Estate planning presents unique challenges when it comes to special needs children. Optimizing your estate…
Over the past ten years, significant resources have been committed to researching Autism Spectrum Disorder, also known as ASD. The Combating Autism Act became law in 2006, was reauthorized in 2011, then again reauthorized and renamed to Autism CARES Act in 2014 (Autism Collaboration, Accountability, Research, Education and Support Act) which provided federal funding for research and monitoring the prevalence of autism and for training providers in detecting and diagnosing autism. Even still, there is no single test for autism, no definitive cause for autism in general, and no cure yet. To be able to continue valuable research, education, social programs, and services to support the autism community, the law needed to be updated so certain parts of it would not expire by the end of September 2019. With bi-partisan backing and passage through the U.S. Senate, President Trump signed the Autism CARES Act of 2019 into law on September 30, 2019. The 1.8 billion afforded by this law will allow the National Institutes of Health (NIH), the Centers for Disease Control and Prevention (CDC), and the Health Resources and Services Administration (HRSA) to continue their work on autism.
Autism is a developmental disability that creates social/communication barriers and behavioral changes for a child diagnosed with autism and provides many social and economic challenges for the child’s family as the child grows into adulthood. Being a spectrum disorder means that autism has many different forms and affects people in many different ways without a consistent degree of severity. Three conditions that were formerly diagnosed separately are now all called Autism Spectrum Disorder. These conditions are autistic disorder, pervasive developmental disorder not otherwise specified (PDD-NOS), and 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.
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. Epilepsy, gastrointestinal conditions such as constipation, sleep difficulties, marked and unexplained irritability or aggressiveness, eating and feeding challenges, obesity, anxiety, and depression are some of the health issues patients and families face and can be costly to treat, both emotionally and financially.
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 not able to be employed and stay home alone safely. Once the child reaches adulthood, an autistic patient is less likely to pursue higher education and job opportunities are few. Per the “Autism Speaks-2017” special report, of young adults who are 25 years old at the time of a study, more than half never held a paying job. Once they have aged out of care provided by a pediatrician, fewer adult patients get the specialized help they need to manage their autism-associated health conditions, and of those adults who are able to work, the income of many remain at or below the poverty level. 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 of 2019 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.
If you have questions or would like to discuss your or a loved one’s planning needs, please don’t hesitate to reach out. Contact our office at (616) 648-3882 and schedule a consultation to discuss your particular situation.