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 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
