the tefra medicaid eligibility option for children with severe disabilities: a national study

The TEFRA Medicaid Eligibility Option for Children With Severe Disabilities: A National Study Rafael M. Semansky, MPP Chris Koyanagi

Abstract

The Tax Equity and Fiscal Responsibility Act (TEFRA ) Medicaid Eligibility Option, also known as the Katie Beckett Option, was developed to allow children with disabilities from near-poor and middle-income families to qualify for Medicaid. TEFRA has been available since 1982; however, little is known about the number of children served and their qualifying disability. This first national study found that 20 states enrolled nearly 25,000 children in 2001. Only 10 of these states allowed children to qualify because of a mental health disability. Additional research is needed to understand the role of TEFRA in providing insurance to children with disabilities.

Introduction

The inequity of Medicaid eligibility rules for children with disabilities came to the attention of policymakers through the plight of Katie Beckett, a child who depended on a ventilator. The Beckett family's income was above Medicaid eligibility, but was insufficient to pay for her care. At the time, a child with severe disabilities who was otherwise ineligible for Medicaid could become eligible only if the child spent more than 30 consecutive days in an institution. Parents were financially responsible for the first 30 days and then Medicaid would cover all subsequent costs for institutional care, but not home-based care. The only ways to qualify for full Medicaid coverage were if the child's medical costs resulted in the family's impoverishment to meet Medicaid's financial eligibility requirements or if the parents relinquished custody of the child to the state. The Beckett family wanted their daughter to come home, with the medical care that she needed, but as soon as she returned home, she would be ineligible for Medicaid because of the inclusion of her family's income and resources. In response to children with situations similar to the Beckett family's dilemma, Congress amended the Medicaid law to include the Katie Beckett Waiver in 1981.

In 1982, the Tax Equity and Fiscal Responsibility Act (TEFRA) created the TEFRA Medicaid Eligibility Option for children, which expanded what had been accomplished by the Katie Beckett Waiver. This option allows states to extend Medicaid eligibility to certain children and adolescents (aged 0-18) with disabilities by disregarding parental income. The option has several administrative

Address correspondence to Rafael M. Semansky, MPP, Senior Study Director, Westst, lnc, 1650, Research Blvd, Rockville, MD 20850. E-mail: [email protected].

Chris Koyanagi, is Director of Policy at Bazelon Center for Mental Health Law, Washington, DC.

Journal of Behavioral Health Services & Research, 2004, 31(3), 334--342. (~) 2004 National Council for Community Behavioral Healthcare.

334 The Journal of Behavioral Health Services & Research 31:3 July~September 2004

differences from home- and community-based services waivers,* a more well-known approach to qualifying children with disabilities for Medicaid. To implement a waiver, states submit an application to the Centers for Medicare and Medicaid Services (CMS), monitor it as a separate program, and provide data on the program. A renewal application is submitted every 3 to 5 years. States can target the waiver to certain groups of children and adults. TEFRA is an option and not a waiver, and so states only have to inform the regional CMS office that the option has been selected. With an option, states must enroll all children who qualify under TEFRA and cannot limit the number of slots or single out particular disabilities.

To be eligible for Medicaid under TEFRA, a child must meet several criteria. The child must be determined to have a physical or mental disability under standards of the federal Supplemental Security Income (SSI) disability program. Under SSI, a child must have an impairment that lasts or is expected to last at least 1 year or to result in death. In addition, the child must have marked and severe functional limitations in comparison with children of the same age. 1 States cannot discriminate among disabilities in the administration of the TEFRA option. As specified by federal regulations, children with mental disorders, including mental health conditions, can qualify for TEFRA. The CMS Medicaid manual requires that states "provide coverage to all disabled children who meet the [eligibility] conditions "'2

The TEFRA eligibility rule also includes a level of care requirement. The child must require the level of care provided in a hospital, an intermediate care facility for mental retardation (ICF-MR), or a nursing home. States determine whether the child meets the level of care requirement. The child does not actually have to reside in one of these institutions but must need that level of care. Caring for the child at home must be appropriate and also cannot exceed the cost of the alternative institutional care. 3

This study examines the use of the TEFRA option for children and adolescents. This article will discuss findings on the number of children qualifying for Medicaid under the option, search for patterns in enrollment, and examine differences in enrollment for children with mental health conditions, excluding developmental disabilities such as mental retardation. Additional areas for research will also be discussed. TEFRA may have significant relevance for mental health policy since it provides one possible avenue for third-party payments for children with serious mental disorders who would not normally have coverage for Medicaid's broad package of services.

The Importance of the TEFRA Medicaid Eligibility Option for Children With Disabilities

Differing estimates are available on the prevalence of disabilities among children, depending on age and disability type and level of severity. The US Census Bureau estimated that 5.2 million (7.8%) children younger than 15 had any type of disability and that 3.3 million (3.8%) had a severe disability in 1997. 4 Data from the 1992 National Health Interview Survey indicated that 6.1% of youth younger than 18 were limited in activity because of a chronic health problem or impairment. 5 An earlier report estimated that, in 1990, 4.5 million children aged 0 to 18 (6.8%) had a disability resulting in difficulty with certain functions or abilities. 6

Another indication of the number of children with severe physical and mental disabilities is the number of children who qualify because of disability for Social Security Income (SSI) payments. In 2000, 846,784 children with disabilities (0-18) were receiving SSI. 7 Nearly two thirds of these children (62.5%) were disabled because of a mental disorder, with the largest percentage having

*Under section 1915 (c) of the Social Security Act, states can offer waiver services to individuals who have been deemed eligible for Medicaid because of their need for institutional services. States can target the waiver to specific populations, geographic areas, or a limited number of participants.

The TEFRA Medicaid Eligibility Option SEMANSKY, KOYANAGI 335

mental retardation (32.8%). Children diagnosed with schizophrenia comprised 0.5% and 29.2% had other psychiatric disorders (ie, mood disorders, anxiety disorders, autistic disorder, and other perva- sive developmental disorders). Since SSI qualification is also determined by considering income and resources, these figures are underestimates. In 1999, more than 120,000 children met SSI disability requirements, but were either denied eligibility or had their benefits suspended because of family income or resources. 8

Estimates are also available by disability type. The US Surgeon General estimates that 4.1 million children and adolescents (aged 9-17) had a serious emotional disturbance in 1995. 9 A serious emotional disturbance is a mental, emotional, or behavioral disorder that severely disrupts daily func- tioning in home, school, or the community. Specific disorders include attention deficit/hyperactivity disorder, autism, bipolar illness, anxiety, conduct disorder, major depression, and schizophrenia. 10

Not all children with serious emotional disturbance need a hospital level of psychiatric care in any one year. A 1990 study of Medicaid enrollees in 2 states found that between 7.7% and 10.8% of children had at least 1 day of inpatient psychiatric care during a 1-year period, ll For all children, a national study found that 0.67% of children younger than 18 were admitted to an inpatient psychiatric hospital. 12 A nationwide study conducted in 1994-1995 estimated that 214,700 children and adolescents aged 6 to 18 with a primary psychiatric diagnosis were discharged from general hospitalsJ 3 The Great Smoky Mountains Study found that during a 1-year period, 0.8% of the children received any type of out-of-home placement, such as psychiatric hospitalization or placement in a residential treatment centerJ 4 However, inpatient hospitalization rates may not indicate the actual need for this level of care since they have been found to be sensitive to private insurance benefits.15,16

Because children with disabilities require higher levels of healthcare and specialized services than do children with acute conditions, parents of children with disabilities face greater difficulties financing their children's long-term and intensive care. Private insurance policies typically have limitations on rehabilitative services and other care needed by individuals with disabilities and chronic illnesses.17-21These policies sometimes exclude treatment for specific conditions such as developmental disorders, behavioral conditions, and conditions not caused by illness or injury. 22 Because of these exclusions on treatment and limitations on coverage and condition, privately insured families of children with special healthcare needs experience more problems with access to care and lower satisfaction levels than do those with public insurance. 23

Few families can afford to pay for long-term intensive services out-of-pocket, z4 Nevertheless, many families have incomes and assets that place them above the eligibility level for Medicaid and the State Children's Health Insurance Program (S-CHIP), a more recent federal and state-funded program for near-poor children and families that in most states provides a minimal level of coverage for mental health conditions. Another group that cannot afford to pay for intensive mental health services are families without any insurance coverage. An estimated 17% of children with any disability were without either public or private insurance in 1990. 6

Medicaid offers a more extensive mental health benefit package for these children. 23'25 However, Medicaid's income and asset eligibility rules create barriers for many of these families. Parents are then faced with difficult choices. One avenue for accessing Medicaid is for parents to relinquish custody of their children to state child welfare departments or juvenile justice systems. To relinquish custody, parents usually have to appear in court to file neglect charges against themselves or declare that their child is in need of services. Although parents who relinquish custody sometimes gain care for their children, they no longer have their children at home and have lost the right to make key health and education decisions. 26,27 A national study by the National Alliance for the Mentally Ill found that 17% of parents of children with serious emotional disturbance had relinquished custody of their children to obtain health treatment. 28 A 1991 survey of state child, mental health, social services, education, and corrections departments found that at least 1 agency in 28 states (68%) required custody relinquishment to obtain services. 29 The General Accounting Office (GAO) recently estimated


that in 2002 more than 12,700 children were placed in child welfare and juvenile justice to receive mental health services. The GAO figure is an incomplete national estimate because it is based on data from only 28 state child-welfare agencies and 33 county juvenile-justice agencies. Seventy percent of the children (9000) were placed in juvenile justice facilities. 3° Other parents choose to pay for the mental health services that they can afford and have their children forego other needed services. 9'31

Need for Study A literature search was conducted to identify any previous studies of the TEFRA option. Several

experts on long-term care and children with special healthcare needs were also contacted. No other national studies were found on states' use of the TEFRA option. The state of Minnesota conducted the only study of children who gained eligibility for Medicaid through TEFRA. 32,33

The 1995 Minnesota study was a random survey of 949 parents of children on TEFRA that reviewed the characteristics of TEFRA children. These children had high needs for healthcare, and 80% of them had more than 1 diagnosis. Average costs for all heathcare provided to them were $35,000 per year. Families paid annual out-of-pocket medical expenses averaging $2300 per child, more than 11% of their average-adjusted gross income. Seventy-nine percent of families with children on TEFRA had private insurance, but a third of the policies had coverage exclusions or limitations related to the child's needs. Since Medicaid is the payer of last resort and these children usually have other sources of payment (private health plans, families, and schools), the average annum cost paid by Medicaid was $8100 per child, one quarter of the total healthcare costs. 32

The Minnesota study also examined children with mental health disabilities. These children were found to comprise a small part of the TEFRA population. Thirteen percent of children on TEFRA had a mental health diagnosis without either a physical disability or developmental disorder. The average annual healthcare costs of children with mental health disabilities were much lower than for children with physical or developmental disabilities ($17,900 compared to $43,000 per year). 32 Another analysis of the Minnesota surveys found that children on TEFRA with a mental health diagnosis differed from children with other disabilities in that they came from families with lower incomes and were also less likely to have supplemental insurance. 33

Study Design The study was designed to examine the total number of children with physical and/or mental

disabilities in the TEFRA option and the extent to which children with a primary diagnosis of a mental health disability could and did become qualified for Medicaid through TEFRA. In this study, we defined mental health disabilities to include psychiatric, behavioral, and emotional disabilities and exclude mental retardation. This study comprised 2 components. We reviewed state TEFRA regulations and materials developed by states and parent organizations to inform parents about this option. In addition, a brief survey was mailed to the state Medicaid official(s) identified as the expert on TEFRA. All 20 states with the TEFRA option were included in the study: Alaska, Arkansas, Connecticut, Delaware, Georgia, Idaho, Maine, Massachusetts, Michigan, Minnesota, Mississippi, Nebraska, Nevada, New Hampshire, Rhode Island, South Carolina, South Dakota, Vermont, West Virginia, and Wisconsin.*

The analysis of state documents (Medicaid regulations, staff manuals, and memoranda) examined whether the state's criteria for an institutional level of care would result in the inclusion or the

*CMS identified 20 states. The states studied included Connecticut, which does have the option, but was not on the CMS list and excluded Virginia, which was included in the most recent list available from CMS, but said that it did not select the TEFRA option.


exclusion of children with a primary diagnosis of a mental health disability from qualifying because of that disability. Copies of materials describing TEFRA, which were developed for parents, were also requested from the state or other sources indicated by the state. State documents were in effect as of June 2001 to October 2001. Only 2 states declined participation in the document review, resulting in a response rate of 90%. The survey was conducted from October 2001 to January 2002. The survey response rate was 100%.

The survey data had several limitations. The document analysis was dependent on the submission of all relevant documents by Medicaid officials. Some states were able to provide only estimates of the child's primary diagnosis.

Findings States with the TEFRA option vary widely in the number of children served

Nearly 25,000 children with disabilities qualified for Medicaid under the TEFRA option in 2001. Enrollment size ranged from a low of 10 in Michigan to a high of 4300 in Wisconsin. The 5 states (Arkansas, Georgia, Minnesota, South Carolina, Wisconsin) with the largest number of children on TEFRA accounted for 70% of children on TEFRA nationally. As reflected in Table 1, variations in Medicaid enrollment through TEFRA range from 0.0004% to 0.49% percent of a state's child and adolescent population, indicating more than a 1000-fold difference. Different rates of enrollment in TEFRA are unrelated to a state's child population.

Children qualify for TEFRA primarily because of physical disability and mental retardation

Ninety percent of chitdren qualify for Medicaid through TEFRA because of a physical disability or mental retardation. An estimated, 8% (2012) of all children on TEFRA qualified because of a mental health disability. Refer to Table 1. Children with mental health disabilities represented between 3% and 21% of a state's total TEFRA enrollment (except in Vermont, which estimated that 52% of its children had a primary mental health diagnosis).

The number of children qualifying for TEFRA because of mental health disabilities was low. Only 10 states reported children could qualify for Medicaid through TEFRA because of mental health disabilities. These states consider, either formally or informally, psychiatric hospitals as medical institutions. Seven states (Alaska, Delaware, Maine, Minnesota, New Hampshire, West Virginia, and Wisconsin) have added "psychiatric hospitals" to their definition of medical institutions. An additional 3 states (Arkansas, Mississippi, and Vermont) interpret medical institutions to include psychiatric hospitals. Although no state explicitly excluded psychiatric hospitals from its definition, one state narrowly defined an "institutional level" of care as care addressing the needs of children with only physical disabilities.

The TEFRA option does not appear to be well known

The option was not well known among state officials. During the study, we found that it was difficult to identify a Medicaid agency staff person who was able to complete the survey. Many of the Medicaid TEFRA staff often confused the option with the more widely available home- and community-based services waivers for children who have physical or mental retardation. Furthermore, little is known about the children with disabilities who rely on the option. Minnesota was the only state found in the Bazelon Center survey to have conducted a study of TEFRA, and it was done in 1995.

The availability of accurate information on public programs, benefits, and eligibility has been found to affect program enrollment. 34,35 Only half of the states (Arkansas, Connecticut, Idaho, Minnesota, Mississippi, New Hampshire, South Carolina, South Dakota, Vermont, Wisconsin) had educational

338 The Journal of Behavioral Health Services & Research 31:3 July/September 2004

Table 1 Children enrolled in the TEFRA Medicaid Eligibility Option, 2001

State

Children Percentage Number of Percentage qualify on of children children with of children

the basis of in state on primary on TEFRA mental health Number of TEFRA mental with primary

disability children (in tenths of health mental health diagnosis on TEFRA percentage)* diagnosis diagnosis

Alaska Yes 272 0.4 16 t 6 Arkansas Yes 3334 4.9 700 t 21 Connecticut No 125 0.2 0 0 Delaware Yes 1500 t 7.7 NA NA Georgia No 4086 1.9 0 0 Idaho No 887 2.4 0 0 Maine Yes 1157' 3.8 NA NA Massachusetts No 250 t 0.2 0 0 Michigan No 10 0.004 0 0 Minnesota Yes 3603* 2.8 581' 16 Mississippi Yes 708* 0.9 123' 17 Nebraska No 42 0.09 0 0 Nevada No 204 t 0.4 0 0 New Hampshire Yes 1125 3.6 165 * 15 Rhode Island No 800* 0.32 0 0 South Carolina No 2012 2.0 0 0 South Dakota No 49 0.2 0 0 Vermont Yes 309 2.1 160' 52 West Virginia Yes 164 0.4 5 t 3 Wisconsin Yes 4302 3.1 262 6 Total 10 states 24,939 ... 2102 ...

*Source for state's child and adolescent population is Annie E. Casey Foundation. 36 TEFRA indicates Tax Equity and Fiscal Responsibility Act; NA, not available. These states reported that children with mental health disorders do qualify under TEFRA, but no data was available on the number of children with mental health disabilities. t Estimated. ~2000 statistics.

materials to describe the option to families. The materials were developed either by the state or by parent organizations such as Family Voices or the Federation of Families for Children's Mental Health. Several states had placed information developed for the general public on a Web page. We found that 4 of the 5 states with the largest TEFRA enrollments had materials for parents.

State officials speculate that TEFRA might reduce parental relinquishment of custody to gain Medicaid coverage

A GAO study and other studies have found that some parents of children with serious emotional 28 30 disturbancerelinquishcustodyforthesolepurposeofgainingmentalhealthservices.- Toexamine


this issue, the survey asked about the effect of TEFRA on custody relinquishment. Officials in 7 of the 10 states that qualify these children for TEFRA responded that it was their impression that availability of the option has reduced the number of parents who relinquish custody of their children to child welfare departments and juvenile justice systems.

Discussion

Fewer states allow children to qualify for TEFRA on the basis of a mental health disability than on the basis of physical or developmental disabilities. In practice, despite federal rules that prohibit selection by type of disability, children with mental health disorders are not able to participate in Medicaid through the option in half the states that have TEFRA.

The proportion of children qualifying for Medicaid through TEFRA varied widely, with no ap- parent relation to a state's child and adolescent population. Between 3% and 52% of children on TEFRA have such a disorder in the 10 states that allow children with serious mental health disorders to qualify because of that disability. The 13% of children on TEFRA with serious disorders found in an earlier Minnesota study falls within the range found in this study. Part of the variation may be explained by the availability of other Medicaid eligibility categories and programs in the states. Several states indicated that children with physical and developmental disabilities might also gain Medicaid services through home- and community-based waivers. Other states responded that children with high healthcare costs whose family incomes are modest might qualify under Medicaid's medically needy category in which individuals qualify for Medicaid after the countable income is adjusted for medical expenses. More research is needed to understand how access to TEFRA differs based on the availability of other public programs and options such as the "medically needy" option, Medicaid coverage expansions, and state-funded insurance mandates.

Implications for Behavioral Health Services

Twenty years ago, Congress created the TEFRA option to allow parents to care for children with severe disabilities and high healthcare costs in their home, rather than having to keep them in medical institutions to qualify for Medicaid. This study found that approximately 25,000 children with severe disabilities gained access to Medicaid coverage through this option in 2001. The lack of access to TEFRA for children with mental health disabilities is a concern because these children have fewer alternative ways to gain Medicaid eligibility and access to its broader coverage of mental health rehabilitation and supportive services. Significantly, there is a disparity in access to Medicaid between developmental disabilities and mental health disabilities. Forty-nine states have adopted home- and community-based services waivers that target children with developmental disabilities, yet only 4 states (Indiana, Kansas, New York, and Vermont) currently have home- and community- based services waivers for children with mental health disorders. 37

The study's findings also suggest that states can increase access to Medicaid and the intensive services for children with severe disabilities that they cover by revising their TEFRA rules. Adding language that clarifies that a psychiatric hospital is a qualified medical institution under the rule would allow children with mental health disorders to qualify in the remaining half of states with TEFRA and would expand the number of children with Medicaid coverage. States that are interested in increasing access to intensive services for children with severe disabilities might consider selecting the TEFRA option. This broader adoption and improved implementation of TEFRA could reach more children, especially those with mental health needs.

To address states' concerns about the impact of TEFRA on their Medicaid budgets, additional research is needed to increase the understanding of the characteristics of children who currently qualify for Medicaid through TEFRA including the types of qualifying disabilities, length of time o n TEFRA, primary insurance coverage, a child's total healthcare costs, the proportion of a child's


healthcare costs paid for by Medicaid, and what happens to children who lose TEFRA. The Min- nesota study finding that TEFRA plays a supplementary, rather than a primary, insurance role has implications for states concerned about the option's impact on Medicaid expenditures.

A second area for additional research is whether the availability of TEFRA and other public insurance programs reduces the use of child welfare and juvenile justice programs and therefore reduces the burden on states resources. Anecdotal information collected in this survey indicates that access to mental health services through TEFRA might prevent deterioration in some children that leads to these placements, Data suggest that children with serious mental disorders frequently come into juvenile justice and child welfare and can incur significant costs to the state. Seventy-three percent of children identified as seriously emotionally disturbed by schools are arrested within 5 years of graduating or dropping out of school, and more than 66% of youth in juvenile justice have a mental disorder with impairment. 38'39 In addition, a high percentage of children in the care of child welfare agencies have moderate to severe mental disorders. 4°'41

A third area to examine is how families with incomes above Medicaid eligibility limits learn about the availability of TEFRA for children with serious emotional disturbance. The study's findings indicate that the availability of written materials might impact the number of children on TEFRA. We found that only half of the states had educational materials to describe the option to families and that 4 of the 5 states with the largest TEFRA enrollments had materials for parents. Further study is needed to understand the impact that state outreach efforts, state employees' knowledge of the program, and the availability of materials on the program have in reaching a population that is unlikely to consider that their children could qualify for public programs.

TEFRA is one of a few avenues for states to extend Medicaid eligibility to children with specialized and costly healthcare needs who are poorly served by commercial insurance benefits. The findings of this study suggest that changes in state TEFRA rules could increase the number of children with serious emotional disturbance who gain Medicaid eligibility through this option.

Acknowledgments This work was supported by the WT Grant Foundation. The research was also supported in

part by the Substance Abuse and Mental Health Services Administration under grant number 00M00730601D. The views expressed in the article are those of the authors and do not necessarily represent the views of the US Department of Health and Human Services.

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the tefra medicaid eligibility option for children with severe disabilities: a national study

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