Serious emotional disturbances: children's fight for community-based services through Medicaid litigation.

• Author: Scaparotti, Alyssa E.

"[C]hildren with serious emotional disabilities are among the most fragile members of our society; their medical needs frequently extend across a spectrum of service providers and state agencies. Prompt, coordinated services that support a child's continuation in the home can allow even the most disabled child a reasonable chance at a happy, fulfilling life. Without such services a child may face a stunted existence, eked out in the shadows and devoid of almost everything that gives meaning to the gift of life." (1)

1. INTRODUCTION

   There is a crisis in the mental health care system in the United States. (2) Children with mental illnesses endure long waiting lists in order to gain access to short-term, fragmented, and inappropriate services instead of receiving long-term, individualized, and coordinated medical care. (3) Inadequate care affects many aspects of a child's life. (4) A child with an untreated mental health disorder may endure unnecessary time in a hospital, delay in accessing medical treatment, misdiagnoses, difficulty in school, or removal from his family. (5) Children with serious emotional disturbances (SED) are particularly vulnerable to the problems in the mental health care system because a child with SED may require many different types of treatment throughout the different stages of his illness. (6) During an emergency crisis, a child may need intensive inpatient treatment; however, when the child is no longer in an emergency situation, community-based or outpatient programs may be more appropriate. (7) After receiving the appropriate treatment in the hospital, a child often becomes "stuck" in the hospital because appropriate outpatient programs are unavailable. (8) The required services are frequently unavailable when the patient needs them, and children are hospitalized or institutionalized longer than necessary. (9)

   Across the country, advocates for mentally ill children sue state agencies and persuasively argue that the states are legally required to remedy the mental health care system by implementing community-based or wraparound services. (10) Cases arise under the Americans with Disabilities Act (ADA), the Individuals with Disabilities Education Act (IDEA), and the Medicaid Act. (11) This Note will focus on the cases brought under the early and periodic screening, diagnostic, and treatment services (EPSDT) requirement of the Medicaid Act. (12)

   Part II of this Note will examine "stuck kids" and wraparound services, as they relate to the legal arguments made by child advocates. (13) Part III will briefly explain the cases brought on behalf of emotionally disturbed children under the ADA and IDEA. (14) In Part IV, the Medicaid Act and the EPSDT requirements are explained. (15) Additionally, Part IV will highlight the significant cases shaping the legal interpretations of EPSDT requirements and how they relate to community-based care for children with serious emotional disturbances. (16) This Note will then analyze, in Part V, the winning arguments of child advocates and the unreliable relief that states provide after Medicaid-eligible children win in court. (17)

   Part VI discloses the conclusion that the advocates' arguments for individualized, community-based services for all children are morally and legally correct, but difficult to implement through court action due to economic and administrative reasons. (18) Advocates will continue to win cases, but courts will most likely only require states to meet the minimal requirements of the Medicaid Act. (19)

2. STUCK KIDS AND THE WRAPAROUND MOVEMENT

   For the past sixty years, the United States's policy has moved towards deinstitutionalizing the mental health system and moving it back into the community. (20) Critics argue that the deinstitutionalization of America's mental health system was handled poorly. (21) In 1963, Congress allocated federal funds to build and staff community-based mental health centers by enacting both the Community Mental Health Centers Act and the Mental Retardation and Community Mental Health Centers Construction Act. (22) Through these Acts, Congress hoped to eventually "render traditional mental hospitals obsolete" and to provide effective care in the community for individuals who would otherwise spend their lives in state institutions. (23) Many state hospitals and institutions were closed, yet the care in most of the new replacement community-based facilities remained insufficient. (24) Even worse, the federal government consistently under-funded the mental health care system after it initially decreased federal funding in the 1970s. (25) People who previously received care in state hospitals could not always find adequate care in these new community-based facilities. (26) Those lacking adequate care instead moved in and out of mental hospitals, visited emergency rooms during emotional crises, stayed in medical wards until beds in the psychiatric ward were vacated, and became entangled in the criminal justice system. (27) Many individuals with mental illnesses became worse off in the under-funded, deinstitutionalized system than they were in the pre-existing institutionalized system. (28)

   Despite efforts to deinstitutionalize, the use of inpatient services by mentally ill children increased as the federal government focused on expanding community-based services. (29) Children seeking community-based mental health services faced exceptionally long waiting lists and became "stuck" in improper levels of care due to difficulties in accessing services. (30) Quickly, a phenomenon known as "stuck kids" or "kidlock" began to emerge. (31) "A 'stuck kid' is a child who, although ready for discharge from a psychiatric facility, hospital, or residential treatment center, is unable to leave that facility because an appropriate placement is not available." (32) Consequently, children are either in hospital settings longer than medically necessary because there are no alternative community-based treatment facilities available, or they are left without adequate treatment during crisis episodes because there are no spaces available to them in hospitals. (33) As a result, children's mental health services are primarily available to children in crisis situations who are in immediate and serious need of care. (34) To stop the cycle of crisis-orientated care, child advocates fight for access to individualized, appropriate, and community-based services before children's symptoms reach an emergency level. (35)

   The term "wraparound" emerged in the 1980s to describe "the application of an array of comprehensive community-based services to individual families." (36) Wraparound services provide individually designed, team-based treatment plans for every patient. (37) Every wraparound plan is flexible, meeting the unique needs of each child and often focuses on keeping the child with his or her family. (38) Home-based services are often priced lower than crisis-orientated services so they are both more responsive to the patient and cheaper for the state's budget. (39) A few states offer comprehensive wraparound services to children through the state Medicaid program; however, most states do not offer comprehensive programs to children with mental illness. (40) Mentally ill children, their families, and advocates have brought winning litigation against state agencies demanding that states provide mentally ill children with the individualized, community-based care they need. (41) Advocates hope that the mental health system will eventually offer: home and community-based care, family partnerships, comprehensive services and supports, cultural competence, individualized care, evidence-based practices, coordination of service delivery, early identification and intervention, and accountability. (42)

3. THE INDIVIDUALS WITH DISABILITIES EDUCATION ACT AND THE AMERICANS WITH DISABILITIES ACT

   Congress passed the Individuals with Disabilities Education Act in 1975 to create a nationwide policy addressing special education needs and to integrate disabled children into the public education system. (43) Cases brought under the IDEA are largely ineffective at obtaining in-home services for children with SED because claims brought under the IDEA generally must be education related. (44) "[H]earing officers and courts have been reluctant to hold schools responsible for providing in-home ... services ... [unless an] advocate [has] a strong case that these services are necessary for educational purposes." (45)

   The IDEA statute does however provide a legal definition of serious emotional disturbance that advocates and courts commonly borrow. (46) A child has a serious emotional disturbance, and is classified as a "child with a disability" under the IDEA, when a doctor diagnoses the child with a mental illness and the child also displays impaired functioning that is expected to last for one year or more. (47) Children with mental illnesses such as attention deficit disorder, schizophrenia, depression, and bi-polar disorder may be classified as SED. (48)

   Children with emotional disturbance exhibit specific characteristics or behavior, including: difficulty with daily living tasks, difficulty meeting basic needs, extreme vulnerability to stress, increased tendency toward substance abuse, episodes of aggression, acting out or risk-taking that endangers themselves or others, depression or suicidal thoughts, actions or attempts, inability to form or sustain personal relationships, difficulty functioning in school, day care, or another normative setting, [and] bizarre thoughts and behaviors. (49) Like most children with a mental illness, children with SED require extensive and long-lasting medical and support services. (50)

   Congress enacted the ADA in 1990 to promote "equality of opportunity, full participation, independent living, and economic self-sufficiency" for people with disabilities. (51) Lawsuits brought under the ADA are based on equal...