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Fixing What Is Broken after Newtown

By       Message Mary Hodgman     Permalink
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View Ratings | Rate It Headlined to H4 12/19/12

They are going to do it again. When lung cancer really took the public's attention, congress went after the tobacco industry tooth and nail. They did nothing to pressure drug companies to work harder to cure cancer, so drug companies are now getting away with refusing to let their researchers pursue a cure.

Now we will see the government regulate guns, pat themselves on the back and do nothing more. Not that I don't think there is room for some legislation to control gun sales, but I think this should be a clarion call to truly examine our Mental Healthcare system. Having had to work with in that system for 20 years to provide care for a loved one with a mental illness, I am here to tell you it fails dismally in assisting you to take appropriate care of someone with a mental health problem.

I can count on one hand the people who were assets to my caring for my cousin with Down's Syndrome. Unfortunately that represented a very small percentage of the people who were charged with improving and maintaining her care. There is a revolving door, not for the clients, but for the people who provide assistance to care givers. For two years, my cousin had a new person who was supposed to help coordinate all her services every two months. They would be assigned to Randy and we would have to either disabuse them of the notion we were doing everything wrong or fight to get them to do their job. This was extremely time-consuming, frustrating and tiring. Couple the lack of consistent staffing for administering her services with a Health and Human services staff who viewed me as a deadbeat sucking money out of the system and you have a system that will bleed the life out of any desire to take good care of a loved one, let alone provide the care they actually need. I never made any money from caring for my cousin, so to be treated like I was every year when I had to renew Randy's medicaid made my job that much harder. In reality it cost more to take care of Randy, the way the system required and her health and well being required (the two were not necessarily related), than any income she had. This reality left me in debt, without any resources other than my home and in the end unemployable in the current jobs climate by the time Randy became too ill for me to safely take care of at home.

The worst time for me and for Randy was during the last few years I was taking care of her at home. She had Alzheimer's and when she truly started to show the signs of the illness the system I was trying to work with became more and more hostile. As Randy developed behaviors that were unsafe and antisocial I was frequently blamed for them. Caregivers in the required system for her to go out in the community twice a week were more than happy to point a finger at me than to accept that Randy needed more supervision, a more specialized diet, and more personal-hygiene care. Any increase in her level of care I had to fight for. As she became more apt to eat or drink inappropriate things, needed diapers or stripped down and dashed outdoors, I found that the only change in her care I was allowed to do by the system was to stay awake 24/7. I know that sounds ludicrous, but it was true. I did not qualify for in home assistance, I did not have the funds for it and Randy could not be physically restricted in any way. Including that I was not allowed to put alarms on the doors of my house to alert me if Randy made a dash for it. So I 'decorated' with wind chimes. I locked up the food and other things I thought she might get into. Randy just found new things to get into and I lost more and more sleep. For a year and a half I tried to get Randy a safer setting with better care. I was fighting a losing battle. The system was set up to keep Randy in my house no matter how unsafe it was for her and I faced prosecution if I didn't keep her safe. Not to mention she could have been badly hurt. In the end the only option I was left to keep her safe was to take her to the emergency room and refuse to take her home.

In summation the mental healthcare system is a monster that imposes unrealistic regulations on home-care givers, provides little or no support to the home-care giver, and no options when the person with the illness becomes behaviorally unsafe to keep home. From this untenable position home-care providers are expected to not only keep their charges safe as milk, the public is not to be imposed on either. It is high time this backward and detrimental system is changed and funded again. The single most-needed thing though is a change in attitude. The over all attitude is that anyone using the system is somehow stealing taxpayers' money. It has made it easier for politicians to cut and cut again funding, It makes it difficult for caregivers to fund necessary care and burns out, with frightening regularity, those who serve the mentally ill.


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A curmudgeonly old grand mother who just wants a better world for my grand children.

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Fixing What Is Broken after Newtown

History; to Repeat or Not Repeat That is the Question.