This week, mom of four Tiffany Keunzi will be meeting with her local Congressional representatives in Pennsylvania for one reason: To enable her family—and others with medically fragile children—to enjoy vacations, a fundamental pleasure of life. Keunzi's son, Dillon, 8, has severe cerebral palsy. He has seizures, a tracheotomy to help him breathe, and receives 132 hours a week of nursing care paid for by Medicaid (as many medically fragile children do). The trouble: Medicaid will not allow the family to have a nurse accompany them on trips short or long, which is why Tiffany is pushing to create Dillon's Law, which will require Medicaid to allow medically fragile people to travel with a nurse using their allocated hours. Already, close to 11,000 people have signed her petition on Change.org. Here, she tells Parents.com her story.
So, what is Dillon like?
There are a lot of things Dillon cannot do, but there are many things he can do. He wakes up when we walk into his room at night and talk. He blinks a lot showing contentment when we hold him. He coos sometimes when music is playing or when we rub his head or back. Dillon cannot lift his head for more than three to seven seconds, but his therapists have seen him do it when his siblings tell him to! He loves to be part of the family. We just got a dog a few months ago and I see more hand movement when the dog is on Dillon's lap than any other time! He is a little boy! We want to be with him and help him be a little boy.
Please explain the kind of nursing care Dillon requires.
At 8 years old, Dillon weighs about 50 pounds and functions at or below a newborn level. He has a feeding tube that pumps food and water into him about 22 hours a day, and receives a breathing treatment two to four times a day. Every time he coughs his secretions need to be suctioned with a machine to keep his airway clear. Testing showed that in 72 hours, Dillon had 161 seizures and 1633 seizure spikes. His normal schedule includes giving him doses of medication 19 times a day. Dillon also needs to be on a ventilator at night because he will stop breathing for short periods of time. Both fortunately and unfortunately, the machine is very sensitive and alarms go off many times during the night. Dillon is fully dependent ON US for all self-care including diaper changes, bathing, dressing, and changing positions. The amount of care Dillon needs requires a person to be with him 24/7.
What spurred you to create this bill?
Several times, Medicaid has denied our requests to take a nurse with us on vacation, and to go to family weddings and even family funerals. Earlier this year, we requested to take a nurse with us on a Friday to Sunday trip to Massachusetts to visit Dillon's great great grandparents. They had not seen him since he was 8 months old, and had never met my other three children due to how hard it is to be allowed to travel with a nurse. We were requesting fewer hours for the trip than we would use if we stayed home. Our requests were denied, and we appealed.
Due to the timeframe, we did an emergency review with Medicaid. Dillon's doctor literally said, "Dillon is not a prisoner, he is a member of the family." They knew we were planning to leave that day and said they would call us right back, hopefully within the hour. This was Friday morning.... They didn't call me until Monday afternoon! The message said "I hope you went anyways and took your nurse with you."
This is when I decided this process needs to change! We should be allowed to visit grandparents without having to fight and appeal. Instead of fighting for just Dillon, we decided we need to fight for all families like ours.
As a special needs mom myself, I know how hard it is to balance your child's needs, your family's needs, and even your own. How has dealing with the Medicaid issue affected you?
I juggle many calls and appointments for Dillon. I should not have to add hours of time and stress in fighting Medicaid for a small trip or vacation. My time would be better spent loving Dillon, helping him be a little boy, taking him to the park, going to the zoo, sitting and holding him on my lap, and home schooling my other children, instead of fighting the same battle over and over again with Medicaid.
What has helped you through this?
Support systems like a wonderful husband, families who love and support us, a church who prays and helps us, and a doctor who is not going to back down from providing his patient with the care he needs.
Ellen Seidman is a mom of two, editor, and professional snacker who blogs daily at Love That Max. You can find her pondering special needs parenthood and other important topics (such as what her next snack will be) on Facebook, Twitter, Pinterest, and Google+ even though she still hasn't totally figured out what that is.
Top photo: Courtesy of Josh Berg Photography