What is it Like to Live with Disabilities

My husband, Miguel Jeldes, and I have two sons, Alex, 18 years old, and Leo, 12 years old. Both of […]

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My husband, Miguel Jeldes, and I have two sons, Alex, 18 years old, and Leo, 12 years old. Both of our boys have disabilities but they couldn’t be more different. Even though their needs are quite different, we depend on supportive services to help us care for them as well as pay for the cost of these needs. Let me tell you what I mean.

Alex has severe mental and physical disabilities. He lives out of our home in an ICF/MR (Intermediate Care Facility for Persons with Mental Retardation) children’s group home. He lived in our home until he was eight years old. Alex does not talk or walk, nor is he able to be left alone, for he has no capacity for judgment. He is a nine-month-old in the body of an 18-year-old. He has intensive daily care needs, such as feeding, diapering, dressing, etc. as well as seizures and screaming behaviors that need to be managed with medications. His needs created many hardships for our family. His daily care alone was physically and emotionally exhausting. I would say the biggest hardship for us was maintaining consistent employment to support our family while caring for him at home. Since moving to Vasa Children’s Home in Red Wing, both of us have been able to work and properly support our family.

Leo has Duchenne Muscular Dystrophy and has physical disabilities. He is very bright and has no cognitive needs. However, his physical disability is degenerative, which means his muscles get weaker over time and makes it impossible for him to do everyday functions such as walking, dressing, etc. independently. He will always need someone’s help. For one year now, our family has been assisted with Leo’s cares by a Personal Care Attendant (PCA). Leo also has expensive healthcare needs. We use MA (Medical Assistance) / TEFRA to help us pay the medical expenses not covered by private medical insurance as well as pay for PCA services. We are happy to pay our monthly parental fee to be part of this program. Without TEFRA we would incur enormous debts and would be unable to support ourselves.

Often we feel overwhelmed. We don’t want anyone’s pity or special treatment. We need funding for supportive services that help us to function as a productive family unit. Without these programs, we would be unable to meet our children’s needs.

Elizabeth (Libby) Johnson and Family, St. Paul, Minnesota

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