Obama Administration’s Commitment to Supporting Individuals on the Autism Spectrum and their Families

HHS Autism Information

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)

In 2011, President Obama signed into law the “Combating Autism Reauthorization Act of 2011,” which continues important investments in research, early detection and supports and services for both children and adults on the autism spectrum.  It also reauthorizes the Interagency Autism Coordinating Committee (IACC), which is a Federal advisory committee that coordinates all efforts within the Department of Health and Human Services concerning autism and advises the Secretary of Health and Human Services on Federal activities related to autism. Through its inclusion of both Federal and public members, the IACC helps to ensure that a wide range of ideas and perspectives are represented and discussed in a public forum.

On March 29, 2012, we announced the newest members of the Coordinating Committee, including representatives of the diverse individuals and families impacted by autism and related conditions.

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 for 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.
• HHS has awarded 16 State Implementation Grants since 2009 to improve access to comprehensive, coordinated health care and related services for children and youth with autism and other developmental disabilities. Each State receives approximately, $220,000-$300,000 per year. 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 and each received $75,000 per year.
• To address the shortage of health care professionals who are qualified to provide screening and diagnostic evaluation for autism and other developmental disabilities, Leadership Education in Neurodevelopmental and Other Related Disabilities (LEND) programs support long-term, graduate level interdisciplinary training as well as interdisciplinary services and care. With Combating Autism Act funding totaling $106.5 million, LEND 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 ADD 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

HRSA’s 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 ASD 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 Research

In FY 2012, the National Institutes of Health (NIH) invested an estimated $169 million in research on autism and related conditions. 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 autism and related conditions;
• Developing effective supports, services and interventions for individuals with autism and related conditions and their families;
• Testing and developing therapeutic treatments for the symptoms of autism and related conditions; and
• Identifying potential environmental risk factors that may be linked to the cause(s) of autism and related conditions.

Examples of autism research investments include:

Autism Centers of Excellence (ACE). This NIH-wide program includes six centers, focusing research on risk factors for autism and related conditions, early brain development and functioning, and the biological bases of core autism and related conditions symptoms—repetitive behaviors, communication difficulties, and social impairment—and five networks focusing on causes, characterization, and improved treatment.   Data from the ACEs, along with all new NIH-funded autism and related conditions research is expected to be shared through the NIH National Database for Autism Research

National Database for Autism Research.  This NIH-supported resource provides qualified autism and related conditions researchers access to an extensive database of biomedical information on individuals with autism and related conditions and their families. Current NDAR users have access to data from 25,000 research participants. Most recently, data from Autism Speaks’ Autism Genetic Resource Exchange (AGRE) and Autism Tissue Program were federated and now share data through NDAR. The data is protected by a Certificate of Confidentiality, which protects the privacy of study participants.

Identifying autism and related conditions Risk-Factors.  NIH-supported research has continued to investigate the causes of autism and related conditions and in particular the possible role that environmental risk-factors may play in causing autism and related conditions, particularly with regard to how genetic vulnerability and environmental exposures may place individuals at greater risk for autism and related conditions.

Screening and diagnosis of autism and related conditions. Findings from NIH-supported research are shedding new light on how cognition differs among children with autism and related conditions in comparison to children who do not have autism and related conditions, as well as how new tools might help clinicians and researchers identify infants and toddlers potentially at-risk for autism and related conditions.

Research to improve services and interventions for autism and related conditions.  NIH has encouraged and supported cutting-edge research to address the need for services and behavioral interventions needed by individuals with autism and related conditions and their families such as studies of behavioral interventions among very young toddlers; studies of social skills intervention for high functioning children with autism and related conditions and tools to help youth with autism and related conditions or other disabilities develop and maintain skills needed for successful employment.

Autism Intervention Research Networks on Behavioral Health and Physical Health. The Autism Intervention Research Networks on Behavioral Health (AIR-B) and Physical Health (AIR-P) conduct research on evidence-based practices, develop and update guidelines, validate tools for interventions, and disseminate critical information.

• The AIR-P Network ($4 million per year to General Hospital Corporation of Boston) has built a strong collaborative network of researchers and clinicians across 14 sites in the U.S. and Canada.  Key activities of the network are also conducted through collaboration with families, national organizations, and other HRSA-supported autism programs. The AIR-P Network has implemented 11 multi-site research studies addressing the most pressing symptoms associated with underlying medical conditions including sleep problems, gastrointestinal disorders, nutritional deficiencies and metabolic conditions. The AIR-P Network has developed guidelines addressing insomnia and constipation in children with autism and related conditions and is actively engaged in developing additional guidelines and toolkits for practitioners and families.
• The AIR-B Network ($2 million per year to UCLA) has built a strong collaborative network of researchers across seven sites within the U.S. In addition to the development of treatment guidelines for social, adaptive, and communication issues associated with autism and related conditions, the AIR-B Network has also developed tools for use in assessing children’s social engagement and communication skills. They have also implemented four multisite research studies designed to improve children’s joint attention and engagement across everyday activities, as well as their social skills with peers.

Developmental Behavioral Pediatrics Research Network (DBPNet).  In addition to NIH’s investments, HHS’s Health Resources and Services Administration is implementing the Developmental Behavioral Pediatrics Research Network The DBPNet ($200,000 per year to Children’s Hospital of Philadelphia) has established a collaborative multi-center scientific and clinical research network that promotes coordinated research activities and addresses health issues for children with autism and related conditions and other developmental disabilities across 12 sites.  

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. In FY 2012, $40.9 million was invested in these efforts.

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. In FY 2012, $74.8 million in federal funding was invested in these efforts.

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 at:  http://www.cms.gov/MedicaidStWaivProgDemoPGI/MWDL/list.asp?intNumPerPage=all.

CMS has also engaged in research on autism and related conditions services, publishing a 2010 environmental scan describing the evidence base on autism services, available at: http://www.impaqint.com/files/4-content/1-6-publications/1-6-2-project-reports/finalasdreport.pdf    and a 2011 report that described autism services activity in nine states: http://www.cms.gov/apps/files/9-State-Report.pdf . CMS is developing a “State of the States” report to present quantitative and qualitative data on autism services across the United States, expected in late 2012.

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:

• Job-based and new individual health insurance plans are no longer allowed to deny, limit, or exclude coverage to any child under age 19 based on a pre-existing condition, including children on the autism spectrum.  Starting in 2014, these protections will be extended to Americans of all ages.
• New health insurance plans or insurance policies must cover preventive services without cost-sharing, including autism screening for children at 18 and 24 months.
• Insurance companies will no longer be able to impose lifetime dollar limits on coverage.  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.  The law also restricts annual dollar limits and will prohibit them for new plans altogether starting in 2014.
• Young adults can remain covered under their parents’ insurance up to the age of 26.  Already, 2.5 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.
• Starting in 2014, individuals on the autism spectrum and families of children on the autism spectrum will have expanded access to affordable insurance options through new Affordable Insurance Exchanges and improvements in Medicaid.
• Also starting in 2014, new health plans sold in the individual and small group markets, including Exchanges, will cover “essential health benefits” to help make sure that health insurance is comprehensive.  Health insurers will also have annual out-of-pocket limits to protect families’ incomes against the high cost of health care services.

Department of Education

• The Department awarded $500 million to States for the Early Learning Challenge Fund, President Obama's initiative to establish model systems of early learning for young children, including children with developmental delays such as early warning signs of autism, to ensure that more children enter school ready to succeed.  
• In September 2011, the Department issued regulations for the Individuals with Disabilities Education Act of 2004 (IDEA) Part C early intervention program for infants and toddlers with disabilities, improving administration of the program and transition services to the IDEA Part B program for young children identified as having developmental disabilities, including those children that may have the early warning signs of autism.
• The President's FY 2013 budget request includes $30 million for Promoting Readiness of Minors in SSI (also known as PROMISE), a pilot program in coordination with the Social Security Administration and other federal agencies to improve post-school outcomes of children who receive Supplemental Security Income.  The Department received funding in 2012 to plan the grants, which will be awarded competitively to States in 2013.
• Since 2010, the Department has invested more than $30 million in the Model Transition Programs for Students with Intellectual Disabilities into Higher Education (TPSID) program.  The TPSID program was authorized in 2008 by the Higher Education Opportunity Act of 2008 (HEOA) and supports postsecondary programs that promote the successful transition of students with intellectual disabilities, including students on the autism spectrum with significant limitations in cognitive functioning, into higher education.
• In 2010 and 2011, the National Institute on Disability and Rehabilitation Research (NIDRR) invested over $3.7 million in research on children and adults with autism. Research topics range from improving independent living, developing assistive technology, and improving vocational rehabilitation services for individuals with autism.

Department of Labor

• The Job Accommodation Network offers publications on accommodating workers on the autism spectrum, including Asperger Syndrome, at http://askjan.org/media/autism.htm   JAN worked to update its autism-related materials in July 2011.
• The Job Accommodation Network presented a webcast on “Understanding and Accommodating workers on the autism Spectrum in the Workplace”.  Information on viewing this archived webcast can be found at http://askjan.org/webcast/archive/index.htm   .

If You’re Concerned – Help is Available

If you think your child might have autism or related condition 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 National Dissemination Center for Children with Disabilities (NICHCY) at 1-800-695-0285.
  
  Or visit the NICHCY website    . Once you find your state on this webpage, look for the heading "Programs for Infants and Toddlers with Disabilities: Ages Birth through 3".  
  
  Learn more about early intervention ».   
  
• 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 National Dissemination Center for Children with Disabilities at 1.800.695.0285 or visit the NICHCY website   .  Once you find your state on this webpage, look for the heading "Programs for Children with Disabilities: Ages 3 through 5".