Legal Rights to Autism Treatment Services for Children

Legal Rights to Autism Treatment Services for Children

On July 7, 2014 the Center for Medicaid and CHIP Services issued an Informational Bulletin addressing services available to children with autism spectrum disorder (ASD) available under the federal Medicaid program.  Autism spectrum disorder is a developmental disability that can cause significant social, communication and behavioral challenges.  A diagnosis of ASD now includes several conditions that used to be diagnosed separately: autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and Asperger syndrome.  These conditions are now all called autism spectrum disorder. Currently, the Center for Disease Control and Prevention (CDC) estimates that approximately 1 in 68 children has been identified with ASD.
Treatments for children with ASD can improve physical and mental development. Generally these treatments can be categorized in four categories: 1) behavioral and communication approaches; 2) dietary approaches; 3) medications; and 4) complementary and alternative medicine.  One popular treatment is Applied Behavioral Analysis (ABA), but there are other recognized treatments for children with ASD.
The federal Medicaid program may reimburse for services to address ASD through several different benefit categories.  Those categories include:

  • Other Licensed Practitioner services (OLP) services, defined as “medical or remedial care or services, other than physicians’ services, provided by licensed practitioners within the scope of practice as defined under State law.”  The state may elect to cover those providers under this section of their state plan.
  • Preventive Services (furnished by non-licensed practitioners), defined as “services recommended by a physician or other licensed practitioner of the healing arts within the scope of his practice under state law to—

(1)   Prevent disease, disability, and other health conditions or their progression;
(2)   Prolong life; and
(3)   Promote physical and mental health and efficiency”

  • Physical therapy, occupational therapy and services for individuals with speech, hearing and language disorders, prescribed by a physician or other licensed practitioner of the healing arts within the scope of his/her practice under state law and provided by or under the direction of a qualified therapist.
  • Medical services and long-term services and supports provided under the section 1915(c) Home and Community-Based Services waiver program.  For individuals under the age of 21 who are eligible for EPSDT services, an HCBS waiver could provide services and supports for ASD that are above and beyond other waiver services, such as respite care and day care.

EPSDT Benefit Requirements
Medicaid law defines the Early Periodic Screening, Diagnostic and Treatment (EPSDT) benefit to include a comprehensive array of preventive, diagnostic, and treatment services for low-income infants, children and adolescents under age 21.  States are required to arrange for and cover for eligible children any Medicaid coverable service listed in section 1905(a) of the Act that is determined to be medically necessary to correct or ameliorate any physical or behavioral conditions.  The EPSDT benefit is more robust than the Medicaid benefit package required for adults and is designed to assure that children receive early detection and preventive care, in addition to medically necessary treatment services, so that health problems are averted or diagnosed and treated as early as possible.  All children, including children with ASD, must receive EPSDT screenings designed to identify health and developmental issues, including ASD, as early as possible.  Behavioral manifestation is not assumed to be caused by the ASD.  EPSDT requires medically necessary diagnostic and treatment services.  When a screening examination indicates the need for further evaluation of a child’s health, the child should be appropriately referred for diagnosis and treatment without delay.  Ultimately, the goal of EPSDT is to assure that children get the health care they need, when they need it – the right care to the right child at the right time in the right setting.
The role of states is to make sure all covered services are available as well as to assure that families of enrolled children, including children with ASD, are aware of and have access to a broad range of services to meet the individual child’s needs; that is, all services that can be covered under section 1905(a), including licensed practitioners’ services; speech, occupational, and physical therapies; physician services; private duty nursing; personal care services; home health, medical equipment and supplies; rehabilitative services; and vision, hearing, and dental services.
If a service, supply or equipment that has been determined to be medically necessary for a child is not listed as covered (for adults) in a state’s Medicaid State Plan, the state will nonetheless need to arrange for and cover it for the child as long as the service or supply is included within the categories of mandatory and optional services listed in section 1905(a) of the Social Security Act. This longstanding coverage design is intended to ensure a comprehensive, high-quality health care benefit for eligible individuals under age 21, including for those with ASD, based on individual determinations of medical necessity.
Although coverage of applied behavioral analysis, which uses positive reinforcement and other techniques to encourage behavior change, isn’t explicitly required, advocates expect it will be covered.  “Since ABA is the most accepted, effective treatment that isn’t experimental and investigational, you can’t just exclude it entirely,” says Daniel Unumb, executive director of Autism Speaks’ legal resource center.
Caring for someone with autism costs more than $3 million over a lifetime, according to a 2007 study published in the Archives of Pediatrics and Adolescent Medicine.  Advocates argue that early intervention, even pricey applied behavioral analysis that may cost more than $50,000 annually, can save money in the long run.  Nearly half of children who receive early interventions such as applied behavioral analysis can achieve mainstream status, according to a 2005 study published in the American Journal of Mental Retardation.
Accessing ABA Therapy through Public Schools
According to Ohio disability attorney Frank Hickman, Applied Behavioral Analysis (ABA) services may be available as part of special education for children with autism.  The Individuals with Disabilities Education Act (IDEA) is the Federal law requiring states that receive certain types of federal funding to provide a Free, Appropriate Public Education (FAPE) to children aged 3 through 21 until graduation or GED.  The educational program must meet the unique needs of the child and be offered at no cost to parents. A program is appropriate if it enables the child to be involved in and make progress in the general education curriculum. In Deal v. Hamilton County Board of Education, 392 F. 3d 840 (2004), the 6th Circuit Court of Appeals held:

  • IDEA requires an IEP to “confer a ‘meaningful educational benefit’ gauged in relation to the potential of the child at issue.”
  • “[T]he intent of Congress: …to require a program providing a meaningful educational benefit toward the goal of self-sufficiency.”
  • “Some” benefit is not enough.

Services must include academic and related services which are necessary to allow the child to benefit educationally from instruction.  Bd. of Educ. v. Rowley, 458 U.S. 176 (1982).  Examples of related services include transportation, speech/language, PT, OT, counseling, and services in specialized settings, including residential settings.
To be eligible for services under IDEA, a child must fit within specified categories, including autism, and demonstrate that the disability has an adverse effect on educational performance.
If a child is suspected of having a disability, school districts must conduct comprehensive evaluations to determine whether students are eligible for services under IDEA and, once eligible, to determine necessary services.  The evaluation must be multi-factored and multi-disciplinary and assess all areas of disability, including academic, functional, and developmental needs.  If the parents are dissatisfied with the evaluation, they may request an independent expert evaluation by a qualified examiner who is not employed by the district responsible for the child’s education.  Under certain circumstances, the parents may require the school to pay for the independent evaluation.
Once a child has been determined to be eligible, the School District must develop an Individualized Education Plan (IEP). The IEP must address academic, functional and developmental issues identified in the Comprehensive Evaluation and other identified needs. The IEP must include a number of elements, including related services which are necessary to allow the child to make reasonable progress in the curriculum and to benefit educationally from instruction.  The IDEA requires that “related services and supplementary aids and services, [be] based on peer-reviewed research to the extent practicable.”
If parents are dissatisfied with the IEP, they can make a unilateral placement and seek recovery of costs from the district.  In order to do so, the parents must show (1) that the IEP is inadequate to meet the needs of their child and (2) the new placement is adequate.  The parents must give the district prior notice either at an IEP meeting preceding the unilateral placement or by written notice, given to the District at least ten business days before the placement begins.  This process requires strict conformity with the rules, so parents should consult with an attorney before initiating a unilateral placement.
Accessing ABA Services under IDEA
Parents may require a school district to fund Applied Behavioral Analysis (ABA) services if the parents can show that such services are necessary to allow the child to make reasonable progress in the curriculum and to benefit educationally from instruction.  There must be sufficient evidence from a qualified professional which supports this conclusion. The qualified professional may be a child’s therapist, an independent evaluator with appropriate qualifications, or district staff.
A district can use any educational methodology that will allow a child with a disability to receive an educational benefit.  Only when a child requires a particular methodology to receive FAPE will a district have an obligation to use that method.
A number of courts have found that a school district is responsible for services in the home, as well as in the school.  The 2011 case of New Milford Bd. of Educ. v. C.R., found that the in-home ABA program supplied by the parents, along with the school-based ABA program, were both necessary to provide the child with a meaningful education.
If Parents and the District Disagree
The IDEA offers mediation and due process to resolve issues between parents and the school district when informal efforts have failed.
Mediation is generally an effective tool to resolve most disputes.  Due process is similar to a trial and involves considerable time and expense. Due process can result in orders affecting placement, program, services, supports, or compensatory education.
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