Variations in State-Level Definitions: Children with Special Health Care Needs

Transcription

1 Researh Artiles Variations in State-Level Definitions: Children with Speial Health Care Needs Nathaniel S. Beers, MD, MPA a,, Alexa Kemeny, MD Lon Sherritt, MPH Judith S. Palfrey, MD, SYNOPSIS Multiple agenies at the federal and state level provide for hildren with speial health are needs (CSHCN), with variation in eligiility riteria. Epidemiologial studies show that 3.8% 32% of hildren ould e lassified as hildren with speial health are needs, depending on the definition and method of determination used. Ojetives. To determine the extent of variation etween definitions used and funding y Supplemental Seurity Inome (SSI), Title V, and Mediaid for CSHCN. Methods. Statistis on hildren reeiving SSI and the amount of funding were otained from the SSI wesite. This was ompared to information on Title V hildren from the Maternal and Child Health Bureau (MCHB) wesite and eligiility definitions pulished y the Institute of Child Health Poliy in Gainesville, Florida. Mediaid definitions were otained through interviews with state Mediaid agenies and onfirmed with state regulations. Results. The population enrolled in SSI has varied with alterations in eligiility riteria. The numer of hildren enrolled in SSI and the amount of funding per hild in eah state orrelate with the state poverty rate (r 0.56, p ; r 0.44, p 0.001). Enrollment in Title V does not orrelate with state poverty rates (r 0.16, p 0.25). Title V definitions vary widely among states, ut there was no orrelation etween the numer of hildren served or amount of funding per hild and the type of definition used (Z 0.12, p 0.91; Z 0.59, p 0.55). State Mediaid agenies rarely define CSHCN. Conlusions. There is signifiant variation in definitions used y agenies serving CSHCN. Agenies need to e more expliit with eligiility riteria so the definitions are logial to those making referrals for servies. a Children s National Medial Center, The George Washington University Shool of Mediine and Health Sienes, Washington, DC The Children s Hospital Boston, Boston, MA Harvard Medial Shool, Boston, MA Address orrespondene to: Nathaniel S. Beers, MD, MPA, Children s National Medial Center, Div. of General Pediatris, 111 Mihigan Ave. NW, Washington, DC 20010; tel ; fax ; [email protected] > Assoiation of Shools of Puli Health 434

2 Variations in State-Level Definitions: Children with Speial Health Care Needs 435 Sustantial numers of hildren with signifiant health prolems live in our ommunities, and eause their needs are different from those of their healthier peers, they present hallenges to the institutions and agenies medial, eduational, soial, finanial involved in their are. These hildren with speial health are needs may require frequent hospitalizations or intensive at-home nursing are in addition to standard preventive servies. They may also require tehnologial aids suh as wheelhairs, renal dialysis, or portale oxygen. They may need speial eduation and aess to psyhologial or psyhiatri are, as well. Around the United States, there is enormous variation in the way the population of hildren with speial health are needs is ategorized. Pratitioners, poliymakers, and aademis have deated for the past two deades how puli and private agenies should identify and lassify hildren with hroni illnesses and disailities. In the urrent health are environment, definitions and identifiers determine who reeives what servie, where it is delivered, when it is provided, who renders it, and who pays for it. Despite these theoretial disussions, state agenies and private health are funders ontinue either to ignore the definitional issue or to use a wide variety of shemes, with little onsensus aross the states or among agenies within states. This artile explores the reasons for the present state-level variations and provides a data-ased analysis of urrent federal praties in defining hildren with speial health are needs. We riefly disuss theoretial approahes to defining the population of hildren with hroni illness and disaility and delineate the urrent operating definitions of the Soial Seurity Administration, the Maternal and Child Health Bureau, and Mediaid. We then present data on hildren now meeting the definitional riteria of those three puli agenies and disuss the impliations of the urrent situation. Theoretial approahes The ategorial approah. One way to define a population of hildren with speial health are needs is to start with a list of health onditions presumed to e of a hroni nature and assume that hildren who arry these diagnoses are in need of speial attention. This is the method traditionally used y epidemiologists. In 1984, Gortmaker and Sappenfeld reated suh a list for their lassi study on the prevalene of hroni onditions in hildren. 1 The most ommonly used urrent soure for suh lists is the National Health Interview Survey (NHIS), a nationwide survey of the ivilian noninstitutionalized population onduted y interview personnel of the National Center for Health Statistis at the Centers for Disease Control and Prevention. 2 Another approah to ategorizing hildren is to look at their utilization of servies. An example of this is the lassifiation system developed y the National Assoiation of Children s Hospitals and Related Institutions (NACHRI) for use as a researh tool, primarily for ost analysis. 3 It is essentially a diagnosis-ased system (ategorial), ut it inorporates measures aimed at assessing the funtional impat of disease onditions on individual hildren and groups. It also allows for the inlusion of information aout the at risk status of hildren and families. Non-ategorial or funtional approahes. Leading researhers advoating a non-ategorial or funtional approah to defining hildren with speial health are needs argue that suh a strategy is valuale eause it fouses on the hild, not on the disease. 4,5 This approah was pioneered y Pless and Pinkerton 6 and developed y Ruth Stein and olleagues. 4 They propose that ongoing health onditions, y definition: (1) have a iologi, psyhologi, or ognitive asis; (2 ) have lasted or are virtually ertain to last for at least one year; and (3 ) have produed one or more of the following sequelae: a. Limitation of funtion, ativities, or soial role in omparison with healthy age peers in the general areas of physial, ognitive, emotional, and soial growth and development.. Dependeny on one of the following to ompensate for or minimize limitation of funtion, ativities, or soial role: mediation, speial diet, medial tehnology, assistive devies, or personal assistane;. A need for medial are or related servies, psyhologi servies, or eduational servies over and aove the usual for the hild s age; for speial ongoing treatments, interventions, or aommodations at home or in shool. 4 Federal and state definitions Three puli agenies have major responsiility at the national level for assuring the provision of health and soial servies or funds to hildren with hroni illness and disaility: the Soial Seurity Administration (SSA), the Maternal and Child Health Bureau (MCHB), and Mediaid. Eah ageny approahes the definition of hildren with hroni illness ased on oth historial preedent and urrent reality. In addition, inome eligiility an e used as a qualifier for these servies or funds. In the real world, the definitional hoies of

3 436 Researh Artiles agenies reflet the issues that are highlighted in the theoretial ontroversies regarding ategorial, nonategorial, and utilization-ased funding disussed aove. At the state level, there are varying interpretations and appliations of the federal definitions whih depend on federal/state arrangements, prior experiene, and any reent state-level poliy deisions. We will outline the urrent status of definitions for eah of these puli agenies, presenting data pertinent to the partiular ageny s harge in graphi form. Soial Seurity Administration. In 1972, Congress enated Title XVI of the Soial Seurity At to supply families raising a hild with a disaility an extra stipend of Supplemental Seurity Inome (SSI) to offset their added expenses. 7 Disaility determination for hildren was originally ased on the adult model: A hild was eligile for SSI if the hild had a disaility that lasted or was expeted to last 12 months and either aused the hild to e unale to engage in sustantial gainful ativity or was in and of itself a severe impairment. 8 The severity of a hild s impairment had to meet or equal the severity of the listing for adults. Unlike the riterion for adults, however, funtional status did not need to e determined for a hild. The family of the hild also had to meet their state s inome riteria for the hild to e eligile for SSI enefits. From its ineption until the early 1980s, SSI payments for hildren made up a very small proportion of the total dollars afforded to people with disailities. For example, when SSI was implemented in 1974, individuals 0 18 years of age made up only 1.8% of the total of SSI reipients. 9 Through the 1980s, hildren aounted for 4% 6% of all SSI reipients. 9 The disaility ommunity was onerned that the eligiility riteria made it too diffiult for hildren to e deemed eligile. In Feruary 1990, the U.S. Supreme Court found that using the medial listing for adults to determine disaility in hildren did not meet the omparale severity standard estalished in Title XVI of the Soial Seurity At. 10 The Sullivan v Zeley deision was ased on the fat that the determination proess made no attempt to desrie the funtional status of hildren. Although determining voational status for hildren is learly inappropriate, the Supreme Court felt that there should e some method of inluding an assessment of the funtional status of hildren. 10 Following Zeley, SSI determinations for hildren were inreasingly made on the asis of funtional status. Conurrently, SSA developed mental health guidelines for eligiility, whih allowed determinations ased on mental health impairments. 10 As a result of the preipitous inrease in the numer of hildren served after the Zeley deision and the inlusion of the mental health guidelines, Congress passed the 1996 Personal Responsiility and Work Opportunity Reoniliation At (PRWORA), whih tightened the riteria for SSI eligiility for hildren. The law urrently states: An individual under the age of 18 shall e onsidered disaled for the purposes of this title if that individual has a medially determinale physial or mental impairment, whih results in marked and severe funtional limitations, and whih an e expeted to result in death or whih has lasted or an e expeted to last for a ontinuous period of not less than 12 months. 8 Maternal and Child Health Bureau. The Soial Seurity At of 1935 inluded a setion speifially dediated to hildren. Title V of the At laid out provisions for the health are of women and hildren and for servies for rippled hildren. Speaking of a regiment of hildren whose aute needs ould not e ignored, a report y the U.S. Committee on Eonomi Seurity doumented that servies for hildren with hroni illnesses and disailities were laking in many ommunities, partiularly in rural areas. 7,11 Title V was estalished as an ongoing authority of the federal government in reognition of the need for a federal role in assuring the health of the nation s maternal and hild populations. The federal funds were to e administered as grants to the states, with states having autonomy over various aspets of the programs. One of these aspets for the Servies to Crippled Children was the definition of rippled hildren. Eah state was to produe its own set of riteria for designating the group of hildren to reeive servies through Title V. Initially, many of the states speified hildren with orthopedi onditions as rippled hildren. Over the years, the federal Title V Maternal and Child Health administration reated a series of ategorial programs in response to a variety of disparate health and developmental needs of hildren. To stimulate oth servie delivery and aademi interest in the identified prolems, targeted grant funding was made availale for ategorial onditions suh as rheumati heart disease, ereral palsy, and various ongenital anomalies. States responded individually and differently to the federal soliitations, reeiving varying amounts of funding for different ategories of onditions. The result has een a omplex quilt of lassifiations y state. In 1998, the federal Maternal and Child Health Bureau leadership adopted a more uniform and o-

4 Variations in State-Level Definitions: Children with Speial Health Care Needs 437 herent approah to the system of identifiation. Previously, Nelson and Stein oined the phrase hildren with speial health are needs or CSHCN. 12 The 1998 MCHB definition is: Children with speial health are needs are those who have or are at inreased risk for a hroni physial, developmental, ehavioral, or emotional ondition and who also require health and related servies of a type or amount eyond that required y hildren generally. 13 Mediaid. Funded y oth the federal government and the states, Mediaid is a state-administered health insurane provider for low-inome individuals. While the fundamental mission of the Mediaid program is not the provision of servie to hildren with speial health are needs, Mediaid plays a vital role in the delivery of health servies for these hildren. Children with speial health are needs are more likely to e poor than are hildren without suh health are prolems. 14 In addition, Mediaid programs in many states have een given the responsiility for providing gap funding and/or wraparound servies for non-poor hildren whose insurane ompanies have reahed their aps or lifetime limits. Children in this situation most often are those with very omplex medial situations. Mediaid is also a ritial player for hildren with speial health are needs eause in most states Mediaid offers a very omprehensive array of servies for this population. These servies may inlude home nursing, physial, oupational, and speeh therapy, and ounseling as well as primary and speialty are, outpatient, and inpatient are. Katie Bekett Waivers, also known as Home and Community-Based Programs, and intermediate are faility programs have een the major programs in state Mediaid agenies to provide for hildren with speial health are needs. In reent years, Mediaid has also egun to fund health-related servies provided to hildren in speial eduation programs in shools. 15 Mediaid programs in general have not reated definitions for hildren with speial health are needs. Rather, they have tended to rely on the definitions proposed y other agenies suh as SSI, Title V, and Departments of Mental Retardation. In many instanes, state Mediaid departments have not onsidered hildren with speial needs as a separate ategory at all. This lak of ategorization does not present a prolem for families or providers under fee-for-servie planning, ut has raised serious onerns as many state Mediaid programs are onverting to managed are, prepaid, and/or apitated arrangements. The pediatri ommunity worries that in the asene of a speial designation, hildren with speial health are needs will no longer have aess to the range of servies they need under prepaid plans. 16 However, the Centers for Mediare and Mediaid Servies (CMS) are developing measures to inlude in the Health Plan Employer Data Information Set (HEDIS) to more losely monitor how plans and states are meeting the needs of hildren with speial needs who are eligile for Mediaid servies. While many state Mediaid programs have not diretly addressed the issue of identifying hildren with speial needs at the individual linial level, the Mediaid programs have used aggregate data to get a handle on their high utilizers, ased on the data they have availale from their illing systems. Analyses of this information often reveal groups of hildren with omplex medial needs who are sustantially engaged with the medial are system. For example, one study of pediatri Mediaid reipients in the state of Washington used hroni disease ategories to etter understand the distriution of payments aross the population. 17 The authors found hildren with the seleted onditions inurred osts ranging from 2.5 to 20 times those of other hildren in the Mediaid program. Reognition of these differenes has raised the saliene of looking at the definitional issue. OBJECTIVES Given the diverse approahes to the ategorization of hildren with speial health are needs, our group posed the following questions: 1. Aross the United States, how are the SSI, Title V, and Mediaid programs identifying hildren with speial health are needs? Are the numers omparale? 2. Within the 50 states and the Distrit of Columia, what is the pattern of funding for the hildren identified as eligile under the various disaility definitions? 3. Given the disretion of states to make their own determination of eligiility under Title V, how frequently are ategorial and funtional methods used? Is there any orrelation etween ategorization methodology and levels of funding for hildren overed under Title V? 4. Based on these analyses, how do the numers of hildren lassified y the state-level programs ompare to the numers of hildren with speial health are needs reported in various epidemiologial studies? To understand the omplexities of the definitions used y states and to proe for answers to these ques-

5 438 Researh Artiles tions, we set out to ollate and analyze availale statelevel data aout hild eligiility and aout the numer of hildren lassified and funded under the three programs. METHODS For all analyses, we used U.S. Census Bureau estimates for state population of hildren younger than 18 years of age and hild poverty rates. The population data omes from the year 2000 Current Population Survey. To inrease the preision of the Current Population Survey estimates for hild poverty rates, three-year average ( ) rates were used. For oth the SSI and Title V analysis, we report the median, minimum, and maximum values for perentage of eligile reipients and average payments or spending, sine these data were not normally distriuted y state. In addition, non-parametri measures of assoiation and models were used (Spearmans rho, Mann-Whitney U, and logisti regression). We onsidered assoiations to e statistially signifiant at the p 0.05 level. SSI analyses All states apply a standard, federally determined SSI definition with variation y state in inome eligiility. To assess the numer of hildren identified as eligile and served y the urrent SSI regulations, we otained data from the most reent Soial Seurity Administration Annual Statistial Report For omparison purposes, we determined the perentage of hildren reeiving SSI y dividing the reported numer of hildren on SSI in eah state y the estimated numer of hildren in that state. For eah state, we estimated the average per-hild annual payment as twelve times the total reported federal payments for the month of Deemer 1999 divided y the numer of reipients in the state. We report Spearman orrelation oeffiients for ivariate rank-order orrelations. Title V analyses Information on the numer of hildren served and the dollars expended on them y state were otained from the Title V Information System We Site at: Perentage figures were derived y dividing the numer of hildren served y the state hild population. Although in some states Title V programs over individuals up to age 22, for omparison purposes, we estimated the effet of state population y using age younger than 18 data as the denominator and the availale data from the state for enrollment in the Title V program. Funding figures were determined y dividing the state funding for 1998 (the most reently availale data) y the numer of hildren served y that state. The data for eligiility riteria for Title V is ased on the 1999 report of Reiss and Dearholt at the Institute of Child Health Poliy in Gainesville, Florida. 18 The medial eligiility riteria for eah state were independently reviewed y two of the study investigators (NB and LS). An independent third-party reviewer settled any disrepanies (JSP). The eligiility riteria for eah state were lassified as primarily funtional or primarily ategorial. Susequently, the lists of eligile onditions in states with primarily ategorial definitions were lassified as omprehensive or idiosynrati for states previously determined to e primarily ategorial. The list of eligile onditions in states with primary funtional definitions were lassified as omprehensive or not listed with the exeption of one state, Alaama, whih had an idiosynrati list. Eah state s exlusion riteria were reviewed y the same methodology as previously mentioned. Exlusion riteria were lassified in one of three ategories, yes, no, or none speified. Based on the federal goals of the programs, exlusion riteria of aute onditions, organ transplants, general primary are servies, and ustodial are were lassified as no exlusions. States with exlusion riteria eyond these exemptions were lassified as yes exlusions. Mental health ondition exlusions were addressed under a separate heading. Thus, if the only additional exlusions eyond the exemptions were for mental health onditions, the state was lassified as no exlusions. States with no onditions listed were lassified as none speified. Mental health onditions had the same method of review. The definition of eligiility and the list of eligile onditions for eah state were reviewed to determine if mental health onditions were overed y the state. The exlusion riteria were reviewed to determine whether the states exluded mental health onditions. Eah state was lassified as to whether it inluded mental health onditions y ategorizing as yes, no, or no information. States speifying overage only for medial onditions related to mental health onditions were ategorized as no. Mann-Whitney U, inomial, and multinomial logisti regression were used to identify potential differenes in perentage of hildren served and state perhild spending for states with ategorial vs. funtional eligiility definitions, and omprehensive vs. idiosynrati su-definitions. The potential onfounding effet of state hild poverty rate was assessed in the regression models.

6 Variations in State-Level Definitions: Children with Speial Health Care Needs 439 Mediaid analyses To our knowledge, there is no ompendium that pulls together urrent information aout how eah state s Mediaid department defines hildren with disaility. We, therefore, gathered information from the states in a primary fashion. Three steps were taken to determine the types of definitions used y state Mediaid agenies to qualify hildren in Mediaid for different levels of servie: (1) We alled the Mediaid diretor s offie in eah state to determine whether the state had an overall system for defining hildren with speial health are needs or other servies for hildren with speial health are needs, and if so, how they determined whih hildren would e eligile. (2 ) We reviewed oth the federal waivers for home and ommunity-ased programs and the requirements for intermediate are failities, sine hildren who are eligile for these programs an aess sustantial Mediaid funding. (3 ) We onfirmed the statements y the Mediaid offie y reviewing the regulations at eah state s Mediaid wesite. Only four states (Illinois, Maryland, Nevada, and West Virginia) ould not e onfirmed y reviewing the regulations at the state wesite. For one state (Maine), additional information was found in the state wesite that had not een dislosed in disussions with the Mediaid offie. Methodologi limitations and onstraints on inferene There are several limitations reduing the aility to generalize the findings here. The seondary data sets lead to usage of different denominators. States use different ut-offs for the upper age overed under Title V, whih yields varying potential populations for enrollment. The years of the data sets availale are not the same, ut the losest possile were used to inrease the omparaility etween different populations. All of these variations were noted in the methodology. Any estimation or adjustments are also noted. To make onlusions aout the Title V data, we designed a proess to reah the most standard onlusions possile. However, due to the reliane on judgements y individuals with different vantage points, some disrepany remains. Others looking at the same regulations may ome to different onlusions. In addition, oth Title V and Mediaid are moving targets, with hanges in the regulations that may not e aounted for due to a limited time frame of evaluation. Reognizing the pilot programs in states allowed inlusion of some definitions that might not e onsidered poliy in the regulations. The State Child Health Insurane Programs (SCHIP) were not inluded due to the large variations from Mediaid for some states and the lak of staility of the definitions for the programs. The primary data for Mediaid also relied on the knowledge of the Diretor of Mediaid or their representative for hildren s issues. The onfirmation of the information via the wesites was an attempt to ath any errors, ut may not have aptured all of the knowledge errors due to the magnitude of the Mediaid programs. RESULTS Pattern of identifiation and funding (Questions 1 and 2) Figure 1 demonstrates graphially the hanges that have ourred in SSI eligiility sine its ineption. The profound effets of the Zeley deision and introdution of the mental health guidelines are seen in the striking inreases that ourred in the time period. The susequent slight downturn in the numers of hildren qualifying for SSI is apparent as of the new federal standards implemented in Tale 1 presents state eligiility for SSI and Title V. The median perentage of hildren identified as meeting SSI riteria was 1.06%. There was some variaility y state in the perentages of hildren enrolled in SSI, whih ranged from a low of 0.39% in Hawaii to a high of 3.23% in the Distrit of Columia. An analysis of state poverty level as a possile ontriutor to the variaility revealed that the state perentage of hildren in poverty was positively assoiated with the perentage of hildren reeiving SSI (r 0.56, p for Census 100% poverty level). In 1998, Perrin et al. also found a similar relationship etween SSI enrollment and poverty levels. 19 The median annual U.S. payment for SSI was $5,544. There was omparatively little variation in this amount from state to state. The minimum value was $5,016 and the maximum value was $6,696. The size of the state population was posi- Figure 1. Numer of SSI reipients younger than age 18, y year: Numer of reipients (thousands) Zeley/ MH guidelines New SSI definition Year

7 440 Researh Artiles Tale 1. Numer of hildren younger than age 18, perentage SSI reipients, perentage of Title V reipients, and perent of hildren elow the 100% federal poverty level Children Perent elow younger than Perent reeiving Perent reeiving 100% federal State age 18 (000s) SSI Title V poverty level Alaama 1, Alaska Arizona 1, Arkansas California 8, Colorado 1, Connetiut Delaware Distrit of Columia Florida 3, Georgia 2, Hawaii Idaho Illinois 3, Indiana 1, Iowa Kansas Kentuky Louisiana 1, Maine Maryland 1, Massahusetts 1, Mihigan 2, Minnesota 1, Mississippi Missouri 1, Montana Neraska Nevada New Hampshire New Jersey 2, New Mexio New York 4, North Carolina 1, North Dakota Ohio 2, Oklahoma Oregon Pennsylvania 2, Rhode Island South Carolina South Dakota Tennessee 1, Texas 5, Utah Vermont Virginia 1, Washington 1, West Virginia Wisonsin 1, Wyoming Total U.S. 70,

8 Variations in State-Level Definitions: Children with Speial Health Care Needs 441 tively assoiated with SSI spending. More populous states spent more per hild than less populous states (r 0.44, p 0.001). For Title V, the median perentage of eligile hildren with speial health are needs was 1.12%, ranging from 0.14% in Wisonsin to 3.33% in North Carolina. Unlike the situation with SSI, hild poverty rate did not play an explanatory role in the variaility of perentage of hildren y state identified as eligile for Title V (r 0.16, p 0.25), while there was some evidene of a negative assoiation with state hild population (r 0.25, p 0.08). In omparison with the SSI payments, there was onsiderale variaility in state spending y Title V. The median state spending per hild per year in 1998 was $939, with a minimum of $127 in New Jersey and a maximum of $6,863 in California. There was some evidene that Title V spending per hild was assoiated with more populous states (r 0.275, p 0.051), ut hild poverty rate was not assoiated (r 0.20, p 0.16). Figure 2 is a graphi display of the estimated annual per-hild expenditure omparing Title V spending and SSI payments, with states ranked y average per-hild Title V spending. The per apita amounts are more onsistent for SSI than they are for Title V aross the states, whih is not surprising given the uniform federal eligiility definitions of SSI. For SSI, the mean annual per-hild expenditure y state was $5,598 with a standard deviation of $316. In ontrast, for state administered Title V spending, the mean annual per-hild spending y state was $1,214 with a standard deviation of $1,210. The differene in variane is highly signifiant (Levene s test, F 15.14, p ). Tale 2 is a report of our review of the state Mediaid programs eligiility riteria for hildren with speial health are needs. All the states had speifi qualifiations for intermediate are failities ased on level of need for the mentally retarded or developmentally disaled population. The definitions used for the eligiility for intermediate are failities have little variation among states and rely heavily on the Amerian Assoiation of Mental Retardation (AAMR) definition of mental retardation and developmental disailities. In addition to the intermediate are failities, all states exept Arizona have highly speialized Home and Community-Based Waivers (also known as the Katie Bekett Waiver ) for provision of servies in the home or ommunity as opposed to a hospital or nursingare faility. These waivers vary some in the hild eligiility, ut have greater variaility in the types of are provided. Beyond this, families have the option of spending down their resoures in order to make their hild eligile for servies in Mediaid. Figure 2. Estimated average annual per-hild SSI payments and Title V spending y state for CSHCN 8000 Average annual per hild payments, spending SSI Title V 0 California New York Wisonsin West Virginia Utah Florida Distrit of Columia Alaska Indiana Georgia South Carolina Maine Tennesee Massahusetts Mississippi Mihigan Missouri Texas Rhode Island Louisiana Montana Virginia Ohio Illinois Minnesota Idaho Hawaii North Carolina Iowa Colorado Alaama Wyoming New Hampshire Connetiut North Dakota Kentuky Washington Maryland Neraska Arizona Oregon Vermont New Mexio Pennsylvania Arkansas Kansas Oklahoma Nevada South Dakota Delaware New Jersey US State

9 442 Researh Artiles Tale 2. Mediaid Type of definition used SSI Title V MR/DD Funtional assessment Categorial assessment No additional servies eyond Home and Community Based Waiver and Intermediate Care Faility States DC, MA AR, MI CO, HI, IL, ME, OR, WI AZ, CO, HI, IN, MA, NH, NV, OR, WA, WI GA, IN, NV, TX AL, AK, CA, CT, DE, FL, ID, IA, KS, KY, LA, MN, MS, MO, MT, NE, NJ, NM, NY, NC, ND, OH, OK, RI, SC, SD, TN, UT, VT, VA, WV, WY MR/DD = mental retardation/developmental disailities Aside from these two programs, thirty-two states offer no additional servies under Mediaid for hildren with speial health are needs. Eighteen states and the Distrit of Columia were found to have a variety of additional programs and definitions (outlined in Tale 2). In some ases, the definition is used simply to provide a mehanism to identify hildren eligile for supplemental funding for medial servies. Some states are also using more than one type of definition ased on the type of servies or a multilevel determination proess, suh as a funtional assessment of a hild with a speifi ondition in order to reeive servies. The Distrit of Columia and Massahusetts eah use the SSI definition as a mehanism for identifying hildren with speial needs. Both Arkansas and Mihigan have merged the Mediaid and Title V servies and are using their Title V definition to determine eligiility for additional servies. Several states are using developmental disailities and/or mental retardation definitions from other agenies, suh as departments of mental retardation or health, to determine eligiility. Four states have servies offered to hildren with a speifi ondition, suh as lindness (Texas). Beause so few state Mediaid programs atually ategorize hildren with speial health are needs, it was not possile to derive a omprehensive piture of Mediaid funding for hildren with speial health are needs. Analysis of ategorial and non-ategorial approahes in Title V (Question 3) In Tale 3, we have presented the analysis of the ways in whih state Title V programs have used their disre- tion to define hildren with speial health are needs. There is tremendous variaility aross the nation. We have divided the states into a ategorial group and a funtional group, and then have sudivided them y other attriutes of their definitional proess. We have arrayed the ategorial states y whether they provided servies ased on a omprehensive list of onditions or one that was more idiosynrati. A omprehensive list would inlude at least a ompilation of onditions, suh as ardia, ongenital malformations, respiratory, orthopedi, neurologial, gastrointestinal, renal, endorine, and hematologial. Fifteen states do indiate y name that they speifially provide servies for hildren with almost all of the disailities and hroni illnesses that have een introdued as ategorial programs over the 65-year history of Title V. An additional 14 states and the Distrit of Columia use a ondition list, ut their lists do not inlude many onditions generally overed y other states. With regard to the states using primarily a funtional definition, the definition generally inludes statements aout a omprehensive evaluation of the hild s aility to partiipate in daily events. Twenty-one states use a funtional approah, ut only thirteen of these rely on the funtional definition exlusively. The other states employ language to indiate that they over onditions suh as... and then go on to provide a relatively detailed and omprehensive listing of onditions. Even the states with a primary funtional approah may have language indiating that there are small ategorial programs under speial additional grants or arrangements with other state agenies. The vast majority of the states has language that exludes aute onditions, general primary are servies, ustodial are, organ transplantation, and/or mental health. Tale 3 also demonstrates there are many modifiations of the riteria in the states. The states listed in Tale 3 as having additional exlusions have language that speifies individual onditions that will not qualify for servies under Title V eyond the aute onditions, primary are, ustodial are, organ transplantation, and mental health. An area of wide disrepany among states Title V programs is their inlusion or exlusion of mental and ehavioral disorders. Tale 3 lists the states that speifially mention mental retardation, developmental delay, mental illness, and/or emotional/ehavioral disorders in their eligiility riteria. While only thirteen states speifially inlude mental health disorders in their inlusion riteria, there are twenty-three states speifially exluding mental health disorders. Two of the states that exlude mental health, Maryland and New Hampshire, provide for medial servies assoi-

10 Variations in State-Level Definitions: Children with Speial Health Care Needs 443 Tale 3. Title V definition approahes y state Categorial Funtional Mental health State Comprehensive Idiosynrati Comprehensive Idiosynrati overage Exlusions Alaama a X Alaska X Arizona X Arkansas X California X Colorado X Connetiut X Delaware X Distrit of Columia X Florida X Georgia X Hawaii X Idaho X Illinois X Indiana X No Iowa X Kansas X Kentuky X Louisiana X Maine X Maryland X d No Massahusetts X No Mihigan X No Minnesota X No Mississippi X Missouri X Montana X Neraska X No Nevada X New Hampshire X d New Jersey X No New Mexio X New York e X e No North Carolina X No North Dakota X Ohio X Oklahoma X Oregon X Pennsylvania X Rhode Island X South Carolina X South Dakota X Tennessee X Texas X Utah X Vermont X Virginia X Washington X West Virginia X Wisonsin X No Wyoming X a An idiosynrati list of eligile onditions is listed for Alaama. Not speified. Inludes mental health servies. d Covers medial servies for mental health onditions ut not mental health servies. e Eligiility varies y ounty for New York.

11 444 Researh Artiles ated with mental health disorders ut not mental health servies, and thus we plaed them in the exluded ategory. Fourteen states provided no information on inlusion or exlusion of mental health disorders. The perentage of hildren reeiving Title V spending was not assoiated with the type of definition used (funtional vs. ategorial, Wiloxon rank sum Z 0.12, p 0.91). State Title V spending was also not assoiated with the type of definition (funtional vs. ategorial, Wiloxon rank sum Z 0.59, p 0.55). Logisti regression analysis looking at the potential onfounding effet of state hild poverty rate did not yield a signifiant model for either of these two measures. Using data from large-sale epidemiologial studies, there are three naturally ourring groups ased on the types of definitions used (see Figure 3). Group 1 (approximately 30% of the hildhood population) is omprised of hildren who meet any onditionspeifi riterion at any time on standard instruments. 21,22 Group 2 inludes hildren who meet the riteria of the MCHB definition or are identified y systems that look at utilization, suh as the NACHRI system. In general, hildren in Group 2 are defined on the asis of a funtional statement suh as require extra servies. These types of definitions yield 13% 24% of hildren. 1,14,23 25 (Newahek PW. reported unpulished data from State and Loal Area Integrated Telephone Survey of CSHCN [ited 2003 Jul 17]. Availale from: URL: /major/slaits/shn.htm.) Group 3 is a muh more rigorously defined group, namely, those hildren with onditions limiting their funtion in daily living ativities. This definition is more losely aligned with the standard adult definitions, suh as those that appear in the International Classifiation of Funtioning, Disaili- Figure 3. Prevalene of hildren with speial health are needs y various definitions 6% 18% 30% Moderate to severe funtional liminations MCHB definition Any ourrene ties and Health. 26 There is often a time modifier as well (suh as three months or one year). These stringent riteria lead to a prevalene on the order of 5% 6% Most of the studies generating Group 3 derive from ategorial lists with a funtional modifier. DISCUSSION We hose to look at the lassifiation shemes of SSI and MCHB eause eah of these programs is mandated to provide servies to hildren with speial needs. Comparison of SSI and MCHB eligiility is essentially a omparison of a rigid, federally determined definition with a federally santioned state-y-state disretionary approah. Review of the SSI approah shows that y applying a uniform federal standard, there has een a fairly uniform apture of a population of hildren who are reeiving monthly supplementary inome. By omparison, the size and omposition of the populations of hildren served y the state MCHB programs vary signifiantly. Logially, SSI spending per hild has a relatively tight distriution, sine it is federally funded. Sine Title V is a lok grant, there is signifiant variation of per-hild spending etween states, depending on the numer of hildren the state hooses to enroll in Title V. We also examined state Mediaid programs around the ountry. At the federal level, Mediaid has not hosen to issue any reommendations aout the lassifiation of hildren with speial health are needs. States, therefore, are making their own hoies as to how to deal with lassifiation. Some states have orrowed from SSI or Title V. Some are using the definitions of their mental retardation (MR) and developmental disailities (DD) programs. Other state Mediaid offies have not addressed the issue at all. If these states move to managed are arrangements for all hildren, overage for hildren might suffer as this population would then reeive the standard apitation, whih is insuffiient to over all medial are osts. Epidemiologial surveys of nationally seleted random households form the asis for an inreasingly sophistiated and mutually reinforing set of estimations of the size of the population of hildren with speial health are needs. These surveys of hildren with disailities and hroni illness range from 5% to 30%, depending on the definition and the level of funtional impairment speified. Based on these estimates, one would predit that a tight definition that required sustantial impairment would net on the order of 6% of the hild population, as seen in the study y MManus et al. in Approximately 20% of

12 Variations in State-Level Definitions: Children with Speial Health Care Needs 445 the population of hildren live in poverty, so the SSI enrollment of 1.5% is what would e expeted if the eligiility riteria for inome was 100% of the poverty line. However, sine the inome eligiility is up to approximately 250%, 32 the perentage of population enrolled in SSI should e greater y aout two-fold. By omparison, there is an even greater disrepany etween the numer of hildren served through MCHB programs nationwide and the epidemiologial preditions. When Newahek applied the new definition promulgated y the federal MCHB leadership to the National Health Interview Study sample for 1994, he found that approximately 18% of hildren met that definition. 14 The definition is a funtional and servieased one with a less stringent severity requirement than that ontained in the SSI definition. It is partiularly striking, then, that the Title V perentage of hildren served is 1.3%, whih is more than an order of magnitude less than the predited numer. This review has reinfored the notion that definitions an have a profound effet on outome. The SSI story is an example of the way that small hanges in a definition an make signifiant hanges in the funds availale to people with disailities. Reognition of the serious onsequenes of hoosing a partiular definition has led to a general wariness of ategorization. Nonetheless, poliymakers and program developers find themselves stymied when they annot artiulate learly what group or groups of hildren are eing hosen for a partiular intervention. The past 10 years have seen onsiderale movement toward a more useful system of definition. It is eoming lear that the dihotomy etween funtional definition and ategorial lists is artifiial. For pratial purposes, it is helpful to have omponents of oth. The promulgation of the MCHB definition of hildren with speial health are needs in 1998 was an important step toward addressing the onfusion that was apparent in oth the linial and poliy realms. The definition has served to open a wider disussion on the issues and has introdued the non-ategorial dimension into state systems, whih were generally relying on historially generated lists. The MCHB definition still egs the question of operationalizing terms suh as hroni physial ondition, hroni emotional ondition, and so on. The term hildren who require health and related servies of a type or amount eyond that required y hildren generally introdued a useful severity gauge, ut also reated the need for deisions around the definition of health servie and related servie. The proess egun in 1998 is learly not finished. States are amending their Title V definitions and are assessing their Mediaid provisions, partiularly in light of the new State Child Health Insurane Program (SCHIP). There is now useful information from the new SSI experiene. Further, the studies in the field have rought improved larity aout the lassifiation proess. It may e a good time for a new iteration of a standard approah to the lassifiation of hildren with speial health are needs. Based on this review, we offer a series of onsiderations for any group that deides to take this next step. It would e helpful if the next lassifiation projet were arried out aross federal and state agenies so there would e onsisteny of approah in providing servies to hildren with speial health are needs. The aveat to this assertion is that having a variety of definitions may have een protetive for some hildren, allowing them overage y one of the programs when they were exluded y another. It is ritial that any definition e road enough to provide protetion to as many hildren as possile. The value of an interageny approah would e that hildren ould then qualify for multiple servies at one and the various agenies ould have omparale data aout groups of hildren who are their ommon onstitueny. CONCLUSIONS Any new definition should e ased on a set of guiding priniples. The experiene of those who have experimented with different approahes should e onsidered when reating new riteria. Based on this study, we suggest several onsiderations that should e inluded to ensure inlusiveness, auray, and fairness in any definition: 1. Severity of individual onditions. 2. Chroniity of impairment resulting from health onditions. 3. Impat of multisystem involvement. 4. Medial and tehnologial assistane required to maximize and maintain funtional apaity. 5. Psyhologial, developmental, and ehavioral needs and limitations. It is inument upon us to weave these onsiderations into operational definitions for the sake of these hildren and the families, professionals, and ommunities who are for them. As helpful as the MCHB definition has een in moving the proess forward, its lak of speifiity limits its usefulness for defining eligiility. As presented earlier, the epidemiologi studies would suggest that there are really three groups of hildren that are e-

13 446 Researh Artiles ing disussed under the heading of hildren with speial health are needs. These three sugroups may e more helpful as programs look to determine whih hildren they will provide with whih set of servies. While these groups may not e the ultimate reakdown for suh sugroups, we would suggest that a good next step may e to identify eah of these groups y a speifi term so pratitioners and poliymakers ould speak a ommon language when disussing hildren with speial health are needs. Depending on the funding availale for a program and the servies to e provided, agenies are generally fored to use different eligiility riteria. In addition, if multiple agenies are required to ommit to a single definition, it may enourage a more effiient system that may lead to the exlusion of hildren with rare diseases or rare manifestations of more ommon onditions. Certain programs may require a more restritive method of determination, while others an afford to e more inlusive. Fairness ditates the importane of a definition that follows a set of priniples suh as those aove. REFERENCES 1. Gortmaker SL, Sappenfield W. Chroni hildhood disorders: prevalene and impat. Pediatr Clin North Am 1984;31: National Center for Health Statistis. National Health Interview Survey. National Center for Health Statistis, Hyattsville, MD. 3. Muldoon JH, Neff JM, Gay JC. Profiling the health servie needs of populations using diagnosis-ased lassifiation systems. J Amul Care Manage 1997;20(3): Stein RE, Bauman LJ, Westrook LE, Coupey SM, Ireys HT. Framework for identifying hildren who have hroni onditions: the ase for a new definition. J Pediatr 1993;122: Perrin EC, Newahek P, Pless IB, Drotar D, Gortmaker SL, Leventhal J, et al. Issues involved in the definition and lassifiation of hroni health onditions. Pediatris 1993;91: Pless IB, Pinkerton P. Chroni hildhood disorders: promoting patterns of adjustment. London: Kimperton; Huthins VL. A history of hild health and pediatris in the United States. In: Stein REK, editor. Health are for hildren: what s right, what s wrong, what s next. New York: United Hospital Fund of New York; Soial Seurity Administration. A fat sheet from Soial Seurity: welfare reform and SSI hildhood disaility. Washington: SSA; Soial Seurity Administration. SSA annual statistial report 2000: tale 2 numer and perentage distriution of SSI reipients, y age, Washington: SSA; 2000 [ited 2001 Mar]. Availale from: URL: Soial Seurity Administration. SSR 91-7: Setion 1614(a)(3)(A) of the Soial Seurity At (42 U.S.C. 1382(a)(3)(C)(i)) Supplemental Seurity Inome disaility standards for hildren [ited 2000 Jul]. Washington: SSA; Availale from: URL: Lesser AJ. Puli programs for rippled hildren. In Hos N, Perrin JM, editors. Issues in the are of hildren with hroni illness. San Franiso: Jossey-Bass Pulishers; Nelson RP, Stein REK. Researh priorities in maternal and hild health. In: Klerman L, editor. Report of a onferene. Washington: Department of Health and Human Servies (US); MPherson M, Arango P, Fox H, Lauver C, M- Manus M, Newahek, PW, et al. A new definition of hildren with speial health are needs. Pediatris 1998; 102 (1Pt1): Newahek PW, Strikland B, Shonkoff JP, Perrin JM, MPherson M, MManus M, et al. An epidemiologi profile of hildren with speial health are needs. Pediatris 1998;102(1Pt1): Rodman J, Weill K, Drisoll M, Fenton T, Alpert H, Salem-Shatz S, Palfrey JS. A nation-wide survey of finaning health-related servies for speial eduation students. J Sh Health 1999;69: Committee of Children with Disailities of The Amerian Aademy of Pediatris. Managed are and hildren with speial health are needs: a sujet review. Pediatris 1998;102: Ireys HT, Anderson GF, Shaffer TJ, Neff TM. Expenditures for the are of hildren with hroni illlnesses enrolled in the Washington State Mediaid program, fisal year Pediatris 1997;100(1Pt1): Reiss JJ, Dearholt D. Diretory of state Title V CSHCN programs: eligiility riteria and sope of servies, 2000 ed. Gainesville (FL): Availale from: URL: shnleaders.ihp.edu/titlevdiretory/diretory/htm 19. Perrin JM, Ettner SL, MLaughlin TJ, Gortmaker SL, Bloom SR, Kuhlthau K. State variations in Supplemental Seurity Inome enrollment for hildren and adolesents. Am J Puli Health 1998;88: Amerian Assoiation of Mental Retardation. Fat sheet: frequently asked questions aout mental retardation [ited 2002 Mar]. Washington: Amerian Assoiation of Mental Retardation; Availale from: URL: Newahek P, Taylor W. Prevalene and impat of hildhood hroni onditions. Am J Puli Health 1982;82: Newahek PW, MManus MA, Fox HB. Prevalene and impat of hroni illness among adolesents. Am J Dis Child 1991;145: Gay JC, Muldoon JH, Neff JM, Wing LJ. Profiling the health servie needs of populations: desription and uses

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