KYLE, Texas (KXAN) — Mariana Castillo looks at the colorful Ferris wheel in front of her and uses her little finger to spin the toy.
Her mom immediately erupts into cheer. “Yay! Good job,” said Natalia Castillo.
The spinning wheel is part of her therapy encouraging her to touch and strengthen her hand-eye coordination.
“The therapist will tell me what to do, what kind of exercises to do with her, and they will guide me,” explained Castillo.
The 14-month-old was diagnosed with Central Core Disease, which impacts her muscles. Castillo said she has a tracheostomy which helps her breathe and a feeding tube.
“Whenever she came home from the hospital in January, they told me she was going to be bed bound,” Castillo said. “They told me that, you know, she wasn’t going to be able to move—that she wasn’t going to be able to get up out the bed—or do anything just because of her condition.”
Twice a week her mom and a nurse work with Mariana virtually, because of the pandemic, on a number of exercises.
The speech therapy she gets helps her with her mouth movement. The occupational therapy will teach her to move her body, and the physical therapy will teach her to crawl and walk.
“One of the things that we’re working on is actually head control, because of her Central Core Disease she doesn’t have a lot of muscle strength,” Castillo explained. “It was hard for her to actually just sit for a long period of time. So, I guess whenever we started, she was only going about a minute or two. We’re up to 25 minutes right now by holding her head by herself.”
Castillo worries about the future of these therapies, which have made a big difference in Mariana’s life.
Child advocates have been sounding the alarm for years saying the Early Childhood Intervention (ECI) program has been lagging in funding. The program provides therapies for children under age three with autism, speech delays, Down Syndrome and other disabilities.
“It could mean the difference between whether they’re able to communicate with their family, be able to walk and crawl and eat and do all of the things that babies and toddlers should be doing,” said Katie Mitten, Health Policy Associate for Texans Care for Children, a multi-issue children’s policy organization.
The nonprofit said funding for the ECI program has declined 10% over about a decade, making the program more restrictive and eligibility tighter.
In October, a federal investigation by the U.S. Department of Education found Texas is out of compliance with federal law and not serving all eligible infants and toddlers through the program.
“A significant cause of the findings identified… is the level of funding that the State has made available for its early intervention… ECI program, and the State will need to take into consideration this and other root causes as it implements corrective actions,” the report said.
“During the last legislative session, the state took some good steps to try it and reinstate additional funding for the program. However, there’s more that needs to be done,” said Mitten. “We’re optimistic that next session the state legislature will provide additional funding to the ECI, so that the program has enough money to provide services to all eligible kids.”
Mitten explained a new report by her organization also found the lag of funding has also meant that the program is under-enrolling infants and toddlers with disabilities and developmental delays. The research found that enrollment is low for children of all backgrounds and disproportionately low for Black children.
“If they’re able to get these services in the early years of life, often times delays and disabilities are addressed, and children are able to be successful and on track to do well in school,” Mitten said. “It’s really important that more kids have access to these early childhood intervention services.”
Impact of cuts to program
Currently, Texas has 41 providers for all 254 counties across the state. The organizations get funding from the state for providing therapy services.
The federal report also said as a result of funding cuts, 16 ECI programs have discontinued providing services. The investigation pointed out that a number were in rural communities.
“During the resulting program transitions, eligible infants and toddlers in rural areas have gone extended periods without receiving… services for which they are eligible,” said the report.
Any Baby Can, which provides child development, family health and parent support services in Austin and surrounding counties, has seen the impact and taken on children from programs which have had to drop out.
“10 years ago, we had more funding than we do today. Yet our enrollment has increased, while our funding has decreased,” said Guillermo Lopez, Senior Director with the Early Childhood Intervention program with Any Baby Can. “We ended up providing services in Hays and Blanco County, because the host agency there closed its doors… and recently we added the west Travis County to our area coverage as well.”
The nonprofit provides speech, physical and occupational therapies and explained between birth to three is a critical window for children’s brain development.
“If we don’t provide services right away or there’s an interruption of services, then it does impact our community,” Lopez said. “We are able to then decrease the amount of students that local school districts might have for special education.”
Lopez said they have about 535 families in their program. Additional funding would mean they can hire more therapist and service coordinators.
Mitten said the pandemic has created new costs for providers including adding technology for telehealth and providing personal protective equipment for staff.
Texas Health and Human Services Commission (HHSC) oversees the program for the state and has been given until early next year to come up with a plan.
“We are currently reviewing the report and will determine next steps,” said Christine Mann, Chief Press Officer with the agency.
The federal report said the agency had warned lawmakers that 90% of providers had taken part in significant cost-saving measures and “due to growth in the number of children served and increased family needs, contractors have notified HHSC their ECI programs are unsustainable without additional funding or program restructuring,” and “federal funding will not cover the population growth Texas is experiencing.”
Last session the agency asked for $71 million, but only received $31 million.
Castillo hopes her daughter will continue her therapies without any interruptions. “She’s my miracle baby.”
Recently, Mariana was able to grab a string of beads placed in front of her. Her mom cheered along every step of the way.
“You want the beads,” said her therapist during the Zoom call “Ok! Get it.”
It’s a milestone not taken for granted by Castillo. The single mom said with the help of her nurse and therapists, she doesn’t feel alone juggling work from home and her daughter’s sessions.
“I’m really happy with her progress, and I’m really happy how strong she is,” said Castillo “And I just feel Blessed.”