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Analysis of the California In-Home Supportive Services (IHSS) Plus Waiver Demonstration Program

Executive Summary

Robert Newcomer, Ph.D. and Taewoon Kang, Ph.D.

University of California, Center for Personal Assistance Services

July 2008


This report was prepared under contract contract #HHS-100-03-0025 between the U.S. Department of Health and Human Services (HHS), Office of Disability, Aging and Long-Term Care Policy (DALTCP) and Research Triangle Institute. Additional funds were provided by the National Institute for Disability and Rehabilitation Research under grant #H133B031102. For additional information, you may visit the DALTCP home page at http://aspe.hhs.gov/daltcp/home.htm or contact Pamela Doty, at HHS/ASPE/DALTCP, Room 424E, H.H. Humphrey Building, 200 Independence Avenue, SW, Washington, DC 20201. Her e-mail address is: Pamela.Doty@hhs.gov.

This report was prepared under subcontract 5-312-0208826 between RTI International and the University of California (Edith G. Walsh, Ph.D., project director). The opinions and findings expressed in this report are those of the authors. They do not necessarily reflect the views of the Department of Health and Human Services, the contractor or any other funding organization.



In 2004, the Centers for Medicare and Medicaid Services (CMS) approved California’s In-Home Supportive Services (IHSS) Plus program under the Section 1115 demonstration authority of the Social Security Act. California refers to this program as the IHSS Plus Waiver. Full Medicaid (referred to as Medi-Cal in California) benefits and IHSS Plus benefits are available to all eligible IHSS Plus recipients. The IHSS program began in the early 1970s and was originally funded primarily with state and county funds and some federal Title XX (later renamed Social Services Block Grant) funds. Beginning in 1993, most IHSS services were financed through the Personal Care Services Program (PCSP) optional benefit and California benefited from 50% federal financial participation to cover these costs. However, prior to the granting of the IHSS Plus waiver, some services provided to a minority of IHSS recipients were not eligible for Medicaid federal matching payments. The cost of these “Residual Program” services had to be borne entirely by the state, with county cost sharing.

The effect of the IHSS Plus Waiver is to reduce the state and county share of costs for eligible Residual Program services to the same rates as in the state’s PCSP. About 26,000 persons were receiving all or a portion of their IHSS personal assistance in 2004 through elements of the Residual Program that were to be incorporated into the IHSS Plus Waiver. The components of the IHSS Plus Waiver (i.e., the services not previously eligible for federal matching payments) include:

As a condition of granting the IHSS Plus Waiver, CMS required an evaluation. All “1115” research and demonstration waivers are subject to a “budget neutrality” requirement; that is, Medicaid costs under the waiver cannot exceed estimated costs in the absence of the waiver. Thus, the primary purpose of the evaluation was to determine the impact of the waiver on Medicaid service use patterns and associated costs. However, the Office of the Assistant Secretary for Planning and Evaluation also wished to know about availability of and preferences for Spouse and Parent providers and whether IHSS recipients with Spouse or Parent providers (especially minor children with Parent providers) and differences in characteristics, such as medical diagnoses and severity of disability, among those receiving services from different provider types (e.g., Spouse or Parent, Other Relatives, and Non-Relatives).

Changes made to Medicaid law and policy through the Deficit Reduction Act of 2005 now make it possible California and other states to offer Medicaid coverage for personal care services provided by “legally responsible relatives” (i.e., spouses or parents/guardians of minor children) without an “1115” waiver. The results of the IHSS Plus evaluation indicate that allowing personal care services to be provided by such previously prohibited provider types is unlikely to increase -- and may even slightly decrease -- Medicaid costs.

The IHSS Plus Waiver was initiated in August 2004. This report documents IHSS Plus Waiver implementation and recipient Medicaid service use in calendar year 2005. Analyses compare recipients having a waiver-eligible provider (i.e., parents of children, spouses of adults) for any portion of 2005 with recipients in the regular IHSS program who received personal assistant services through Other Relatives and Non-Relative providers during the same period. Recipients are classified by these provider types on an “intention to treat” basis. Recipients changing between Spouse/Parent providers and non-waiver-eligible providers are considered throughout the analysis as being in the spouse/parent group. This is analogous to an experiment where an individual enrolls into the innovative care group and later changes into “usual” care, but for purposes of analysis, the recipient is included within the group to which they were originally assigned.

The following questions are examined:

Taken together, these descriptive questions assess four fundamental policy issues: whether there was a change in the number and attributes of spouses and parents of minors that are paid providers under the IHSS program; whether hiring legally responsible relatives as personal assistance providers seems to be a recipient/family preference; whether Spouse and/or Parent providers performed, as well as the use of other providers in enabling IHSS recipients to remain at home, safely; and whether the employment of family providers has been budget neutral for Medicaid in terms of health care use/expenditures. These policy issues are addressed in the conclusions section of this summary.

Approximately 407,000 persons received IHSS services in 2005. Of these approximately 25,700 recipients had as paid providers either parents of minor children, or spouses of adults. These recipients were classified as being in the IHSS Plus Waiver. Restaurant Meals voucher and Advance Pay recipients combined to include 1,600 additional Waiver recipients. About 60% of all IHSS recipients in 2005 were age 65 or more. Minor children (age 3-17) accounted for about 4% of recipients. The remaining one-third was recipients age 18-64. The distribution of recipients by IHSS Plus Waiver and PCSP providers varied by recipient age group. Parents predominate (70%) as providers among recipients age 3-17. Other Relatives and Non-Relatives are the predominant source (75%-95%) of providers for adult IHSS recipients. About 5% of non-aged adults and 2.5% of the aged IHSS recipients had IHSS-paid Spouse providers. There were only minor differences in these distributions comparing IHSS recipients continuing in the program from 2004 and those entering the program in 2005.

Females are the absolute majority of IHSS recipients, as well as the majority of those cared for by Other Relatives and Non-Relatives. Males predominate as IHSS recipients age 3-17, and they account for the majority of those cared for by an IHSS-paid Spouse. The IHSS program has a broad mix of racial/ethnic groups, with non-White groups accounting for the majority of recipients across all age groups. Hispanic and Asian recipients are more likely to use relatives (parents, spouses, or other relatives) as paid IHSS providers than are White or Black recipients.

The disability/chronic illness profile of each age group is different, as is the distribution of recipients among the types of paid providers used. Because of this most of the discussion is presented by recipient age group.

Summary of Findings

Racial/Ethnic and Household Characteristics of IHSS Recipients

Functional Limitations and Chronic Health Conditions

Continuity of Provider Relationships and Share of Cost

Authorized Hours of Service

Average Monthly Total Medicaid Expenditures

Medicaid-Reimbursed Hospital Expenditures and Use

Medicaid-Reimbursed Physician, Outpatient and Emergency Room Use

Home and Community-Based Services

Nursing Home Use

Conclusions

This section addresses four fundamental policy issues implicit in the IHSS Plus Waiver and its efforts to extend the use of spouses and parents as paid providers for personal care services.

IHSS Plus vs. the IHSS Residual Program Participation

The number of recipients cared for by Spouses and Parents of minors paid as IHSS providers remained relatively constant between 2004 (under the IHSS Residual Program) and 2005 (under the IHSS Plus Waiver); as did the total number of persons (about 1,600 recipients in 2005) participating in the Restaurant Meals voucher and Advance Pay waiver-eligible services. The new recipients, as a group, tended to be somewhat less impaired, to have lower health care expenditures, and to receive fewer IHSS authorized hours than the group of recipients who were in IHSS during the prior year, or longer. These attributes likely could be common to all cohorts of new recipients, and may not be unique to IHSS Plus Waiver program entrants. The race/ethnic and provider mix was somewhat different comparing the new and continuing program cohorts, showing a proportionate increase in Hispanic and Asian recipients.

Preferences in the Selection of Paid IHSS Providers and Outcomes

The selection of a Parent or Spouse as a paid provider, across all age groups, is partly a function of available family members, but differences in the proportion among race/ethnic groups “selecting” each of the various provider types suggests that cultural preferences may be an important selection factor. Wage and other possible influences on provider availability were not an in-depth focus of these analyses, but IHSS wage rates (which vary by county) did not have a consistent association with the selection of paid Parent or Spouse providers. To the contrary, higher wages were marginally associated with an increased use of Non-Relative providers, and Parents and Spouse providers were more likely when wages were low (and presumably low wages may make it more difficult to attract Non-Relative providers).

Recipients Age 3-17

Minor children in IHSS generally have at least one parent in the home. Consequently, for most of these children, the choice of Parent/Non-Parent provider was possible and the choice made by families was for a Parent provider (70% overall and 80% when a parent was present in the home). Hispanics had the highest proportion selecting Parent providers (81%) and the least selecting Non-Relative providers (9%). Blacks (60%) were the least likely to have paid Parent provider, and comparable to Whites in the proportion selecting Non-Relative providers (20%). The decision of families to seek IHSS versus other service options was outside the scope of this study.

There were few differences by provider type in the number of ADL/IADL and cognitive limitations among minor children IHSS recipients. However, proportionately more minor children with paid Parent providers were dependent on human assistance with breathing (this includes assistance with self-administration of oxygen, and the cleaning of this equipment), and had more chronic health conditions (including mental retardation, seizure disorders, and paralysis). These conditions have been shown to be associated with nursing home use in minor children (Fries, Wodchis, Blaum, et al., 2005), and may be indicative of the Parent provider’s willingness and/or greater ability to assume the demanding care responsibilities associated with these conditions. Contributing to this ability may be that parents are legally permitted to perform “skilled nursing” tasks that other providers, especially Non-Relatives, would not be permitted to perform. Investigation of the “cause” of this pattern is outside the scope of the current study.

Recipients Age 18-64

Spouse providers were rarely available as a choice to the non-aged adults participating in IHSS. Most IHSS recipients in this age group were either not married or their spouses were also IHSS recipients or otherwise not able physically/mentally to be paid caregivers. However, when spouses were available and able, the “preference” for them appears to be strong (90% among those with an available/able spouse). Parents were more readily available than spouses to non-elderly adults, and more recipients of this age group selected Parent paid providers. The availability of parents beyond those selected as paid providers is unknown in the IHSS data. There were discernable ethnic differences in the propensity to select Parent or Spouse providers. Hispanics were most likely to select Parent providers (26%), and the second most likely to select Spouse providers (9%). Asians were the most likely to select Spouse providers (11%), and second most likely to select Parent providers (18%). Blacks were the least likely to select either Spouse (2%) or Parent (10%) providers. More than half of the Blacks and Whites relied on Non-Relative providers. This contrasted with about a third among Hispanics and Asians.

In general, recipients with paid Parent or Spouse providers had more limitations in ADL and cognitive functioning, and a comparable number of chronic health conditions than recipients with other providers. However, those with paid Parent providers had higher rates of mental retardation/developmental disability, central nervous system injuries/disorders such as quadriplegia, paraplegia, other extensive paralysis or spinal cord disorders, and seizure disorder) -- all of which are conditions shown by Fries and associates (2005) to be associated with higher risk of nursing home placement.

Recipients Age 65 or More

Spouses were present among about 25% of this age group of IHSS recipients, but except for those paid as Spouse providers, the number able/available reduced to about 3%. When a recipient-provider was an Other Relative or a Non-Relative, almost half of the spouses present were also IHSS recipients. This pattern of both partners being on IHSS may be the consequence of the income and asset eligibility criteria used for Medicaid among IHSS recipients. Unlike the criteria used for nursing home recipients, IHSS recipients are not allowed to separate their couple assets when determining program Medicaid eligibility for one individual. Recipients with IHSS-paid Spouse providers tended to have more ADL, cognitive, and breathing assistance limitations, but there were no substantial differences in the number of health conditions. Race/ethnicity had a minor association with the presence of a paid Spouse provider (the percentages range from 1%-4%), but the more striking differences involved recipients with Other Relative and Non-Relative providers. More than half of the Asian (64%) and Hispanic (54%) recipients had an Other Relative as their paid provider, whereas more than half of the Whites (53%) and Blacks (56%) had Non-Relative providers.

Implications for Medicaid and IHSS Expenditures

For all recipient age groups, IHSS expenditures, adjusting impairment severity and service needs, are expected to be lower relative to those with Non-Relative providers when Parents, Spouses, and Other Relatives living in the household are paid IHSS providers. This cost difference arises because an IHSS algorithm adjusts the authorized time for housekeeping/meal preparation when there are relatives living in the household who might be expected to perform these tasks for themselves as well as for the recipient. This adjusted cost difference was observed for Parent providers to minor children, and for Spouse providers of adults. The cost differences for Parent provider (non-aged adults) and Other Relative providers were minor or non-significant. This could be because these providers were not living with the recipient or they may reflect limitations in the risk adjustment model.

Minor children with Parent providers, after adjusting for recipient functional and health conditions, have lower average monthly Medicaid expenditures than those with Non-Relative providers. These recipients also have lower adjusted use of IHSS and other home care service expenditures.

Adjusting for recipient characteristics, recipients age 18-64 with Spouse providers had lower average Medicaid monthly expenditures than those with Non-Relative providers. There were no statistically significant differences comparing recipients with Parent and Non-Relative providers. Among these adult IHSS recipients each of the paid relative provider groups had a significantly reduced likelihood of nursing home placement compared to those with Non-Relative providers. The Parent provider effect for those age18-64 appears greatest. Those with Spouse providers tended to have higher risk of “any cause” hospital stays (but not those associated with ambulatory sensitive conditions), higher risk of ER use, but lower IHSS and home care expenditures than recipients with Non-Relative providers. Recipients with Parent providers compared to those with Non-Relative providers had lower adjusted use of hospitals, ERs, and home care.

Average monthly Medicaid expenditures among recipients age 65 or more, adjusting for recipient characteristics, were lower for those with Spouse providers and Other Relative compared to Non-Relative providers. This tendency for lower risk among those with family providers was also present with respect to ambulatory sensitive hospital stays; and those with Other Relative providers compared to those with Non-Relative providers had reduced risk of ER use, lower monthly expenditures for IHSS and other home care. The protective effect of relatives as paid providers was also present, but this association was with the Other Relative provider category as compared to Non-Relative providers.

In short, these analyses found no financial disadvantage and some advantages to Medicaid from allowing spouses, parents (and other relatives) to be paid IHSS providers. This argues in favor of honoring the recipient’s and family’s preference for such providers. Whether the availability of spouse, parent, and other relatives can be expanded beyond its current proportion among all race/ethnic groups in IHSS is unknown, but changes in the race/ethnic mix of recipients evident in the new cohort of enrollees may affect this. The proportion of recipients who are Hispanic or Asian seems to be growing. These groups presently have the highest proportionate use of Spouse, Parent, and Other Relative providers.

These effects of selecting Parent, Spouse, and Other Relatives as paid providers are present within a program where the rate of Medicaid nursing home stays among IHSS recipients with Non-Relative providers seems to be low. This suggests that IHSS in general is doing a good job of enabling recipients to remain in the community regardless of the provider type selected. Not examined in this analysis were the factors (such as hospital stays, avoidable changes is health or functional status) associated with entry into and exit from IHSS; or the duration of participation in IHSS and the cost/use comparisons over time.

The Full Report is also available from the DALTCP website (http://aspe.hhs.gov/_/office_specific/daltcp.cfm) or directly at:

Main Report: http://aspe.hhs.gov/daltcp/reports/2008/IHSSPlus.htm

Appendices: http://aspe.hhs.gov/daltcp/reports/2008/IHSSPlus2.htm