Kevin’s Freedom Fund

By Kevin's Freedom Trust

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We are asking for donations to assist Kevin Barton in supplementing his home health and nursing care as well as preserve his quality of life.

Tennessee State Medicaid along with its MCO, Amerigroup, has drastically reduced the amount of hours they will provide in his home health care. Without being able to supplement this care with additional care, he will not be able to continue living independently in his own home like he has been doing for the last 22 years.

Kevin was diagnosed shortly after birth with a form of Muscular Dystrophy called, Spinal Muscular Atrophy. It is a genetic disease that affects the motor nerve cells in the spinal cord and causes progressive weakness of the muscles. Medically, Kevin’s life expectancy was less than a few years.

Kevin has never been able to walk and has required total assistance his entire life. Throughout childhood and young adulthood he had some strength in his arms that he no longer has today at the age of 40. For instance, there was a time when he could feed himself, turn pages of a book and hold a phone to his ear. Due to the progressive deterioration of his muscles he can no longer do any of those things. He has very limited movement of his right hand which allows him to drive his power wheelchair. He also continues to have full mental capacity and communication skills and abilities.

Despite his disability, Kevin has been able to earn a Master's Degree in counseling, work in the counseling field for several years, advocate for people with disabilities, work as a songwriter in Nashville, Tennessee and do some motivational/inspirational speaking. He has been able to live such a full life because of the one-on-one care the state Medicaid's used to provide which is now being drastically reduced.

Very little options are being given to Kevin to be able to keep living independently in his home (which he owns) and to maintain his health and quality of life. Services offered through Tennessee Medicaid waivers are very limited as to the hours he could receive for one-on-one assistance. Since the age of 18, Kevin has lived on his own and doesn’t have any family that can “pick up the slack” and fill the gaps that Tennessee Medicaid will no longer cover. Kevin says that his fight is to be able to continue living independently on his terms in his home. He expresses that the extraordinary quality of life he has been able to live thus far is a direct correlation to the level of care (one-on-one 24/7) he has been able to receive. That has equaled his freedom and what he would like to believe is his American right to life, liberty, and pursuit of happiness.

Updates

3 Comments

  1. Billy

    God bless you brother hope that helps wish I had more to give! Things need to change on this issue. Love you man!

    Billy D

  2. Corey

    Do you still have that Latin Video we made? I should be more clear….,, Latin Class video

  3. Suzanne

    Kevin, we met you when you were a baby. Say hi to your Mom for us.
    Bill and Sue Crane, Norfolk, MA

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