Prevalence rates of autism are at an all-time high, and we know that early and intensive treatment produces the optimal outcomes for autistic individuals. According to the CDC, “most children (85%) identified with ASD had concerns about their development noted in the records by 3 years of age.” However, less than half (42%) received a developmental evaluation by 3 years of age, while 19% received evaluations between ages 3 and 4, and 39% of children received evaluations after the age of 4.
With many providers having waitlists of 12 to 18 months or more, access to qualified healthcare providers who can diagnose autism and access to skilled clinicians who can provide autism services within a reasonable amount of time are lacking and greatly reduce the opportunities for children to access timely intervention. Increasing timely access to services is paramount for individuals with autism.
While there are established standards for access to care; state standards vary widely, meaning that different states have different criteria for determining whether individuals’ access is adequate. For example, some states may require 1 primary care provider for every 100 individuals enrolled in a health plan whereas another state might require 1 primary care provider for every 2,500 individuals enrolled in a health plan. There may also be standards related to how much travel time or how far away a provider is from a patient (time and distance). For example, some states may have a 30 mile radius or 30 minute travel time for a patient to see their provider to be considered adequate access. Network adequacy standards may also differ based on the type of healthcare provider. If after researching your state specific network adequacy standards you determine that your desired provider does not have adequate availability, you can contact your health plan to advise them that they do not have an adequate network of diagnosing or treating providers.
Several state and federal laws protect an individual’s right to access to care. The following laws are most applicable for caregivers of children and adolescents with autism spectrum disorder:
- Early and Periodic Screening, Diagnostic and Treatment (EPSDT)
- Individuals with Disabilities Education Act (IDEA) Part C
- Individuals with Disabilities Education Act (IDEA) Part B
- Section 504 of the Rehabilitation Act of 1973
- Individual State Mandates
- Patient Protection and Affordable Care Act
- Mental Health Parity and Addiction Equity Act (MHPAEA)
Early and Periodic Screening, Diagnostic and Treatment
Early and Periodic Screening, Diagnostic and Treatment Benefit (EPSDT) is a federal law requiring services under the Medicaid program for “categorically” or “medically needy” individuals under age 21. As described in Federal rules, states’ Medicaid plans are required to ensure that health concerns are screened for, diagnosed, and treated early before these concerns become more complex [and treatment more costly].
The EPSDT benefit requires Medicaid to “cover any service that is necessary to treat or ameliorate a defect, physical and mental illness, or a condition identified by a screen, regardless of whether the service or item is otherwise included in the state’s Medicaid plan.” Services under EPSDT must be sufficient in amount, duration, or scope to reasonably achieve their purpose [emphasis added]. The amount, duration, or scope of EPSDT services to recipients may not be denied or reduced solely because of the diagnosis, type of illness, or condition.
IDEA Part C
Under the Individuals with Disabilities Education Act (IDEA) – Part C, children with developmental delays and disabilities and their families are eligible for Early Intervention services and supports up to the age of three. Services covered under Early Intervention are tailored to meet the child’s individual needs, are documented in an Individualized Family Service Plan (IFSP), and may include:
- Assistive technology (devices a child might need)
- Audiology or hearing services
- Speech and language services
- Counseling and training for a family
- Medical services
- Nursing services
- Nutrition services
- Occupational therapy
- Physical therapy
- Psychological services
IDEA Part B
The stated purpose of the IDEA is:
- to ensure that all children with disabilities have available to them a free appropriate public education that emphasizes special education and related services designed to meet their unique needs and prepare them for further education, employment, and independent living;
- to ensure that the rights of children with disabilities and parents of such children are protected; and to assess and ensure the effectiveness of efforts to educate children with disabilities.
- to ensure that educators and parents have the necessary tools to improve educational results for children with disabilities by supporting system improvement activities; coordinated research and personnel preparation; coordinated technical assistance, dissemination, and support; and technology development and media services.
Services for school-aged children with developmental disabilities (3 through 21 years of age) are provided free of charge through the public school system. Among the services covered under IDEA are special education; related services such as physical, occupational, and speech therapy; and supplementary aids and services, such as adaptive equipment or special communication systems.
Before Part B services start, an Individualized Education Plan (IEP) is developed for children 3 through 21 years of age who qualify for special education services from school districts. An IEP is similar to an IFSP, but more focused on the child’s goals rather than on the family’s goals; however family input is still an important component. Goals may address communication, increasing social skills, or reducing behaviors that interfere with learning.
Under both IDEA Parts B and C, parents are provided with a Notice of Procedural Safeguards, which provides a full explanation of their rights covered under IDEA and provides information on the provisions in special education law that enables parents to be involved in educational decisions about their child.
Compulsory age for school enrollment is between 5 and 8 depending on each state. It is important to note that an IEP will be developed to address skills that are educational or academic in nature, whereas services funded through a health plan will focus on medically necessary intervention. While some overlap in goals between the two plans may occur, the plans and services are distinctly separate. Making the decision to enroll your child in school at the age of three or waiting until compulsory aged should be based on your child’s individual strengths, needs, and progress with their current treatment providers.
Section 504 of the Rehabilitation Act of 1973
The Section 504 regulations require a school district to provide a “free appropriate public education” (FAPE) to each qualified student with a disability who is in the school district’s jurisdiction, regardless of the nature or severity of the disability. According to the US Department of Education, Section 504 requires schools to provide students with disabilities appropriate educational services designed to meet their individual needs to the same extent as the needs of students without disabilities are met. An appropriate education for a student with a disability under the Section 504 regulations could consist of education in regular classrooms, education in regular classes with supplementary services, and/or special education and related services. In general, the goal of Section 504 is to accommodate students with disabilities in general education classrooms without discrimination. These accommodations should be documented in a plan, known as a 504 plan or Individual Accommodation Plan (IAP).
The goal of an IAP or 504 plan is to ensure a student has equitable access to a learning environment whereas an IEP focuses on educational benefits and often includes direct services such as ABA, speech, or occupational therapy. Both the IEP and the 504 are federally mandated services provided free of charge to students in public schools. Both require annual meetings to review and update the plan and families/guardians are required to be invited and included in all planning decisions. Parents may also invite outside service providers, advocates, attorneys, or anyone else they would like to have attend the meetings. Both plans require three year “recertifications” to assess continuing need for services.
Examples of accommodations under Section 504 may include environmental modifications such as sensory breaks, visual schedules, or use of noise canceling headphones.
Individual State Mandates
Coverage of Applied Behavior Analysis services through commercial health plans is mandated in all 50 states. The laws regarding coverage vary by state, and some may have limits, including age caps; however, advocates continue to work to strengthen, update, and amend state mandates with limits on access to treatment. State mandates do not relieve the public schools from their obligation to provide a free and appropriate education under IDEA Part B once the child is enrolled. It is important to note that state mandates do not include self-funded plans, as those are regulated by federal law, specifically the Employee Retirement Income Security Act (ERISA).
Affordable Care Act (ACA)
Under the Affordable Care Act, most health insurance plans are no longer permitted to deny, limit, exclude or charge more for coverage to anyone based on a pre-existing condition, including autism and related conditions. Additionally, plans must cover all essential health benefits, including coverage of those treatments needed for children and adults with autism. The ACA also prohibits discrimination on the basis of race, color, national origin, age, disability, or sex (including pregnancy, sexual orientation, gender identity, and sex characteristics) in covered health programs or activities. So, if your health plan changes after your child is diagnosed with autism, your new health plan cannot deny or limit coverage and you cannot pay more for your policy as a result.
Mental Health Parity Addiction and Equity Act (MHPAEA)
MHPAEA ensures that health plans treat mental health and substance use disorders the same way that they treat other health issues. This means insurers cannot have additional limitations, higher costs, lower coverage for mental health benefits, including treatment of autism. MHPAEA requires group health plans and insurers that offer mental health and substance use disorder benefits to provide coverage that is comparable to their coverage for general medical and surgical (medical/surgical) care. Limitations on mental health and substance use disorder benefits (such as copayments, visit limits, and preauthorization requirements) must generally be comparable with those for medical/surgical benefits. What this means for your family is that copays cannot be higher for your autism service provider than they are for other providers. If there are limits to how many hours of treatment they will cover, they should have similar limits in place on medical visits and treatments for chronic medical conditions such as diabetes or dialysis.
Given the rapidly increasing prevalence rates of ASD and what we know about barriers to access and early intensive treatment for best outcomes, it is important for families to know about laws that protect an individual’s rights and options to timely access to care.
Eileen M. Mendes is Vice President of Compliance and Quality and Cathy Booth, CCC-SLP, BCBA, LABA, is Vice President of Clinical Quality at Autism Care Partners. Ashley Williams, PhD, LABA, BCBA-D, is Senior Director of Clinical Services at Learn Behavioral.
The difficult part is advocating for change. Many of the funding sources under state medicaid plans, MCOs, or Ins Cos don’t listen to contracted provider complaints and many parents don’t have the time, energy, or general understanding of the delivery system to advocate for changes that likely will require legal action. In addition, as the CARD bankruptcy documented often the funding sources don’t pay sufficient reimbursement rates to maintain or recruit staff necessary to ensure an adequate network. In addition, the administrative structure and regulatory burden on contracted providers are duplicative, take money allocated for services to pay for a bloated administration system, and make it difficult to get needed information or access to services.