For those of you that are disabled, living in New Jersey & receive PCA (personal care services), such as home health aides, you should know that Governor Christie's new budget proposes to cut reimbursement by 17%. The program I use for paying my aides, Personal Preference recently sent all participants a letter notifying us about this about this possible change. If it passes it will mean a $2.10 per hour decrease to home health aide salaries. That is outrageous! I'm writing to my legislators online & through snail mail. You can find your legislator's information at www.njleg.state.nj.us. If you or your loved ones may be effected by this proposed cut, I urge you to write as well. Tell legislators your story & how this budget cut could impact you!
Here is my letter, if you wish to use it as an example:
Hello. My name is Christina Symanski. I'm a twenty nine year old resident of Freehold, New Jersey. I have lived in New Jersey my entire life, mostly in Union and Middlesex counties. I graduated with from Kean University in 2003, with my B.A. in Fine Art (education certification K-12). After college, I worked as an art teacher in the New Jersey public school system (Lakewood and East Brunswick) for two years. I would still love to be teaching in East Brunswick; unfortunately my career was cut short in 2005 due to an accident. In June of 2005 (two weeks before the school year was over) I broke my neck in a swimming accident and was permanently paralyzed from my chest down.
Paralysis has robbed me of independence, freedom, privacy, modesty, career, relationships and many of my dreams for the future. I went from being a perfectly healthy, able bodied, working member of society, to being completely dependent on others, over night. I no longer have control of any functional movements of my body. I am completely at the mercy of others for all of life's daily needs. Living with paralysis is something you must experience, to fully understand how awful it is and how many small things we take for granted, when we are healthy (a perfect example would be having an itch you cannot scratch). High level spinal cord injuries, like mine, affect every single aspect of life. As of right now, there is no cure, so I am forced to do the best I can, by moving forward with my new life.
Life with paralysis has been a day to day struggle. My days are filled with pills, home health aides, nurses and medical equipment. I rely heavily on others to help me accomplish the simplest of life's tasks, such as dressing, eating, using the restroom and bathing. It has been a difficult and drastic adjustment from being totally independent and on my feet. I often look back and wonder how I've survived thus far.
I think one of the key components to my personal recovery has been the ability to live in my own home. Shortly after my accident and hospitalization, I moved into a nursing facility. At the time, I was newly paralyzed, terrified and did not have the strength or the knowledge to live on my own, and had no other alternative. The year I spent in the nursing home was by far the worst year of my life. Imagine losing the ability to care for yourself, your job, your home, and your freedom over night, while living in a strange environment, with no privacy and nothing to comfort you. Every day I lived in the facility I felt as though I had never left the hospital. It was a little over a year of continuous insomnia, absolutely no privacy (I shared half a room, which was divided by a curtain) and being told how and when I could shower, sleep and eat. I would not send my worst enemy to live in a nursing home. The entire experience drained the little bit of hope and happiness I had left and I knew I would not survive living there. I made it my goal to get out and back into the community. Through hard work, determination and a lot of help from a handful of state employees (Division of Disability, Medicaid, Dept. of Health and Senior Services and HUD), I achieved that goal.
Living in the community, in my own home has made my life so much better. Living in my own apartment has given me back some of the freedoms I'd lost, privacy (as much as possible), and the ability to be as independent as I can. I feel more in control of my own life and have the freedom to manage my care on a one on one basis, and on my terms. I feel like a member of society again. I have a much higher sense of self and morale. I have proven to myself that there can be life after paralysis; not just sitting around passing time, but an actual good quality of living. Since I've been home, I've done my best to contribute and give back to the community. I joined the Association for Mouth Painting Artists, and have had several art exhibits here in New Jersey. My story has been featured in the Star Ledger, Asbury Park Press, and several other publications. I've been on New Jersey channel News12 and on satellite TV. I have made it my mission to use my story to help raise awareness of spinal cord injuries and paralysis.
I know that if I were still living in a nursing facility today, I'd surely be a shell of the person I was (and am). I'm certain I would have lost my will to live, if I were still there. For me, it is quality of life that counts, not quantity. No one should have to have a lower quality life, when improvements are possible and are available. When I was planning to leave the nursing home I was shocked to find all of the wonderful programs and services that are available to people with disabilities, here in New Jersey. I am extremely grateful to the state for providing me with the resources I need to survive. That said, I am extremely worried and upset over the proposed budget cuts to PCA (personal care assistance) services, in Governor Christie's upcoming budget.
I currently receive 56 hours of care per week, with a home health aide and 3hours every other day with a nurse. My aides and my nurses are my lifeline. Without them, I'd have no way to care for myself. When you think about it, eight hours each day is not much, if consider the fact I cannot use my limbs. Yet, with proper management and supplies, I make do. My aides rely on me, just as much as I rely on them. I am their employer and they count on me for a reasonable salary and hours, so that they can support themselves. All of my care falls under a Home and Community Based waiver and I receive both Medicaid and Medicare. I pay my rent and bills with my disability benefits and help through HUD. Everything I need for my personal care (medicine, aides, nursing, supplies, doctors and equipment) is covered by a set budget of $9881 per month, which is provided by the Medicaid waiver and Medicare. On the contrary, when I lived in the facility, the state was spending approximately $500 per day for my care (around$15,000 per month). I'm much happier and healthier in my home, than in a facility and can receive the same amount of care for less cost to the state.
If Governor Christie's budget cut passes, that will mean a 17% decrease in funding to the reimbursement rate for Medicaid home health services. This is not acceptable, nor is it a fiscally sound decision. A decrease in funding would force programs, like Personal Preference, through which I receive my home health aides, to cut my workers’ salaries by $2.10 per hour. My employees cannot afford a cut in their salaries and I do not have any other means to pay them. This proposed budget cut, could make it impossible for people like me to retain home health services. I cannot live on my own without those services. Cutting my employee's salaries could potentially force me (and many other disabled citizens) to move back into a nursing facility. It makes no sense to do this. Those of us living in the community need to be able to pay our aides competitive rates, comparable to nursing facilities, in order to keep the reliable employees that we desperately depend on. Sending people back into facilities would reduce their quality of living and increase the cost to Medicaid. It is a lose-lose proposal.
I'm asking from the bottom of my heart and on the behalf of all the disabled people that cannot express themselves, to please consider eliminating this proposed cut. It will not result in savings. It will force home health workers to take jobs (or become unemployed if they are not certified to work in facilities) in the nursing homes and it will force many of us in the disabled community, to follow their lead. It is a fact that nursing home costs outweigh home health costs. Please review these facts and put yourself in my shoes. I was perfectly healthy five years ago and now I'm not. I put my trust in the government and my elected officials to do what's best, on behalf. Please keep my situation in mind (and the hundreds, if not thousands of other disabled New Jerseyans) and urge Governor Christie to do away with this particular budget cut. Cutting home health services will only cut into my quality of life, it will not decrease the deficit.
Thank you for your time and consideration. I'm trusting you will do what's right.