The unheard voices in our society continually struggle to receive the health care services they need in order to address not only their medical issues, but also, their mental health related needs.
The current United States healthcare budget is at an all-time high. Despite the amount of dollars dedicated to healthcare spending, there is an overwhelming gap pertaining to the demand for increased research funding for Autism. The dire need specific to autism is directed to enhancements for public awareness and Autism research in terms of increased initiatives that involve community engagement. Community directed programs will assist those individuals on the autism spectrum throughout their lives from childhood to adulthood.
The financial stress of out of pocket costs and the emotional strain of not knowing what a child needs places a lot of stress on parents and caregivers of children with Autism Spectrum Disorder (ASD).
According to Christin LaSpina, a mother with four-year-old twins on the Autism Spectrum, “The services that James and Jackson receive under Medicaid include occupational therapy, speech therapy and physical therapy, but the insurance company provider imposes caps on the number of hours and visits available to my children based on what the provider decides they need.”
Christin LaSpina is a young mother who devotes her time to James and Jackson on an everyday basis and on top of handling the financial stress caused by the insurance provider’s suboptimal coverage plan for her children, she also places a significant importance on the need to educate individuals studying Respiratory therapy alongside her at West Chester University in order to prepare them to work with Autistic children in the future. An emergency room visit with Jackson showed her first-hand that there is a lack of understanding of staff members in a hospital setting relating to children with ASD in order to be equipped with the knowledge and the tools to
improve the quality of care they are receiving. According to U.S. National Library of Medicine, the number of adult autistic patients in emergency room visits has increased in recent years. In addition, as stated by the American Academy of Pediatrics, parents and doctors both have referred to emergency room departments being particularly inadequate in dealing and how they serve the needs of autistic children.
“My children shouldn’t be punished because I am a single mom and I don’t have my own health care plan,” LaSpina said. “There is so much research on the effectiveness of Assistive Behavioral Analysis (ABA) therapy, but Pennsylvania does not offer it in its plan, therefore it is not as accessible to certain families and individuals with disabilities.”
The American health care system imposes significant challenges and barriers to parents of autistic children when they face the difficulties of not being able to get coverage for the services their child needs.
“There are so many loopholes to so many insurance companies,” Jennifer Naddeo, mother of 12-year-old twin boys on the Autism Spectrum, said. “It is so draining because on top of taking care of the family and making sure the boys get to school, I am constantly busy trying to figure out how to manage because you have to be an advocate 24/7 for these children.”
Jennifer Naddeo, who was named 2010 New Jersey Mother of the Year on behalf of her work with children with disabilities, explains how as a mother of two twin boys, Justin and Jonathan, she sees the world through a unique lens. On top of being an advocate, Naddeo also is a proponent of inclusion and makes sure that her children get the opportunities to get out and gain experience within the community.
Naddeo, a Cabrini College alumna, and LaSpina, both place a significant amount of importance to further education in our communities to better understand not just both of their son’s needs, but the overall gap in our society of education on ASD for anyone diagnosed on the spectrum to thrive throughout their lives.
According to the Centers for Disease Control and Prevention’s Autism and Developmental Disabilities Monitoring Network report, approximately one in 68 children in the United States are diagnosed with autism spectrum disorder.
“The increase in the amount of children with autism and the factors that have caused it, whether it be an environmental factor or related medical factors, needs to be addressed in the upcoming election,” LaSpina said.
Even though the Affordable Care Act (ACA) provided more people with the right to purchase health insurance, it was not mandatory that providers had to accept it. Therefore, there is still a long road ahead for the health care system that currently does not provide its citizens with a right to universal health care.
In effort to provide access to services and health care plans for the autism community, the current democratic presidential candidate, Hillary Clinton, has proposed an Autism plan to support children, youth and adults living with autism and their families.
“As an advocate of 12 years, I believe that every current presidential candidate should have a health insurance plan,” Naddeo said. “These children that are struggling are our workforce future and the state and insurance companies need to put the time in to make sure that they receive the care they need now as well as in the future. We should not be picking and choosing, there needs to be more programs and plans to help families and children get the services they need. Parents of autistic children are so exhausted but combined we are a large organization that is sometimes not heard as much in the news.”
The advocacy efforts of LaSpina and Naddeo to drive community involvement in ASD awareness are powerful and meaningful examples of the on-going pioneering actions needed to make a difference now and in the future.
