Our Commitment to Supporting Individuals on the Autism Spectrum and their Families
The latest figures from the Centers for Disease Control and Prevention (CDC) reaffirm that autism is a critical public health issue that deeply impacts the lives of millions of Americans. The Obama administration recognizes the importance of this health issue and it continues to work to improve the lives of individuals on the autism spectrum and their families by supporting research, improving supports and services, and working closely with the entire community.
Autism is a developmental disability characterized, in varying degrees, by difficulties in social interaction, verbal and nonverbal communication and repetitive behaviors. Early identification and intervention can greatly improve a child’s trajectory in life. Parents should talk with their child’s doctor as soon as possible if they believe there is a possibility that their child has autism or other developmental delays.
The Combating Autism Act and the Interagency Autism Coordinating Committee (IACC)
The Combating Autism Act of 2006 (CAA - P.L. 109-416) and Combating Autism Reauthorization Act of 2011 (CARA - P.L. 112-32) authorize autism spectrum disorder (ASD) research and services activities across HHS and authorize the Interagency Autism Coordinating Committee (IACC), a Federal advisory committee that coordinates ASD-related efforts across HHS, partner federal agencies and private stakeholder groups, and advises the Secretary of HHS on issues related to ASD. Through its inclusion of both Federal and public stakeholder members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.
The IACC’s work includes the development and annual updating of the IACC Strategic Plan for ASD Research, an annual IACC Summary of Advances in ASD Research, activities to monitor the portfolio of federal and privately funded autism research and other federal ASD activities, and meetings held throughout the year. More information about the IACC, its activities and publications can be found on the IACC website, at: www.iacc.hhs.gov.
The Affordable Care Act and Autism and Related Conditions
The Affordable Care Act contains important provisions for individuals with autism and related conditions and their families. Under the new health care law:
- Most health insurance plans are no longer allowed to deny, limit, exclude or charge more for coverage to anyone based on a pre-existing condition, including autism and related conditions.
- All Marketplace health plans and most other private insurance plans must cover preventive services for children without charging a copayment or coinsurance. This includes autism screening for children at 18 and 24 months.
- The Affordable Care Act prohibits health plans from putting a lifetime dollar limit on most benefits you receive. The law also does away with annual dollar limits a health plan can place on most of your benefits. Prior to the Affordable Care Act, many plans set a dollar limit on what they would spend for covered benefits during the time individuals were enrolled in the plan, leaving individuals on the autism spectrum and their families to pay the cost of all care exceeding that limit.
- Young adults can remain covered under their parents’ insurance up to the age of 26. Already, 3.1 million more young people have been insured through this provision of the new law. For a young adult with autism or related conditions and their family, that means more flexibility, more options and greater piece of mind.
- Individuals on the autism spectrum and families of children on the autism spectrum now have expanded access to affordable insurance options through the new Health Insurance Marketplace and expansion in Medicaid.
- New health plans sold in the individual and small group markets, including the Marketplace, must cover “essential health benefits,” including hospitalizations, preventive services, and prescription drugs, to help ensure you have the coverage you need to stay healthy. Health insurers will also have annual out-of-pocket limits to protect families’ incomes against the high cost of health care services.
Tracking Autism Spectrum Disorder
- CDC’s Autism and Developmental Disabilities Monitoring (ADDM) Network is the only collaborative network to track the number and characteristics of children with autism spectrum disorder (ASD) in multiple communities in the United States. The ADDM Network is able to look at not only how many children have ASD, but also which groups of children are more likely to be identified with ASD and at what age they are likely to be diagnosed.
- CDC’s Metropolitan Atlanta Developmental Disabilities Surveillance Program (MADDSP) is an ongoing and systematic monitoring of prevalence of selected developmental disabilities (intellectual disability, hearing loss, vision impairment, cerebral palsy, and autism spectrum disorders) according to various demographic characteristics of children who reside in metropolitan Atlanta. MADDSP serves as the model for the ADDM Network and participates as a site in this collaboration.
Early Detection and Collaboration Between Providers and Families
- “Birth to Five: Watch Me Thrive!” is an initiative to promote developmental and behavioral screening and support. The initiative encourages early childhood experts – including practitioners in early care and education, primary health care, early intervention, child welfare and mental health – to work together with children and their families. Launched on March 27th, Birth to Five includes a compendium that summarizes implementation, reliability, and validity data on developmental and behavioral screening tools; a series of “User Guides” targeted to a wide array of audiences (e.g. teachers, pediatricians, parents, social workers, community leaders) that define screening and its importance; and an electronic toolkit that provides informational resources for each intended audience. The initiative was spearheaded by ACF in collaboration with multiple HHS offices including ACL, HRSA, CDC, NICHD, SAMHSA, and the Office of Special Education Programs and the Department of Education.
- The “Learn the Signs. Act Early.” program aims to improve early identification of children with autism and other developmental disabilities so they can get the services they need. Many children with a developmental disability are not identified until after entering school; however, early intervention can have a significant impact on a child's ability to learn new skills. CDC's program promotes awareness of healthy developmental milestones in early childhood, promotes early identification of signs of delay, and works with state and national partners to enhance coordination of efforts at the State level to improve screening and referral to early intervention services.
- The Administration for Children and Families (ACF) created a web page with resources about ASD made specifically for early childhood providers. The web page, which includes ASD fact sheets, tips written for early childhood providers, and links to many other sites that offer free, high quality resources for families and providers, is an excellent gateway to learn more about and support our youngest children with ASD and other developmental disabilities in inclusive environments.
Supports and Services for Individuals on the Autism Spectrum and their Families
Through the Combating Autism Act, the Department of Health and Human Services (HHS) is investing in strategies to enable infants, children and adolescents who have or are at risk of developing autism and other developmental disabilities to reach their full potential by:
- Developing a system of services that includes screening children early for possible autism and other developmental disabilities; conducting early, interdisciplinary, evaluations to confirm or rule out autism and other developmental disabilities; and providing evidence-based, early interventions when a diagnosis is confirmed.
- Awarding 13 State grants in FY 2013 (9 state implementation grants and 4 state planning grants) to improve access to comprehensive, coordinated health care and related services for children and youth with autism and other developmental disabilities. In 2011, planning grants were added as an additional strategy to help states that had limited resources and structure in place to improve autism services.
- Addressing the shortage of health care professionals who are qualified to provide screening and diagnostic evaluation for autism and other developmental disabilities, HHS awarded 43 Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) interdisciplinary training programs, providing services and training to 41 States, with many extending training and services across multiple States, and 10 Developmental-Behavioral Pediatrics (DBP) training programs. These programs support long-term, graduate level interdisciplinary training as well as interdisciplinary services and care. LEND and DBP programs expanded the number of professionals in the pipeline who are qualified to provide screening and diagnostic evaluation for autism by increasing the number of trainees who receive a broad range of autism-focused training and continuing education.
HHS has also partnered with The Arc of the United States to establish a National Resource and Information Center on Autism Spectrum Disorder and Other Developmental Disabilities (Center). The Autism NOW Project (http://www.autismNOW.org ) is collaborating with several partners, including the Autistic Self Advocacy Network, the Autism Society of America and several Autism and Developmental Disabilities Network entities to engage and leverage a national network of disability, aging, and family organizations. The Center provides high-quality resources and information related to community-based experiences (e.g. education, employment, recreation, transportation, early intervention and child care), and evidence-based interventions for autism service providers, researchers, families and people with autism and related conditions.
Maternal and Child Health
The Health Resources Administration’s (HRSA) Maternal and Child Health (MCH) research investments in autism and related conditions include critical efforts that address the health care needs and improve services that result in improved health and well-being of children and adolescents with Autism Spectrum Disorder and other developmental disabilities and their families. Consistent with HRSA’s mission as the access agency to provide services to underserved populations, these autism intervention research programs have a critical role in addressing the needs of underserved populations and barriers to receipt of evidence-based interventions.
Investing in Autism Spectrum Disorder (ASD) Research
Research at the Centers for Disease Control and Prevention (CDC)
Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network. CDC has established regional centers of excellence for autism spectrum disorder (ASD) and other developmental disabilities. These centers make up the Centers for Autism and Developmental Disabilities Research and Epidemiology (CADDRE) Network. The CADDRE Network is working on the Study to Explore Early Development (SEED).
CDC’s Study to Explore Early Development (SEED) is a multi-year, multisite study in six diverse areas in the United States. SEED is one of the largest studies of ASD in the United States. The SEED research study sites are located in California, Colorado, Georgia, Maryland, North Carolina, and Pennsylvania. There are three study groups in SEED: 1) children with ASD, 2) children with other developmental disabilities, and 3) children without developmental disabilities. SEED collects in-depth information from participants to answer questions about many factors that might put children at risk for ASD, including genetic, environmental, pregnancy, and behavioral factors.
Research at the National Institutes of Health (NIH)
In FY 2013, the National Institutes of Health (NIH) invested approximately $186 million in research on ASD. This program of research is guided in part by the objectives set out in the IACC Strategic Plan with particular research focus on:
- Improving screening and diagnosis of ASD;
- Testing and developing therapeutic treatments for the symptoms of ASD;
- Identifying potential risk factors that may be linked to the cause(s) of ASD; and
- Developing effective supports, services and interventions for individuals with ASD and their families
Examples of autism research investments include:
Autism Centers of Excellence (ACE). This NIH-wide program launched in 2007 includes three centers focusing on brain development, risk and protective factors, and interventions targeting social behavior and minimally verbal ASD—and eight networks focusing on topics such as gender differences in ASD, health disparities in diagnosis and access to care, early intervention trials, comparison of treatment approaches for minimally verbal children, brain development in high-risk infants, and novel treatment approaches using oxytocin to improve social functioning. Data from the ACEs and other NIH-funded ASD research is expected to be shared with researchers across the U.S. and around the world through the NIH National Database for Autism Research, maximizing the use of the data to accelerate ASD research.
National Database for Autism Research. This NIH-supported resource provides qualified researchers access to an extensive database of biomedical information on individuals with ASD and their families. Current NDAR users have access to data from 70,000 research participants including data from privately controlled federated repositories. Containing 400 terabytes of data, NDAR provides scientists a secure platform for discovery using secondary data analysis and computational science techniques.
Research to Improve Screening and Diagnosis of ASD. Findings from NIH-supported research are identifying early signs of ASD, including differences under the age of one in social behavior, eye contact, communication, repetitive behaviors and brain structure in children who later develop ASD. Research is also supporting the development of new tools to help clinicians identify infants and toddlers potentially at-risk for developing ASD.
Research to Develop Treatments and Interventions for ASD. NIH is funding clinical trials to test novel early interventions that can help toddler and young children make gains in their cognitive and social development and communication skills. NIH is also supporting research on interventions to help older children and adults improve in areas such as social and daily living skills to help them function better in a variety of settings and prepare for life transitions.
Research to Identify ASD Risk Factors. NIH-supported research has continued to investigate the roles of both genetic and environmental risk factors that may play a role in causing ASD. Recent studies have found that genes associated with ASD risk are expressed at specific times and places in the fetal brain during development, shedding more light on the processes of early development of ASD. Epidemiological studies have found potential links between ASD risk and certain environmental factors such as prenatal exposure to air pollution and maternal infection, as well as increased risk associated with advanced maternal and paternal age at conception and short inter-pregnancy interval. Prenatal folic acid supplements have been shown in studies to be associated with reduction in ASD risk.
Research to Develop Innovative Services and Interventions for People with ASD. NIH has encouraged and supported cutting-edge research to address the need for high quality services and supports by individuals and families affected by ASD. Examples include development of approaches to make interventions more accessible across a wider variety of settings and tools to help youth with autism and related conditions or other disabilities develop and maintain skills needed for successful employment. In 2013 NIH issued a set of initiatives to target research on services implementation for people with ASD across the lifespan. The first initiative supports studies of models for coordination of ASD identification and early intervention services for children in the first 2 years of life. The second focuses on models to assist adolescents with ASD to transition to adult supports and services. The third addresses development of adult ASD service strategies, focusing on areas such as employment, social relationships, physical and mental health, and independent living. Awards are expected in 2014.
Supporting State Efforts to Address Autism:
State Councils and Protection and Advocacy Systems. These entities partner with state governments, local communities, self-advocates, family members and the private sector to help people with developmental disabilities reach their maximum potential through greater independence, productivity and increased integration in their communities.
State Protection and Advocacy Agencies. The State Protection and Advocacy Agencies (P&As) provide services to individuals with developmental disabilities based on the Developmental Disabilities Assistance and Bill of Rights Act of 2000. These efforts include: the protection and advocacy of legal and human rights; information and referral; investigation of complaints of violation of rights of individuals with developmental disabilities, including autism; working to resolve complaints through mediation, alternative dispute resolution and litigation.
State Councils on Developmental Disabilities. The State Councils on Developmental Disabilities (SCDD) are charged with identifying the most pressing needs of people with developmental disabilities in their state or territory. Councils work to address these needs through systems change and capacity building efforts that promote self-determination, integration and inclusion for people with developmental disabilities. SCDD efforts include: training; technical assistance; barrier elimination; coalition development and citizen participation; informing policymakers; advocacy, capacity building and systems change; demonstration of new approaches to services and supports.
Medicare & Medicaid and Autism and Related Conditions
The Centers for Medicare & Medicaid Services (CMS) provides a wide array of health-related services to beneficiaries with autism and related conditions enrolled in Medicaid, Medicare, and the Children’s Health Insurance Program.
The Medicaid program in particular supports children, youth, and adults with autism and related conditions who have limited income and resources, and meet certain eligibility criteria. Because Medicaid is a State-based program, available care and services may vary from State to State, and according to age. In addition to physical health services, Medicaid programs provide strong support for community living through home and community-based services such as respite care and employment supports. A list of Medicaid “waiver” and demonstration programs, some that assist people with autism and related conditions, is available here.
CMS has also engaged in research on autism and related conditions services, publishing a 2010 environmental scan describing the evidence base on autism services, and a 2011 report that described autism services activity in nine states.
If You’re Concerned
If you think your child might have an ASD or you think there could be a problem with the way your child plays, learns, speaks, or acts, contact your child’s doctor, and share your concerns.
If you or the doctor is still concerned, ask the doctor for a referral to a specialist who can do a more in-depth evaluation of your child. Specialists who can do a more in-depth evaluation and make a diagnosis include:
- Developmental Pediatricians (doctors who have special training in child development and children with special needs)
- Child Neurologists (doctors who work on the brain, spine, and nerves)
- Child Psychologists or Psychiatrists (doctors who know about the human mind)
At the same time, call your state’s public early childhood system to request a free evaluation to find out if your child qualifies for intervention services. This is sometimes called a Child Find evaluation. You do not need to wait for a doctor’s referral or a medical diagnosis to make this call.
Where to call for a free evaluation from the state depends on your child’s age:
- If your child is not yet 3 years old, contact your local early intervention system.
- You can find the right contact information for your state by calling the Early Childhood Technical Assistance Center (ECTA) at 919-962-2001.
- Or visit the ECTA website.
- If your child is 3 years old or older, contact your local public school system.
- Even if your child is not yet old enough for kindergarten or enrolled in a public school, call your local elementary school or board of education and ask to speak with someone who can help you have your child evaluated.
- If you’re not sure who to contact, call the Early Childhood Technical Assistance Center (ECTA) at 919-962-2001.
- Or visit the ECTA website.
Research shows that early intervention services can greatly improve a child’s development., In order to make sure your child reaches his or her full potential, it is very important to get help for an ASD as soon as possible.