I have realized the masses just do not get it. Unless you have a disability, you cannot comprehend what many of us go through to do simple, every day things. For those of us with Physical Disabilities unable to do ADLs (Activities of Daily Living) without assistance, being dependent on a government system that limits freedom is hard enough, but knowing that what independence is there could be taken away is even more frustrating. We’ve finally gotten some of our people out of the nursing homes and institutions we were condemned to less than a century ago. Not everyone is out. I have friends in their 20s and 30s still stuck in such institutions simply because they did not have family safeguards in place that have allowed many of us to remain in our communities. We continue to fight for their freedom.
Mitt Romney has mentioned three major things that have the potential to majorly FUCK UP the lives of people with disabilities. Those three things are:
-Repeal the ACA (Affordable Care Act aka ObamaCare)
-Cut Federal Funding to Medicaid
First, lets start with Medicaid. Most Medicaid programs are run through the state, but are dependent on Federal Funding to ensure their services remain with the most vulnerable populations in need of medical assistance. Those with disabilities, the elderly and children are amongst the most served by Medicaid. In most states, Medicaid Waiver services offer home healthcare or PCA care. In Ohio, my service is provided by Ohio Home Care Waiver. There are a few different Medicaid waivers based on needs and specific disabilities. My waiver ensures I get all my ADLs met. It pays for me to:
-get out of bed
-get dressed, groomed, and look good
-go to the bathroom
-have someone clean, cook my meals, feed me
-move me in my chair – range of motion and daily PT stretching
-accompany me on transportation trips
-ensure I have someone there in case of an emergency
-hand me my medicine
These are things I need to do for my survival. If I did not have these services, the state would have no choice but to put me in a place that could attend to all these needs. That means a nursing home or a institution. There are obvious advantages to the waivers vs. institutionalization. Let me give you a list:
-I live out in the community therefore I can:
–work (I have 2 jobs and am in training in a public speaking program through Wright State’s Office of
–interact with other human beings regularly in a variety of settings
–raise a family
-it costs far less to pay for waiver services, in some cases, as much as 2/3 to 1/2 less! It costs, on average, over $100K per person, per year, to be institutionalized in a state home or facility. The taxpayers are forced to pay such an exorbitant fee through their taxes. This is for the not so nice facilities. Nicer ones cost insane amounts of money.
-care is often better – abuse happens everywhere but it is far more prevalent in nursing homes and state institutions
-people with disabilities have a greater sense of independence when living in the community – work and school are impossible when you live in a home. You must follow the schedule set for the home and not your own desires or whims. This is heavy stuff for a 20 or 30 year old to accept. Their lives, in a home, are over, essentially.
So, if Romney wants to cut funding to Medicaid, as president, where do you think the cuts will start? States will have to start cutting hours and even people off these waiver programs and then they will not have the care they need. For some, family and friends can step in (but at what cost?). If Ash has to take care of me, I am a full-time job. She cannot work out of the home and see my needs are met. She will lose her job. We will lose our home. We will have nothing. Some of my friends do not have family or friends who can care for them, so their only choice will be to go in a home. Why should anyone be forced into a home? It is not right.
Add in the fact he wants to Privatize Medicare, and not only do we not have home healthcare, but we face the risk of losing the ability to receive high quality, necessary medical equipment and treatment. Right now, many of us also get Medicare. I get it through my Father, who died in 2001 prior to receiving any of the benefits he paid in to Social Security after working for over half his life and paying in to the government. Medicare is not perfect. In fact, it is a frustrating system that can take months for us to get essential medical equipment. However, it is better than what will happen with it being Privatized. Right now, Medicare faces government regulations, so it has to provide specific quality items. My wheelchair has to be functional and must benefit my body. By offering these contracts to a private insurance company, they can pick and choose what medical devices to pay for, what level of quality of products, etc. For many, it will be about money. The cheapest wheelchairs do not last as long. I need very specific seating specifications or I face harmful medical consequences (pressure sores, etc.). With the private insurance, they can get me the cheapest seat without anyone regulating they get me the one that will not cause me harm. For some insurance companies, they can deny getting wheelchairs altogether! While Medicare is already hard enough to navigate, privatizing the system is only going to make things worse. The government needs some say in regulating what it provides, to protect the people on the insurance, and not to save the insurance companies a buck.
Of course, many people, like Mitt Romney himself, believe all of us on Medicare and Medicaid are just asking for handouts. Let us ignore the fact that finding a job if you have a disability is 2 to 3 times more difficult than the average, able-bodied person. Let’s ignore the fact that many of us DO have jobs. Unfortunately, those jobs do not pay enough for us to pay for our own care. It has been estimated that one must be a millionaire to survive with a disability without assistance or at least have a family member who is a millionaire. For many of us, it is also an issue of private insurance companies refusing to provide us with healthcare due to a little something called a ‘pre-existing condition’.
This brings me to the ACA. This legislation has been very controversial, but it does many good things. When it went into effect, it made sure no child with a disability or illness could be denied private health insurance on the basis of a pre-existing condition. By 2014, that will be extended to adults, as well. With the ACA, private insurance companies can no longer deny us healthcare, so some of us will no longer be forced to rely on Medicare or Medicaid for our healthcare. For some, this still will not be an option, because our jobs just do not provide healthcare. For those able to get private healthcare, the ACA is a blessing. If Mitt Romney repeals it, then we face that same uncertainty of whether we qualify for any health insurance. We can be denied simply because we happen to be in a wheelchair.
The ACA also makes sure insurance companies cannot stop coverage due to monetary limits because you require more care due to your disability or illness. Nobody chooses to be sick or have a health condition, so cutting off their care due to something out of their control is pretty crappy. It happened and will continue to happen if the ACA is repealed.
Mitt Romney’s three tiered healthcare cutting plan could mean the difference between life and death for people with disabilities. I know, for many, they are thinking, well it does not affect me today, so why should I care?
If you do not care simply because it is the humane, right thing to do, care because tomorrow it could affect YOU. Tomorrow YOU could be in a wheelchair. Tomorrow YOU could require Medicaid waiver to get you out of bed. It could happen to you, a loved one, a friend, or even your own children. Disability is the only minority group EVERY person can join at any time in their life. Care because it CAN affect you. Care so you can make a difference now. Often, people wait until it is too late and they are affected by disability in their own lives.
When you VOTE on Tuesday, consider voting for FREEDOM for your fellow Americans…FREEDOM for people with disabilities, because Mitt Romney is promising to take away what little freedom we’ve got.