Tuesday, October 22, 2013

OUR FUTURE

Last week, I was saddened to learn that the increase in Social Security for 2014, will be the lowest since nineteen seventy-five. About one point five percent People with disabilities and senior citizens depend on their Social Security and Supplemental Security Income Checks to live. I love my country. I am proud to be an American. We are a nation always willing to lend a hand to other nations, to help them learn to live in peace. Sometimes, though, in our willingness to help others, we may forget that there are people right in our own backyard who need help 

How can the increase be lower when the cost of food and utilities keep rising/? I’m worried about the future of Social Security, and Medicaid. If these programs disappear in the future, what will happen to the disabled and seniors who depend on them to live independently? If I were to go on Medicaid, I would only be given approximately six hours a day attendant care, five days a week. I need 18 hours a day every day. I would probably be placed in a nursing home.

A friend of mine, on Medicaid, once had to wait several days to have their medications refilled because their social worker was out of the office. This same friend needs some new equipment to assist them in their personal care. They have been trying to get in touch with their social worker, but the social worker has not returned my friend's calls.

My parents worked hard and saved their money because they knew I’d need care to live my life. I wish there was a program that would pay part of my caregiver expenses so that my funds could last as long as possible. When I told a social worker that's what I was looking for she said, "No agency is going to help with something like that." 

Services for the disabled and seniors need to be improved not cut. No one should have to wait days for their medication because a social worker isn't available to sign a form, or too busy to return a phone call. No one should have to risk depleting their funds trying to live the best life they can.

I'm sure you all have opinions. These are mine. I am worried about our future. I hope that programs and services for disabled and senior citizens will be better in the future. That programs and services that have been cut will be restored. Maybe that's wishful thinking. Something needs to be done so that all of us can live the life we want and deserve.









Sunday, October 13, 2013

WHAT'S IN A NAME?

Several weeks ago someone suggested I change the name of this blog to Confessions of a Disabled Warrior. I can understand why. People with disabilities fight battles every day.  They fight to be accepted and respected by society. They have to work twice as hard to prove that they are as good as everyone else.

They went on to say that if they didn't know me and they were surfing the Internet and saw my blog title they wouldn't stop to read it because the title wouldn't grab their attention. Because I want to expand my readership. and because I value this person's opinion, I thought seriously about changing my blog's name.

I always thought Confessions of a Disabled Diva would be the title of my memoir. Since I haven't started writing my memoir yet, when I got the idea for this blog, it seemed like the perfect opportunity to use the name. It 's cute and catchy. However, until a few weeks ago, I had no idea what the word diva really meant. One Sunday afternoon I found out.

The word diva is typically associated with opera singers and other famous singers, Divas are people who'll do anything to get what they want, not caring who they hurt or what it cost them. I also read something about a diva being into high fashion. None of these definitions describe me. I love to shop though, so does, that count as being into high fashion?

There was one definition I read that I liked. A woman who achieves success through hard work and determination can be thought of as a diva. I don't want to be famous, but I am determined to have this blog reach as many people as it can. It's happening already. When I look at my stats on Blogger, I have readers from all over the world. I'm amazed and overwhelmed.

So, I'll keep the name Confessions of a Disabled Diva. Plus, I have to be honest, it's pretty cool to be called Diva by someone who knows and reads this blog. When you think of the word diva in relation to this blog, remember the definition that spoke about hard work and determination because that's the kind of diva I am. 












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Monday, October 7, 2013

WHO'S HIRING?

Disability Employment Awareness Month is celebrated nationally during the month of October. In nineteen forty-five, Congress passed a law making the first week in October "National Employ the Physically Handicapped Week." In  nineteen sixty-two, Congress dropped the  word physically from the name of the law so that people with all types of  of disabilities could be included. In nineteen eighty-eight, the name was changed to it's current one and the week was expanded to a month. This year's theme is "Because We Are EQUAL to the Task.'

People with disabilities who are able to work want to work and contribute to society. We want to feel good about ourselves and know that we are making a difference. We have skills that need to be utilized in the workplace. All it takes is for employers to see past a person's disability and give then a chance to prove themselves. It also takes a willingness on the part of an employer to make the "reasonable accommodations",to enable a person with a disability  to do their job effectively  

The staff at Meramec gave me a chance. They knew how much I waned a job there. I developed my computer class so they could see I had something to offer them. They encouraged and supported me. Most importantly, they.believed in me.

To all employers who are hiring, give a person with a disability a chance. I guarantee they will work hard and be one of your best employees.

I hope someday. the need for a month devoted to motivating employers and making them aware of the ways hiring someone with a disability could be an asset to their company, will be a thing of the past. That we'll all be looked on as equals and be hired because we're the best person for the job.









Wednesday, October 2, 2013

I GOTTA KEEP ROLLIN'

I began using  a power chair in high school.  I may have mentioned, in a previous post, that my eighth grade teacher was disabled and a former student at the school.  She used a power chair for a while. When she didn't need it anymore, she left it at the school and I was fortunate enough to be the one who was given the opportunity to use it at school. The freedom it gave was indescribable.

My senior year in high school, we began looking into getting me my own power chair. I remember when they brought one to school for me to try out.  It was a chair from England.  I had that chair for many years and had very few problems with it.  But when I needed a new chair that chair wasn't available here anymore.  I guess it was too costly to bring to the States.

Shopping for power wheelchairs used to be like shopping for a new car.You would have the opportunity to see and try out a variety of different chairs and choose the one that best suited your needs.  Unfortunately,it is not that easy today.  

Today there are no more wheelchair showrooms.You are shown pictures instead of the actual wheelchair.  Your need must be verified by your physician   If you want a new chair,the vendor selling the chair must prove to your insurance company that there is a medical need for the chair you want. A twelve page form must be filled out and a physical therapist must come out to your home to asses your needs. If it's proven that the chair you want does not fulfill a medical need, you will be denied the chair you requested.  Probably sold a different chair. One that is more cost effective for Medicare or Medicaid. 

I have had the same power chair since  nineteen ninety-nine.  It's nothing fancy. In fact, I have been told that the design is a manual chair with batteries and motors attached. I like the chair because it is not that big and heavy.  It works well in my house. I desperately want a new chair, but I want the same model or as close to what I'm using now as possible. 

The manufacture of the chair I want  is in a decent decree with the FDA. The manufacturer failed to follow the proper rules and regulations as set forth by the FDA.  While the FDA reached an agreement with the manufacturer in December 2012, vendors are still not allowed to sell the chair I want because (from what I gathered from my research) the manufacturer has not passed audits and inspections subject to the approval of the United States District Court of Ohio.

I keep being put off.  First, I was told everything would be settled in June, then September and now I was told, hopefully, January. I don't really care what rules and regulations were broken by the manufacturer. I care that because they are not fixing their issues in a timely manner, I, along with many other disabled people, cannot get the chair we want.  Because my chair is old, the motors could stop working and at any time.  I pray that doesn't happen before I can get a replacement chair.

Those who make the rules at Medicare and Medicaid, as well as those who manufacture wheelchairs,don't spend eighteen hours a day in them. Give more control back to the consumer. Think about what's best for the person,, not just what's cost effective. I was told couldn't get a softer cushion because I don't have any skin breakdown. Rather than letting me have a softer cushion, to prevent me from getting pressure sores, my insurance company will only allow me to have a different cushion if I have a problem. What sense does that make?

Insurance companies should be concerned with the comfort and well being of individuals using wheelchairs, not just what's in their best interest.