At a press conference at Morgan’s Wonderland, the San Antonio theme park that caters to children with special needs, representatives of the Kronkosky Charitable Foundation and nine other area autism foundations unveiled the new Autism Lifeline Links (ALL) organization and website. The purpose of ALL is to provide families affected by autism with local resources to better manage children’s diagnoses within the spectrum of autism.
The website creates a single point of online access where people with autism and their families can register to connect with social services, specialized physicians, and other providers. The site also appoint personal care coordinators who contact families within 24 hours.
Tullos Wells, managing director of the Kronkosky Foundation, said that the new organization has been in development for almost two years.
“Many of the people in this room came together to talk about (whether) there was something we could do in the San Antonio area to make a difference,” Wells said. “These folks came together to spend an enormous amount of time and energy (on) as selfless as an act that you will ever see.”
Wells said that the ALL platform is the first of its kind in autism treatment and that the platform would be particularly helpful to families that are new to San Antonio as it supports them in finding local resources that facilitate coping with autism diagnoses.
“Instead of having to ask, ‘What do I do next?’ they will be able to log into ALL (and) have a single point of entry to fill out any forms one time. (They) won’t have to go chasing around the city trying to find each of those different services,” he explained.
Wells also explained that building the platform was further motivated by an internal Autism Prevalence Assessment which showed that in the San Antonio Core Based Statistical Area (Bexar, Bandera, Comal, Kendall, Atascosa, Guadalupe, Medina, and Wilson counties), 30,000 people are living with autism spectrum disorder in San Antonio, which has an overall $2 billion economic impact.
The assessment also noted that over 4,000 children in the area currently receive special education support for autism and that the number of children in need of service is projected to rise 237% annually.
Dr. James Rubin, founder and CEO of TAVHealth, the software company that created the ALL website, said that the TAVHealth platform connects many community agencies to make autism treatment easier.
“(The website) will enable these agencies to connect the right social, financial, and local community resources from one phase of a person’s journey to the next,” Rubin said. “It allows ALL to understand the person and their support system (and) to build relationships characterized by care, concern, and compassion. It will allow for information sharing, referrals, and identification of gaps in service and barriers to care.”
He added that the focus on sharing information about lifestyles, health goals, support networks, and the barriers of care give professionals the insight required to achieve the best outcomes individuals.
“Knowing a person’s joys and fears, their support circle, financial needs, and everyday challenges matters,” Rubin argued. “Understanding these factors is the difference between a successful outcome and a frustrating, incomplete experience.”
Berenice de la Cruz, chief operating officer of the Autism Community Network, said that while many people in the San Antonio area are affected by autism, not many fully understand it.
“Autism is a neurodevelopment disorder that impacts the person diagnosed and their family from childhood through adulthood,” de la Cruz said. “There is no cure, however we know that with intensive and early applied behavior analysis, or ABA therapy, children can enter a school setting without the need for special education services.”
De la Cruz added that the new platform combats the long wait times for autism care in the San Antonio area.
“Imagine that you’re child was diagnosed with diabetes and your doctor told you, ‘Well, you’re going to have to wait a few years for insulin,’” she said. “That would be outrageous to expect a child to wait that long to receive medically necessary treatment.”
ALL Executive Director Helene Freymann said the new organization is a selfless effort by many of the press conference’s attendees who worked to contribute their time and resources to the site.
“The most important thing is that every one of you has been willing to work together not for the benefit of yourselves, but for the benefit of the families who have to deal with these issues on a daily basis,” Freymann said.
After the press conference, when questioned by the Rivard Report about potential resources on the website to combat stereotypes and myths about autism, Freymann said that work is still in progress.
“There is nothing specific on the site that addresses that at this point,” she said, but added that she would address the topic with the various agencies and work on expanding those resources.