CEDAR PARK, Texas — Get a divorce, have more children or make less money: That's what a Cedar Park couple said were the three options they had in qualifying for money from the government in order to care for their daughter with a rare disorder.
The couple said their daughter is suffering from a rare disorder called Rhett Syndrome.
We showed you their daily struggle to keep 3-year-old Sophia alive, now we're look into what can be done to change the rules.
RELATED:
Every day she struggles to walk, eat and talk. The constant therapies are what keeps her moving forward.
"As a parent, you instantly feel like you've failed," said Jacque Cline, Sophia's mom.
For Sophia to get better, her parents said she needs more therapies like Water therapy, Hippo therapy (Therapy on horses) and Music therapy.
"She is only getting about 60 percent of her therapies because 60 percent is all that's covered by private insurance," said Cody Cline, Sophia's father. "We requested assistance and we didn't get it. Our government fell short."
The additional therapies that they are wanting for Sophia could be covered by The Social Security Administration, but when they applied for Supplemental Security Income (SSI) through Social Security Disability Insurance (SSDI).
Once they were denied, they started working with the office of Congressman John Carter who opened a case to get answers from Social Security.
He was given a letter by social security which explained why Sophia was ineligible.
Here are excerpts from the three-page letter:
- "We reviewed Sophia's claim and found that she was not eligible to file for SSDI benefits because neither of her parents were receiving SSDI benefits at the time of her claim."
- "Mr. Cline's monthly gross income in early 2017 was slightly above the earned income limit for a two-parent household with one ineligible child."
Representative Carter gave the following statement to KVUE when asked to interview on the Clines situation:
“The Cline family’s story is truly heartbreaking. After my staff spoke with the Cline family and I met with Mr. Cline in September, my office opened a congressional case on their behalf with the Social Security Administration. I take the opportunity to ensure my constituents receive fair treatment in accordance with the law by a federal agency very seriously. Unfortunately, the results of a case are not always what we hope, but I remain committed to assisting my constituents by advocating for funding for Rett’s Syndrome research in the FY20 Health and Human Services Appropriations bill, so we can work towards a cure.”
"It's called Supplemental Security Income but it doesn't provide security to very many families," said Austin Representative Lloyd Doggett. "It only provides assistance to those who are truly destitute."
Doggett saw KVUE's story from July While he's not the Cline's representative, he does sit on the Human Resources Sub-committee which has some control over the Social Security Administration. He said the requirements haven't changed in 30 years, and even though he wishes they could be changed, the current climate in D.C. won't allow it.
"I find that to be extremely troubling when I see this one little girl and the impact it has on her," said Doggett. "But that doesn't resolve the problem now, that this family faces tomorrow."
Sophia can qualify for supplemental security income when she turns 18, 15 years from now. So, for now, the Cline's will continue to provide Sophia all the support they can afford, and hope for change from lawmakers.
"Lawmakers have a lot of power and a lot of say, so if we can motivate and encourage them to do the right thing and improve social security administration then let's do that," said Cline. "That is our goal."
The Clines are currently using fundraisers to help raise the money to help cover therapies.
You can learn more about Rhett syndrome and how you can help this family by clicking here.