Anie Heynis has to take her five-year-old daughter Amy Jo to Houston for appointments.
That’s where many of her doctors are located — the specialists Amy Jo needs for her condition.
She has seizures, and she had a stroke. She is blind in her left eye. She can’t move her left hand.
Going to appointments in Houston, or other cities like San Antonio or Austin, come with a risk.
In Houston, Amy Jo needed surgery for her sight. Right before they traveled, Anie had to be on the phone with insurance to get her surgery authorized ahead of time.
On arrival the front desk told Anie her insurance did not authorize it.
“I’m like, ‘I know that they did. I spent all this time on the phone with them in the last month. This is the second time we had to reschedule the surgery because they didn’t get it done in time. They said it was done,’” Anie said.
They told her she could go back home, and they can reschedule again, or they could just do the surgery without it being authorized.
If her insurance does not authorize it afterward, Anie may have to pay out of pocket.
She spoke with the surgeon.
“He said she really needs this eye surgery right now so that she doesn’t lose vision. So let’s just do that surgery and I promise that if your insurance doesn’t cover it, we’ll take care of it,’” Anie said.
They have been going to this doctor for years, so he knew Amy Jo needed the surgery.
“He knew that they might have grant money available or something,” Anie said. “It’s kind of sad that you have this big company and there are several people who work in the office and their whole job all day is to process these authorizations — but they’re not doing it.”
The insurance eventually authorized the surgery.
According to the Texas Council for Developmental Disabilities, more than 500,000 Texans have intellectual and developmental disabilities including autism, down syndrome, cerebral palsy and cognitive disabilities.
However, less than 62,000 with those receive Medicaid long-term services and support, giving Texas the fourth worst rate in the country.
The TCDD reported more than 140,000 Texans are waiting for Medicaid waiver services, and 105,000 of those would have been on the waiver interest lists for more than 5 years.
Most will be waiting up to 10 years.
The Texas Health and Human Services Commission requested funding for Medicaid waiver programs from the 86th Legislature.
According to The Arc, these programs provides comprehensive service to individuals and reduces the state’s reliance on higher acuity, more costly care settings such as intermediate care facilities, nursing facilities and state supported living centers.
If funding was approved, it would have reduced the interest list.
No funding was approved.
New Braunfels resident Sally Waldner’s daughter, Joanie, is autistic and has seizures. Waldner said it is constantly changing and hard to maintain adequate benefits.
“We had to go from the Medically Dependent Children Program to the Home and Community-based Services program,” Waldner said. “And she may be losing the whole program and we don’t know what Joanie will be on after that.”
Joanie was on the “interest list” for 17 years. Waldner said at one point, she was told they had lost Joanie’s information and they had to fight to get any extra years back.
They only got four out of 12 years that they have been waiting to receive benefits.
“What happens is, if you receive a number, you check in every year to see how much closer to possibly being offered one of the programs,” Waldner said.
After 17 years, Joanie got one program to help pay for seizure meds.
That’s only three out of 14 medications.
“It was better than nothing,” Waldner said.
A doctor in New Braunfels
New Braunfels resident Jeneva Novak has a hard time trying to find a doctor who takes Medicaid in town.
“They either don’t accept it, or they accept it but they’re not taking new patients,” she said.
Her daughter, Hannah, has cerebral palsy. She’s 28.
They eventually found someone, but it’s a physician’s assistant.
Novak was told doctors don’t take Medicaid because they don’t get paid.
“They get paid but it could be a long time — it could be forever,” said Lisa Reddam, executive director at The Arc of the Hill Country.
There’s also a limit on how much Medicaid will cover.
“Medicaid will say, ‘Oh no, we think it’s only worth this amount, and, ‘You know you can’t charge that much. We’re only going to pay this much for it,’” she said. “Then the doctor or whoever has to go back and fight you or your insurance or somebody else to help cover that. So, there are things you’re liable for it if the insurance doesn’t pay.”
Anie’s daughter Amy Jo is medically disabled and has a letter from the state saying she is medically disabled. However, she does not qualify for disabled Medicaid.
Anie makes too much money. She pays $900 a month for her insurance, but it can get more expensive.
“There’s no pediatricians in this town who will take Medicaid unless you’re pregnant,” Anie said. “Meanwhile the children who are disabled, they have either disability Medicaid or their parents can’t afford their insurance. If my daughter didn’t have insurance through my job and she was still on Medicaid our pediatrician had to be in Bulverde or San Antonio.”
Amy Jo has seven doctors she sees in Houston. So, for scheduled appointments, Anie has to miss work, spend money on gas and sometimes a hotel if her daughter has a 7 a.m. appointment.
“It just puts us further and further behind because it takes me a whole day to get to and from Houston,” she said.
Medicaid reimburses for gas, or hotel. Her insurance won’t.
“So now not only am I paying for insurance, but my insurance doesn’t cover any medical travel or critical stays overnight — or you know all the food. It costs money to be away from home.”
To help with costs, she sometimes make sandwiches to take with her.
Anie is a single mother of three. If she and Amy Jo have to stay overnight, she needs extra childcare.
“You either need to bring them with you or you need to hire someone else to take them to and from school if you’re going to have to be out of town for your kids,” Anie said. “And sometimes, it’s just a checkup.”
Anie feels New Braunfels doesn’t have the resources available for special needs children.
When her daughter had a seizure, she took her to the closest emergency room in town, to Resolute Hospital. However, they did not have a pediatric neurologist on staff.
They had to put her in an ambulance to take her to San Antonio
“Everyone in my community, all of my friends have to go to Austin or San Antonio for specialists,” she said.
Reddam said that is problem, as well.
“Some people have such medical issues, or the doctors don’t want to take them because of Medicaid, Medicare and then they’re dealing with this special needs person and maybe they’re more specialized,” Reddam said. “And they don’t feel like they can, or they just go, ‘Wow, I’ve never, I don’t do kids like that,’ and so you hear that.”
Anie feels like New Braunfels is big enough that it should have more resources.
“There should be a lot more doctors here — at least for emergency situations — because when you have a special needs child and they have an emergency, it’s almost like you live out the middle of the woods,” she said. “You have to travel almost an hour to get to an emergency room that can handle what your child has.”
Novak said she thinks it’s going to take a lot of doctors moving to New Braunfels before there are any changes.
“And then, there still might not be any changes,” she said.
For more information on Medicaid and the waiver list, visit http://bit.ly/2lAeiMh.