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September 1st  2007

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Dad On Wheels

To Be Free Or Not To Be Free; A Nursing Home Debate

Leslie A. Johnson, BSW 

     I remember one time walking (rolling, no pun attended) into a nursing home.  The odor took my breath away as I gasped for another breath.  The smell was of urine and I clearly could see some wet spots, when I looked down the hall.  When I was going down the hall, I had to remove three wheelchairs, a mop bucket, and a gentleman in a wheelchair sitting in the middle of the hall, which he could not move himself.  What was I doing there?  I worked for a nonprofit Center for Independent Living, which my job was to assist moving people with a disability out of the nursing home.  They had to be between the ages of 18-59.  Yes, many people with a disability are in nursing homes, especially young adults.

     The nursing homes hated to see me come into their establishment.  Do you know why?  I was trying to move people out that should not of been there in the first place, so it would take money away from the nursing homes.  People with disabilities are put in nursing homes for several reasons, such as:  No family support, rehabilitation, or get lost in the red tape.  I have seen it all when it comes to why people with a disability are in a nursing home,

         Family support is one of the biggest reasons why people with a disability are in the nursing home.  Many families have legitimate reasons why they put their family member in the nursing home.  Families may not know the resources certain states have available to assist them in housing, equipment, personal assistance, and medical.  On the other hand, some families put their member of the family in the nursing home for selfish reasons.   They know about the resources and I have heard some family members say, “I just do not want to deal with him or her, this is where he or she belongs, I do not have the time, he or she cannot live by him or herself.”  Well guess what; they are all wrong!  Living independently does not mean a person is just thrown into society to fend for him or herself.  People with disabilities living independently means they can have adaptive equipment to assist them, a personal assistance to help bathe, cook, and clean, and housing that is accessible. 

     Next reason people with a disability are in the nursing home is because of rehabilitation.  Rehabilitation?  What happen to Rehabilitation Centers or Rehab?  They are gone and why put someone in a rehab center when the nursing home can do the same thing.  That is the problem; nursing homes cannot do the same thing.  I have seen people with a disability go into a nursing home, because of they had surgery and rehabilitation centers will not take them.  They are put in the nursing home for a short period to rehabilitate, but they are there for more than six months.  It does not take six months to strengthen a muscle or reinforce a bone.  I have seen a gentleman in the nursing home for over a year for a broken hip.  Yet I have seen a quadriplegic with a ventilator and cannot move any limbs live at home and is enjoying his independence. 

     Another reason people with a disability are in a nursing home is because of all the red tape.  They get lost in the shuffle.  The doctors, whom the person with a disability sees on a regular basis for a particular reason, are in contract with the nursing home.  I am not saying that anybody gets kickbacks; no I would never say such a thing, a person could figure that out on his or her own.  Speaking of kickbacks, the nursing home is a big business and they have their own lobbyist. 

        The Lobbyist for the nursing homes are enormous in size and our state government or the United States Senators and Representatives will not take them on, because they give too much money for campaigns and endorsements.  The nursing home is a business and a big business.  Nursing homes do have legitimate practice and can be of assistance to people who want to be in there.  Yes, some people want to be in the nursing home.  

     Many alternatives to the nursing home are in place if only the states would utilize the alternatives.  Illinois has been trying to pass the legislature for years, Money Follows the Person.  The Medicaid monies allocated for paying the nursing home for the person can be used to follow the person and be used to assist the person to live outside of the nursing home.  According to WSANA (West Suburban Access News Association), “Texas' Money follows the person program has operated since September, 2003.  Since it began 10,711 have opted to leave the nursing homes.”  Illinois and other states have been trying to lobby for the legislatures to pass the Money Follows The Person and have been resisted by big lobbyist and the nursing homes.  In May of 2007, Illinois has allocated monies for the program of Money follows the Person, which was long over due.  As an advocate for people with a disability, this initiative brings a great hope and joy to my heart, so I can see more people with a disability to live free and independent!     

WSANA. (2007). Texas Money Follows The Person. Retrieved on August 28, 2007 from    

Leslie Johnson

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