I want to believe that society values who I am. That they can see me and not see past me because I’m in a wheelchair, because I use crutches, or even because it is difficult for me to navigate my surroundings. At times of crisis such as the one we are currently experiencing it is difficult to feel that society even knows I exist.
One of the most striking things about state and federal governments initial reaction to the coronavirus pandemic was the sheer lack of preparation. From day one we have been ill prepared and that has led to shortages of medical equipment such as ventilators and protective gear such as mask for our healthcare workers. As a person with a disability who uses in-home healthcare as well as a driver to assist in my day-to-day work, I was flabbergasted by the lack of information on how I was going to meet my basic needs.
In fact, there only appears to be an afterthought about what people with disabilities need to do to prepare themselves for this pandemic. Almost, as if we brought this upon ourselves and should “figure it out.” However, the coronavirus was not our doing and we had no power in the decision-making process which led to individuals with disabilities being put in jeopardy because no one planned for their personal care.
The issue at first, seem simple, well, if you need personal care assistance then just have your personal care person show up and help you.
We know now that this is not a simple proposition. In fact, with the restrictions placed from state to state and nationwide the movements of people whether healthcare providers or others can be strictly limited. In some states, the governor’s office or some other state office has provided a letter to individuals who are considered “essential.”These letters have been haphazardly written with no clear designation as to what the purpose of a personal care assistant or nurse homemaker is. Therefore, making it difficult for the individual to explain to a police officer or other law enforcement officer what they are doing on the road. We are not so far into this at this point that government agencies and the federal government cannot revisit the documentation needed. The documentation should be clear, and speak specifically to the role of visiting homemakers and or personal care assistant to individuals with disabilities.
How do we stay safe as people with disabilities? Moreover, how do we ensure that those helping us to be independent stay safe? This seems like a lose lose proposition. Our independence has never seemed more fragile.
A lack of forethought by both government agencies and the personal care industry such as Visiting Homemakers has put thousands at risk of injury or worse. Hurricane Sandy was an experience that many said taught them the importance of preparation for natural or unnatural disasters. Many governments across the board said that they would put plans in place to be prepared for the next event. However, if anyone has been on a video conference or call to address the needs of individuals in this community, I’m sure what they have found is a lack of reliable information and answers.
We need a clear plan, right now, from the state and federal government who are the main providers of these services (via state government) as to the following:
– How do we ensure that those individuals who assist and support people with disabilities can legally travel back and forth to provide services?
– How do we ensure that these individuals who are providing services and those who are receiving services are tested for the coronavirus? These test ensure that those with underlying health conditions can receive services in a safe and secure manner.
– How do we ensure that people with disabilities and those that assist them have access to gloves, masks, and cleaning supplies to ensure that they are free from the coronavirus? Please note, this question should also address the issue of payment for these products. People should not be forced to go without them because they are unable to afford them or because they are not included as part of the individuals insurance or medical plan. If we wish to stop the spread of this virus we must give people the tools with which to do so.
– Is there a way to provide extra funding for individuals serving in times of crisis where they are exposing themselves to illness.
These questions are questions that should have been answered before this pandemic. We as people with disabilities have always been asked to have a backup plan. We have. We have submitted it every year. If someone is sick, we usually know who will fill their place. Nursing agencies, personal care services and government agencies are responsible for our current situation. We need clear plans that will help us take care of ourselves and those who take care of us. And we need those answers now!
