ACTION ALERT: Dillon’s Law – Helping Medically Fragile Families in America

April 24, 2015

Dillon’s Law would require Medicaid, Medicare, and private insurance companies 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 and have been approved by the insurance.

Currently, families all across America struggle with stress, doctor appointments, hospital stays, nursing care issues, etc when they have a family member who requires medical attention. Many families who are approved for nursing care are denied the ability to ever travel with a nurse to go to family weddings, or to Grandma’s house, the beach, a vacation, or even family funerals.

Some families and doctors have been told that if a child goes to a park or a grocery store with the nurse it is insurance fraud because they are only allowed to be at home, go to school, and doctor appointments. Other families say they have not had a vacation in over 10 years!

Families are faced with three options; 1. They can never go anywhere. This is not a good option, everyone needs time to break away and renew and reconnect as a family. 2. They can go on vacation and leave the medically fragile person behind. This only works if you have 24 hours care, and still is not a good option as nurses sometimes call out. This also separates the family and is not good for siblings, the parents, or the individual/child. 3. The family can go on a vacation without a nurse. This option would mean the child cannot receive as much medical care as when a nurse is there with them. This puts the child at risk for complications.

This option also means that one parent must stay awake all day and one all night. This again is not helping a family deals with life threatening issues to reconnect and enjoy each other. Many times, the individual that is medically fragile is expected to have a shorter life expectancy. We want to allow families to enjoy their time together, while they are still all together..

We believe the current situation is not right! We believe a person with medical needs is family member and belongs with their family as much as possible. We believe that families who struggle under the weight of such difficult situations should not be held on “house arrest.” One doctor told the insurance companies that the child “is not a prisoner! He is a member of the family!” The insurance companies say it is acceptable for the Mother to stay up all day and the Father can stay up all night. We do not believe this supports a strong family unit and is not reasonable. If a person and their doctor have proven it medically necessary to have the nursing care, they should be allowed to use the same number of hours at the park, the store, going to Grandma’s house, going on a family vacation, etc. The level of care does not change based on the location of the individual.

Want to help? Sign the petition here:

Thanks to Dillon’s mom Mrs. Tiffany Kuenzi for this piece.

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