Gloria Perez-Walker and Aiden Villasenor-Walker
For Austin resident Gloria Perez-Walker, waiting years for Medicaid waiver services can only be measured in losses. Her nine-year-old son, Aiden, was born with autism and living with this condition is extremely stressful for a family. Aiden needs constant prompting to complete his daily living tasks. As Gloria explains, “I will ask Aiden to get ready for school and he will come downstairs with his books and back pack on, but he will be completely naked. I feel like I’ve had a two year old child for nine years.”
Aiden can be very aggressive. He has even choked Gloria on several occasions. He also is extremely sensitive to noises, particularly to dogs barking and birds chirping. When he hears these noises, he mimics them and then runs out the door and into oncoming traffic. He wears headphones to help screen out sounds that trigger this flight behavior.
Gloria’s relationships with family and friends have changed since she’s had Aiden. “I have to constantly explain autism to all of them, and it is tiring,” she revealed. “They want to protect and shelter him, and they don’t understand the need for him to be independent.” Her family and friends expect her to keep Aiden with her for the rest of her life. Gloria states that “If I had a typical child, I would still be married.”
Gloria’s career and educational goals have suffered as well. She had to give up school and work at times in order to maintain Aiden’s Medicaid health insurance coverage and Supplemental Security Income (SSI) benefits.
“I feel like a bad person because I talk poorly about my child just so he can get services,” Gloria confided. “The only way to get services for Aiden is to constantly point out how bad he is or all that he can’t do so I can get the services he needs. I feel like I have to always look at my child in a negative light.”
She added that “Everything is from a needs perspective, so if you’re going to get anything for your child, you have to be prepared to state everything he needs in front of a group of therapists and professionals at the drop of a hat. I feel like I’m always fighting for him and that takes up my life. I haven’t had a chance to enjoy him.”
Despite all she faces, Gloria has great aspirations for Aiden. She wants him to have his own life, become as independent as possible and live in his own home. For this to be possible, however, Gloria needs services now while Aiden is still in the early developmental stage of his life.
They have been waiting for Medicaid waiver services for five years. Aiden came up for the Medically Dependent Children Program (MDCP) but was denied because autism is not considered a medical disorder. Despite this, Gloria knows that early intervention for children with autism is critical if they are to meet their full potential. Each year that goes by without services is another loss for the Perez-Walker family and more critically, another loss for Aiden.