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Six area nonprofits combined their efforts to develop a comprehensive survey to amplify the voices of individuals from the disability community in Bexar County.
The nonprofits involved in the survey are Any Baby Can, the ARC of San Antonio, Brighton Center, SA Life Academy, Respite Care of San Antonio, and Morgan’s Multi-Assistance Center Collectively, they call themselves the IDD (Intellectual and Developmental Disabilities) Champions Coalition.
The survey revealed that families and caregivers are often stretched to their breaking points as they navigate impossibly long waitlists, little support, and financial pressures.
Dona Kotzur, CEO of The Arc of San Antonio, said intellectual and developmental disabilities affect all stages of life: “These are disabilities that can manifest themselves in various ways and impact an individual and their family or their caregiver for their entire lives."
Caregivers reported in the survey that they suspected developmental concerns within their child's first year of life, but they dealt with delays in receiving diagnoses and accessing early childhood intervention services. Waitlists for essential services can sometimes exceed a decade.
According to the survey, 32% of individuals had to leave their jobs due to caregiving responsibilities, and 80% of caregivers said it was difficult to maintain or obtain a job.
Any Baby Can President & CEO Jenny Hixon said the survey revealed that families were not getting adequate or timely care from providers.
“All of us who work in the early childhood space, and even those of us who work with adults, we know that families that don't get access to those early services really changes the trajectory of that family's experience,” Hixon said.
She added: “So 47% reported waiting a year or more for a diagnosis. As we know with little kids, especially, a year is a huge difference, and so having a child wait a year before they can get access, getting that diagnosis is a really big problem for our community.”
Hixon said more services also need to be available for adults with developmental disabilities because they age out of the caregiver systems by age 21.
The survey also showed that one in three caregivers said that they have no support or rest when they need a break, and that can have tragic consequences.
“Because we know that children with disabilities are more likely to experience abuse, and part of that is exacerbated by families not having the ability to get any support to these,” Hixon said.
Hixon said caregivers reported that they had the money to pay for providers, but they simply couldn’t find one.
Rebecca Helterbrand, CEO of Respite Care of San Antonio, said the IDD Champions are already planning out their next moves.
“In the first six months, we want to open up the system of care and make sure that families that need services can find them easier,” Helterbrand said.
She added: ‘We want to start sharing these study findings widely and use it as a policy lever as well. So we're going to be setting up parent info sessions, medical sessions, diving deep into white papers by disaggregating our own data, and we want to create a centralized local list of not only resources, but what are the waitlist situations happening? So it can guide the work from one to three years and three plus years.”
The IDD Champions Coalition has started its first signature project through the San Antonio Community Resource Directory to create a response system for caregivers, parents, and counselors to guide them to targeted resources.
