Maintaining Health Services for Children Amid Welfare conf2002usion:
The Importance of Early and Periodic Screening, Diagnosis and Treatment
© 2000 by National Health Law Program
by
Jane Perkins, Staff Attorney
National Health Law Program
I. Introduction
To maintain and improve the health status of our children, it is crucial that they receive well-child check ups and necessary follow up treatment. In light of their disproportionate needs and poverty status, the Medicaid Act entitles poor children and youth to receive comprehensive medical and behavioral screening and treatment services through a benefit called "Early and Periodic Screening, Diagnosis and Treatment (EPSDT)." Fortunately, the EPSDT benefit was not changed by the Personal Responsibility and Work Opportunity Reconciliation Act (Personal Responsibility Act) of 1996.
However, children's access to Medicaid EPSDT services has been affected. Historically, most children automatically qualified for Medicaid, and thus EPSDT, when they became eligible for cash assistance benefits, Aid to Families with Dependent Children (AFDC) or Supplemental Security Income (SSI). Receipt of cash assistance was the most common method through which children obtained Medicaid. The Personal Responsibility Act changed the rules for determining whether disabled children qualify for SSI, and it replaced AFDC with a block grant program, Temporary Assistance for Needy Families (TANF), which does not include automatic eligibility for Medicaid.(1) The access problem arises because many children who are losing cash assistance benefits because of the Personal Responsibility Act are not applying for Medicaid and as a consequence are losing access to EPSDT.(2)
Even with the Personal Responsibility Act changes, however, there are a number of other paths through which children can qualify for Medicaid, and most poor children in fact remain eligible for Medicaid.(3) These children also retain their entitlement to EPSDT. This is a crucial victory for poor children.
However, much work needs to be done. It is essential that families and children learn about the benefits of preventive care and that they use EPSDT. Advocates can assist their clients by enhancing their own understanding of how the program works and realizing that EPSDT, while unharmed by the 1996 welfare legislation, is itself a fragile benefit. Branded by some policy makers as a "big ticket" unfunded federal mandate, EPSDT is, in reality, underused, and it generates relatively insignificant costs. This article, first, provides an overview of the health care needs of poor children. It then describes the EPSDT benefit. Finally, the article discusses recent developments regarding federal and state implementation of the program that are of importance to child health advocates.
II. Poor Children Need EPSDT
Low socioeconomic status carries with it numerous by-products -- poor nutrition, fewer educational opportunities, greater exposure to environmental hazards, and inadequate housing, to name just a few. All of these disadvantages increase the likelihood that a poor child will be in poor health. Indeed, numerous studies conf2002irm that children living in poverty are more likely than non-poor children to suffer from vision, hearing and speech problems, dental health problems, lead poisoning, sickle cell disease, behavioral health problems, anemia, asthma, and pneumonia.(4)
Early detection and treatment can avoid or minimize the effects of many of these childhood conditions.(5) For this to occur, however, the publicly-funded health insurance benefits that are offered to families with children must recognize that the health care needs of children and youth differ from those of adults and that poor children disproportionately need health care services and assistance with obtaining these services. Indeed, children experience numerous health and developmental milestones that must be assessed and treated on time; if problems are not diagnosed promptly, the benefits of treatment can be lost forever.(6)
The Medicaid EPSDT benefit recognizes the differences between children, youth, and adults. It offers children in low income families an effective, comprehensive package of child-oriented screening and treatment services, along with support services to make sure that families and children know about and can use EPSDT.
III. Overview of EPSDT
EPSDT has been part of the Medicaid program since 1967.(7) Children and youth under age 21 are entitled to receive EPSDT. By statute, each state should offer an EPSDT benefit that includes: screening and treatment services, aggressive outreach and informing, an adequate pool of participating providers, and accurate monitoring and reporting.
A. Requirements for screens
Screens, or well-child check ups, are a basic element of the EPSDT program.(8) Four separate types of screens are required: medical, vision, hearing, and dental.(9)
The medical screen must include at least the following five components:
The three other types of EPSDT assessments include diagnosis and treatment for defects in hearing, including hearing aids;(14) diagnosis and treatment for defects in vision, including eyeglasses;(15) and dental assessments for relief of pain and infections, restoration of teeth, and maintenance of dental health.(16)
B. Requirements for periodic screening
Each of the four types of screens -- medical, vision, hearing, and dental -- must be performed at distinct intervals, as determined by "periodicity schedules" that meet the standards of pediatric and adolescent medical and dental practice.(17) For example, current practice guidelines call for annual screening of adolescents.(18)
In addition to covering scheduled, periodic check ups, EPSDT covers visits to a health care provider when needed outside of the periodicity schedule to determine whether a child has a condition that needs further care.(19) These types of screens are called "interperiodic screens." Persons outside the health care system (for example, a teacher or parent) can determine the need for an interperiodic screen,(20) and "any encounter with a health care professional acting within the scope of practice is considered to be an interperiodic screen, whether or not the provider is participating in the Medicaid program at the time those screening services are furnished."(21) To assure that the preventive thrust of the EPSDT program is maintained, the state cannot require prior authorization for either periodic or interperiodic screens.(22)
C. Requirements for diagnostic and treatment services
If an illness or condition is diagnosed during a periodic or interperiodic screen, EPSDT requires state Medicaid agencies to "arrange for (directly or through referral to appropriate agencies, organizations, or individuals) corrective treatment."(23) Significantly, the Medicaid Act defines a comprehensive package of EPSDT benefits, and it sets forth the medical necessity standard that must be applied on an individual basis to each eligible child. Covered services include all mandatory and optional services that the state can cover under Medicaid, whether or not such services are covered for adults.(24) Medical necessity is defined to cover "necessary health care, diagnostic services, treatment, and other measures . . . to correct or ameliorate defects and physical and mental illnesses and conditions[.]"(25) In sum, if a health care provider determines that a service is needed, it should be covered to the extent needed and allowed under the federal Medicaid Act. For example, if a child needs physical therapy services to ameliorate his condition, then EPSDT should cover those services to the extent the child needs them -- even if the state places a quantitative limit on physical therapy services or does not cover them at all for adults.(26)
Finally, the Medicaid Act ensures that cost is not a barrier to EPSDT. States are prohibited from imposing deductibles, copayments, cost sharing, or similar charges on services furnished to individuals under 18 years of age (and at state option, individuals under 21, 20, or 19 years of age).(27)
D. Requirements for informing
If EPSDT is to work, there is an absolute need for effective outreach and informing. As noted by the Seventh Circuit Court of Appeals:
[States cannot] expect that children of needy parents will volunteer themselves or that their parents will voluntarily deliver them to the providers of health services for early medical screening and diagnosis. By the time [a child] is brought for treatment it may too often be on a stretcher. . . . EPSDT programs must be brought to the recipients; the recipients will not ordinarily go to the programs until it is too late to accomplish the congressional purpose.(28)
In the EPSDT legislation, Congress has required states to inform all Medicaid-eligible persons in the state who are under age 21 of the availability of EPSDT and immunizations.(29) States must use a combination of written and oral methods to effectively inform eligible individuals about: (1) the benefits of preventive health care; (2) the services available through EPSDT; (3) that services are without charge, except for premiums for certain families; and (4) that support services, specifically transportation and appointment scheduling assistance, are available on request.(30) Notably, states must offer both transportation and appointment scheduling assistance "prior to each due date of a child's periodic examination."(31)
E. Requirements for provider participation
The Medicaid Act includes a number of general and EPSDT-specific provisions designed to assure an adequate number and range of child-serving providers. States are required to make payments that are sufficient to enlist enough providers "so that care and services are available . . . at least to the extent that such care and services are available to the general population in the geographic area."(32) Medicaid-participating managed care organizations must have an appropriate range of services and access to preventive and primary care services and a sufficient number, mix, and geographic distribution of providers of services.(33)
Specifically with regard to EPSDT, federal provisions enacted in 1989 prohibit the states from limiting participation to only those providers who are able to deliver all components of the EPSDT screen.(34) Federal regulations call on the state Medicaid agency to "make available a variety of individual and group providers qualified and willing to provide EPSDT services."(35) Moreover, the agency is supposed to "assur[e] the availability and accessibility of required resources"(36) and "take advantage of all resources available" to provide a "broad base" of EPSDT providers.(37)
F. The unique nature of EPSDT
Since its inception, the EPSDT law has been unique. First, as illustrated by the previous discussion, the statute is written with unusual clarity. In addition, unlike other Medicaid services, which are geared to acute care needs, EPSDT emphasizes the early discovery of illness and the need for comprehensive care. Moreover, in contrast to other Medicaid services, the state Medicaid agency must not only cover needed EPSDT services but actually engage in "arranging for . . . corrective treatment" that is needed.(38) Thus, while the state generally is required only to pay for most services when medically necessary, the state must provide or arrange for EPSDT.(39) This imposes an affirmative obligation on the states to ensure that children actually receive needed care.(40)
IV. The Current Status of EPSDT
Despite its clear wording, EPSDT has not fulfilled its promise. (41) As discussed below, state-reported screening levels leave much room for improvement, and identified barriers to EPSDT screening need to be acknowledged and addressed.
A. Too few children are receiving EPSDT.
When Congress amended the Medicaid Act in 1989 to clarify the EPSDT rules, fewer than one-third of eligible children were being screened nationwide.(42) Subsequent reports continue to find low screening rates.(43) The National Health Law Program (NHeLP) has recently reviewed state-reported data for fiscal years 1994, 1995, and 1996 and found that, while screening rates have improved, EPSDT still does not meet expectations.(44) In 1996, 22.9 million children were eligible for EPSDT.(45) Only 37 percent of these children received a medical check-up through EPSDT; 21 percent, a dental screen; 15 percent, a vision screen; and 13 percent, a hearing screen.(46) The report found that screening is not evenly distributed among age groupings. With the exception of dental services, infants and young children are significantly more likely to receive health screens.(47) Not surprisingly, state profiles of EPSDT participation vary considerably.(48)
B. A number of barriers to EPSDT have been identified
Children are encountering a number of barriers to obtaining EPSDT services. First, there is a shortage of providers. Second, beneficiaries are not effectively informed of the program and its benefits. Service delivery in managed care settings and the provision of mental health services present particular challenges. Finally, the program has political opposition from those who view it as expensive and prescriptive.
1. Provider and beneficiary problems
Provider shortages prevent EPSDT services from being uniformly available. Health care providers cite low reimbursement rates, lack of knowledge among beneficiaries of the importance of preventive care, appointment "no shows," and the on-again-off-again nature of Medicaid eligibility as reasons for not participating in the Medicaid program.(49) And while increases in reimbursement rates have been shown to increase provider participation in EPSDT, the increases in participation are being outpaced by increases in the numbers of poor children who are qualifying for Medicaid.(50)
Families have also cited a number of barriers, including competing family or personal issues and the difficulty of getting to and using EPSDT services.(51) Information overload during the welfare enrollment process and lack of knowledge of the EPSDT program have also been cited as problems by Medicaid beneficiaries.(52)
2. The challenge of managed care
Medicaid managed care brings new opportunities and multiple challenges for improving EPSDT services. In a previous article in this journal, the National Health Law Program examined the relationship between Medicaid managed care and EPSDT.(53) This discussion will focus on recent developments regarding the provision of EPSDT in managed care settings.
Approximately 48 percent of Medicaid beneficiaries were enrolled in Medicaid managed care as of 1997.(54) Enrollment of children has grown exponentially as states targeted their initial efforts to children and families and are increasingly including children with special health care needs.(55) Thus, managed care is becoming the predominant method of delivering EPSDT services to poor children.
Even as the move to Medicaid managed care has picked up speed, "there is little empirical evidence to demonstrate that this is an appropriate movement, or to show how the potential benefits of managed care can be maximized and the potential harms minimized."(56) Studies, to date, suggest that managed care's ability to save costs, at least among poor children, is limited.(57) Medicaid managed care programs have shown mixed results in terms of improving access to preventive services and treatment.(58) Some studies find that utilization of preventive services remains constant or slightly improves in Medicaid managed care.(59) However, a recent report from the Office of Inspector General found that fewer than one in three Medicaid children enrolled in managed care organizations (MCOs) received timely EPSDT services, and six of ten received none at all.(60)
Six overarching recommendations are repeatedly mentioned as ways to improve EPSDT in managed care:(61)
Not surprisingly, the problems children have encountered in managed care have not gone unnoticed by the courts. Cases from Tennessee and the District of Columbia illustrate the problems that are being addressed.(63)
The Tennessee case, John B. v. Menke, represents a comprehensive challenge to a statewide managed care program's failure to assure that children get EPSDT services.(64) In their complaint, children and their families noted numerous problems, including the lack of outreach and informing; failure to provide screening and diagnostic services; and failure to provide needed treatment, from wheelchairs to home-based mental health services The case was settled when the state agreed to implement a plan that includes requirements for:
The District of Columbia also recently agreed to settle a Medicaid EPSDT case, Salazar v. District of Columbia,(67) which focused on the lack of outreach and informing of children in managed care settings. The District and its contracting MCOs have agreed to:
Taken together, these cases illustrate the role that litigation currently plays to improve the lives of children in instances where MCOs and states are not voluntarily complying with federal law. They also are evidence of the opportunities presented by managed care to coordinate services for children, especially those with serious medical needs. With the signing of the managed care contract comes enhanced legal responsibilities for the provision of health services, including EPSDT. In addition, when the state uses capitation payments that include EPSDT, the state is pre-paying for these services and there should be accountability for the money that is spent.
3. Children's struggle to obtain mental and behavioral health care
EPSDT covers a range of home and community based services, when medically necessary and appropriate. In some states, children with mental health needs are experiencing barriers to obtaining these services. French v. Concannon illustrates the situation. The case was filed on behalf of Medicaid-eligible children in Maine who have severe mental impairments, including mental retardation, autism, or mental illness, and who need home or community-based services to treat their impairments.(68) Needed EPSDT-covered services include case management, in-home aides, medication monitoring, and mental health counseling. According to the complaint, the state Medicaid agency was failing to provide these services to children and their families in a timely manner. As a result, children were waiting months -- and in some cases years -- for services, or conf2002ined to institutions, many of them out-of-state.
The case was settled last summer. While the ultimate success of the action has yet to been seen, it already has achieved a number of positive results:
Significantly, while French was pending, legislation was adopted to streamline the delivery of mental health services and focus on in-state, family-centered health services.(69) An oversight committee, which includes community-based providers and advocates, is meeting regularly to monitor progress in this long term effort to improve mental health services.
The situation in Maine is not unique. In many states, there are increasing numbers of children who have health care needs that cut across physical health to include mental, developmental, and psycho-social domains.(70) Many of these children can be treated in the community but are languishing in acute settings for extended periods of time or placed on waiting lists for community-based services. Case management is often needed to assure that services are received in a timely manner, without unnecessary duplication or labeling. There is also a need to develop an adequate supply of behavioral health providers for home and community settings. Not surprisingly, child advocates in other states are working on an individual and class wide basis to obtain EPSDT coverage of behavioral and mental health services.(71)
4. The unsettled political climate
When the EPSDT requirements were amended in 1989, some states hotly criticized the Congressional action as an unfunded mandate. During subsequent sessions of Congress, some policy makers unsuccessfully have sought to block grant the Medicaid program -- which would have repealed a child's right to receive EPSDT. Failing this, the National Governors' Association, in 1996, called for the EPSDT rules to be relaxed and the treatment provisions to be repealed.(72)
While this suggestion was not accepted, Congress did include a provision in the Balanced Budget Act of 1997 which calls on the Department of Health and Human Services (HHS) to report on the EPSDT program, including an examination of the actuarial value of treatment services.(73) The hope of some policy makers is that EPSDT treatment services will be tailored to reflect those available in a commercial benefit package. Commercial benefits typically lack the range of services and broader package of medically-oriented support services that are covered by EPSDT. The elimination of these services would be devastating to low income children and children with disabilities who depend on EPSDT for their health care. The HHS report is not expected before the Spring of 1999.(74) Much advocacy is needed to ensure that state and federal policy makers continue to recognize the critical role of EPSDT for low-income and disabled children and to ensure its continued existence.
In fact, EPSDT is not the "budget breaker" that some have portrayed it to be. While children represent half of the total Medicaid population, they account for only 16.7 percent of total Medicaid spending.(75) Notably, researchers have assessed the impact of the 1989 EPSDT changes on the states and found them to have been neither financially excessive nor administratively burdensome.(76) A four state assessment concluded that none of the study states had significantly changed the depth or breadth of coverage of diagnostic or treatment services for children in their Medicaid programs.(77) Studies conducted by the American Public Welfare Association, an organization that works with state Medicaid directors, have concluded that EPSDT spending has not had a significant impact on state budgets.(78)
By contrast, when the focus shifts to what EPSDT means to the lives of children and youth, it is clear that the program is essential and successful. The Research Triangle Institute, Emory University, and The MEDSTAT Group looked at how the 1989 EPSDT amendments have affected health status, service use, and expenditures for Medicaid children in four states.(79) The study found that "although room exists for significant improvement . . . the net impact on children's health service use of the Medicaid program changes during the 1989-92 period was unquestionably positive."(80)
V. Conclusion
EPSDT has much to offer poor and near-poor children and youth. Unfortunately, as noted in this article, the benefits of the program are often missed. However, despite its shortcomings, the current evidence is that EPSDT is a useful program for children and that is not financially or administratively burdensome on states. Given all this, it is vitally important that EPSDT be maintained in the future and during the conf2002usion that accompanies welfare reform.
1. See 42 U.S.C. § 1396u-1 (West Supp. 1998). See National Health Law Program et al., The Welfare Law and Its Effects on Medicaid Recipients, 30 Clearinghouse Rev. 1008 (Jan./Feb. 1997).
2. See, e.g., The Kaiser Commission on the Future of Medicaid, Medicaid and the Uninsured: The Dynamics of Current Medicaid Enrollment Changes (Oct. 1998).
3. The Personal Responsibility Act created a "shadow AFDC" program that makes children who would be eligible for AFDC, using the rules in effect as of July 16, 1996, automatically eligible for Medicaid (if they apply). The Personal Responsibility Act did not affect the Medicaid expansions of the 1980s, which extended Medicaid to children based on their age and income. See 42 U.S.C.A. §§ 1396a(a)(10), 1396a(l) (West Supp. 1998).
4. For citation to clinical studies, see, e.g., Paul W. Newacheck et al., The Effect on Children of Curtailing Medicaid Spending, 274 JAMA 1468 (Oct. 1995); Jane Perkins and Susan Zinn, Toward a Healthy Future -- Early and Periodic Screening, Diagnosis and Treatment For Poor Children (Apr. 1995) [hereinafter Toward a Healthy Future] (available from National Health Law Program, Los Angeles, CA).
5. See, e.g., National Governors' Ass'n, Caring for Children 8 (1991) ("Preventive care, early treatment of acute illnesses, and amelioration of chronic illnesses early in life may prevent more costly health problems later."). For citation to literature discussing the effectiveness of preventive services, see, e.g., National Health Law Program & National Center for Youth Law, EPSDT Update for Child Health Insurance and Medicaid Advocates, 191 Health Advocate 13 (Winter 1998).
6. See, e.g., National Center for Education in Material and Child Health, Bright Futures -- Guidelines for Health Supervision of Infants, Children, and Adolescents (Dec. 1994) (offering recommendations for screening). See generally Children's Defense Fund, Health Problems Among Children and Working-Age Adults (Feb. 2, 1998) (finding that arthritis and high blood pressure, the most common chronic health problems for adults, are among the least common for children, and tonsil-adenoid disease and speech impairment, among the most common chronic health problems for children, are least common among adults).
7. See 42 U.S.C.A. §§ 1396a(a)(10), 1396a(a)(43), 1396d(a)(4)(B), 1396d(r) (West Supp. 1998). The Medicaid Act was amended in 1989 to strengthen the EPSDT provisions. See Omnibus Budget Reconciliation Act of 1989, Pub. L. No. 101-239, § 6403, 103 Stat. 2106, 2263 (1989). It was amended in 1993 to add the Vaccines for Children program. See Omnibus Budget Reconciliation Act of 1993, Pub. L. No. 103-66, § 13631, 107 Stat. 312 (1993) (adding 42 U.S.C. §§ 1396a(a)(62), 1396s). See also 42 C.F.R. § 441.50 et seq. (1997). In 1993, the Health Care Financing Administration proposed rules to implement the 1989 amendments. See 56 Fed. Reg. 51,299 (Oct. 1, 1993). The rules are on the agency's "long-term" agenda, meaning that action is not expected on them within the next 12 months. See 63 Fed. Reg. 21676 (Apr. 27, 1998). The Health Care Financing Administration also has published guidelines on EPSDT. See Health Care Financing Administration, U.S. Dep't of Health & Human Services, State Medicaid Manual Part 5 (available at <http://www.hcfa.gov>). "Instructions [in this Manual] are official interpretations of the law and regulations, and, as such, are binding on Medicaid state agencies." Id. at Foreword. Federal courts have cited the Manual with favor. See, e.g., Stowell v. Ives, 3 F.3d 539 (1st Cir. 1993).
8. For detailed discussion of EPSDT screening, see, Toward a Healthy Future, supra note 4, at 50-86.
9. See 42 U.S.C.A. § 1396d(r)(1)(B) (West Supp. 1998); Health Care Financing Administration, U.S. Dep't of Health & Human Services, State Medicaid Manual § 5123.2.A (entitled "Comprehensive Health and Developmental History").
10. The developmental assessment is to be used to determine whether physical and mental development are appropriate in relation to age group and cultural background. See Id. at § 5123.2.A(1).
11. Vaccines must be administered according to the schedule developed by the Advisory Committee on Immunization Practices. See 42 U.S.C.A. § 1396s(e) (West Supp. 1998).
12. See, e.g., Letter from Sally K. Richardson, Director, Health Care Financing Administration, to Sate Medicaid Directors (Apr. 13, 1998) (stating lead screening requirements) (available from National Health Law Program, Los Angeles, CA); Health Care Financing Administration, U.S. Dep't of Health and Human Services, State Medicaid Manual § 5123.2; Thompson v. Raiford, No. 3:92-CV-1539-R, 1993 WL 497232, reprinted in Medicare & Medicaid Guide (CCH) ¶ 41,776 (N.D. Tex. Sept. 24, 1993) (requiring Health Care Financing Administration to implement lead testing). Other laboratory tests include anemia tests, sickle cell tests, tuberculin tests, as well as other tests determined by the child's age, sex, health history, clinical symptoms, and exposure to disease (for example, urine screens, drug dependent screening, and HIV screening). See Health Care Financing Administration, U.S. Dep't of Health and Human Services, State Medicaid Manual § 5123.2.
13. Legislative history to the 1989 EPSDT amendments stresses that "... anticipatory guidance to the child (or the child's parent or guardian) is a mandatory element of any adequate EPSDT assessment." H.R. Rep. No. 101-247, at 399 (1989), reprinted in 1989 U.S.C.C.A.N. 1906, 2125. See also Health Care Financing Administration, U.S. Dep't of Health and Human Services, State Medicaid Manual § 5123.2.E.
14. See 42 U.S.C.A. § 1396d(r)(4) (West Supp. 1998); 42 C.F.R. § 441.56; Health Care Financing, U.S. Dep't of Health and Human Services, State Medicaid Manual § 5123.2.F.
15. See 42 U.S.C.A. § 1396d(r)(2) (West Supp. 1998); 42 C.F.R. § 441.56; Health Care Financing Administration, U.S. Dep't of Health and Human Services, State Medicaid Manual § 5123.2.F.
16. See 42 U.S.C.A. § 1396d(r)(3) (West Supp. 1998); 42 C.F.R. § 441.56; Health Care Financing Administration, U.S. Dep't of Health and Human Services, State Medicaid Manual § 5123.2.F. Dental sealants are covered services when needed to prevent pit and fissure caries. See Health Care Financing Administration, U.S. Dep't of Health and Human Services, State Medicaid Manual § 5124. For cases on coverage of dental sealants, see Frew v. Friedholm, No. 3:93CV65 (E.D. Tex., Jan. 25, 1996) (Clearinghouse Review No. 50,456) (consent decree) (motion to enforce consent decree filed Oct. 23, 1998); Barajas v. Coye, No. CIV-S-92 (E.D. Cal. Oct. 29, 1992) (Clearinghouse Rev. No. 48,766).
17. 42 U.S.C.A. § 1396d(r) (West Supp. 1998); 42 C.F.R. § 441.56(b); Health Care Financing Administration, U.S. Dep't of Health and Human Services, State Medicaid Manual § 5140.
18. See American Academy of Pediatrics, Recommendations for Preventive Pediatric Health Care (modified May 21, 1998) <http://www.aap.org/profed/9535t11.htm>; American Medical Ass'n, Guidelines for Adolescent Preventive Services (Dec. 1992).
19. See 42 U.S.C.A. § 1396d(r) (West Supp. 1998); Health Care Financing Administration, U.S. Dep't of Health & Human Services, State Medicaid Manual § 5140.B.
20. Id. See also Health Care Financing Administration Dallas Regional Medical Services Letter No. 91-37 (May 15, 1991) (available from National Health Law Program, Los Angeles, CA).
21. See, e.g., Memorandum from Director, Health Care Financing Administration Medicaid Bureau, to Region III Administrator, Health Care Financing Administration (Apr. 12, 1991) (available from National Health Law Program, Los Angeles, CA). This is significant because the interperiodic visit qualifies the child for EPSDT's treatment benefits, described infra.
22. See H.R. Rep. No. 101-247 at 400 (1989), reprinted in 1989 U.S.C.C.A.N. 1906, 2126.
23. 42 U.S.C.A. § 1396a(a)(43)(C) (West Supp. 1998).
24. Id. at § 1396d(r)(5). For the list of Medicaid services, see Id. at § 1396d(a).
25. Id. at § 1396d(r)(5). See also, e.g., Mitchell v. Johnston, 701 F.2d 337 (5th Cir. 1983).
26. See generally Health Care Financing Administration, Transmittal Notice MCD-90-90 (Region IV) (Sept. 18, 1990) (available from National Health Law Program, Los Angeles, CA); Memorandum from Christine Nye, Health Care Financing Administration Medicaid Director, to Regional VIII Administrator, Health Care Financing Administration (1991) (available from National Health Law Program, Los Angeles, CA).
27. See 42 U.S.C.A. § 1396o(a) (West Supp. 1998).
28. Stanton v. Bond, 504 F.2d 1246, 1251 (7th Cir. 1974), cert. denied, 420 U.S. 894 (1975) (subsequent history omitted).
29. See 42 U.S.C. § 1396a(a)(43)(A) (West Supp. 1998).
30. See 42 C.F.R. § 441.56; Health Care Financing Administration, U.S. Dep't of Health & Human Services, State Medicaid Manual § 5121. Congress has said states need to take "aggressive action" to inform children and families about EPSDT. See 135 Cong. Rec. S 13234 (Oct. 12, 1989).
31. Health Care Financing Administration, U.S. Dep't of Health & Human Services, State Medicaid Manual § 5150.
32. 42 U.S.C.A.§ 1396a(a)(30)(A) (West Supp. 1998).
33. See Id. at § 1396u-2(b)(5). See also Id. at § 1396a(a)(25)(E) (requiring states to pay the provider for preventive pediatric services and then seek reimbursement from the third party).
34. See Id. at § 1396d(r). See also H.R. Rep. No. 101-247 at 400, reprinted in 1989 U.S.C.C.A.N. 1906, 2126. Some states, for example, had restricted EPSDT providers to public health departments.
35. 42 C.F.R. § 441.61 (1997).
36. Health Care Financing Administration, U.S. Dep't of Health & Human Services, State Medicaid Manual § 5010.B.
37. Id. at § 5220.
38. 42 U.S.C.A. § 1396a(a)(43)(C) (West Supp. 1998).
39. George J. Annas et al., American Health Law 186-87 (1990).
40. See, e.g., Doe v. Pickett, 480 F. Supp. 1218, 1221 (S.D.W.Va. 1979) (holding that EPSDT "imposes on the states an affirmative obligation to see that minors actually receive necessary treatment and medical services").
41. A notable exception is immunization rates among preschool children, which in 1996 reached higher levels than ever previously recorded. Centers for Disease Control and Prevention, National Annual Immunization Goals Met with Record High Immunization Levels (Feb. 1997) (Media Release). Immunization rates of two-year-olds living in urban areas also have been improving. Children's Defense Fund, Urban Immunization Rate for 2-Year-Olds in 1997 (Nov. 12, 1998). These increases follow enactment of the 1993 Vaccines for Children program, which makes federally-purchased and delivered immunizations available at no cost to children age 18 and under who are uninsured for immunizations, on Medicaid, or of Native American descent. See 42 U.S.C.A. §§ 1396a(a)(62), 1396d(r)(1)(B)(iii), 1396s (West Supp. 1998). Nonetheless, immunization rates for low-income children still lag behind those of wealthier children. See Centers for Disease Control And Prevention, Vaccination Coverage by Race/Ethnicity and Poverty Level Among Children Aged 19-35 Months -- United States, 1997, 47 Morbidity and Mortality Weekly Report 956 (Nov. 13, 1998).
42. Liu, Increasing the Proportion of Children Receiving EPSDT Benefits -- A South Carolina Case Study, C.D.F. Reports at 2 (July 1990). In the decade leading up to the 1989 amendments, per child recipient costs for physician services grew by just 1 percent each year, and per recipient EPSDT costs actually declined by 1 percent each year. Jennifer D.C. Cartland et al., A Decade of Medicaid in Perspective: What Have Been the Effects on Children?, 91 Pediatrics 287 (1993).
43. E.g., Norma I. Gavin et al., The Use of EPSDT and Other Health Care Services by Children Enrolled in Medicaid: The Impact of OBRA '89, 76 Milbank Q. 207 (1998) (finding, despite four states' efforts to increase preventive care use, less than half of children expected to have visits had received well-child care); U.S. General Accounting Office, Medicaid: Elevated Blood Lead Levels in Children 2 (Feb. 1998) (finding 81 percent of Medicaid children had not been previously screened for lead); Health Care Financing Administration, U.S. Dep't of Health & Human Services, Medicaid National Summary of Early and Periodic Screening, Diagnostic and Treatment Program (Sept. 1993).
44. Kristi Olson, Jane Perkins, and Tonya Pate, Children's Health Under Medicaid: A National Review of Early and Periodic Screening, Diagnosis and Treatment (Aug. 1998) [hereinafter A National Review of EPSDT] (available from National Health Law Program, Los Angeles, CA). The report used the data reported by states on the Health Care Financing Administration's EPSDT reporting form, Form 416.
45. Id. at 20 (Figure 1).
46. Id. at 9.
47. Id. at 23 (Figure 4).
48. Id. at 50-100.
49. E.g. Office of Inspector General, Dep't of Health and Human Services, Medicaid Managed Care and EPSDT 8 (May 1997); Office of Inspector General, Dep't of Health and Human Services, Dental Services Under Medicaid: Access and Utilization (Apr. 1, 1996). For recommendations to improve provider participation in Medicaid managed care, see A National Review of EPSDT, supra note 44, at 15.
50. See, e.g., Norma I. Gavin et al., The Use of EPSDT and Other Health Care Services by Children Enrolled in Medicaid: The Impact of OBRA '89, 76 Milbank Q. 207, 209, 244-45 (1998)
51. E.g. Roberta Riportella-Muller, Barriers to the Use of Preventive Care Services for Children, 111 Pub. Health Rpt. 71 (Jan./Feb. 1997).
52. Id. at 74. For citation to EPSDT cases involving lack of information about the program, see National Health Law Program, EPSDT Case Docket (Sept. 9, 1998) <http:\\www.healthlaw.org.>.
53. See Jane Perkins & Lourdes Rivera, EPSDT and Managed Care: Do Health Plans Know What They are Getting Into?, 28 Clearinghouse Rev. 1248 (Mar. 1995).
54. See Health Care Financing Administration, National Summary of Medicaid Managed Care Programs and Enrollment (June 30, 1997) <http://www.hcfa.gov>. Interpretation of these enrollment figures can be difficult because enrollees include individuals in full and partial risk managed care organizations and primary care case management systems.
55. While the Balanced Budget Act of 1997 relaxed state requirements for mandating enrollment of families and children, states still must obtain a waiver from the federal government if they are going to require children with special health care needs to enroll in a managed care program. See 42 U.S.C. § 1396u-2 (West Supp. 1998).
56. See Dana C. Hughes & Harold S. Luft, Managed Care and Children: An Overview, in 8 The Future of Children: Children and Managed Health Care 25, 36 (Summer/Fall 1998) (Richard E. Behrman, M.D., ed.) (available from The David and Lucile Packard Foundation, Los Altos, CA).
57. For citation to studies, see, e.g., The Kaiser Commission on the Future of Medicaid, Medicaid and Managed Care: Lessons from the Literature (Mar. 1995); Dana C. Hughes et al., Medicaid Managed Care: Can It Work for Children?, 95 Pediatrics 591 (Apr. 1995).
58. See, e.g., Margo L. Rosenbach & Norma I. Gavin, Early and Periodic Screening Diagnosis, and Treatment and Managed Care, 19 Annu. Rev. Public Health 507 (1998); The Kaiser Commission on the Future of Medicaid, Medicaid and Managed Care: Lessons from the Literature (Mar. 1995) (offering an annotation of previous studies); U.S. General Accounting Office, Medicaid: States Turn to Managed Care to Improve Access and Control Costs (1993); Deborah Freund and Eugene Lewit, Managed Care for Children and Pregnant Women: Promises and Pitfalls, 3 The Future of Children 92 (Summer/Fall 1993); Harriette Fox and Margaret McManus, Medicaid Managed Care Arrangements and Their Impact on Children and Adolescents: A Briefing Report (Nov. 1992) (available from Fox Health Policy Consultants, Washington, D.C.).
59. Id.
60. Office of Inspector General, U.S. Dep't of Health and Human Services, Medicaid Managed Care and EPSDT (May 1997).
61. See, e.g., George Washington University Center for Health Policy Research, Sample Medicaid Pediatric Purchasing Specifications (Oct. 1998); Health Care Financing Administration, U.S. Dep't of Health & Human Services, Key Approaches to the use of Managed Care Systems for Persons with Special Health Care Needs (Oct. 1998); National Health Law Program, A National Review of EPSDT, supra note 44; Margo L. Rosenbach & Norma I. Gavin, Early and Periodic Screening, Diagnosis, and Treatment and Managed Care, 19 Annu. Rev. Public Health (1998); Harriette B. Fox and Margaret A. McManus, Improving State Medicaid Contracts and Plan Practices for Children with Special Needs, in 8 The Future of Children: Children and Managed Health Care 105 (Summer/Fall 1998) (Richard E. Behrman, M.D., ed.); Office of Inspector General, U.S. Dep't of Health & Human Services, Medicaid Managed Care and EPSDT (May 1997); U.S General Accounting Office, Medicaid Managed Care: Challenge of Holding Plans Accountable Requires Greater State Effort (May 1997); Health Care Financing Administration, U.S. Dep't of Health & Human Services, Integrating EPSDT and Medicaid Managed Care: Strategies for States and Managed Care Plans (Sept. 1996); Dana C. Hughes et al., Medicaid Managed Care: Can It Work for Children?, 95 Pediatrics 591 (Apr. 1995).
62. The Medicaid Act allows states to guarantee 12 months of Medicaid eligibility to children and youth, regardless of a change in income status, see 42 U.S.C.A. § 1396a(e)(12) (West Supp. 1998), and to guarantee 6 months of continued enrollment in an MCO or primary care case management system, regardless of a change in income status, see Id. at § 1396a(e)(2).
63. See also, e.g., Bates-Booker v. Houstoun, No. 97-CV-3734 (E.D. Pa. Oct. 20, 1997) (Agreement) (discussing interplay between Medicaid and special education programs); Frew v. Friedholm, No. 3:93CV65 (E.D. Tex., Jan. 25, 1996) (Clearinghouse Review No. 50,456) (consent decree) (motion to enforce consent decree filed Oct. 23, 1998) (general EPSDT case); Scott v. Snyder, No. 91-CV-7080 (E.D. Pa. Dec. 2, 1994) (order and stipulation of settlement), same case, (E.D. Pa. Aug. 11, 1993), reprinted in Medicare & Medicaid Guide (CCH) ¶ 42,056 (stipulated settlement) (same); J.K. v. Dillenberg, No. Civ-91-261 TUC JMR (D. Ariz. Oct. 7, 1993), reprinted in Medicare & Medicaid Guide (CCH) ¶ 42,079 (focusing on behavioral health managed care services and due process).
64. No. 3-98-0168 (M.D. Tenn. Aug. 28, 1998) (Order).
65. See also Health Care Financing Administration, U.S. Dep't of Health & Human Services, State Medicaid Manual § 5121(a).
66. See No. 3-98-0168 (M.D. Tenn. Aug. 28, 1998) (Order). With respect to foster children, the agreement called for an expert report and a subsequent joint filing with the court to verify acceptance of any recommendations from the report. Following release of the report, which found that children were not getting needed health care, the state refused to submit a joint filing. Telephone Interview with Michelle Johnson, Staff Attorney, Tennessee Justice Center (Nov. 17, 1998). For a case requiring outreach to children in out-of-home placement, see, Sanders v. Lewis, No. 2:92-0353, 1995 WL 228308, reprinted in Medicare & Medicaid Guide (CCH) ¶ 43,120 (S.D.W.Va. Mar. 1, 1995 and Aug. 16, 1993) (consent order and compliance plan).
67. No. 93-452 (GK) (D.D.C. Sept. 23, 1998) ([Proposed] Order Modifying The Amended Remedial Order of May 6, 1997 and Vacating the Order of March 27, 1997).
68. No. 97-CV-24-B-C (D. Me. July 16, 1998) (Order of dismissal and agreement) (Clearinghouse Rev. No. 51,989).
69. "An Act to Improve the Delivery of Mental Health Services to Children," 1998 Me. Acts Ch. 790 (approved Apr. 16, 1998) (to be codified at Me. Rev. Stat. Ann. tit. 34-B, ch. 15, § 15001).
70. Clinical studies documenting these problems are cited in Paul W. Newacheck et al., The Effect on Children of Curtailing Medicaid Spending, 274 JAMA 1468 (Nov. 8, 1995).
71. See, e.g., Emily Q. v. Belshe, No. 98-4181 WDK (AUX) (C.D. Cal , filed May 27, 1998) (available from Protection & Advocacy, Los Angeles, CA). After the case was filed, the Department of Health Services agreed to establish procedures to cover therapeutic behavioral aide services and to evaluate whether requests for other types of services qualify for EPSDT. See Declaration of Carol S. Hood, Assistant Deputy Director of the Systems Implementation and Support Program of the Department of Mental Health (July 13, 1998) (available from Protection & Advocacy, Los Angeles, CA).
72. See National Governors' Ass'n, Medicaid Reform Proposal (Feb. 6, 1996), reprinted in Medicare & Medicaid Guide (CCH) ¶ 44,009.
73. Balanced Budget Act of 1997, Pub. L. No. 105-33, § 4744 (Aug. 5, 1997).
74. Telephone Interview with Penelope Pine, Health Care Financing Administration (Nov. 9, 1998).
75. The Kaiser Commission on the Future of Medicaid, Medicaid's Role for Children (Nov. 1997).
76. For citation to the literature, see Alice Sardell & Kay Johnson, The Politics of EPSDT Policy in the 1990s: Policy Entrepreneurs, Political Streams, and Children's Health Benefits, 76 Milbank Q. 175, 186-89.
77. Norma I. Gavin et al., The Use of EPSDT and Other Health Care Services by Children Enrolled in Medicaid: The Impact of OBRA '89, 76 Milbank Q. 207, 236-37 (1998). The four states -- California, Georgia, Michigan, and Tennessee -- together account for about 25 percent of all Medicaid recipients and 17-18 percent of total expenditures. Id. at 212.
78. American Public Welfare Ass'n, State by State Impact of the OBRA 1989 EPSDT Provisions (1997) (available from APWA, Washington, DC).
79. Norma I. Gavin et al., The Use of EPSDT and Other Health Care Services by Children Enrolled in Medicaid: The Impact of OBRA '89, 76 Milbank Q. 207 (1998)
80. Id. at 247.