Hundreds of thousands of Texans who are intellectually and developmentally disabled have applied for home and community-based therapies under the Medicaid Waivers program.

Each morning, when Mangala Lone hears her son’s footsteps, she knows what’s on his mind.

“The first thing he asks me when he comes down…what are we eating for dinner?” she said of her son, Humza Lone.

Humza loves to cook and on this day it’s fried chicken sandwiches. He learned by watching his mother in the kitchen.

The 21-year-old has cardiofaciocutaneous syndrome, a rare genetic disorder that impacts the heart and causes developmental delays. This means Humza needs support as he learns to become more independent, which was evident recently when he made pizza at a family friend’s restaurant.

“You’re supposed to make the pizza in one minute,” Mangala Lone said. “He took fifteen minutes to make it, but his pizza was really good.”

And while therapies in high school helped Humza become more competent, those services stopped when he graduated.

Hundreds of thousands of Texans who are intellectually and developmentally disabled have applied for home and community-based therapies under the Medicaid Waivers program.

The Harris Center for Mental Health and Intellectual Developmental Disabilities, which manages the waiting lists for the waiver services, said it’s not unusual for people to wait years to get off a waiting list. The shortest is three years while the longest is 17.

Humza Lone has been on two of those waiting lists since 2017. Mangala could put her son in a state supported residential center for free, but she doesn’t want to; Humza thrives being at home with his family.

“I would never do that because who would send their kid there?” she said. “But the thing that he needs, we can’t get the funding for it.”

Mary Jane Williams, the executive director of a Houston disability nonprofit called Family to Family Network, said even though home and community-based care have better outcomes, Texas continues to fund its 13 residential centers even while the Centers for Medicaid and Medicare is directing states to phase them out by 2023.

The Texas Department of Health and Human Services argues the CMS guidelines only apply to the waiver services. Still, Williams said leaving these centers out is an oversight.

“It baffles me how you can have 13 state institutions and you’ve not included any of that in your transformation plan to this whole community-based program,” she said. “I just don’t get it.”

That’s because the cost difference between the two programs is striking. The latest figures show Texas spent $6.9 million to operate its residential facilities with 9,347 employees who receive state benefits. At 2,689 patients, that comes to around $255,000 per person.

In comparison, Williams said the waivers are more cost effective. According to the budget breakdown in Senate Bill 1, it costs around $45,000 a year to fund a Home and Community Based Services (HCS) waiver for one year and around $53,000 per person a year for the Community Living Assistance and Support waiver.

Williams says an obvious solution is something Texas has largely refused since the passage of the Affordable Care Act in 2010, to accept federal dollars and initiate any meaningful expansion of its Medicaid program.

“Texas could technically draw down a lot more federal Medicaid dollars, but they have to match, and they don’t want to do that,” she said.

Not taking that money leaves families scrambling to fill holes in the care needed to support their loved ones — something the Mohammed family is facing with their son Altaf. He has autism, epilepsy, schizophrenia and bipolar disorder. His sisters, Sabina and Sana, moved back home to help their mother take care of him.

Sabina said it’s not a substitute for therapies that would improve his functioning.

“He’s only getting a fraction of what he needs, and that causes a lot of instability for him and my mom,” Sabina said.

State data shows there’s 171,281 people like Altaf waiting for services. The 87th Texas Legislature did try to decrease the waitlist by adding $76.9 million to the waiver budget. That opened up 1,549 slots.

Mangala Lone said those spaces are a drop in the bucket.

“Humza will probably be 30 years old by the time he gets any support,” she said. “That’s like 12 years wasted.”