I recognize that when most people turn 21, there is excitement for a new level of independence and responsibility. In becoming an adult, many people are working toward a degree to secure them a job that affords them independence from their parents. In my case, being physically disabled, [finding] this kind of independence is a daily struggle. For me, and others like me, I have had many years to think about turning 21, and the way my life could drastically change. As it is quickly approaching, I often think about what is going to happen. Where will I end up? How will I manage without the care I am so dependent upon? While I know that my independence is not going to look the same as it does for many others, I still greatly desire it and have been so blessed to have the chance to experience [it] over the past 3 years.
In the fall of 2009, I left my home in Indian Harbour Beach and moved one and a half hours away to Orlando, Florida to attend college at UCF. I live on campus in a dorm room and rely on help from skilled nurses approved by Medicaid.
Currently in Florida we have a very good system for disabled people under the age of 21. Medicaid provides us with most of our medically necessary equipment and various levels of supplemental skilled nursing care, depending on our needs. Due to the severity of my disabilities, and the fact that my parents both work, the state has deemed me eligible for their services, which include 24/6 nursing care. My mom comes over every Sunday to help me on the seventh day. With this nursing care help I decided to use this opportunity to go to college and pursue a degree in Web Design. Because of my medical needs, which include the 24/7 use of a Bi-Pap breathing machine, a feeding tube, oxygen, suction, and wheelchair dependence, the state requires that my nurses be at the level of an LPN or higher. These nurses are very good and help me do everything from bathing, toileting, feeding, breathing exercises, positioning me in my wheelchair, and accompanying me wherever I go. I no longer have precise use, if any use, of my limbs, except a little movement in my hands, which I use to manipulate the joystick on my wheelchair and the mouse on my computer.
A typical day for me starts with my nurses getting me dressed and ready and positioning me in my wheelchair, all of which takes about 2 hours. The time in my wheelchair is limited because it’s tiring for me to sit up for long periods of time. This makes scheduling my classes somewhat daunting, having to plan breaks throughout the day so that I can lay down to rest and toilet. Since I cannot use my hands to write, I either record the lectures, or make use of note-takers. When I return to my dorm room I lay down, turn on my side and prop one hand on top of the other which gives me limited use of the mouse on my computer. From here I can complete my studies. It’s a very time consuming process to use an on-screen keyboard, typing one letter at a time, but I have managed to progress within my major (Digital Media). I made Dean’s List last year, and I hope to graduate in another year or so. I also get a lot of help from friends. Some offer to take notes for me, and others take time out of their day to drive me or attend class with me, to act as my hands on the computer since I am not able to maneuver a mouse while I’m sitting up. I feel very blessed for their help!
There’s another state organization helping me, too: Vocational Rehabilitation. They recognized that I was capable of college-level studies and they are helping me with my tuition and housing costs. They realize that by investing in these short-term expenses, I will be able to support myself in some way as an adult (with a college education) and, therefore, be a positive contribution to society.
It was definitely no easy task to get all these services put into place. There have been hours of applications, certifications, doctor visits, letters of medical necessity, denials, appeals, etc… And now as my twenty first birthday approaches I realize that I may lose my entire way of living due to technicalities within Medicaid.
Florida Medicaid has decided that when a disabled young adult turns 21, they must move into a different program. If you qualify, you get enrolled into the ‘Aging Out Program’. Here is the purpose of the waiver:
“Enrollment in the Aging Out Program is intended to ensure the smooth, uninterrupted provision of services necessary for the recipient to maintain the highest practical level of physical, emotional, and psychosocial well being while remaining in the home and community.”
To disabled young adults, we read about this program with a sense of relief, getting the impression that the state is going to continue to help provide us with the care we have previously received and continue to require. Unfortunately in reality Medicaid does not follow through on this objective and we are not offered the same services.
I know that I am from a very small minority in Florida—‘Disabled Young Adults’ – but even so, we require Medicaid to follow through with their promise of “smooth, uninterrupted provision of services,” including the continuation of our skilled nursing care as previously approved.
On that point, I would just like to point out that over the years, health care around the world has improved and so has life expectancy. Disabilities and illnesses that once caused hopeless situations are not affecting people in the same way now, because technology has afforded us new solutions. Unfortunately, insurance companies, as well as state and federal programs, have not kept pace. We are left fighting to continue our care. I’m sure that eventually we will have to be recognized, and maybe now is that time, but currently our voice is not being heard or listened to!
The norm in the past has been for disabled young adults to have their parents take over the role of 24-hour care givers and/or we must live in a nursing home. Neither of these solutions are safe or adequate. In cases such as mine, parents cannot take on the role of full time caregivers and supply me with the 24 hour skilled care that I unfortunately require. I need someone qualified and available immediately for emergency needs, such as suction and breathing equipment adjustment. Relying on parents, many of whom are working, aging, and actually need to sleep at night, is not sustainable. And nursing home staffing ratio’s would not be safe for me. Prior to age 21, the state mandated that my care be by an LPN nurse or higher. Just because I turn 21 does not mean my need for nursing care services are any less. In fact, with a progressive disease like mine, my needs are only going to increase!
I personally know of recipients of the Florida Medicaid Aging Out program, who enrolled in years past, and who did and continue to receive 24/7 skilled nursing care. Why this coverage is no longer available or so limited, I do not know, but surely our care should be based on basic human rights – acuity of care – and hopefully not on current budget policy.
My life is not the norm, but I am striving to make the most of the opportunities that I have been given. I have enjoyed independence these past three years while at college and being able to make my own decisions in my life. I have had to personally face the consequences of my decisions and benefited from the growth this affords. I believe I am doing what I can to be a responsible citizen and contribute to society – trying to pursue a college degree and hoping to have some kind of career where I can support myself in some way in the future. I may never be without ‘needs’ and totally dependent of help from others (family, friends, State and Federal organizations), but I will always strive to do the best that I can. Life is not an easy feat for anyone. Our struggles may be different but we all have issues, we all face difficulties, we all have challenges to overcome. While I may fight daily for each breath I take, you are simultaneously facing your own battle. I hope that my actions have shown that I do not squander my opportunities. I truly believe that turning 21 should not be the end of my life as I know it and I hope that in Florida we can step up and support disabled young adults by continuing the care they require!
Thank you for taking the time to read my personal story. I hope you will be moved enough to support our campaign by clicking below and signing our petition