Sharon’s Story

“The moral test of government is how it treats those who are in the dawn of life, the children; those who are in the twilight of life, the elderly; and those who are in the shadow of life, the sick, the needy, and the disabled.” – Hubert H. Humphrey

Reflect on those words for a moment. The differently abled people in the state of Kansas are NOT just sitting at home waiting for their assistance.
I want to work, but I just CAN’T! What is a state government coming to when it turns its back on a very large population of educated, but challenged individuals who can NOT function without assistance!

Hi! My name is Sharon and I am a face behind a Medicaid card. A little bit about me. I am an L3 paraplegic due to a rare autoimmune disorder very similar to Multiple Sclerosis. I have multiple chronic health issues, both physical and mental. I was able to attend college and graduate with the ultimate goal of getting off public assistance. Sadly, life is a journey with many twists and turns, so my goal to be a teacher was never realized.

I tried very hard to work and even do some volunteer work, but my multiple challenges presented too great of an obstacle to doing either one. I never intended to spend my life living on public assistance! However, you must take what hand life has dealt you and move up. Down is NOT an option!

Before I go any further, I want you stop and imagine not having working legs to just “hop” out of bed in the morning. Not having legs to carry you into the bathroom that allows you to step into the shower with little effort or getting on and off the toilet with ease! Imagine having to ask for help in completing these tasks.

I have to use my arms as my “legs” to do what a non-disabled person does with so much ease. It takes a lot of effort and skill to move from my bed to the wheelchair, the wheelchair to the toilet and to my shower bench. When it was determined that my challenges presented too great of an obstacle to any sort of work, I was thankfully given the opportunity to get onto the Home and Community Based Services(HCBS) – Physically Disabled(PD) waiver, I began working with a Center for Independent Living(CIL), which has given me the ability to live as independently as possible in this given situation.

I use Resource Center for Independent(RCIL) and have had the opportunity to meet many wonderful targeted case managers(TCMs). My current TCM has been my advocate in more than one difficult situation and provides me with answers I can’t find on my own. Proposed cuts would close these independent living centers and the loss of these TCMs. It terrifies me that if I lost my CIL and TCM, I would lose the ability to live with my parents and maintain the level of independence that as a TEAM my TCM and I have worked very hard to achieve!

The thought of this termination is burdening me with much unwanted stress. I already have multiple stresses in my daily life; it creates unwanted stresses that I don’t need to add to! The idea of so-called “managed care” means to a move away from consumer directed care to a committee of outsiders directed care. How can they possibly know all complexities of my multiple challenges? This group only would know me by a so-called case file and a number.

Meeting one face to face is the ONLY option in providing the best decisions for maintenance of my current level of independence! What would happen to me if I lost the ability to have a personal care attendant come into my home 5 days a week to provide me with activities of daily living assistance and various housekeeping tasks? I know what would happen – I would be TOTALLY DEPENDENT upon my family to provide me with the help that I need to do everything from toileting to doing my laundry!

There are far reaching ramifications of me being totally dependent on family for assistance could range from them having to leave their jobs to take care of my needs and that would impact the state economy because there would higher number of unemployed people providing the care for the disabled loved ones.

Think about that – less people bringing home income would equate a HUGE HIT to the various revenues available to the state of Kansas. It might even result in me being FORCED to move out of the house I share with my parents. Being sent to live in a long-term care facility is only just a politically correct term for a human warehouse.

Decisions are made there that are NOT in the best interest of the person because it is a group of outsiders making those decisions. The loss of both RCIL and my TCM would mean a loss of the level of independence that we and I have worked TOGETHER very hard to achieve. One thing is not more important than another…there has to be balance. My TCM is a very valuable asset to me retaining my current level of independence.

Consumer and TCM directed care is a far better option in my opinion than what has been deemed “managed care”. It is essentially a committee that makes the decision that they deem best for the individual. The consumer and TCM know far better what is in my best interest and a MCO (managed care organization) would not have the opportunity to see the face behind the number.

Without knowing the person, you can’t make an informed decision. Knowledge is power. Ignorance is NOT bliss! I hope that by me sharing my story it helps you to make a much better and informed decision on the far reaching ramifications of such proposed cuts.

Take a minute to think about the far reaching ramifications of these changes. It would not only put the multitude of Kansas residents on the various HCBS waivers who would be losing out on living as independent life as much as their different challenges allow, but it would create a huge gap in invaluable services that these CIL’s provide.

They provide a lot more than just a TCM. These services range from providing a voice to those who are differently abled to being an invaluable resource for everything from locating adaptive equipment to being a source of belonging. Belonging to me means having a sense of self and pride in what I am able to accomplish every day. It is also a sense of community that makes me feel less isolated from my peers.

One final thought is a quote from a late and great president, Ronald Regan.  He was quoted as saying “concentrated power has always been the enemy of liberty”. Thank you for letting me share my journey!