SAN ANTONIO – A group of disability-centered nonprofits is teaming up to make a big difference for those with intellectual and developmental disabilities (IDD) in Bexar County.
Nonprofits such as Morgan’s Mult-Assistance Center (MAC), ABC of Southwest Texas, the Respite Center, the Brighton Center, The Arc of San Antonio, SA Life Academy and others came together on Tuesday to release the results of a community-based survey they collaborated on late last year.
The aim of the nonprofits, known as IDD Champions, was to gather information about how the system has been serving individuals with IDD and their caregivers in Bexar County.
The survey was inspired by the Texas Cavaliers and the Meadows Foundation, who both were releasing policies and surveys centered around IDD.
IDD Champions said the survey was answered by more than 800 caregivers.
What is IDD?
IDD, according to the Texas Department of Health and Human Services, is a range of severe and chronic conditions that cause mental or physical impairment.
This can happen from birth up to age 22. These conditions can often last a lifetime, the department said.
They can often affect major life activities such as mobility, language, independent living and learning.
Many people with these conditions, though not all, require full-time caregivers, according to IDD Champions. The caregivers can be familial or professional. Oftentimes, a person with IDD will have both.
IDD Champions said many conditions are present from birth. Pediatricians are relied on to highlight symptoms and diagnose cases early to help parents find treatment for their children.
Survey design
IDD Champions said the survey was designed to be easy and engaging to complete, focusing less on open-ended questions.
Examples such as “How do you identify?” and “Where does your person with IDD live now?” could be answered with the click of a button, the group said.
There were also opportunities for survey-takers to give their thoughts in open-ended questions, IDD Champions said. More than 700 caregivers submitted their thoughts on how the system worked for them.
The survey changed questions depending on how you identified, making it more personalized for parents and professionals of individuals with IDD.
To make the survey more accessible, the survey was available in English and Spanish. Plus, caregivers could find the survey easily through a QR code.
“We believe in the wisdom of our community to solve these problems because they’re the ones who experience these issues,” Jennifier Hixon, CEO of Any Baby Can, said.
Survey findings
Approximately 50 percent of caregivers said that coordination was ineffective between providers, and they had to act as full-time care coordinators.
The executive summary reported that families had to manage referrals, waitlists and appointments across disconnected agencies.
Many said there was also a delay in their diagnosis due to a lack of access to services. Caregivers reported previous concerns about their loved one within their first year of life.
However, delays and systemic barriers would lead to ineligibility for key services such as Early Childhood Intervention (ECI).
“We always say the earlier the better,” Brighton Center CEO Katrina Campbell said. “Early intervention can change the trajectory of how a child operates.”
Campbell noted that the survey reported many parents seeing warning flags before experts did. However, she said not every symptom is a red flag.
“It just varies,” Campbell said. “We have several developmental milestones that we look at, but every child is different. That’s why we lean on experts.”
One-third of caregivers reported a shortage of resources and the ability to take a respite.
Even though these families are eligible for respite or day programs, the survey said these are inaccessible to them due to provider shortages and restrictive admission criteria.
According to the executive summary, 32 percent of caregivers had to leave their jobs to care full-time for their loved ones.
Many reported reduced earning potential and no public support or employee accommodations.
Future planning was found to be a common source of fear for caregivers of those with IDD, according to the survey. More than 80 percent of respondents reported having no plan for their loved one when they enter adulthood.
Many who identified as caregivers for an adult with IDD reported not knowing about resources that could lead to independence, IDD Champions said.
Taking action
IDD Champions reported that they will use the survey to take action in various ways across Bexar County.
In the short term, the coalition plans to team up with the San Antonio Community Resource Directory (SACRD) and create an IDD resource directory.
According to IDD Champions, the directory would work by having caregivers fill out a few questions and giving them targeted resources that best fit their experiences.
So far, two-thirds of the funding has been secured, and the coalition is working with the community to raise the final part. The IDD resource directory plans to be launched in November.
Parenting info sessions and deep dives will also be a short-term solution.
In the meantime, IDD Champions plans to create an IDD Council to align disconnected systems and raise advocacy, the summary said.
Expanding awareness, specifically around ECI, respite resources and Individualized Skills and Socialization (ISS) services, is another key goal.
Creating family-centered early supports and advancing adult care planning for caregivers will be something IDD Champions focuses on in the next three years and beyond.
Above all, the coalition said this survey has helped them rethink how they talk to caregivers within their organizations.
“I think this shows that you don’t have to wait for an academic study to be published,” Ellen Shoemaker, Executive Director of SA Life Academy, said. “You can make your own.”
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