Abstract
The authors present the results of a survey demonstrating how Medicaid programs use the home and community-based waiver programs to provide services to people with acquired immunodeficiency syndrome (AIDS) and to other targeted groups. The survey identified a number of waiver services that are effective at meeting the care needs of people with AIDS, such as case management, personal care, respite care, home intravenous therapy, attendant care, hospice, and home-delivered meals. The study demonstrates that in addition to the AIDS-specific waiver program, State Medicaid programs use the home and community-based care waiver programs for the elderly and disabled to provide services to people with AIDS because of their disability status.
Introduction
State Medicaid programs can use the home and community-based waiver programs to provide a broad array of non-institutional services to Medicaid recipients who require or are likely to require long-term care at the intermediate-nursing-care level or higher (Miller, 1992). These waiver programs are designed to encourage Medicaid coverage of more appropriate home and community-based care as an alternative to more costly institutional care (Dobson, Moran, and Young, 1992). Section 2176 of the 1981 Omnibus Budget Reconciliation Act gives the Health Care Financing Administration the authority to waive certain Federal Medicaid regulations to allow the States to include home and community-based services in their Medicaid coverage, targeted to specific Medicaid recipients such as the elderly or the physically disabled who would otherwise have to be institutionalized (Merzel et al., 1992; Miller, 1992). The Omnibus Budget Reconciliation Act of 1985 amended Section 2176 to allow AIDS-specific, Medicaid home and community-based waiver programs (Jacobson, Lindsey, and Pascal, 1989). The Technical and Miscellaneous Revenue Act of 1988 extended eligibility for these waiver programs to people with specific diseases (including AIDS) who were not receiving care at a hospital or nursing facility but who did require nursing-facility or hospital-level care (Cowart and Mitchell, 1995). Medicaid programs can use either the AIDS-specific waiver program or the original waiver program to provide special services to Medicaid recipients with AIDS because of their disability status (Ellwood, Fanning, and Dodds, 1991; Baily, et al., 1990; Buchanan, 1996).
These home and community-based care waivers give the States flexibility not only in defining the populations to be covered but also in defining the range of services to be covered (Lindsey, Jacobson, and Pascal, 1990). Among the services allowed are case management, homemaker, home health aide, personal care, adult day care, habilitation, day treatment, partial hospitalization services, respite care, psychosocial rehabilitation, private duty nursing, medical supplies and adaptive equipment, transportation, and home-delivered meals (Merzel et al., 1992). The waiver programs also allow more generous financial eligibility requirements (Buchanan, 1996). The States may establish income standards for the waiver programs up to 300 percent of the Supplemental Security Income benefit (Congressional Research Services, 1993). One-half of the people with AIDS covered by the AIDS-specific home and community-based care waiver in New Jersey were entitled to coverage only because of these more generous waiver eligibility standards (Merzel et al., 1992).
We present the results of a survey demonstrating how the State Medicaid programs are using the home and community-based care waiver programs to provide health services to people with AIDS. In addition, by including the waiver programs for the elderly and disabled in the survey, along with the AIDS-specific waiver program, we illustrate the specialized services available to other targeted groups of people as well as to people with AIDS.
Methodology
To discover how the States were implementing the home and community-based care waiver programs during 1995, a questionnaire was mailed during June, 1995, to the Medicaid administrators responsible for the waiver programs in each State. Six additional mailings of the questionnaire were sent to the States not responding, with completed surveys received from 49 States and the District of Columbia by September, 1996.1 The survey responses were summarized into tables, which were mailed back to the Medicaid administrators for verification, corrections, and updates in August, 1996. The verification process was completed during November, 1996. These verified and updated tables are presented in this research as Tables 1 through 6.
Table 1. Services Covered Under AIDS-Specific Medicaid Home and Community-Based Care Waiver Programs: 1995.
| State | Services Covered |
|---|---|
| California | Skilled nursing, homemaker services, home-delivered meals, nutritional/dietary supplements, specialized medical equipment and supplies, non-emergency medical transportation services, home/environmental modifications, psychosocial counseling, attendant care, case managers, nutritional counseling, and Medi-Cal supplement for infants and children in foster care |
| Colorado | Skilled and private duty nursing, homemaker services, adult day care, emergency home response, transportation services, and personal care services |
| Delaware | In-home respite care, homemaker services, adult medical day care, inpatient respite care, mental health counseling, personal care services, case managers, and nutritional supplement (new service to be added in 1995) |
| District of Columbia | An AIDS/HIV-specific waiver was approved December 1996 |
| Florida | Skilled and private duty nursing, home aerosolized drug therapy, in-home respite care, day treatment/partial hospitalization, home intravenous therapy, home mobility aids/devices, substance abuse services, rehabilitation services, home-delivered meals, HIV prevention education for families, homemaker services, adult medical day care, inpatient respite care, emergency home response, home/environmental modifications, mental health counseling, personal care services, case managers, handyman services, physical therapy, massage services, companion services, and moving assistance (labor) (not as a separate service) |
| Hawaii | Skilled nursing, respite care, medical day health care, emergency alarm response, non-medical transportation services, counseling and training (includes nutritional and substance abuse counseling), personal care services, case managers, moving assistance, home-delivered meals, and supplemental stipend to foster families caring for children who are HIV-infected |
| Illinois | Homemaker services, adult medical day care, emergency home response, home/environmental modifications, personal care services |
| Iowa | Skilled and private duty nursing, in-home respite care, home-delivered meals, home health aide, homemaker services, mental health counseling, and personal care |
| Maine | Maine expects to implement an AIDS-specific waiver during 1997 |
| Maryland | The Medicaid program in Maryland “does not have a specific waiver for people with AIDS, however, a targeted case management program is available under the state plan for people who are HIV positive. [Medicaid] recipients who are diagnosed as HIV positive or are less than two years old and born to a woman diagnosed as HIV infected are eligible to receive services. A multidisciplinary team assesses the individual and develops a written plan of care that addresses all the recipient's medical, psychological, social, functional, and other needs. The recipient can then elect to receive ongoing case management services to implement the plan of care. The case manager.. [makes] referrals to and arrangements with service providers selected by the recipient and [advises] the recipient about all available services. … The HIV Targeted Case Management Program is a totally voluntary, client-driven program. The recipient participates fully in the development and implementation of the plan of care.” |
| Missouri | Skilled and private duty nursing, transportation services, personal care services, diapers, chucks, gloves, and case managers |
| New Jersey | Skilled and private duty nursing, home aerosolized drug therapy, day treatment/partial hospitalization, in-home diagnostic testing, home intravenous therapy, home mobility aids/devices, substance abuse services, rehabilitation services, adult medical day care, durable medical equipment, transportation services, mental health counseling, podiatry services, personal care services, medical social services, hospice care, case managers, nutritional counseling, and dental care |
| New Mexico | Skilled and private duty nursing, homemaker services, personal care services, and case managers (“We would like to add home health aide and adult day health services.”) |
| North Carolina | The AIDS-specific waiver will be implemented on 11/1/95 and cover: in-home respite care, home mobility aids/devices, home-delivered meals, homemaker services, adult medical day care, inpatient respite care, emergency home response, home/environmental modifications, personal care, and case managers |
| Pennsylvania | Skilled nursing, in-home respite care (homemaker services), homemaker services, durable medical equipment, child care services (homemaker services), personal care services (homemaker services), and nutritional counseling (case management is a State plan service covered as targeted case management) |
| South Carolina | Skilled and private duty nursing, home-delivered meals, HIV support groups/individual counseling, home/environmental modifications, personal care services, hospice care, case managers, and foster care |
| Virginia | Case management, personal care, skilled nursing services, respite care, and nutritional supplements |
| Washington | Hourly skilled nursing, attendant care, respite care, therapeutic home-delivered meals, psychosocial services, transportation, nutrition consultation, intermittent nursing services, and adult day health care |
NOTES: AIDS is acquired immunodeficiency syndrome. HIV is human immunodeficiency virus. All other States (except Massachusetts) responded that they did not have an AIDS-specific Home and Community-Based Care Waiver program during 1995. The Massachusetts Medicaid program did not complete the survey process.
SOURCE: Buchanan, R.J., University of Illinois at Urbana-Champaign, 1995.
Table 6. Effective Services for and Number of Recipients with HIV-Related Conditions Under Medicaid Home and Community-Based Waiver Programs for the Disabled.
| State | Services Deemed Effective or Comments | Number of Recipients |
|---|---|---|
| Alabama | Personal care, medical supplies, assistive technology, emergency response system, environmental modifications, case managers and respite care | Diagnosis-specific data not available |
| Alaska | Specialized medical equipment and supplies | 1 person with HIV-related illness during 1995 |
| Arkansas | “Any HIV recipient could benefit from any of these [waiver covered] services if the recipient met the criteria of the waiver.” | NA |
| California | California has an AIDS-specific Home and Community-Based Care waiver | 2,500 adults and 300 children (18 years or younger) received services during 1994 from the AIDS-specific waiver |
| Connecticut | “All waiver services are available if the person is eligible.” | NA |
| Florida | Florida has an AIDS-specific Home and Community-Based Care waiver | — |
| Georgia | Not available/not applicable | No person with HIV-related illness receiving these waiver services |
| Hawaii | Hawaii does not have a separate Medicaid Home and Community-Based Waiver for the Disabled, only for the developmentally disabled | — |
| Illinois | All the services covered by the waiver program are effective at meeting the care needs of people with HIV-related illness | NA |
| Iowa | Skilled and private duty nursing, in-home respite care, inpatient respite care, counseling, home health aide services, homemaker services, and home-delivered meals | 19 people with HIV-related illness received these waiver services in 1994 |
| Louisiana | Not applicable | No person with HIV-related illness receiving these waiver services |
| Maine | Personal care services | 2 people with HIV-related illness during 1995 |
| Minnesota | Specialized foster home/hospice | 20 people with HIV-related illness |
| Mississippi | “HIV as a lone diagnosis would not qualify an individual for this particular waiver.” | — |
| Nevada | Homemaker services, case management, and medical social services | 1 person with HIV-related illness during 1995 |
| New Jersey | “Persons with HIV-related illness are served under a specific waiver -AIDS Community Care Alternatives Program (ACCAP)” | — |
| Pennsylvania | Pennsylvania has an AIDS-specific Home & Community-Based Services waiver | — |
| South Dakota | Not applicable at this time | No person with HIV-related illness receiving these waiver services |
| Virginia | The Virginia Medicaid program provides home and community-based care waiver services to people with AIDS through the AIDS-specific waiver | — |
NOTES: NA is not available. AIDS is acquired immunodeficiency syndrome. HIV is human immunodeficiency virus. All other States (except Massachusetts) and the District of Columbia responded that they did not have a separate Home and Community-Based Care Waiver program for the disabled during 1995. A number of these States noted that waiver services for the disabled are combined with the waiver program for the elderly. The Massachusetts Medicaid program did not complete the questionnaire.
SOURCE: Buchanan, R.J., University of Illinois at Urbana-Champaign, 1995.
The questionnaire was divided into three sections: Medicaid Home and Community-Based Care Waiver for the Elderly and Disabled; a separate Medicaid Home and Community-Based Care Waiver for the Disabled; and a separate AIDS-specific Medicaid Home and Community-Based Care Waiver. To facilitate the completion of the questionnaire, each of the three sections included the list of services shown in the sidebar, with a request to circle any service covered by that particular waiver program during 1995.2
Each of the three sections of the questionnaire asked the Medicaid administrators to list any services covered by that particular Medicaid Home and Community-Based Care waiver program during 1995 that was “most effective at meeting the health care needs of people with HIV [human immunodeficiency virus]-related illness.” Each of the three sections also asked the Medicaid administrators to “estimate the number of Medicaid recipients with HIV-related conditions who received services” from that particular waiver program during 1994. In addition the section of the questionnaire focusing on the AIDS-specific Home and Community-Based Care Waiver asked the Medicaid administrators to “estimate the number of Medicaid recipients with HIV-related conditions 18 years of age and younger who received services” from that waiver program during 1994. The questionnaire concluded by requesting a copy of the most recent HCFA 372 Report available for the AIDS-specific waiver.3
| List of Services Appearing in Questionnaire | ||
|---|---|---|
| Skilled and private duty nursing | Homemaker services | Personal care services |
| Home aerosolized drug therapy | Adult medical day care | Live-in attendant |
| In-home respite care | Inpatient respite care | Medical social services |
| Day treatment/partial hospitalization | Durable medical equipment | Hospice care |
| In-home diagnostic testing | Emergency home response | Case managers |
| Home intravenous therapy | Transportation services | Benefits advocacy |
| Home mobility aids/devices | Home/environmental modifications | Handyman services |
| Substance abuse services | Mental health counseling | Nutritional counseling |
| Rehabilitation services | Podiatry services | Dental care |
| Home-delivered meals | Congregate meals services | Housing referrals |
| HIV support groups | Child care services | Legal services |
| HIV prevention education for families other (please describe): | Adult social day care | Moving assistance |
The AIDS-Specific Waiver
As Table 1 documents, 15 States implemented an AIDS-specific Medicaid Home and Community-Based Care Waiver Program during 1995, including North Carolina, which began its waiver program on November 1, 1995. In addition to these 15 States, an AIDS/HIV-specific waiver program for the District of Columbia was approved in December, 1996, and Maine expects to implement an AIDS-specific waiver program during 1997. Although not a separate, AIDS-specific waiver, Maryland implements a “targeted case management program” through its regular Medicaid State plan for people who are infected with HIV (Table 1). In addition to the services provided on the questionnaire, Table 1 presents other HIV-related services covered by a number of States with their AIDS-specific waiver programs. Examples of these other services are: physical therapy, massage services, companion services, stipends to foster families caring for children who are infected with HIV, and nutritional supplements.
Table 2 lists the services provided by the AIDS-specific waiver programs that the State Medicaid administrators identified as most beneficial in meeting the care needs of people with AIDS. Among the services mentioned are: personal care, nursing care, case management, home-delivered meals, respite care, counseling, homemaker services, home intravenous therapy, hospice care, nutritional counseling and supplements, and personal care attendants. Table 2 also presents the number of adults and children that received services from the AIDS-specific Home and Community-Based Care Waiver Programs during 1994.
Table 2. Services Deemed Effective for and Number of Beneficiaries with HIV-Related Conditions Under Medicaid Home and Community-Based Programs for Persons with AIDS.
| State1 | Services Deemed Effective or Comments | Number of Beneficiaries2 | |
|---|---|---|---|
|
| |||
| Adults | Children 18 Years and Under | ||
| California | “All AIDS/HIV waiver services are necessary and helpful.” | 2,500 | 300 |
| Colorado | Personal care | *125 | *3 |
| Delaware | “All services [covered in the AIDS waiver]… in addition to regular Medicaid covered services.” | 86 | 0 |
| District of Columbia | An AIDS/HIV-specific waiver was approved in December 1996 | — | — |
| Florida | “All AIDS waiver services are medically necessary.” | 6,000+ | NA |
| Hawaii | Personal care services, case management services, home-delivered meals, and counseling and training services | 104 | 0 |
| Illinois | All waiver-covered services are beneficial to people with AIDS | 1,368 | |
| *2,292 | NA | ||
| Iowa | Skilled and private duty nursing, in-home respite care, inpatient respite care, counseling, home health aide services, homemaker services, and home-delivered meals | 19 | 0 |
| Maine3 | — | — | — |
| Maryland | Maryland does not have an AIDS-specific, Medicaid Home and Community-Based Waiver, but implements the program “HIV Targeted Case Management Services” (See Table 1) | 4 | 4 |
| Missouri | Skilled and private duty nursing | 200 | 10 |
| New Jersey | Case management, private-duty nursing, home intravenous therapy, personal care services, and hospice care | 1,428 | 5 |
| New Mexico | Private duty nursing and homemaker/personal care services “We would like to add home health aide and adult day health services.” | *70 | *1 |
| North Carolina6 | — | — | — |
| Pennsylvania | Homemaker services, nutritional consultations, and nutritional supplements | **173 | 7 |
| South Carolina | Private duty nursing, personal care aide services, and counseling | 594 | 6 |
| Virginia | NA | NA | NA |
| Washington | “The waiver services most effective are home health aides and personal care attendants assisting with 4 to 8 hours per day or to supplement care in residential settings. Waiver services are in addition to the usual state Medicaid home health services.” | *54 | *1 |
Data are for 1995.
Data are for 1993-94.
All other States (except Massachusetts) responded that they did not have an AIDS-specific Home and Community-Based Care Waiver program during 1995. The Massachusetts Medicaid program did not complete the survey process.
Data are for 1994, except where otherwise indicated.
Maine expects to implement an AIDS-specific waiver during 1997.
This program served 760 people during 1994.
“We have served 318 children under 20 [years of age] from 3/87 to 12/94. No stats. on the number served in 1994.”
North Carolina implemented an AIDS-specific, Medicaid Home and Community-Based Waiver effective 11/1/95
Not applicable because “services are provided under the Early Periodic Screening and Diagnosis Program.”
NOTES: NA is not available. AIDS is acquired immunodeficiency syndrome. HIV is human immunodeficiency virus.
SOURCE: Buchanan, R.J., University of Illinois at Urbana-Champaign, 1995.
The Elderly and Disabled Waiver
As Table 3 illustrates, each Medicaid program, except the District of Columbia's, provided services to eligible groups with the Medicaid Home and Community-Based Care Waiver Program for the Elderly and Disabled during 1995. (The Massachusetts Medicaid program did not complete the survey process.) In addition to the services listed on the questionnaire, a number of States also covered other home and community-based services. Examples of these other services are: chore services; habilitation services; alternative care facilities; elderly foster care; laundry services; assisted-living services; respiratory therapy; psychological consultation for family members and other caregivers; speech, physical, and occupational therapies; training of family caregivers; and specialized living facilities.
Table 3. Services Covered Under Medicaid Home and Community-Based Care Waiver Programs for the Elderly and Disabled: 1995.
| State | Services Covered |
|---|---|
| Alabama | In-home respite care (skilled and unskilled), homemaker services, adult social day care, personal care services, and case managers |
| Alaska | Skilled and private duty nursing, in-home respite care, home-delivered meals, chore services, emergency home response, transportation services, home/environmental modifications, congregate meal services, adult social day care, case managers, and specialized medical equipment and supplies. In addition to these services, habilitation and intensive active therapies are available for the disabled. |
| Arizona | Skilled and private duty nursing, in-home respite care, home intravenous therapy, home mobility aids/devices, substance abuse services, rehabilitation services, home-delivered meals, homemaker services, adult day care, inpatient respite care, durable medical equipment, emergency home response, transportation services, home/environmental modifications, mental health counseling, personal care services, live-in attendant, hospice care, case managers, handyman services, and nutritional counseling |
| Arkansas | In-home respite care, home-delivered meals, homemaker services, adult medical day care, inpatient respite care, emergency home response, adult social day care, and chore services (e.g.., errands, household tasks, yard maintenance) |
| California | The California Medicaid program provides home and community-based care waiver services to people with AIDS through the AIDS-specific waiver |
| Colorado | Homemaker services, adult day care, emergency home response, transportation services, home/environmental modifications, personal care services, and alternative care facilities |
| Connecticut | Skilled and private duty nursing, in-home respite care, rehabilitation services, home-delivered meals, homemaker services, adult medical day care, inpatient respite care, emergency home response, transportation services, mental health counseling, adult social day care, case managers (including benefits advocacy), chore services, elderly foster care, home health aide, and laundry services |
| Delaware | In-home respite care, homemaker services, adult medical day care, inpatient respite care, emergency home response, adult social day care, personal care services, and case managers |
| District of Columbia | No Medicaid Home and Community-Based Care Waiver for the Elderly and Disabled during 1995, however, an AIDS/HIV-specific waiver was approved December 1996 |
| Florida | In-home respite care, home mobility aids/devices, home-delivered meals, homemaker services, adult medical day care, emergency home response, mental health counseling, adult social day care, personal care services, case managers, benefits advocacy, handyman services, and nutritional counseling |
| Georgia | Skilled and private duty nursing, in-home respite care, rehabilitation services, home-delivered meals, homemaker services, inpatient respite care, emergency home response, personal care services, medical social services, case managers, and alternative living services |
| Hawaii | Skilled nursing, respite care, home-delivered meals (including congregate meals), homemaker services, emergency alarm response, non-medical transportation services, personal care services, nutritional counseling, moving assistance, home maintenance, environmental modifications, adult day health care, and case managers |
| Idaho | Personal care services and case managers (“Medicaid clients under age 21 may be eligible for other services through Early and Periodic Screening, Diagnosis, and Treatment.”) |
| Illinois | Homemaker services, adult medical day care, emergency home response, home/environmental modifications, personal care services, and case managers |
| Indiana | In-home respite care, home mobility aids/devices, home-delivered meals, homemaker services, inpatient respite care, emergency home response, home/environmental modifications, adult day care, attendant care services, and case managers |
| Iowa | Skilled and private duty nursing, in-home respite care, home mobility aids/devices, home-delivered meals, homemaker services, inpatient respite care, emergency home response, transportation services, home/environmental modifications, mental health outreach, adult social day care, personal care services, handyman/chore services, and home health aid |
| Kansas | In-home respite care, homemaker services, adult medical day care, inpatient respite care, emergency home response, transportation services, adult social day care, personal care services, and case managers |
| Kentucky | In-home respite care, homemaker services, adult medical day care, home/environmental modifications, personal care services, and case managers |
| Louisiana | Emergency home response, home/environmental modifications, personal care services, and case managers |
| Maine | For the Elderly: skilled and private duty nursing, rehabilitation services, homemaker services, adult medical day care, emergency home response, transportation services, mental health counseling, personal care services, live-in attendant, medical social services, and case managers |
| Maryland | Senior Assisted Housing Waiver: home/environmental modifications, adult social day care, behavior consultation, environmental assessments, assistive equipment, and case managers (not a waiver service, but provided as part of the duties of administering the waiver); also homemaker services, personal care services, preparation and serving of meals, and medication assistance are provided as part of the assisted living services package |
| Massachusetts | The Massachusetts Medicaid program did not complete the survey process. |
| Michigan | Private duty nursing, in-home respite care, day treatment, home-delivered meals, homemaker services, inpatient respite care (foster care), durable medical equipment, emergency home response, transportation services, home/environmental modifications, adult social day care, personal care supervision, case managers, chore services, training, medical supplies, and counseling (not just mental health) |
| Minnesota | Skilled and private duty nursing, in-home respite care, home-delivered meals, homemaker services, inpatient respite care, emergency home response, transportation services, home/environmental modifications, adult social day care, personal care services, case managers, and specialized foster home |
| Mississippi | Home-delivered meals, homemaker services, adult medical day care, inpatient respite care, case managers, and extended home health care coverage (i.e., in addition to the allowed visits under the State plan) |
| Missouri | In-home respite care, homemaker services, case managers, and handyman services (these services are available only to recipients who are 65 years or over) |
| Montana | Skilled and private duty nursing,* in-home respite care, home mobility aids/devices,* home-delivered meals, homemaker services, inpatient respite care, emergency home response, transportation services (social only), home/environmental modifications, congregate meal services, adult social day care, personal care services,* case managers, nutritional counseling, moving assistance, habilitation services, respiratory therapy, and psychological consultation (for family members or other caregivers) |
| Nebraska | In-home respite care, homemaker services, adult medical day care, out-of-home respite care, transportation services, and handyman services |
| Nevada | In-home respite care, home-delivered meals, homemaker services, adult social day care, personal care services (covered in State plan, too), medical social services, and case managers (the State plan covers many additional home and communtity-based care services) |
| New Hampshire | Skilled nursing, home aerosolized drug therapy, in-home diagnostic testing, home intravenous therapy, home mobilityaids/devices, rehabilitation services, home-delivered meals, homemaker services, adult medical day care, inpatient respite care, durable medical equipment, emergency home response, transportation services, home/environmentalmodifications, mental health counseling, podiatry services, congregate meal services, and case managers |
| New Jersey | Skilled nursing, in-home respite care, homemaker services, adult medical day care, inpatient respite care, transportation services, adult social day care, medical social services, hospice care, case managers, and nutritional counseling |
| New Mexico | Skilled and private duty nursing, in-home respite care, homemaker services, personal care services, and case managers [Effective 7/1/95 “we intend to amend the Disabled/Elderly waiver to include adult day health care, assisted living, personal services, environmental modifications, emergency response, and P.T., O.T., and speech therapy] |
| New York | In-home respite care, home-delivered meals, inpatient respite care, emergency home response, transportation services (for social day care), adult social day care, home/environmental modifications, medical social services, case managers (part of package of services), nutritional counseling, and moving assistance |
| North Carolina | In-home respite care, home mobility aids/devices, home-delivered meals, homemaker services, adult medical day care, inpatient respite care, emergency home response, home/environmental modifications, personal care services, and case managers |
| North Dakota | Institutional and in-home respite care, homemaker services, adult social day care, personal care services, chore services, case managers, specialized equipment, environmental modification, non-medical transportation, training of family caregivers, and home health aide [North Dakota has a Service Payments for the Elderly and Disabled (SPED) Program and an Expanded SPED Program, both of which are funded by State and county revenues. Several people with AIDS receive in-home services from these programs.] |
| Ohio | In-home respite care, home-delivered meals, homemaker services, home/environmental modifications, personal care services, and case managers |
| Oklahoma | Skilled and private duty nursing, in-home respite care, home-delivered meals, homemaker services, inpatient respite care, durable medical equipment, home/environmental modifications, adult social day care, personal care services, and case managers |
| Oregon | Home care services, live-in attendant (including in-home respite care), home/environmental modifications, home-delivered meals, residential care facilities, assisted-living facilities, adult foster homes, and specialized living facilities |
| Pennsylvania | Skilled nursing, in-home respite care, home mobility aids/devices, rehabilitation services, home-delivered meals, homemaker services, adult medical day care, inpatient respite care, durable medical equipment, emergency home response, transportation services, home/environmental modifications, mental health counseling, adult social day care, personal care services, case managers, handyman services, and nutritional counseling |
| Rhode Island | Homemaker services, emergency home response, personal care services, and home/environmental modifications |
| South Carolina | Home-delivered meals, adult medical day care, inpatient respite care, home/environmental modifications, personal care services, medical social services, and case managers |
| South Dakota | Skilled and private duty nursing, homemaker services, and adult social day care |
| Tennessee | Home-delivered meals, homemaker services, home/environmental modifications, personal care services, and case managers |
| Texas | Skilled and private duty nursing, in-home respite care, home mobility aids/devices, rehabilitation services, durable medical equipment, emergency home response, home/environmental modifications, and personal care services |
| Utah | In-home respite care, home-delivered meals, homemaker services, inpatient respite care, emergency home response, transportation services, adult social day care, and case managers |
| Vermont | In-home respite care, inpatient respite care, adult social day care, personal care services, and case managers |
| Virginia | The Virginia Medicaid program provides home and community-based care waiver services to people with AIDS through the AIDS-specific waiver |
| Washington | Skilled nursing, home-delivered meals, emergency home response, transportation services, home health aide, night support, client training, assisted living, home/environmental modifications, adult social day care, and personal care services |
| West Virginia | Homemaker services, transportation services, personal care services, case managers, and chore services |
| Wisconsin | In-home respite care, home mobility aids/devices, rehabilitation services, home-delivered meals, homemaker services, adult medical day care, inpatient respite care, durable medical equipment, emergency home response, transportation services, home/environmental modifications, mental health counseling, adult day care, personal care services, live-in attendant, case managers, benefits advocacy, chore services, and nutritional counseling |
| Wyoming | Personal care, respite care, adult day care, home-delivered meals, Personal Emergency Response System, and non-medical transportation |
Covered under both the State plan and the waiver program, but the waiver service is defined differently. “For example, state plan personal care does not allow for supervision and homemaker tasks,… [but] are allowed under the HCBS waiver.”
NOTES: AIDS is acquired immunodeficiency syndrome. HCBS is home and community-based services. P.T. is physical therapy. O.T. is occupational therapy.
SOURCE: Buchanan, R.J., University of Illinois at Urbana-Champaign, 1995.
Case management has been identified as one of the most important waiver services needed by people with AIDS (Merzel et al., 1992). When the Medicaid administrators were asked in the survey to identify services covered by the waiver program for the elderly and disabled in their State that were most effective at meeting the care needs of people with AIDS, case management services were consistently mentioned, as Table 4 documents. Other services that were listed in the survey responses as most effective at meeting HIV-related care needs are: personal care, homemaker services, in-home and inpatient respite care, attendant care, hospice care, home-delivered meals, and unlimited prescription drugs4 (Table 4). As Table 4 also illustrates, the Medicaid Home and Community-Based Care Waiver Programs for the Elderly and Disabled provided services to Medicaid recipients with HIV-related conditions in a number of States.
Table 4. Effective Services for and Number of Medicaid Recipients With HIV Illness Receiving Services From Waiver Programs for Elderly and Disabled.
| State | Services Deemed Effective or Comments | Number of Recipients |
|---|---|---|
| Alabama | Personal care, homemaker services, case manager, and respite care | Diagnosis-specific data not available |
| Alaska | “No AIDS-specific waiver. However, services available through our present waivers can meet the needs of HIV-related individuals.” | 1 person |
| Arizona | Respite care, hospice care, case manager, attendant/personal care, and home health services (nursing and aide) | NA |
| Arkansas | “Any of these [waiver] services could be used by AIDS recipients, if they meet the criteria.” | NA |
| California | California has an AIDS-specific Home & Community-Based Services waiver | 2,500 adults and 300 children (18 years or under) received services during 1994 from the AIDS-specific waiver |
| Colorado | “We have our own HCBS waiver for AIDS/HIV - but they may still access the elderly waiver if they want.” | NA |
| Connecticut | All waiver services are available if the person is determined eligible for the waiver program | NA |
| Delaware | “All [waiver-covered services in Delaware] in addition to regular Medicaid-covered services.” | NA |
| District of Columbia | No Medicaid Home & Community-Based Care Waiver for the Elderly and Disabled during 1995 | Not applicable |
| Florida | Florida has an AIDS-specific Home & Community-Based Services waiver | NA |
| Georgia | “AIDS clients may use the program if they meet the eligibility criteria.” | NA |
| Hawaii | Hawaii has an HIV/AIDS-specific Home & Community-Based Services waiver | 104 people with HIV/AIDS received services during 1995-1996 in the HIV/AIDS waiver program |
| Idaho | “HCBS waiver services are very limited [in Idaho].” | “We estimate that a small number of HCBS clients have HIV-related conditions.” |
| Illinois | All the services covered by the waiver program are effective at meeting the care needs of people with HIV-related illness | NA |
| Indiana | Case management, homemaker services, and attendant care | 13 people with HIV-related illness during FY 1996 |
| Iowa | Skilled and private duty nursing, in-home respite care, in-patient respite care, counseling, home health aide services, homemaker services, and home-delivered meals | 19 people with HIV-related illness during 1994 |
| Kansas | Personal care services | NA |
| Kentucky | The services provided through the waiver program are available to all eligible people; HIV-specific data is not collected | HIV-specific data is not collected |
| Louisiana | NA | NA |
| Maine | “The waivers for the elderly and disabled are not “targeted” to the HIV-related illness.” | The waiver for the elderly provided services to no one with HIV-related illness during 1995. |
| Maryland | Data not available if Senior Assisted Housing Waiver has provided services to people with HIV-related illness. | NA |
| Massachusetts | The data from Massachusetts is in the verification process | |
| Michigan | “Use all services as any other waiver client. No one or two specific services stand out.” | “Due to confidentiality issues in the State, we don't keep this specific data.” |
| Minnesota | Specialized foster home/hospice | 20 people with HIV-related illness |
| Mississippi | “Care plans are individualized with the appropriate waiver-covered services provided.” | NA |
| Missouri | Missouri has an AIDS-specific Home & Community-Based Services waiver | 200 people received services from the AIDS-specific waiver program |
| Montana | Personal care, private duty nursing, home-delivered meals, and respite care' | 2 people with HIV-related illness during 1994 |
| Nebraska | “Needs not tracked by type of disability.” | 5 people with HIV-related illness |
| Nevada | Homemaker services, personal care services, and case management (which includes medical social services) | 0 people with HIV-related illness during 1994 or 1995 |
| New Hampshire | None mentioned | 20-25 people with HIV-related illness |
| New Jersey | New Jersey has an AIDS-specific Home & Community-Based Services waiver | NA |
| New Mexico | “The Disabled/Elderly [waiver program] is not serving anyone with HIV-related illness [during 1995].” | 0 people with HIV-related illness during 1995 |
| New York | No services mentioned | 874 people with HIV-related illness during calendar year 1994 |
| North Carolina | “People with HIV-related illness may be served under our Home and Community-based waiver program.” | NA |
| North Dakota2 | “Most services are delivered to those persons eligible for nursing facility level of care. All [waiver services covered in North Dakota] would be effective if those eligible have an HIV-related illness.” | “We do not separate this data. If a person is nursing facility eligible, we do not look at their diagnosis.” |
| Ohio | Home-delivered meals, homemaker services, and personal care | “Exact number not known -- less than 150 people [with HIV-related illness].” |
| Oklahoma | NA | 0 people with HIV-related illness |
| Oregon3 | — | — |
| Pennsylvania | Pennsylvania has an AIDS-specific Home & Community-Based Services waiver | About 200 people are served each year under the AIDS-specific waiver |
| Rhode Island | Serostim drug therapy - a growth hormone for persons with AIDS-wasting syndrome | 30 people with HIV-related illness a year |
| South Carolina | South Carolina has an AIDS-specific Home & Community-Based Services waiver | Not applicable (0 people with HIV-related illness in the year ending 9/30/94) |
| South Dakota | Not applicable at this time | 0 people with HIV-related illness |
| Tennessee | Personal care services, homemaker services, home-delivered meals, case management, and home/environmental modifications | 1 person with HIV-related illness during 1994 |
| Texas | Medicaid health insurance, unlimited prescription drugs, skilled nursing services, and personal care services | NA |
| Utah | NA | 0 people with HIV-related illness |
| Vermont | Unknown | Unknown |
| Virginia | The Virginia Medicaid program provides home and community-based care waiver services to people with AIDS through the AIDS-specific waiver | — |
| Washington | All waiver services are effective | “This data is not collected.” |
| West Virginia | Insufficent data to respond | 4 people with HIV-related illness during 1996 |
| Wisconsin | Personal care, live-in attendant, homemaker services, adaptive aids, home-delivered meals, and respite care | “We do not collect this data.” |
| Wyoming | “[People with] HIV are not treated as a group, only as part of the HCBS population meeting established eligibility guidelines.” | “Unknown unless specifically identified.” |
“We have excellent benefits under our State plan so many individuals do not need to be enrolled in the waiver program to recieve the services they need. We are adding… special child care for children with AIDS, to allow us to provide in-home day care to the one child currently enrolled.”
North Dakota has a Service Payments for the Elderly and Disabled (SPED) Program and an Expnaded SPED Program, both of which are funded by State and county revenues. Several people with AIDS receive in-home services from these programs.
“HIV-related clients are not identified as a separate service category. HIV clients (even if known) are assimilated into all care settings. In most cases, HIV-diagnosed clients are not known, unless self-identified.
NOTES: NA is not available. AIDS is aquired immunodeficiency syndrome. HIV is human immunodeficiency syndrome. HCBS is home and community-based services. The Massachusetts Medicaid program did not complete the questionnaire.
SOURCE: Buchanan, R.J., University of Illinois at Urbana-Champaign, 1995.
The Disabled Waiver
Most States did not have a separate Medicaid Home and Community-Based Care Waiver Program for the Disabled, as Table 5 demonstrates, but often combined this coverage with the waiver program for the elderly. Table 5 presents the services covered by the States implementing a separate waiver program for the disabled. However, many of these separate waiver programs for the disabled are targeted at specific groups of people with disabilities and are not available to most people with AIDS. For example, the Medicaid Home and Community-Based Care Waiver Program for the disabled in Connecticut is targeted to people with mental retardation. According to the survey response, Connecticut is developing a new waiver for people with physical disabilities and another new waiver for people with an acquired brain injury. The separate waiver program for the disabled in Hawaii is targeted to the developmentally disabled, and other Hawaiians with disabilities are served through the waiver programs for the elderly and disabled. (Hawaii also implements the AIDS-specific waiver.) Similarly, the waiver program for the disabled in Louisiana is targeted to the developmentally disabled. New Jersey has several waiver programs for the disabled and also implements the AIDS-specific waiver. The Medicaid waiver program for the disabled in Mississippi is only for the orthopedically or neurologically impaired who have some rehabilitation potential.
Table 5. Services Covered Under the Medicaid Home and Community-Based Care Waiver Program for the Disabled: 1995.
| State | Services Covered |
|---|---|
| Alabama | In-home respite care, assistive technology, emergency home response, home/environmental modifications, personal care services, case managers, and rr[[missing text]] supplies (“up to $150 per month for items not covered by the regular Medicaid state plan under durable medical equipment”) |
| Alaska | Skilled and private duty nursing, in-home respite care, home-delivered meals, chore services, emergency home response, transportation services, home/e modifications, congregate meal services, adult social day care, case managers, habilitation, intensive active therapy, and specialized medical equipment a[[missing text]] |
| Arkansas | Home/environmental modifications, adult social day care, medical social services, case managers, employment services, crisis abatement (temporary plac facility when “recipient cannot be dealt with or is not safe in current environment”), and habilitation (“teach skills to manage in the world, ADL, money man[[missing text]] |
| California | California has an AIDS-specific Home and Community-Based Services waiver |
| Connecticut | “Connecticut has a separate Medicaid Home and Community-Based Waiver for people with mental retardationand is developing two new waivers. The firs[[missing text]] personal assistance services to people withphysical disabilities. The second will provide a wide range of services to people with an acquired brain injury.” |
| Florida | In-home respite care, home mobility aids/devices, home-delivered meals, homemaker services, adult medical day care, emergency home response, menta counseling, adult social day care, personal care services, case managers, benefits advocacy, handyman services, and nutritional counseling |
| Georgia | For severely disabled: skilled and private duty nursing, home mobility aids/devices, homemaker services, durable medical equipment, emergency home res[[missing text]] transportation services, home/environmental modifications, mental health counseling, personal care services, and case managers |
| Hawaii | Hawaii has a separate Medicaid Home and Community-Based Waiver for the Developmentally Disabled. Other persons with disabilities are served throug programs for the elderly/disabled: (1) Nursing Homes Without Walls or (2) Residential Alternatives Community Care Program |
| Illinois | Homemaker services, adult medical day care, emergency home response, home/environmental modifications, personal care services, and case managers |
| Iowa | In-home respite care, homemaker services, inpatient respite care, adult social day care, personal care services, skilled nursing, and home health aide servi[[missing text]] |
| Louisiana | For the developmentally disabled: in-home respite care, home mobility aids/devices, inpatient respite care, emergency home response, home/environment modifications, personal care services, case managers, and habilitation services (including residential, pre-vocational, supported employment, and day habil[[missing text]] |
| Maine | Personal care services and case managers |
| Minnesota | Skilled and private duty nursing, in-home respite care, home-delivered meals, homemaker services, inpatient respite care, emergency home response, trar[[missing text]] services, home/environmental modifications, adult social day care, personal care services, case managers, and specialized foster home |
| Mississippi | Personal care services and case managers (“Recipients must be severely orthopedically or neurologically impaired, with some rehabilitation potential.”) |
| Nevada | Homemaker services, medical social services, and case managers (the State plan covers many additional home and community-based care services) |
| New Jersey1 | Skilled and private duty nursing, home aerosolized drug therapy, in-home respite care, day treatment/partial hospitalization, in-home diagnostic testing, ho[[missing text]] intravenous therapy, home mobility aids/devices, substance abuse services, rehabilitation services, adult medical day care, inpatient respite care, durable [[missing text]] equipment, transportation services, home/environmental modifications, mental health counseling, podiatry services, personal care services, medical social hospice care, case mangers, nutritional counseling, and dental care |
| Pennsylvania | Skilled nursing, in-home respite care, home mobility aids/devices, rehabilitation services, durable medical equipment, emergency home response, transpo[[missing text]] services, home/environmental modifications, personal care services, live-in attendant, case managers, benefits advocacy, handyman services, and housin[[missing text]] |
| South Dakota | In-home respite care, home mobility aids/devices, inpatient respite care, transportation services, case managers (including housing referrals), benefits ad[[missing text]] nutritional counseling, and only those dental services not covered by the regular Medicaid program |
| Virginia | The Virginia Medicaid program provides home and community-based care waiver services to peoplewith AIDS through the AIDS-specific waiver |
NOTE: AIDS is acquired immunodeficiency syndrome. ADL is activities of daily living. All other States (except Massachusetts) and the District of Columbia responded that they did not have a separate Home and Community-Based Care Waiver program for the disabled during 1995. A number of these States noted that waiver services for the disabled are combined with the waiver program for the elderly. The Massachusetts Medicaid program did not complete the survey process.
New Jersey has several waivers for the disabled and the services vary according to the specific waiver; these services are provided in at least one of these waivers.
SOURCE: Buchanan, R.J., University of Illinois at Urbana-Champaign, 1995.
Table 6 lists the services provided by the waiver programs for the disabled that State Medicaid administrators identified as most effective at meeting the health care needs of people with AIDS. Among the services mentioned are: personal care, assistive technologies, emergency response, case managers, respite care, homemaker services, home-delivered meals, and medical social services. Table 6 also illustrates that a few States provided services to Medicaid recipients with HIV-related conditions with the separate Medicaid Home and Community-Based Care Waiver Programs for the Disabled.
Summary and Conclusions
The Medicaid Home and Community-Based Care Waiver programs allow the States considerable flexibility in defining the groups of people to be served and the range of services to provide (Lindsey, Jacobson, and Pascal, 1990). These waivers allow the States to implement innovative programs to provide long-term care to people with AIDS. Given their disability status, people with AIDS who meet the more generous eligibility standards established for these waiver programs may receive services from the Medicaid Home and Community-Based Care waiver programs for the Elderly and Disabled or from a separate waiver for the disabled (although these waiver programs for the disabled are limited in many States to the developmentally disabled). In addition 15 States and the District of Columbia have established AIDS-specific Medicaid Home and Community-Based Care waiver programs, and Maine expects to implement this AIDS-specific waiver during 1997.
A study of the AIDS-specific waiver in Florida found that people receiving services from this program were generally satisfied with the range and availability of services provided (Cowart and Mitchell, 1995). Case management services are advocated as critical to the care of people with AIDS, with the role of the case manager extending beyond the coordination of health services to include helping people with AIDS cope with their social and emotional needs (Merzel et al., 1992). As Tables 1, 3, and 5 demonstrate, the Medicaid Home and Community-Based Care waiver programs for people with AIDS, the elderly and disabled, and for the disabled offer case management services in most States. Case management was identified by Medicaid administrators in the survey conducted for this research as among the most effective waiver services provided to people with AIDS. Other services provided by these waiver programs that the Medicaid administrators identified as most effective at meeting the care needs of people with AIDS are: personal care, homemaker services, assistive technologies, emergency response, medical social services, in-home and inpatient respite care, counseling, home intravenous therapy, nutritional counseling and supplements, attendant care, hospice care, home-delivered meals, and unlimited prescription drug coverage. (See Tables 2, 4, and 6.) State Medicaid programs not administering the AIDS-specific waiver program can include these services in their waiver programs for the elderly and disabled. Because people with AIDS are typically eligible for these waiver programs as a result of their disability status, even States without the AIDS-specific waiver can then offer Medicaid recipients with AIDS a broad range of needed home care and community-based services.
Acknowledgments
The authors thank the State Medicaid administrators who took the time to answer the questionnaires that collected the data necessary for this research. Without their cooperation this study would not have been possible.
Footnotes
Robert J. Buchanan and Bonnie J. Chakravorty are with the Department of Health Administration and Policy of the Medical University of South Carolina. This research was funded by the Health Care Financing Administration, U.S. Department of Health and Human Services Grant Number 18-P-90286/5-02. All views and opinions are those of the authors and do not necessarily reflect the views of the Medical University of South Carolina or the Health Care Financing Administration.
The Massachusetts Medicaid program did not complete the survey process.
Note that each list of services included “Other (please describe).”
The HCFA Form 372 is the Annual Report on Home and Community-Based Services Waivers, which includes reports on expenditures and other program data (Lindsey, Jacobson, and Pascal, 1990). The HCFA 372 data returned by most States were incomplete, with many States not returning any HCFA 372 data. Because of the possible bias of these data, given the large number of States not reporting data, these HCFA 372 data are not included in this article. Tables summarizing the limited HCFA 372 data that were reported in the survey are available from the author.
The State Medicaid programs may impose utilization limits on the prescription drugs covered by the regular State Medicaid plan (Buchanan and Smith, 1994).
Reprint requests: Robert J. Buchanan, Ph.D., Department of Health Administration and Policy, Medical University of South Carolina, 171 Ashley Street, Charleston, SC 29425-2718.
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