Tracing the Evolution of the Autism Cares Act

Over the past decade, significant focus has been dedicated to researching the causes and treatment of Autism Spectrum Disorder (ASD). The Combating Autism Act of 2006 was reauthorized in 2011 and renamed the Autism CARES Act in 2014 (Autism Collaboration, Accountability, Research, Education and Support Act). It offers federal funding for research and monitoring the prevalence of autism and for training providers in detecting and diagnosing autism.

There is still no single test for autism, no definitive cause, and no cure. The law was updated again in 2019 to continue valuable research, education, social programs, and services to support the autism community. It released critical funding of 1.8 billion to the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA).

What is Autism?

Autism is a developmental disability that creates social and communication barriers, along with behavioral changes. It creates many social and economic challenges for the child’s family as the child grows into adulthood. As a spectrum disorder, autism has many different forms and affects people in a variety of ways without a consistent degree of severity. Three conditions that were formerly diagnosed separately are now all called Autism Spectrum Disorder.

1. Autistic disorder
2. Pervasive developmental disorder, not otherwise specified (PDD-NOS)
3. Asperger syndrome

Research has found that many forms of ASD stem from genetics, as well as environmental and biological factors, and has been proven not to be caused by childhood immunizations.

The Health Challenges of Autism

Because autism spectrum disorder has several serious co-morbid conditions, there is a higher rate of premature death for an autistic person compared to the general population. As communication issues prevent some patients from being able to describe or even alert parents to symptoms of common conditions that accompany this disability, appropriate treatment for medical conditions could be delayed. Some of the health issues patients and families face can be costly to treat, both emotionally and financially:

• Epilepsy
• Gastrointestinal disorders, such as constipation
• Sleep difficulties
• Marked and unexplained irritability or aggressiveness
• Eating and feeding challenges
• Obesity
• Anxiety
• Depression

Medical Expenses

Economically, the cost of caring for an autistic child is estimated to be around $60,000 a year, and more than $26,000 for community support, employment support, and possibly daycare if they can’t be employed or stay home alone safely. Once the child with autism reaches adulthood, they are less likely to pursue higher education, and job opportunities are few. An Autism Speaks 2017 special report claimed that half of young adults aged 25 with autism had never held a paying job.

Once a child ages out of care provided by a pediatrician, fewer adult patients get the specialized help they need to manage their autism-associated health conditions. Of those adults who can work, their income often remains at or below poverty level.

The Future of Autism

The CDC considers autism spectrum disorder a public health concern and continues to monitor developmental disabilities with the desire to find out more about risk factors that make a person more likely to develop ASD.  With the help of continued federal funding the Autism Cares Act provides, the CDC and other agencies will be able to continue to pursue answers to causes of, new treatments, and hopefully a cure for autism.

Contact our special needs attorneys for more information about autism resources and health care options. Our estate planning and elder law firm has years of experience in issues related to in-home care, assisted living, and nursing home facilities, as well as ways to pay for services.

This article offers a summary of aspects of elder law. It is not legal advice. It does not create an attorney-client relationship. For legal advice, we invite you to contact our offices in Midway, Erie, and Franklin PA.