Who Will Care For Our Son When We Are Gone?
My son's chance at a normal life was destroyed by a massive seizure disorder when he was 5 months old. He is now 38 years old, and he lives with us. He still has occasional seizures, and he cannot be left alone. It has been 38 years since I have been able to leave my home for any purpose, work or leisure, without making childcare arrangements.
When my son aged out of the school system at 21, he began attending a day program that offers him the opportunity to do simple work and socialize with others. Medicaid pays half of the cost of that program. It covers the cost of the 6 medications my son takes daily to prevent seizures. In addition, it funds group homes for people with disabilities who no longer have families. I am 70 years old; my husband is 75. We are one of about 4,000 families in my state hoping to get a group home placement for our son before we die.
The massive cut in Medicaid proposed by the Trump administration will only add thousands more families to that endless waiting list. We have no assurance from anyone that someone will take care of our son when we are gone. Millions of other people with disabilities and their families face the same challenges. We literally do not dare die. I hope that wiser, more compassionate people will prevail and defeat the inhumane and cruel AHCA and devise a budget that takes into account the legitimate needs of our most vulnerable citizens. Please help us.
- Linda Cades