 1.) New York’s  expenditures for Medicaid long-term care services (including nursing  facilities, home health, personal support, and other care) for the elderly  was $2,463 per person aged 65 or older in 1999—much higher than the  national average of $996. While nursing home care represented 68 percent  of New York’s expenditures, New York also spent more than the national  average on long-term care services provided at the state’s option, such as  personal support services. Kansas and Louisiana spent near the national  average of $996 per person aged 65 or older ($935 and $1,012,  respectively), but nursing home care accounted for a higher portion of  these expenditures in Louisiana (93 percent) than the national average (81  percent). Oregon spent $604 on Medicaid long-term care services per  elderly individual. In contrast to the other states, Oregon spent much less  per capita on nursing home care, and spent a larger portion for other long- term care services such as care in alternative residential settings.
The states also differed in how they designed their home and community- based services, influencing the extent to which these services were  available to elderly individuals with disabilities. In some instances, as the  following examples illustrate, not all services were available to all clients,  with Kansas and Louisiana having waiting lists for HCBS waiver services  for new clients.
Kansas: Most home and community-based services for the elderly in  Kansas were offered under HCBS waivers. These services included in- home help such as personal care, household support, night supervision,  assistive devices (such as shower seats), personal emergency response  systems, adult day care, and respite care. As of June 2002, 6,300 Kansans  were receiving these HCBS waiver services. Because Kansas recently  initiated a waiting list for these services in April 2002, they were not  currently available to new recipients, with 290 people on the waiting list as  of June 2002.
Louisiana: Most home and community-based services available in  Louisiana for the elderly and disabled were offered under HCBS waivers,  allowing the state to limit the number of recipients and cap the dollar  amount available per day for services. One waiver, which includes such  services as personal care, environmental modifications to the home (such  as wheelchair ramps), and personal emergency response systems, served  approximately 1,500 people in July 2002 with a waiting list of 5,000 people.  The dollar cap on services provided through this waiver increased in  September 2002 from $35 per day to $55 per day. The other waiver, which  is exclusively for adult day health care, served approximately 525 people,  with 201 individuals on the waiting list as of July 2002.
New York: New York relied less on HCBS waivers for home and  community-based care for the elderly and disabled than other states  because these services were largely available through the state Medicaid  plan. Although New York had higher spending on Medicaid long-term care  services per capita than the other states in 1999, including about $500 per  capita on personal support services for the elderly, spending for HCBS  waiver services was a small part of Medicaid spending—$9 per elderly  person. As a result, home and community-based services were largely  available to all eligible Medicaid beneficiaries needing them through the  state Medicaid plan without caps. Services offered through the state plan  included in-home help, such as hands-on assistance and household  support, and personal emergency response systems. Through a waiver,  New York also offers such services as home-delivered meals, adult day  care, environmental modifications, and nutritional counseling.    Oregon: Oregon had HCBS waivers that covered in-home care,  environmental modifications to homes, adult day care, respite care, and  care in alternate residential settings such as assisted living facilities and  adult foster homes. Oregon’s waiver services did not have a waiting list  and were available to elderly and disabled clients based on functional  need, and served about 12,000 elderly and disabled individuals as of June  2002. Oregon has established a priority system for providing services  based on eligible Medicaid beneficiaries’ needs with assistance for  activities of daily living. Were a waiting list to become necessary in  Oregon, officials told us that the state would allocate services based on its  priority categories so that those categorized as being more dependent on  assistance would receive help first.
Table 2 summarizes the home and community based services offered in  the four states we reviewed either through their Medicaid state plan or a  home and community-based services waiver. Generally, many home and  community-based services are covered in each of the states, but in Kansas  and Louisiana they may be limited in their level of coverage and the  number of individuals served.
section_title: Case Managers Predominately Offered Medicaid In- Home Care Services, but Number of Hours Offered Varied
paragraphs: Most often, the 16 Medicaid case managers we contacted in Kansas,  Louisiana, New York, and Oregon offered care plans for our hypothetical  clients—Abby, an 86-year-old chair-bound woman with debilitating  arthritis, and Brian, a 70-year-old man with moderate Alzheimer’s  disease—that aimed at allowing them to remain in their homes. The  number of hours of in-home care that the case managers offered and the  types of residential care settings recommended depended in part on the  availability of services and the amount of informal family care available. In  a few situations, especially when the individual did not live with a family  member who could provide additional support, case managers were  concerned that the client would not be safe at home and recommended a  nursing home or other residential care setting.
Most case managers offered in-home services for Abby and Brian except  for the one scenario when Brian lives alone and requires constant  supervision to ensure his safety due to his moderate Alzheimer’s disease.  Several case managers noted that they would attempt to honor individuals’  preferences to remain at home unless it was unsafe to do so. For Abby,  most case managers offered in-home personal care (hands-on assistance  with activities such as bathing, toileting, and eating), household support  (such as preparing meals and laundry), and other supplemental services  (such as household modifications or an emergency response system) that  would supplement the care she received from her family. When Abby lived  with her daughter or elderly sister, all but 1 of the 16 case managers  offered in-home care. When Abby lived alone with her daughter able to  come by only once per day before going to her job, 12 case managers still  offered in-home services to provide most of her care while 4  recommended that she relocate to a nursing home or other residential care  setting. Similarly, in the scenarios when Brian lived with his wife, all but  one case manager offered in-home care services for Brian. Most of the  care plans continued to rely on Brian’s wife to provide much of the  supervision of Brian’s safety and reminders for him to bathe, eat, and use  the bathroom, but the care plans also offered additional in-home support  to provide some hands-on care and household support. However, when  Brian would otherwise have to live alone, 13 of the 16 care plans would  have him move to a nursing home or other residential care setting. (See  table 3.)
When the case managers recommended that the individuals remain at  home, the number of hours of in-home services offered varied. The care  plans generally provided more paid in-home care when less informal  family support was available, especially when Abby or Brian lived alone,  as shown in the following examples.
When Abby lived with her daughter who was overwhelmed due to also  caring for an infant grandchild, the case managers recommending in-home  care offered a median of 28 hours per week. However, the number of  hours of in-home care in this scenario varied by case manager from 4.5  hours to 40 hours per week. In this scenario, four case managers  recommended that Abby attend adult day care—which serves to both  provide additional hours of care to Abby and provide her daughter with  some respite.
When Abby lived with an 82-year-old sister who had difficulty helping with  some tasks due to limited strength, the case managers offered a median of  16 hours per week, with a range across case managers of 6 to 37 hours per  week. In this scenario, one case manager also recommended that Abby  receive most of her care (56 hours per week) through adult day care.
When Abby lived alone with her daughter visiting for an hour each  morning, the number of offered hours of in-home care was highest—a  median of 32 hours per week and as many as 49 hours per week.
For Brian, the number of hours of care offered more consistently reflected  the amount of informal help that was available to him, as the specific  examples illustrate.
When Brian lived with his wife who was in fair health, the case managers  offered a median of 18 hours per week of in-home care, ranging from 11 to  35 hours per week. Two case managers also offered adult day care in  addition to or instead of in-home care.  If Brian’s wife were in poor health, the case managers offered in-home  care for a median of 22 hours per week, ranging from 6 to 35 hours per  week. One care manager recommended that Brian move to a residential  care facility.
When Brian lived alone, two of the three care managers who had Brian  remain at home offered round-the-clock in-home care—168 hours per  week.
Table 4 summarizes the numbers of hours of in-home care offered by care  managers for each scenario.
Consistent with the hypothetical individuals’ preferences to remain at  home as long as possible, case managers less often recommended that the  hypothetical individuals move out of their homes to a nursing home or an  alternative residential care setting such as an assisted living facility, adult  foster home, or adult boarding home. The case managers typically  recommended the individual move only if they believed that she or he  would be unsafe in their homes or, in two instances, if they were  concerned that the family caregiver was at risk due to the demands of  providing extensive informal care. Of the 16 case managers, 13  recommended that Brian move to a residential care setting if he lived  alone, with most noting that they were concerned about his safety living at  home alone or were unable to provide a sufficient number of hours of in- home supervision. Four case managers also recommended that Abby  needed to move if she did not have a family member or paid caregiver who  could remain with her at nighttime and assist her with using the toilet or in  an emergency. In two instances when the hypothetical individuals did have  a family member living with them, case managers were concerned that  providing care would be too demanding either for Abby’s daughter (who  also had an infant grandchild to care for) or Brian’s wife (who was in poor  health) and recommended that the client move to an adult foster home.  For example, one case manager was concerned that Brian’s wife, who was  in poor health, would ultimately also need care if she continued to provide  Brian with most of his support.
In some situations, two case managers in the same locality offered notably  different care plans. For example, across the eight localities where we  interviewed case managers, four case managers offered in-home care  while their local counterpart recommended a nursing home or alternative  residential setting for Abby when she lived alone. This contrast also  occurred three times when Brian lived alone and once each when Abby  lived with her daughter and Brian lived with his wife who was in poor  health. In a few cases, the case managers in the same locality both offered  in-home care but offered significantly different numbers of hours. For  example, one case manager offered 42 hours per week of in-home care for  Abby when she lived alone, while another case manager in the same  locality offered 15 hours per week of in-home care for this scenario.
Appendix II provides a summary of the care plans provided by each case  manager for each of the six hypothetical scenarios.
section_title: Case Managers in Some States Offered More In-Home Care, Alternative Residential Settings, or Other Supplemental Services
paragraphs: The care plans the case managers offered for the hypothetical individuals,  Abby and Brian, sometimes varied as a result of state-specific policies or  practices for Medicaid home and community-based services. In particular,  neither Abby nor Brian would be able to immediately receive HCBS waiver  services in Kansas and Louisiana due to a waiting list. When case  managers developed care plans based on HCBS-waiver services for our  hypothetical individuals, Louisiana’s cap on the amount of dollars that  could be spent per day limited the number of hours of in-home care that  could be offered in scenarios where Abby or Brian needed more extensive  care. Also, Kansas’s case managers may have been more cost-sensitive due  to state review thresholds and their awareness that maintaining lower  average costs per client may help other clients to be served. When out-of- home placements were recommended, case managers in Oregon  consistently recommended alternatives to nursing homes (either adult  foster care or assisted living) whereas case managers in Louisiana were  more likely to recommend a nursing home. Other state-specific differences  in the care plans included that Louisiana case managers did not offer adult  day care in any of the care plans, and New York and Louisiana case  managers often considered how Medicare home health services would  expand or offset the Medicaid home and community-based services  offered.
subsections: section_title: Waiting Lists in Two States Would Prevent New Clients from Immediately Receiving Medicaid Home and Community-Based Waiver Services
paragraphs: As new clients, our hypothetical elderly individuals with disabilities would  not have been able to immediately receive most Medicaid home and  community-based services in Kansas or Louisiana due to waiting lists for  the HCBS waiver services. As a result, our hypothetical individuals would  often have fewer services available to them, only those available through  other state or federal programs, until Medicaid HCBS waiver services  became available or they would have to receive Medicaid-covered nursing  home care. The average length of time individuals wait for Medicaid  waiver services was not known in either state. However, one case manager  in Louisiana estimated that elderly persons for whom he had developed  care plans had spent about a year on the waiting list before receiving  services. In Kansas, as of July no one had yet come off the waiting list,  which was instituted in April 2002.
When case managers in Kansas developed care plans based only on what  services were currently available from sources other than Medicaid home  and community-based services, they tended to offer fewer in-home hours  and to recommend out-of-home placements twice as often as they did  when the waiver services were available. Service availability also varied  more widely across the state when case managers could not offer  Medicaid HCBS waiver services. For example, in one area of the state, in- home help was offered using Older Americans Act funds while in another  area those services were not available due to budget constraints.
According to Louisiana officials, since Medicaid HCBS waiver services  have a waiting list, persons needing immediate assistance who call the  state help line may be referred to local councils on aging or they can  contact another organization that would help them complete an  application for nursing home care. In general, however, the case managers  we interviewed in the four states indicated that few services were typically  available outside of the Medicaid program.
section_title: Number of Hours of In- Home Care Varies Partly Due to State Policies
paragraphs: The number of hours of in-home care offered to our hypothetical  individuals through Medicaid could be as much as 168 hours per week (24  hours per day) in New York and Oregon while case managers in Kansas  and Louisiana offered at most 24.5 and 37 hours per week, respectively.
The number of hours of in-home care offered was often lowest in Kansas,  and in Louisiana case managers tended to change the amount of in-home  help offered little even as the hypothetical scenarios changed, such that  our hypothetical individuals presumably would require more assistance  because there was less unpaid care available from family caregivers. (See  table 5.) This variation reflects several factors case managers took into  consideration when determining the amount of care to offer.  These  factors included the local availability of personal care attendants and  other care services, the cost of the care that was allowed under their  state’s Medicaid program, and the state’s review requirements for  approving care plans.
The number of hours of in-home care case managers in Louisiana could  offer was limited by a dollar cap on waiver services of $35 per day at the  time we conducted our work. Case managers in Louisiana tended to offer  as many hours of care as they could offer under the cost limit. Therefore,  as the amount of informal care changed in the different scenarios, the  hours of in-home help offered in Louisiana did not change as much as they  did in the other states. For example, when Brian’s wife was in poor health,  the case managers in Kansas, New York, and Oregon usually either offered  more in-home care (from 1.5 to 13.5 additional hours per week) or else  offered more help through adult day care than they offered when his wife  was in better health. In contrast, case managers in Louisiana did not  prescribe any more hours of in-home care per week when Brian’s wife was  in poor health because they could not cover more hours within the cap.
Case managers in Kansas often offered the fewest hours of in-home care  across all of the states we reviewed. The state had a review process  whereby higher cost care plans were more extensively reviewed than  lower cost care plans. Case managers recognized that Kansas’s Medicaid  HCBS waiver program and other state programs providing long-term care  services had recently been largely closed to new clients due to budget  constraints. As one Kansas case manager told us, offering fewer hours of  care may reflect the case managers’ sensitivity to the waiting list and an  effort to serve more clients by keeping the cost per person low.
In contrast, case managers in New York and Oregon did not indicate  similar cost concerns in offering in-home care hours. When the costs of  services were above the cost limit for waiver services in New York, case  managers could offer most in-home care through services provided in the  state plan, which were not subject to a cost limit. Further, while three case  managers in Oregon expressed concern about finding live-in help or  providers for lower-paying custodial services, one case manager in New  York and one in Oregon offered the most in-home care possible—24 hours  a day, 168 hours a week.
section_title: When Residential Care Was Recommended, Oregon Relied on Alternatives Other Than Nursing Homes
paragraphs: When recommending that our hypothetical individuals could be better  cared for in a residential care setting, case managers offered alternatives  to nursing homes to varying degrees across the states, with those in  Louisiana relying most heavily on nursing home care and those in Oregon  using exclusively alternative residential settings. Case managers in  Louisiana recommended nursing home care in three of the four care plans  for Abby or Brian in which care in another residence was recommended.   A Louisiana state official noted that care in alternative residential care  settings is generally not covered through the Medicaid waiver.  In contrast,  case managers in Oregon never recommended nursing home care for our  hypothetical individuals. Instead, case managers in Oregon exclusively  recommended either adult foster care or an assisted living facility in the  five care plans recommending care in another residence. (See table 6.)
Case managers in Oregon twice recommended that our hypothetical  individuals obtain care in other residential care settings when case  managers in other states would have had them stay at home. Case  managers in Kansas, Louisiana, and New York only recommended out of  home placement for Abby or Brian in scenarios when they lived alone. In  Oregon, however, two different case managers recommended that Abby  and Brian move into an adult foster home in scenarios when they lived  with a family member, expressing concern that continuing to provide care  to Abby or Brian would be detrimental to the family.
section_title: States Also Varied in Use of Adult Day Care and Medicare Home Health Services
paragraphs: State differences also were evident in how case managers used other  services to supplement in-home or other care. For example, across all care  plans the case managers developed for Abby and Brian (24 care plans in  each state), adult day care was offered four times in New York and Oregon  and three times in Kansas. When adult day care was offered in the other  states, it often served to provide additional hours of care for Abby or Brian  as well as some relief for their caregiver. However, none of the care plans  developed by case managers in Louisiana included adult day care despite  the state’s Medicaid waiver for these services.  Case managers may not  have offered adult day care services because Louisiana covers these  services under a separate HCBS waiver from the waiver that covers in- home assistance and, in general, individuals cannot receive services from  two separate waiver programs concurrently.
Case managers in New York and Louisiana also often considered the effect  that the availability of Medicare home health services could have on the  Medicaid in-home care. For example, one case manager in New York  noted that she maximizes the use of Medicare home health before using  Medicaid home health or other services. Several of the case managers in  New York included the amount of Medicare home health care available in  their care plans, and these services offset some of the Medicaid services  that would otherwise be offered. In Louisiana, where case managers faced  a dollar cap on the amount of Medicaid in-home care hours they could  provide, two case managers told us that they would include the additional  care available under Medicare’s home health benefit in their care plans,  thereby increasing the number of total hours of care that Abby or Brian  would have by 2 hours per week. While six Kansas and Oregon case  managers also mentioned that they would refer Abby or Brian to a  physician or visiting nurse to be assessed for potential Medicare home  health care, they did not specifically include the availability of Medicare  home health care in the number of hours of care provided by their care  plans.
section_title: Concluding Observations
paragraphs: Many states have found that offering home and community-based services  through their Medicaid programs can help low-income elderly individuals  with disabilities remain in their homes or communities when they  otherwise would be likely to go to nursing homes. States differ, however,  in how they designed their Medicaid programs to offer home and  community-based long-term care options for elderly individuals and the  level of resources they devoted to these services. As a result, as  demonstrated by the care plans offered by case managers for our  hypothetical elderly individuals in four states, the same individual with  certain identified disabilities and needs would often receive different types  and intensity of home and community-based care for their long-term care  needs across states and even within the same community. These  differences often stemmed from case managers’ attempts to leverage the  availability of both publicly financed long-term care services as well as the  informal care and support provided to individuals by their own family  members.
section_title: States’ Comments
paragraphs: We requested comments on a draft of this report from Kansas, Louisiana,  New York, and Oregon officials.  On behalf of these states, we received  oral comments from the Program Manager, Kansas Department of Aging;  the Waiver Manager, Louisiana Bureau of Community Supports and  Services; the Health Program Administrator, Bureau of Long-Term Care,  Office of Medicaid Management, New York Department of Health; and the  Manager of Community-Based Care Licensing, Office of Licensing and  Quality of Care for Seniors and People with Disabilities, Oregon  Department of Human Services.
Two states commented on our findings concerning the extent of services  case managers offered to our hypothetical individuals.  The Kansas official  noted that our finding that the Kansas case managers’ care plans often  offered among the fewest hours of in-home care does not necessarily  reflect that the care plans would not meet their health and welfare needs.   She emphasized that Kansas case managers are trained to enssure that the  care plans are sufficient to meet clients’ health and welfare needs and that  the state reviews the care plans to provide further assurances that they are  sufficient.  We clarified the report to indicate that we did not evaluate the  adequacy or appropriateness of the care plans offered by the case  managers in meeting the hypothetical individuals’ long-term care needs.   The Louisiana official commented that the state was covering as many  eligible enrollees in its HCBS waivers as funding allowed, and that  Louisiana’s daily cap for in-home HCBS waiver services reflects the state’s  budget constraints as well as the need to be cost-effective relative to  nursing home care, which had a reimbursement rate of about $85 per day  as of September 2002.
Two states commented on the importance of individuals’ preferences and  the local availability of long-term care service providers in shaping case  managers’ care plans.  The Oregon official commented that case managers  will develop their care plans to best reflect the preferences of their clients  to receive care in their home or in community-based settings.  The New  York official commented that the availability of certain long-term care  services, such as workers to provide in-home care and adult day care  settings, varies within the state and can be an additional factor influencing  the number of hours of in-home care offered in case managers’ care plans.
Officials from the four states also provided technical comments that we  incorporated as appropriate.
We did not seek comments on this report from CMS because we did not  evaluate CMS’s role or performance with respect to the availability of  Medicaid home and community-based services.
As agreed with your office, unless you publicly announce this report’s  contents earlier, we plan no further distribution until 30 days after its date.  At that time, we will send copies of this report to other interested  congressional committees and other parties. We will also make copies  available to others on request. Copies of this report will also be available  at no charge on GAO’s Web site at http://www.gao.gov.
Please call me at (202) 512-7118 or John E. Dicken at (202) 512-7043   if you have any questions. Major contributors to this report include   JoAnne R. Bailey, Romy Gelb, and Miryam Frieder.
section_title: Appendix I: Summary of Hypothetical Individuals Presented to Case Managers
paragraphs: To obtain information about the availability of long-term care for our  hypothetical elderly individuals, we asked 16 Medicaid case managers in  Kansas, Louisiana, New York, and Oregon to prepare detailed care plans  for two elderly persons with physical or cognitive disabilities. For each  hypothetical individual, we presented the case managers with three  different scenarios illustrating different levels of informal care available  from family members. The first hypothetical person was a woman, “Abby,”  who had difficulty performing everyday activities due to physical  limitations, while the second was a man, “Brian,” who had difficulty due to  cognitive limitations. We contacted each case manager and presented  detailed information, as summarized below, regarding the hypothetical  individuals’ conditions, needs for assistance, and availability of informal  unpaid care from family. We also provided any clarifying information that  the case managers requested to be able to develop the care plans. With this  information, the case managers used state-specific uniform assessment  instruments and their professional expertise to develop care plans as they  would with other Medicaid-eligible clients.
subsections: section_title: Summary of Abby
paragraphs: The first hypothetical Medicaid-eligible individual we presented was Abby,  an 86-year-old woman with physical limitations due to debilitating  arthritis. She also has type II diabetes. Specifically, Abby is chair-bound,  has developed a pressure ulcer, and has some degree of difficulty with all  activities of daily living (ADL) and instrumental activities of daily living  (IADL) tasks as well as with taking an oral medication. She also needs her  glucose levels checked daily to monitor her diabetes. She is alert and  oriented, without any cognitive impairment. Her prognosis is for little or  no recovery, with decline in her current condition possible. Abby’s  husband, who served as her primary caregiver, recently died.
We presented three scenarios to the case managers in which Abby’s  conditions and needs for assistance remained the same, but the availability  of unpaid informal care provided by her family varied:    Scenario 1: Abby has moved in with her 51-year-old daughter who also  cares for her own infant grandchild. Abby’s daughter provides assistance  with Abby’s ADL and IADL needs, but the daughter reports feeling  overwhelmed caring for both her mother and grandchild. In addition, the  daughter is unable to help with Abby’s diabetes testing because she does  not know how to do so.
Scenario 2: Abby has moved in with her 82-year-old sister who provides  assistance with Abby’s ADL and IADL needs. However, the sister has  limited strength and therefore is unable to provide assistance with some  ADLs and IADLs, such as helping Abby to the toilet and transferring her to  and from her wheelchair. During the week, the sister is also unable to fully  meet Abby’s needs for bathing, laundry, and housekeeping. In addition, the  sister cannot assist Abby with her diabetes testing.
Scenario 3: Abby lives alone, and her 51-year-old daughter visits once each  morning for 1 hour to provide assistance but is unable to provide  additional assistance at other times because she works two jobs and lives  in another home. As a result, Abby does not receive assistance with  grooming and dressing her upper and lower body. During the day and  night, she does not receive assistance with planning and preparing meals,  toileting, eating, and transferring to and from her wheelchair to the toilet  or bed. Each week, she does not receive assistance with transportation,  bathing, laundry, and using the telephone in case of an emergency. In  addition, the daughter is unable to assist with Abby’s diabetes testing.
section_title: Summary of Brian
paragraphs: The second hypothetical Medicaid-eligible individual we presented to the  case managers was Brian, a 70-year-old man with moderate Alzheimer’s  disease who has been in a skilled nursing facility for 90 days following  hospitalization for a hip fracture. During his stay in the skilled nursing  facility, he has become physically weakened and will need physical  therapy. Brian takes medication for his hip fracture and for anxiety and  temporarily uses a cane when walking, but otherwise is in good physical  health. Brian needs supervisory help with most ADLs and IADLs and  taking his oral medication—that is, he can perform tasks such as eating  and toileting if he is reminded and monitored. Due to dementia resulting  from Alzheimer’s disease, he is alert but not oriented and is unable to shift  attention and recall directions more than half the time. Further, he is  confused during the day and evening, but not constantly. He cannot be left  unsupervised.
As with the first hypothetical individual, we presented three scenarios to  the case managers in which Brian’s conditions and needs for assistance  remained the same, but the availability of unpaid informal care provided  by his family varied:    Scenario 1: Brian lives with his 65-year-old wife, who is his primary  caregiver and is in fair health but has recently suffered health problems.  She supervises Brian with all ADLs and she performs many of his IADLs  herself, but is having increasing difficulty doing these tasks due to her  declining health. During the day, she would like additional assistance  reminding Brian to toilet and bathe as well as with planning and preparing  meals and transportation. Each week, she would like additional assistance  with laundry, housekeeping, and shopping.
Scenario 2: Brian’s 65-year-old wife is in poorer health than described in  scenario 1, and can offer supervisory help with ADLs but cannot perform  most IADLs. As a result, Brian does not receive all of the reminders he  needs for bathing and toileting nor all of the assistance he needs with  planning and preparing meals, transportation, laundry, housekeeping, and  shopping.
Scenario 3: Brian lives alone because his wife recently died. He needs  constant supervision with most ADLs and help with several IADLs. He  cannot be left unsupervised and does not receive reminders for bathing,  dressing, grooming, toileting, eating, and taking his medications. He also  does not receive assistance with planning and preparing meals,  transportation, shopping, laundry, and housekeeping.
section_title: Appendix II: Summary of Care Plans Offered by 16 Case Managers
paragraphs: We obtained care plans from 16 Medicaid case managers in Kansas,  Louisiana, New York, and Oregon that detailed the long-term care services  that they would offer to two hypothetical Medicaid-eligible elderly  individuals—Abby, an 86-year-old woman with debilitating arthritis and  who was chair-bound, and Brian, a 70-year-old man with moderate  Alzheimer’s disease. Each case manager developed six care plans,  representing three different levels of unpaid informal care provided to  Abby and Brian by their family. The case managers we contacted were  specifically responsible for Medicaid home and community-based services.  While most also were familiar with other local public services available,  clients could receive different care options if they sought care through  other approaches, such as physician referrals or contacting local councils  on aging. The care plans were based on the information presented by  telephone to the case managers we selected to interview in a small town (a  population of less than 15,000 people) and a large city (a population of  more than 250,000 people) in each of the four states and should not be  generalized to indicate what care plans other case managers in these  localities or other states would likely offer. We did not evaluate the  adequacy or appropriateness of the care plans offered by the case  managers for meeting the long-term care needs of our hypothetical  individuals.
Tables 7 through 12 summarize key components of the care plans offered  by each of the case managers, designated in the tables as case managers A  through P, for each of the six care plans. The tables summarize the  number of in-home hours of care offered by the case manager or whether  a nursing home or other alternate residential care setting was  recommended. The tables also provide other aspects of care offered to  Abby or Brian, including whether the care manager would offer adult day  care to supplement or replace in-home or other care, whether the case  manager noted the availability of a nurse or home health services available  from Medicare and/or Medicaid, and examples of other services (such as  personal emergency response systems, assistive devices such as transfer  seats, or companionship services) that may be offered through Medicaid  or other federal, state, or local programs.