Lack of Facilities an Issue for Severe Brain Injury Patients

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Neal Sandifer, 34, lives in a nursing home in Columbia, unable to care for himself. He used to be athletic, with a love for hunting, but in 2008 Sandifer fell from a deer stand. The accident left him permanently brain damaged.

Nursing homes are not equipped to treat patients with severe brain injuries. They aren’t prepared to handle the anger and outbursts often associated with Sandifer’s injuries, but many severely brain-injured patients need constant assistance and a controlled environment.

The nursing home is the closest Neal Sandifer and his family can manage to a long-term care facility, but soon he will be forced to leave. Sandifer doesn’t know where he will be going after however, because there is no long-term, in-patient care facility in Mississippi for those with severe brain injuries.

The nursing home Sandifer’s family found for him has given notification that Neal will be removed by the end of the month, and at this point, the only plan his family has is to bring their son home, though they know they can’t offer the care he really needs.

Sara Sandifer, Neal’s mother, is the victim of a brain hemorrhage from years ago, which has confined her to a wheelchair, and Robert “Pat” Sandifer, Neal’s father, is retired. A place in Louisiana was willing to accept Neal, but Robert can’t afford the cost of $600 a day.

“I’m retired; we had some money saved, but I’m going broke fast trying to care for my son,” Robert told Jimmie E. Gates from the Clarion Ledger.

Sandifer’s situation is indicitive of the issues facing severly brain injured patients across the country.

Lee Jenkins, executive director of the Brain Injury Association of Mississippi, advocates for in-patient, long-term care facilities for people with traumatic brain injuries, and fully realizes the conflicts that arise. “Some patients with brain injuries can’t go home because no one can take care of them.”

The issue with opening facilities like Jenkins pushes for is the astronomical costs of running the operations. According to the Brain Injury Association of America, extensive rehab can cost anywhere between $600 and $8,000 a day.

There are a few in-patient, long-term care facilities that are capable of caring for victims of severe brain injuries, but most can’t afford them. What is worse, the few that can afford to pay for the facilities often have to be moved across states, away from their families.

That is a difficult choice for parents like Robert Sandifer to have to make. Do you send your child states away to receive care that will almost inevitably drive you bankrupt, or do you keep them close, where you can still see your badly injured child but they won’t be able to receive proper care?

 

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17 Responses to Lack of Facilities an Issue for Severe Brain Injury Patients

  1. Anne Tennison November 2, 2012 at 4:03 pm #

    I am the mother of a 27 yr. old son with a tramatic brain injury from a car accident 9 years ago. For the first 6 to 7 years after the accident my son was very motivated to work out and improve as best he could. In the last 2 plus years we started noticing a change in his behavior. He began by being very consumed by other people or events. Then he started telling us that he had spoken to people and had plans with people to do things but we knew he had not made these plans. Then the stories got more constant and more out there. I read about TBI and confabulations that they can begin to experience but I have been looking for any good medical Dr. for the past 10 months that will even treat my son and know what is going on. He has had to be hospitalized 3 times in 4 months. He is put on anti-psycotic drugs that I understand do not help TBI patients with confabulations. We are desperate to find a good facility to help him.I feel like he is being mis-diagnosed over and over and not treated the way he should be to help him. Any information on this would be greatly appriciated.

    • Yolanda August 24, 2016 at 5:34 pm #

      I am the mother of a 27 year old that suffers from TBI also due to a car accident in 2008 when he was only 19. My son was totally non moble and also non verbal.he was NOP. His whole right side was badly contracted. For the past Three years he has had two major surgery to fix that and since he has been eating by mouth and some what verbal. My son goes to Kesslers in west orange nj. The doctors their are great and the treatment that they use with the medication are why my son is where he is now. Where other doctors though that he was going to be brain dead. Thank GOD that we went to Kesslers. I wish u the best with ur family.

      • Rolf B. Gainer, PhD August 29, 2016 at 8:23 am #

        There is a shortage of adequate programs and services for people with brain injuries throughout the United States. While there are excellent programs available, the capacity of these programs to accommodate the needs of recent acute brain injuries and the long-term rehabilitation needs of people living with severe brain injuries is limited. Brain injury creates many health disparities which can effect the quality of life and even life expectancy. Solving the long-term problems of people living with brain injury disability will require improving access to programs through significant changes in available funding and insurance. Medical advancements can keep people alive, but we need to have the resources available to take care of them in the years following their injuries, including as they age with brain injury disabilities.

        Please let us know about your experiences with finding services.

  2. Elizabeth July 12, 2014 at 7:38 pm #

    Thank you for Sharing your story. This is indeed a crisis that is going in our country.
    My brother is 38 and has been kicked out of 26 facilities because if his
    Brain injury. We live in Texas and have run out of options. There are
    No places that deal with brai injuries that are not private pay.
    I have begun writing to senators and celebrities to bring awareness
    To this issue. I am curious if you have found anything
    For your son since this post was written.
    Please feel free to email me. Hang in there.

    • Susan March 15, 2016 at 5:03 pm #

      Hi, my name is Susan and I have a brother that has been in quite a few nursing homes , due too his stroke causing dimentia and expressive aphasia . I am very depressed and soooo upset about the issue with my brother being 63 years old on Medicaid and the only place he is allowed too live is in a nursing home 130 miles away from me with a 1 star rating. I can’t sleep because I worry about him. This is rediculous. He should be entitled too be treated like a human being and because of money he is in a dump. My heart hurts because I can’t take care of him. If you need my support in advocating this issue, I am in!!! 100%. Please reply. God bless.

      • ara May 6, 2016 at 8:13 am #

        Hello My Name is Araceli i live in Houston Tx..thank you for sharing your story im sorry for the frustration and pain you are going thru.. I have a sister that suffered a brain injury 15 yrs ago from a motorcycle accident she is now 41…she has gone thru so much and been in several nursing homes far away from home…it is very frustrating to me that Houston is a very large city and does not have a facility that can offer the care that my sister and any brain injury person needs. she is now in a facility about 100 miles away from home it took me a long time to get her there the facility is not the best but they do care for her very good and is equipped to take care of patients that suffer from brain injuy, dimentia and other mental disorders. It is also sad that they can’t get good benefits my sister has been suffering problems with her teeth that now need to come out and insurance won’t pay for it…for the reason that ifs not a medical emergency makes no sense to me she has been on pain meds and antibiotic for over a year…i also feel useless and very sad that i can’t do much for her.

        • edythe ryan January 26, 2017 at 8:30 am #

          there is a new program called star plus medicaid. if you can find a dentist outside the nursing facility that takes the star plus program that she is on then you can take her to that dentist.

    • Frank September 6, 2016 at 12:54 pm #

      It has been 2 years since your post, Did you find any solution? We are in the same situation. We need to find a place for my brother in law but we have no money.
      Thank you for any help. Jackie

    • Stacy January 4, 2017 at 10:41 am #

      Has your brother been in assisted living in Texas, or brain injury rehab? I’m looking for a place for my husband. You are correct, thrre really isn’t anything once they’ve decided intense rehabilitation is no longer viable

  3. Dana January 30, 2015 at 4:59 pm #

    I am the Mother of a 24 yr. old whose accident was in 2009, because of a drunk driver. He was 18 at the time of his accident, which left him unable to walk, talk or eat, but understands everything going on around him. Trapped in his own world, depending on everyone around him to care for him. At the age of 21 he was down to 96lbs in a nursing home in Bossier City, La and knocking on death’s door. I found a facility in Iowa that would take Zach. It is a one of the kind facility and we moved from La. to Iowa lock stock and barrel so that Zach could have the proper care. I know not everyone is able to do as we did, but we long to be back home, or closer at least. I have searched and searched, most places are private pay, workman’s comp. Or the TBI patient has to be able to assist, no feeding tube. Zach can not assist. I had one place in La south of us, tell us they would take him, but he had a feeding tube. found another place outside of Austin, Tx, but Zach could not use his hands so they would not take him. How very sad that these place will not take some such as our young loved ones who suffer with a TBI and need the SNF long term care, but have to be placed in a nursing home where the care is horrible. I almost lost my son because of their negligence of not feeding him, and probably were not giving him his meds as well. I have wanted to start a viral video to reach out to build a facility that would house more tbi’s such as my son, but no one wants to help. You either have to be rich or famous to get noticed for something such as this. what a shame. I am thankful for the place in Iowa, but still searching and praying for a place closer to home.

    • Gloria July 8, 2015 at 5:58 pm #

      My son is 53 now. he has TBI from a motorcycle accident. This happened eight years ago. He has lived on his own all this time. The last two years he became totally different. No bathing no changing clothes a real danger walking to the store sometimes 8 times a day. Just lots of behavior changes, He has never been medicated since coming home/. He is now in a nursing home. It of course is not working. They sent him for an evaluation he is coming back tomorrow.

      No one in this family can take care of him. Just so sad there are so many people like him Now so many soldiers coming home with TBI. God help them all.
      So sad that we take care of so many people in other countries but cannot take care of our own . Same ole same ole..

      • ara May 6, 2016 at 8:14 am #

        Hello My Name is Araceli i live in Houston Tx..thank you for sharing your story im sorry for the frustration and pain you are going thru.. I have a sister that suffered a brain injury 15 yrs ago from a motorcycle accident she is now 41…she has gone thru so much and been in several nursing homes far away from home…it is very frustrating to me that Houston is a very large city and does not have a facility that can offer the care that my sister and any brain injury person needs. she is now in a facility about 100 miles away from home it took me a long time to get her there the facility is not the best but they do care for her very good and is equipped to take care of patients that suffer from brain injuy, dimentia and other mental disorders. It is also sad that they can’t get good benefits my sister has been suffering problems with her teeth that now need to come out and insurance won’t pay for it…for the reason that ifs not a medical emergency makes no sense to me she has been on pain meds and antibiotic for over a year…i also feel useless and very sad that i can’t do much for her.

    • Michelle Solomon May 25, 2017 at 6:04 pm #

      I realize your post is two years old. Wondering if things have gotten better. My son was involved in an auto accident sept 2015. I’m having the same problem, no place will accept him. He is bedridden, non verbal and on a feeding tube. He’s 29. He was recently evicted from his AFH because they can no longer care for him. No facility will take him because of his age or because he can’t participate. Very frustrating. We live in Washington state and there are no facilities available here. If anyone has info on anything in this state please let me know. Thank you!

  4. Susan March 15, 2016 at 5:09 pm #

    I am truly speechless at the idea that our loved ones are being neglected and not cared for properly , due too Quote , unQuote , NO MONEY. We live in the United States of America and our health system is such a joke that it literally makes me sick too my stomach. We need too fight together and get people more aware of the terrible crisis we are in. But we need too do it together. Please reply if anyone is interested. God bless .

  5. Patrick J Hudson June 13, 2016 at 7:04 am #

    Hi name Patrick SR my son Patrick Jr has Tbi n he already before the accident had psychotic episode now he has Tbi he has gotten worse with the outside world but with me he’s OK it just I don’t have the financial stability n I don’t want him go to a home he’s has been though so much he was n behavior facilities off n on his entire life n on top of that we lost his his sister n 2014 due to a drowning accident can someone help me some kind of way thanks n be blessed

  6. Christine June 25, 2016 at 5:20 pm #

    My son Jeremy 25yrs old has a TBI & behavioral issues. He was in a car accident at 16yrs old. It’s been differcult caring for him at this time. He was accepted for long term care but finding a facility that deals with his TBI has been very differcult and I don’the have the kind of money they want for private pay. Why can’take there be more help.

  7. Laura Widmer June 5, 2017 at 11:06 pm #

    My son is 18 and has a TBI from a car accident on May 1, 2017. We live in Pensacola, FL. He isn’t responsive enough to go to a place like the Brook’s Center in Jacksonville FL. Don’t know if we can care for him at home, not sure what to do. Help

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