***Please forward this to every special needs family and everyone you know because we need your support, your action. We need people to get involved!***
To pass a law requiring Medicaid* to allow medically fragile people to travel with a nurse using the same number of nursing hours that has been proven medically necessary by their doctors.
You can help thousands of medically fragile people by supporting this legislation. It will enable families to be together with their loved ones – without the stipulation of medically required care only being allowed in the home, school, and doctors. Help medically fragile individuals gain freedom to spend more time with their families and in some cases enable them to visit relatives for the first time in years!
All across America, there are people who have been tragically effected by medical issues leaving them medically complex and fragile. Dillon is one of these people. He is 8 years old, and lives with his Dad and Mom and he has two little brothers and a little sister.
Get to know Dillon:
Dillon was born gray, limp and not breathing. Over time, his parents learned he has Cerebral Palsy due to his lack of oxygen. He has a g-tube where he gets all food, water and medicines. He has a trach to help him breath without gasping for air, he has a ventilator to help him breathe at night. Every time Dillon coughs, since he can’t swallow his secretions, he needs to be suctioned with a machine to keep his airway clear. Dillon has a wheelchair as he cannot sit, roll over, or even hold his own head up. Dillon has a stander to help him weight bear through his legs and strengthen his bones. He has never smiled in his life. He has cortical vision impairment (CVI) – which means his eyes work but his brain doesn’t process everything. His ears work in a similar way. The last EEG Dillon had done showed in a 72 hour period he had over 160 seizures and over 1600 seizure like spikes in his brain activity. His seizures do not respond to medication resulting in a diagnosis of LGS. There were so many spikes, by looking at his brain activity they could not tell when he was awake or asleep – his brain was in an almost non stop seizure like status!
Dillon can coo, he can let us know he is happy. He can breathe heavy, grunt, and start to kick if he is uncomfortable. He does manage to pull his ventilator off many nights since he does not like it. He loves music and getting his back and head rubbed. When his family talks to him his eyes will come down and shift – showing he is listening to them.
Dillon receives 132 hours a week of nursing care from LPN or RN. His hours are used 18.5 hours on weekday and 17.5 hours on weekend (when both parents are home) with a few hours left over just in case someone stays late. On more than one occasion the insurance company has denied them to take a nurse with them on a vacation to visit grandparents, to visit Dillon’s Great Great Grandparents, to go on a vacation, to go to family weddings, or even to go to family funerals! There have been a few times that his Mom has fought long and hard with the help of an amazing Doctor and has won in the appeal process after many hours of fighting. When the appeals went to a third party review they told the insurance “It is the standard practice of the industry to allow families to take a nurse with them on vacation.” And yet they still deny, forcing the Parents and the doctors in long lasting stressful denials and appeals.
In one case the family won the appeal to take a nurse with them on a weekend trip to visit family. The denial was overturned because it was found to be “medically necessary” to take a nurse to prevent Dillon from becoming worse. Then a few weeks later when requesting time for a family wedding that would happen a few months later they were denied again saying it is not medically necessary. Dillon didn’t change in his level of care, so why does the answer change from the insurance? Both of these times, the family was requesting to use LESS hours than they do at home, and were still denied.
We know we are not alone! We know there are many others with medically fragile kids or family members that are denied all the time! Some families including us, have been told, “It is insurance fraud if you leave the house with Dillon and his nurse to go anywhere other than the doctor visit or school.” We are being denied the freedom to go together to the park, to a store, on any kind of trip or outing together as a family with a nurse.
The insurance companies know they can and should allow this when the person is so medically fragile that they require it, but they know by denying families that are already worn out and exhausted they will defeat the family and cause them to give up. We know many families that have not been on a family vacation in years simply because a child requires a nurse and they are not allowed to go. Our children should not be held on house arrest, they are people, they should be allowed to go to Grandma’s house, to go to the beach, to go to the mountains or whatever with their family. Many of them will have a life expectancy much shorter than the average person. We want to be free to enjoy family time together – while we are still all together! The family should not have to be divided, as the insurance has told us to be, with the Dad staying up all night long and sleep during the day and the Mom can stay up during the day with all four kids. This is not a way to build a strong family, this will help destroy families that are often hurting as it is. Special needs families are under so much stress, often watching a loved one fight and cling to life. They should not be denied a break from the house every once in a while.
They should be allowed to travel with a nurse using the same number of hours as they are currently approved for!
Please sign the petition, share the petition and help us make life for special needs families just a little bit easier! Some families including ours have been told, “It is insurance fraud if you leave the house with Dillon and his nurse to anywhere but school and the doctors.” Medically involved family members are denied and held on the equivalent of house arrest, unable to go to the park, the store, or any family outing and trip away from home.
If you are wondering right now if you will actually sign it or not, I ask you to think about this. Dillon’s parents were 20 and 22 when he was born, they were first time parents, they shared their very first kiss ever at their wedding just 10 months before, they did everything right during the pregnancy, planned, prepared, prayed for a baby, etc. Then something went wrong. None of us are promised health, none of are promised perfectly healthy babies, none of us know for sure we won’t be in a car accident, or develop a progressive disease, etc. This could be you. It can happen at anytime to anyone and then you will need this. It could have been your baby, your brother or sister. This could have been a struggle in your family, it could be you being denied the ability to go visit family just because you have a child with medical needs. Please consider this and sign it to help those of us who are living this way.
If you are a family directly impacted by this in that you have a medically fragile member in your family that receives nursing care: I ask you to reach out to me! I need you! I need your stories, I need your help to make this happen! I need examples of denial letters to provide with my petitions to help this become a law. Please email me, Tiffany (Dillon’s Mom) at PassDillonsLaw@gmail.com
*Note: Dillon is on Medicaid due to his disability alone as are many other individuals.