Once every hour of the day and night, Maria M. must depress the button on her son's G-tube pump to keep him alive. Thomas is fourteen months old and his mother has yet to have 2 hours of consecutive sleep since his birth.
Little Thomas has gastrointestinal problems and has already had several surgeries to correct malformations. His digestive issues require very slow feeding from a tube. Other feeding pumps don't work as they push too much into his tiny stomach at a time. This is the pump that works best for him, but unfortunately it requires round-the-clock attention.
Exhausted, Maria called her son's MDwise case manager. Her case manager referred Maria to ASK and Maria spoke with a Parent Liaison, who also has a child with special needs. Maria's Parent Liaison is bilingual and dedicated to helping the Spanish-speaking families who call ASK.
"Maria needed information and help with healthcare financing options," the Parent Liaison recalled. "I helped her apply for SSI and arranged a group meeting with CICOA to help get her enrolled with the Aged & Disabled waiver. The A&D waiver will give Mom some nursing care for Thomas so she can get some sleep hours. It will also allow Mom to give one-on-one time to her five year-old daughter, Anna."
Currently, Thomas is enrolled with First Steps and they are doing therapies with him, including working with his feeding issues. First Steps is an early intervention program for infants and toddlers with special needs.
"Next we'll try and get Anna into the Head Start program," The Parent Liaison said. "She's been denied because Mom is not working and the program expects that she has time to take care of her daughter. Thomas is a delicate little boy who requires constant care, monitoring his reflux. It's sad that it's been so difficult for Mom to get help."
Parents of kids with special needs are often in a difficult position, trying to balance their time with their children. Thomas' needs are very time consuming and can be life-threatening. Yet his sibling needs attention and stimulation too.
"Mom really wants to take care of Thomas herself because she knows nobody will care for him more lovingly than she will. But she's concerned about the lack of time she has left to give attention to her little girl. She's a very smart woman and very dedicated to her children."
Initially, Maria was afraid to ask for help because she's not a U.S. citizen. She said, "Thanks to ASK, I've been informed of the rights that Thomas has to apply for different programs regardless of my immigration status. I didn't know that he could be eligible for programs such as SSI and Medicaid Waivers and Children's Special Heath Care Services."
As she worked with ASK, Maria said, "Now that I know Thomas' rights, I'm more confident. I'm not scared to speak up for Thomas' needs. I understand as a U.S. citizen, Thomas has the same rights as any other child and I'm no longer scared to fight for his rights."