Starting a new year is always exciting — the fresh look of a new number is symbolic of moving forward. I am filled with a great deal of gratitude and optimism. I find myself in an almost identical situation as I was in 2010 — when my music career and album was just a hopeful dream… My bags are packed and I’m staring at 2 plane tickets to Nashville to work on music!
What’s different this time is that the fire of my passion in my heart in soul is being squelched by fear and the realization how vulnerable my safety and well being really is. The recent kidnapping and torture of a mentally disabled man is just the latest piece of evidence that validates my fear and concerns for my freedom and safety. These are very uncertain times for people with disabilities and the elderly population. Our rights to life, liberty, and the pursuit of happiness have been increasingly difficult to attain especially over the past 2–3 years because we’re having to fight harder and harder to hold on to the freedoms that most usually enjoy without thinking about it.
My life began with a very turbulent birth that resulted in Cerebral Palsy, a severe physical disability that causes me to rely on others to perform basic tasks of everyday living. Despite many challenges of the disability, I was raised in a modest and loving household where I was treated just as any other kid. I was raised not to make excuses for myself as a reason not to accomplish anything I set my mind to. I was taught that I had the same opportunities to succeed as anyone else without a disability had. My parents also taught me how to manage money from a very young age since I was required help for the rest of my life.
Over the years, especially since college and beyond, I have become fairly skilled in how to build working relationships with others, and the dynamics of human resources. I have also tried to implement the golden rule and treat others how I would like to be treated. I have been blessed to have been able to walk on a path to success and built a foundation to what looks to be a very promising career. That all came to a screeching halt when the Federal government stole my freedom, as well as the freedom of millions of other people with disabilities and illnesses, at the end of 2013.
That is when I learned I would no longer be able to afford the kind of care I required because of an order from the Department of Labor which set strict and fatal regulations that demonizes and vilifies everyone that requires care in their homes by eliminating protection that enabled us to create good, stable jobs in return for good stable care which in turn contributed to independence and freedom.
The rule change required attendants to be paid overtime, but no funding was provided to accompany this rule, which resulted in cutting the hours attendants are allowed to work in order to avoid paying attendants overtime. “Instead of improving the lives of attendants and attendant service users, the new regulations have actually destabilized services and reduced the take home pay of some attendants,” said Mike Oxford, an ADAPT Organizer.
Without these protections, the cost of care rose more than 100% in one year, making rates unrealistic for millions and millions. Many people have had to cut back on quantity of care, therefore decreasing their quality of life. This set up a situation where a majority of people with disabilities and illnesses have no choice but to be round up like cattle, and get thrown into institutions like nursing homes, and therefore taking away our freedom and the ability to live full, productive lives, not to mention cutting many, many jobs for caregivers simply because it was no longer affordable.
Even many state funded programs cannot afford the new Federal DOL law and as a result cut the hours for both the client and the caregiver. “It threatens our system of providing services that allow many elderly and disabled in Kansas to continue to live independently in their homes and communities rather than in institutions,” Gov. Sam Brownback said in 2014 regarding the law’s effect in his state.
I have worked hard all my life to live frugally so that I could provide good — paying jobs to those who take care of me. I have also learned to identify those who can benefit from working with me beyond the inherent financial benefits that a job naturally offers. However, in reading the DOL regulations, I personally feel insulted and dehumanized, and at times even ashamed to be alive. I have always given credit to those who help me for the major part of my success. I realize that my life literally depends on those around me, and I have enjoyed the ability to have the kind of relationships that many able-bodied people don’t have the luxury of knowing about. I also am very aware of the vulnerabilities that go along with depending on others to live.
It may be quite difficult to understand the magnitude of the emotions that go along with being totally physically dependent on another person unless you are dependent on another person. For those of us who are fully dependent on others for everyday living, we often have to face the choice of putting up with some type of abuse or shame just to try and live another day. This may sound like an exaggeration, but the truth is it is the reality of millions of people who rely on others to live, especially the elderly, and people with disabilities who do not have a large community of people.
To illustrate this, imagine if you woke up tomorrow and you were unable to do much for yourself because of a brain injury you received from a car accident and you need help with everything from getting washed up and getting dressed to eating and drinking. Every time you need to use the bathroom, someone must help you on and off the toilet. One day you discovered that your main caregiver is sneaking into your bathroom to shoot up heroin, and becomes verbally and even physically abusive to you on a number of recent occasions. The obvious solution would be to kick this this person the hell out of your home, and find a new caregiver, but what if you factor in the reality that the recruiting, hiring, and training process can take weeks or even months. If you fire this person immediately, who is going to help you with your essential needs? Moreover, you are aware that hiring a replacement in an urgent situation like this can likely result in the same type of experience or even worse. What do you do?
The example above is not a hypothetical situation, I have lived through it and many other horrifying experiences before these new DOL regulations. I could absolutely kick abusive people out of my home knowing that I could call on an agency to send temporary caregivers until I found a suitable replacement. Today that is no longer an option, because I would probably end up losing my home, because of the unrealistic costs involved. The DOL regulations entitle these criminal caregivers to have the upperhand give free passes to anyone who bullies.
Sadly, I am one of many. Earlier this year, the Star Tribune spoke with a man named Lance Hegland, who has experienced similar troubles. Hegland, who has spinal muscular atrophy, said he has gone many days without help for basic needs. He developed a pressure sore on his leg due to going long hours without someone to help him get out of his wheelchair. He also cited paying over $300 a month on online ads soliciting new caregivers. In addition to being costly, it takes a lot of time and energy to recruit new help.
However, I consider myself blessed that I am able to do my own recruiting and management of caregivers. There are many who simply do not have the knowledge or the resources to manage their own care; it is almost a full time job in itself for those who cannot keep up with staying on top of this. The only option is to give up your freedom and independence, and go into an institution and be subject to a much lower quality of care and most of the time, rampant neglect and abuse.
Anyone can become severely disabled at anytime. As Americans we have been protected by Title II of the Americans with Disabilities Act. In a nutshell, Title II ensures disabled Americans will not be institutionalized and segregated from the rest of society against our will, because of a disability. The new DOL regulations directly contradict Title II of the ADA in such a big way that the Department of Justice got involved to “warn” state programs to “try” to not violate the ADA when making cuts to implement these new regulations.
What is happening to people with disabilities in this country is absolutely deplorable. The very government that boasts of liberty and justice for all is stealing the freedom of a large segment of its population, and treating us worse than common criminals, and are bullying those who lack the ability and the resources to fight back. If the federal government truly wanted to help those in need of care and caregivers, they would provide the additional funding that is mandated by these new DOL regulations. But apparently these new regulations were designed for those of us with severe disabilities fade out of society and die away. So, to answer the question, yes. Our federal government is indeed committing genocide against its own citizens before our very eyes. And it was the outgoing administration that planned and implemented it. However, that will not stop me, nor should it stop you. This attempted mass burden hiding behind the seal of the DOL will not be hidden much longer! Because we were all created with a spirit that cannot be destroyed — not even by the most powerful countries in the world!
For those of you that may be experiencing similar struggles, or would like to discuss these issues further, please feel free to connect with me on Facebook.
Comments