This is the actual letter I sent our senators today.
When my son, Max, had just turned a year old he was admitted into Children's Hospital Colorado for a month due to a severe allergic reaction to the flu vaccine. Max was born with a very rare metabolic disease called Cobalamin X, which was identified first in him as a new disease by doctors and scientists at University of Colorado and Children's Hospital. Max also has a severe form of epilepsy. Because of his multiple disabilities, the reaction to the flu vaccine caused many complications, including respiratory failure. In the month Max was in the pediatric ICU at Children's Hospital Colorado when he was one year old, they tried to wean him off of the vent that was breathing for him, but he could not breathe on his own, so a surgery was scheduled to put in a permanent tracheal tube and a vent would do the breathing for him for the rest of his life.
At this time, we had excellent private insurance and everything was paid for. By the end of Max's first year of life, he had spent over 70 days in the hospital, had had multiple brain surgeries, and had racked up over $2,000,000.00 in medical bills. We only had to pay a $25.00 co-pay for bringing him into the ER the first time. When the conversation of Max needing a tracheostomy and a vent to live came up, it didn't matter that we had great insurance. Our excellent insurance only went as far as the hospital walls. If we wanted our baby to live, he would have to live inside the hospital, in an isolation room, on a vent because our insurance wouldn't pay for the in-home care required to have a vent. We were told to be able to take him home, he would have to be on Medicaid, but it would likely take a year for him to be approved because of the long wait-lists for Medicaid at the time. We were given the choice to take our baby off the vent and let him die or choose to let him live by giving him the surgery which would mean living in the hospital for a year or more.
We chose the surgery and tried to come to grips with the fact that we were going to be moving into a hospital with our son to for him to stay alive. We were a middle-class family who made far too much income to qualify for Medicaid and were being forced into living in a hospital with our baby. We had started the process of determination for Max to get Medicaid through a waiver based on his disability and not on our income, and scheduled the tracheostomy surgery for December 1, 2004. The morning of December 1, 2004, in the PICU at Children's Hospital, Max started coughing. He coughed and coughed until he had coughed the breathing tube out. By a true miracle, the doctors discovered he was breathing on his own and the surgery was canceled. Within a week we were home with our baby. We had avoided living in the hospital but knew to avoid being in the same situation again Max would need to be on a Medicaid waiver for life.
Before the scare of having to live inside the hospital with Max was a reality, we had no intention of putting him on Medicaid. We were ignorant and didn't know it wasn't just a type of insurance for low-income families. We didn't know it was also an insurance for children and adults like our son. We didn't know he would need it. We didn't know our lives, and everything we were working for could be destroyed without Max having a Medicaid waiver. Max has been able to live at home now for 13 years, with a Medicaid waiver and private insurance. He has had many other kisses with death and many more hospital stays. But when he's healthy, he's home - and at home, he's THRIVING and LIVING. He has been able to get therapies at home throughout the years because of Medicaid. These therapies have allowed him to become stronger, and have given him a way to communicate. Because of Medicaid, we have been able to adapt our home as he's gotten bigger to make it the best living environment he can have. Max is homebound most of the time because of his medical fragility, but when he can get out in the community it is because Medicaid paid for the ramp outside of our house, and the lift into his van. He is able to get to his doctor's appointments, but also to the zoo. Medicaid has given him a good life.
Max is proud of his abilities. He never says he has disabilities. He says, "I am able." He is proud of every little thing he can do, and we are too. He doesn't remember the time when his parents stood crying over his hospital bed having to decide between life and death, begging him to fight and to live, but we do. Because he chose to fight to live, we fight every single day to give him the very best life. I implore you to vote no on the BCRA. Don't take us back to the days when people in wheelchairs and with Intellectual and Developmental disabilities were warehoused in hospitals and nursing homes. Don't take away Max's quality of life. Don't support any piece of legislation which will make cuts to or put caps on Medicaid. Remember Max, remember he is able. He is who you work for.
Mom to Max
Medicaid is how children and adults with disabilities are able to live at home. Medicaid is how Max is how Max will be able to be cared for in his home for the rest of his life. We will continue to fight for Max to be able to live at home. We will continue to raise our voices for him. We will continue to tell his story.
If you don't have a Medicaid story to share with your senators, share Max's. Because he's worth it. Max is worth it all.
|Max was intubated after a severe allergic reaction to the flu vaccine after his first birthday.|
|The day we were told he was going to have to live in the hospital on a vent for at least a year.|
|We knew deep down he was a fighter.|
|After the tube was removed and he was able to breathe on his own.|
|Happy and thriving 13 year old Max.|