http://t.co/mvaGtBr0 Know about it, annual checks are a must for people with diabetes.
Heidi’s Story
Posted On: May 3, 2012
Categorized: Independent Living
Tagged: Centers for Independent living, CIL, Deinstitutionalization, HCBS, Independent Living
Elise’s Story
Posted On: April 25, 2012
Categorized: Independent Living
Tagged: Centers for Independent living, CIL, consumer story, HCBS, Independent Living
Please ready Elise’s story of independence through using home and community based services.
My name is Elise, I suffer from Diabetes, Fibromyalgia, Spinal stenosis, Bile duct reconstruction, Parkinson’s disease, depression, and anxiety. I also just had open heart surgery. I live with my husband Bill Fears who suffers from Alzheimer’s disease and Parkinson’s disease. I have a son who lives here in Ottawa and a daughter in Tulsa. I moved to Ottawa from Illinois to be closer to my son.
I am on the Physical Disability waiver. I have a direct service worker who comes into my home to help care for me. My DSW (Direct Service Worker) cleans the house, does laundry, cooks, runs errands, helps me with bathing, and is a real support system for me. It would be very hard if not impossible for me to get things done around the house without my DSW. Some days with the fibromyalgia I can’t get out of bed. My DSW also helps when the depression and anxiety gets bad. If I did not have a DSW Bill and I would most likely be in a nursing home.
I took advantage of the Peer Specialist Program at RCIL. I worked with Peer Specialist Rebecca at the Ottawa RCIL office, I created an Independent Living Plan that helped me figure out what to do about my vehicle that I was having mechanical problems with. It went very well working with Rebecca & I feel it was a success. I would use the Peer Specialist Program again & I would recommend it to my friends.
I am thankful that RCIL is there to help me, RCIL helps me stay at home, and RCIL helps me stay living independently. Taking away Centers for Independent Living in Kansas would hurt the people who need them the most. I certainly could not keep my husband at home with me if it were not for my DSW and RCIL. If I could tell the legislators something it would be this. Please keep Centers for Independent Living budgeted. So we, who need them, can stay Independent & stay in our communities. We don’t want institutionalization & I REFUSE to live in a nursing home. I don’t want to be confined, I don’t want to be told what I can or can’t do, I am not a 66 year old child, I am a 66 year old grown woman, and I would like to be treated as such!
This is Elise’s story, if you would like to share your story of independence, please email it to mandy.smith@rcilinc.org.
How I Found My Independence
Posted On: March 14, 2012
Categorized: Independent Living
Tagged: choice, empowerment, HCBS, Independent Living, independent living philosophy, medicaid, Resource Center for Independent Living, waiting list, Working Healthy
Just like any other twenty-seven year old American woman I just want to live a happy, successful, and meaningful life. From the outside I look like a “normal” woman. When you look at my brown hair, brown eyes, and average height you will see a woman who looks pretty “normal”. What you won’t see is my disability.
I don’t use a wheelchair, I don’t have crutches, no cane, and no tell tale sign that says I have a disability. As a young child I had severe medical problems that gave way to Reflex Sympathetic Dystrophy and damage to the Ulnar nerve in my right arm. I also happen to be right arm dominant.
I struggled for much of my life to maintain “normal” activities with my right arms movement and use being somewhat limited. As I got older the limitations increased and the pain became a daily companion. At the age of 24 I finally gave up and applied for SSDI. I was approved in April of 2008.
Difficulties mounted
This was a minor victory because I quickly came to a place where I realized that I was entering a very dark phase of my life. December 2009 I moved back to Kansas after spending three years in Maine. I settled on Ottawa, Kansas and purposed in my heart that I would make this work.
January of 2010 I moved into my apartment with my roommate. By March I began to realize that I was in trouble. My roommate worked more than ever before and that meant that I spent more time alone. My depression and anxiety became so severe that I stopped going out in public. The fear and anxiety related to the social stigmas surrounding disabilities weighed heavy on my heart.
I saw 2 to 4 doctors a week and took 23 medications a day. I honestly spent my days sleeping and mindlessly passing the hours. Life continued on his murky path for months. I realized that I had more trouble doing the basic things around my home that “normal” people just do. I was struggling to function.
Finally I heard about a company in town that had some services for people with disabilities. I called this company and spoke to the receptionist. I scheduled an in-home appointment and within two weeks cancelled it.
I was embarrassed and ashamed. Here I sat at the age of 26 unable to carry out the most basic human tasks. I was struggling with just brushing my hair and would just throw it up into pony tails to hide the tangles.
Taking the First Steps
Two months later I gave in, swallowed what tiny bit of pride that I had left, and called that company back. I expected them to just hang up on me. I mean who would blame them? I wasted their time and cancelled last time.
Instead of being faced with indifference or rudeness I was treated with respect and more kindness than was even deserved. I set the appointment and hung up feeling, if even only slightly, hopeful!
A week later the gentleman from that company came to my house. As we went through the appointment I felt so ashamed and embarrassed that tears came. I found myself having to tell this kind stranger things about my body and my health that I had never told anyone.
After the assessment he told me about the steps involved and the waiting list. I was disheartened. I had opened up about all of this and told all my secrets. I told him all of it and it was for nothing because I would not see services for years.
Finding Hope in Working Healthy
Then he told me that there was the working healthy program. He explained the basics and also told me that he may be able to get me a job where he works. I was delighted. Could this really happen?
After our appointment was completed I called Working Healthy. I was accepted into the program within two weeks. I interviewed at the gentleman’s company and got the job in September 2010. I was just amazed. I kept thinking was there really a CHOICE for me? Could I really get out of this dark place and modulate towards a better future?
I look back at the way my life was and compare it to my life now. I went from being so depressed that I would not go out in public and dealing with so much chronic pain that I could not function to who I am now. I am so proud to say that I am now in a much better place.
One year to the day after being hired I was promoted. I help people with disabilities every day. I help them learn to help themselves and I understand their struggles. I help with wheelchair ramps, mountains of paperwork, assistive technology, medical equipment, finding funding sources, youth advocacy, and I help people learn Independent Living Skills.
Thankful
All I can honestly say is thank you! Thank you to the wonderful people that I am now lucky enough to call my co-workers who took a chance on me. Thank you to Jonathan Sproule for coming that day to assess me and telling me that I could get up and telling me that I could live and not just survive.
Thank you to my mother Rita Marriott who is also my PCA, helps me be the best me that I can be, comes to work every day to help me, and never stops believing in me. Thank you to the Resource Center for Independent Living! RCIL has helped me find my voice, has helped me find my independence, and has helped me realize that I too can fan the flame of acceptance!
Without RCIL and centers just like it all over Kansas I know that I would NOT be where I am today.
This is a guest post written and submitted by Jennifer S. Thank you, Jennifer for sharing your story!
Waiting for Help
Posted On: March 2, 2012
Categorized: Independent Living
Tagged: HCBS, Independent Living, medicaid, waiting list
Today we share the story of Rebecca T. She has been on the Waiting List for Home and Community Based Services for almost 3 years. The following words are hers. Notice that Rebecca would need a minimal amount of supports to assist her in the activities that she is physically unable to do on her own.
I am 55 years old. I personally have been on the waiting list since May, 2009. I have problems breathing and I swell horribly. I am in continuous pain and have arthritis really bad in my knee and ankles. If I rinse my dishes to put them in the dishwasher, I am having trouble breathing and my lower back hurts very badly by the time I can get done. I have trouble taking care of my feet and toenails so I just do not. If I cook anything I have to start a little at a time, can not do anything on my feet for very long. Grocery shopping is a very painful experience for me even with the motorized carts, most things are out of reach and then I still have to get them in my home and put up.
I have multiple sleeping disorders, restless leg syndrome, severe obstructive sleep apnea (I am fortunate I have a c pap machine, as MEDICAID will not pay for them, I am supposed to get a new mask every 6 months and have had mine for over 1 year now) and I have severe insomnia. I wake up multiple times through the night even though I take Lunestra. Without Lunestra I barely sleep at all. I have other personal problems due to my disabilities that I will not say publically as it is way too embarrassing. I do work part time and try to stay active as I am able to be. Just getting my mail at the Post Office is a chore for me.
Please join in the advocacy action to contact the Legislators on the Senate Ways and Means Committee and the House Appropriations Committee and let them know that the Waiting List must be funded! There are over 3,400 stories like Rebecca’s, and that number is growing.
Denied: Jim’s Story
Posted On: February 24, 2012
Categorized: Independent Living
Tagged: HCBS, Huntington's, Independent Living, medicaid, Nursing Facility
Jim H., is a person with a disability, one of the over 3,500 Kansans on the waiting list for Home and Community Based Services. Jim has Huntington’s Disease. Because Huntington’s is a progressive disease, it is getting more and more difficult for Jim to accomplish his daily activities, including cleaning and cooking for himself.
The disease has also led to an increase in falls, which can be extremely dangerous, in fact, falls are one of the leading causes of death in individuals with Huntington’s disease.
Jim was unable to get a “crisis exception” from SRS to be eligible for in home services without waiting on an over 3-year long waiting list. This video is Jim sharing his story, he talks about the minimum assistance that he needs to remain safely in his home. It is a travesty that in order to access necessary supports, Jim must go into a nursing facility or go without any services and endanger his life.
Sharon’s Story
Posted On: February 13, 2012
Categorized: Independent Living
Tagged: advocacy, CIL, Disability, equality, HCBS, Independent Living, Individual Advocacy, medicaid
“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!
Low Income Energy Assistance Program (LIEAP)
Posted On: January 13, 2012
Categorized: Consumer Opportunities, Independent Living
Tagged: assistance, Budget, Disability, Independent Living, LIEAP, SRS

Do you need assistance to pay your utilities bills? Starting January 18, 2012 The Low Income Energy Assistance Program (LIEAP) applications will be available at your local Social Rehabilitation Services (SRS) office and on the SRS website through March 30, 2012.
LIEAP is a federally funded program that helps eligible households pay a portion of their home energy costs by providing a one-time per year benefit. You will receive a paper application in the mail if you are a 2011 LIEAP applicants and December recipients of food, cash, or medical assistance. LIEAP applications can be submitted online or by mail starting January 18th through March 30th.
The following summary describes basic LIEAP eligibility provisions. If you need additional information you can contact SRS at 1-800-432-0043.
In order to qualify, applicants must meet the following requirements:
- An adult living at the address must be personally responsible for paying for heating costs incurred at the current residence, payable either to the landlord or to the fuel vendor.
- Applicants must demonstrate a recent history of payments toward purchase of the primary heating energy.
- The combined gross income (before deductions) of all persons living at the address may not exceed 130% of the federal poverty level according to the guidelines listed below:
|
Persons Living |
2012 Maximum Allowable |
|
1 |
$1,180 |
|
2 |
$1,594 |
|
3 |
$2,008 |
|
4 |
$2,422 |
|
5 |
$2,836 |
|
6 |
$3,249 |
|
7 |
$3,663 |
|
8 |
$4,077 |
|
9 |
$4,491 |
|
10 |
$4,905 |
|
11 |
$5,319 |
|
12 |
$5,732 |
The Trip of his Lifetime
Posted On: December 19, 2011
Categorized: Independent Living
Tagged: cancer
My father, Ryan, was diagnosed with lung cancer in early February 2011. This was not too surprising since he has smoked from an early age and both of his parents died of cancer. I was thinking that he would have chemo and radiation treatments, the cancer would go away and we could have a few to many more years together.
Towards mid to late February my dad sounded like he was losing his voice. He said his throat didn’t hurt but he just had a raspy voice all the time. It was weird at first but then I decided it fit him and the cowboy in him. I thought maybe the tumor was attached to his vocal cords and after a while his voice would return to normal.
After many trips to Olathe Medical Center for tests, my dad had surgery in early March, two weeks before he turned 50 years old, to have the tumor in his lung removed. After the surgeon saw where the tumor was located and the size of the tumor he ended up taking my dad’s left lung. While in the hospital my dad showed me his incision joking that “this is my shark attack”. I guess I expected his voice to be back to its original state as soon as he was out of surgery but that was not the case. The doctors told him it would take a while for it to return, if it ever did.
Dad did very well recovering from his surgery and had no issues with his oxygen levels. His doctors decided after his recovery he should go ahead and have chemo and radiation to ensure the cancer was gone. He started this process in May. Also, during May, my dad ended up back in the hospital with a blood clot in his leg and one in his lung. I was getting ready to travel to Texas for five weeks for training so I was extremely worried what would happen during that time. Dad encouraged me to go on my trip and he would finish his treatments so he could be healthy when I returned.
June ended up being not what Dad or myself expected. He found out that month that the cancer had spread to his shoulder and his adrenal gland. He wound up having radiation on both places during June and July. My dad did not tell me how much the cancer spread until I had returned home from Texas.
August 8, 2011 will be a day that changed our family’s lives forever. The doctors asked my dad to do chemo again to try to stop the cancer. He said he couldn’t do it because the last time it made him too sick and he was not able to do anything. With that choice the doctors told him he had 2-4 months to live.
Since I was little my dad talked about taking me to Dodge City. It was a place his parents took him and his sister when they were little and he wanted to do the same with his child. For one reason or another we had never made it out there. So, when Dad was told he didn’t have much time left, we set a date to go to Dodge. I told Dad, “I have plenty of vacation time, where ever you want to go, let’s do it.” So Dad started the plans. Our Dodge trip ended up being a week-long trip.
We left Monday morning on August 29th. Dad wanted to leave at the butt crack of dawn (6:30am) but I talked him into 8:00am! Dad rented a Lincoln Marquis so we were riding in style. I was teasing him about it looking like a “cop car” and all we needed was a spot light. Dad and I started our adventure by heading to Osage City to drop my son off at daycare. While at the daycare Dad was able to see the daycare lady’s bulldog puppy. I loved watching Dad’s face light up as the pup ran outside. She is young and ornery so Dad had to stop her from chewing on his shoes. He petted her for a few minutes then off we went on highway 56.
Dad drove for a while and then I took the wheel. My dad usually doesn’t drive if there is someone else who will. I think he told me once that he drove around enough when he was a police officer so now he rather ride. But in this situation I don’t think that was the reason, I think he wasn’t feeling well.
We drove through McPherson and had to take a detour around a car wreck. When back on the highway we had to stop for a train. The train was going forward and backwards and Dad and I both were like “What are they doing?” Well, we watched the train attached a couple carts, pull forward, back up, release the carts and let them go. They bump into more carts so jokingly I told Dad “Well, in one town we saw a car wreck and a train wreck.” He started laughing. I always loved making him laugh.
We ate lunch at Long John Silver’s which was one of my Grandpa Smith’s favorites and one of my dad’s favorites. He said Grandpa would always order a big meal and never eat it all. Well, Dad did the same thing. That was a theme on our trip, him not eating much.
We stopped at Pawnee Rock which is off of highway 56. Dad had been there several times and was surprised I had never even heard of it. I walked around and read all of the historical markers and I think Dad just stood at the top and enjoyed the beautiful view. I took the steps to the top of the lookout and admired the wonderful view. I also thought to myself of what it would look like covered in buffalo like the settlers would have seen when Pawnee Rock was first found. After I came back down Dad and I took some pictures of each other and we hit the highway to continue our trip.
Our next stop was in Lardner at the Santa Fe Trail Center and Museum. Dad explained to the man at the admission booth that we were on this trip because he was sick. The man told him there were wheelchairs available if he needed one but he did not need one that day. As we rounded the first corner of the museum their stood my arch enemy, the buffalo! (I have had a phobia of buffalo since I was 5 years old.) Dad asked if I would take his picture with the buffalo. I did, then he asked if he could take my picture with it. I looked at him like are you serious? But said, “Sure, as long as I don’t have to get too close to it.”
The Santa Fe Trail Center and Museum has a large building full of great information and artifacts about Kansas. Behind that building are other buildings including an old church, school house, sod house, and an underground house. Dad told me to go ahead and go look at the buildings, he had been there before and didn’t want to look at them again. It was also the middle of the afternoon and 100 degrees so I couldn’t blame him for not wanting to leave the air conditioning. I walked out to the sod house and took some pictures and headed back in for relief from the heat. I found Dad in the gift shop and we left to finish our journey to Dodge City.
Dad and I got to Dodge City around 5:00pm. We stayed at a hotel just down from Boot Hill I believe it was a Days Inn or some kind of Inn. When looking for it Dad couldn’t remember the name of it but remembered it when he saw it. He had stayed at this hotel before and liked it because it had an indoor pool and a restaurant that was connected. Dad and I checked in and moved our luggage into our room. I was worried about Dad because we ended up with a room on the upper level with no elevator. I offered to carry his bag but of course he wouldn’t let me. Once settled into our “home on the road” we headed down to the Pancake Inn for dinner. Dad had told me he wasn’t very hungry before we went down so I wasn’t surprised when he didn’t eat much of his meal.
We went back upstairs to our room and got our suits on to go swimming. We were both looking forward to splashing around and relaxing in the hot tub. Well, the pool water was so cold our teeth were chattering with only our feet in. Needless to say, we ended up in the hot tub instead.
The next morning I woke up around 8:30 and saw Dad was still asleep so I went ahead and took my shower and got around. 9:00am he was still asleep so I just let him rest and played around with my phone. I think he started moving around 11:00am. He asked me why I hadn’t woke him up and continued to tell me he did not sleep well. I told him I wasn’t in a hurry so I let him rest. We went down stairs to the restaurant then headed to Boot Hill.
Boot Hill was full of information from types of guns used in the era to a bartender who told us about the original artwork in the saloon. One building housed a large stuffed buffalo along with videos above it that spoke about the buffalo slaughter. I stood there and watched hundreds of buffalo running across the plains and I could feel the floor shake as if Dad and I were there. As I said before, I am afraid of buffalo and this was about all I could take. Dad had me take his picture with the buffalo again which I did and was ready to move on. He asked if he could take my picture with the buffalo and I said, “No, you got one yesterday, let’s go.” He, like always, did not take no for an answer. So, with sweaty palms I stood as close as I’ve ever been to a stuffed buffalo and had my picture taken. “Smile,” my dad said. “I am! Take the picture!” I replied.
After Boot Hill we drove to where my Great Grandpa Shores had his appliance store. The small building had been turned into a house and it made my dad’s day that they hadn’t torn it down. Next, we went to the cemetery where my Great Grandma and Grandpa Shores are laid to rest.
That night, after dinner at the same restaurant down stairs and a toe-dip into the freezing cold pool, Dad and I played cribbage which had been one of our pastime favorites. Dad had taught me how to play this game at a young age which I think helped me learn how to count and my math skills. Whenever we played it Dad would help me count my points to make sure I didn’t miss any and I think sometimes he would throw good cards in my crib so I wouldn’t lose by a lot. He didn’t have to do any of that during that game. In fact, I helped him count his points. I also beat him for the first time since I could remember!
The next morning after breakfast at the same restaurant, we headed to Meade to see the Dalton Gang’s secret hide out. I think what Dad liked most about the trip there was the wind turbines because he took numerous pictures of them. When we got to the hide out there was a squirrel eating corn that allowed us to get very close to him. Dad was amazed. Dad has always liked squirrels and he said he was going to start putting out corn for them instead of the feed he was using. The man running the hideout and my dad could have been best friends! The man does national gun fighter clubs and is a judge for quick drawl competitions. He and my dad started talking and I finally had to pry my dad away so we could continue on our trip. But before we left the man gave my dad a piece of paper that had 10 rules that cowboys were to live by. My dad later framed and hung it on his wall.
After mead we went to Ashland where my dad was born and lived until he was 4 years old. We drove past his old homestead but the house was gone. Dad guessed it must have caught on fire and been torn down. He was sad. He showed me the bank where my Grandma worked and some neighbors houses that he remembered playing at. We visited their county museum then headed back to Dodge for the night.
That evening we ate at the same restaurant and made it all the way into the pool. We also played a hand of cribbage which my dad won.
Thursday morning we got up and packed our things to leave. Before getting the heck out of Dodge we had breakfast at our restaurant one last time then took the highway to Medicine Lodge.
Medicine Lodge is the home of Carry Nation and has her old home set up as a museum. We visited her home and the stockade museum beside it. Both were very interesting. We continued our trip after the museum to Wellington where we visited the Chisholm Trail museum. If you ever go to a museum in Kansas this is the one I recommend. It is an old hospital and is three stories of great and amazing things. We got there late in the afternoon so the man said he had already turned the air conditioner and lights off upstairs but we were free to still travel up there. I’m making my way in and out of the rooms admiring all of the neat things when my dad asks me what I’m doing. I hadn’t realized I was doing anything so I just looked at him blankly like “Duh, looking at this stuff!” He said “Are you scared a buffalo is going to jump out?” I had been peeking around corners and down hallways to not be caught off guard to come face-to-face with my enemy and Dad had been watching me and laughing at me.
After we finished the museum we found ourselves a hotel with a non-freezing pool. It was next door to KFC so we walked over and had dinner. That night we deemed was the tie-breaker/championship game of cribbage since we both had won one. And I must brag and say I beat the pants off of my dad! I was proud and happy that a game he prided himself on I had beat him at. For winning he gave me his cribbage board and deck of cards so I could teach my son and boyfriend.
Friday morning we left Wellington to head home. I have to admit I was enjoying myself but I was really ready to come home. We made a detour through Neodesha so Dad and I could visit with his ex-wife and her family. We had lunch with them at Dairy Queen and finished the trip getting back to Lyndon around 2:30-3:00pm.
My dad enjoyed that trip more than words can ever express. He told me numerous times that he had a blast and thanked me for going. He gave me a small windmill the following week for my birthday because on the trip I told him how much I liked them.
Dad’s strength got less and less after our trip. He told me at one point that since our trip he just felt tired all the time. The first weekend of October he, his wife, her daughter’s and my dad’s best friend went to Coffeyville for Dalton Day’s and looking at the pictures he enjoyed himself.
October 15,2011 my father passed away at the age of 50. I am so glad we were able to take that trip so I could learn so many more things and facts about his lifetime.
Home and Community Based Services in Kansas
Posted On: December 12, 2011
Categorized: Independent Living
Tagged: advocacy, Budget, CIL, Deinstitutionalization, Disability, equality, HCBS, Independent Living, medicaid, self direction, SRS, Systems Advocacy

Home and Community Based Services (HCBS) became an integral part of the lives of Kansans with disabilities and those who are elderly though legislation passed in 1989 (KSA 39-7, 100). This legislation provided Kansans who wanted to have choice and remain independent with the ability to receive long-term care services in their own home and provided them with the option to self-direct their personal care attendant.
In the mid-1970′s, SRS was paying for approximately 14,000 people to be institutionalized in nursing facilities. The passage of the HCBS legislation along with the dedicated work of Centers for Independent Living (CILs) led to the number of people receiving services through HCBS Physical Disability (PD) and Frail Elderly (FE) Waivers to grow. This reduced the number of people being paid for in nursing facilities to hover around 10,000, even though the number of frail elderly people and people with disabilities in Kansas increased. Additionally, the cost to the state for providing services on the PD or FE waiver was proving to be one-third to one-half of the cost of nursing homes.
In Fiscal Year (FY) 2011, the State’s support of HCBS diminished significantly, which can be shown by the increase of nursing facility residents between 2010 and 2011. As of June 30, 2010 there were 10,561 people residing in nursing faciliites, and 6,964 on the PD waiver.* At the end of FY 2011, the number of people in nursing facilities was 13,699, with 6,368 on the PD Waiver. This is a drop of approximately 600 people. The 13,699 nursing facilities residents cost to the state was $413.1 M (All Funds), the combined cost for indivduals servied through the HCBS PD or FE waiver was $212.8 M (All Funds) for the year.** Approximately 40% of nursing facility and HCBS costs come from the state general fund.
In December of 2008, SRS established a Waiting List for HCBS PD Waiver. As of OCtober 31, 2011 there are 3,254 people on the HCBS PD Waiting List, many of whom have been waiting for almost 3 years. The PD waiver is down to 6,100 people with only people in extreme crisis being allowed to receive HCBS PD waiver services.
If the individuals on the PD waiting list were to go into nursing facility it would cost the state 3,254 x $37,920 (per person/year) = $123.4 M (All Funds) as opposed to receiving services on the waiver 3,254 x $24,120 (per person/year) = $78.5 M (All Funds). HCBS would be a savings of $44.9 M (All Funds) as well as providing Kansans with disabilities and those who are elderly the dignity and respect that comes with independence and the choice of receiving long-term care services in their own homes and communities.
*FY 2010 Kansas Medical Assistance Report
**FY 2011 Kansas Medical Assistance Report
This is adapted from advocacy information distributed by the Statewide Independent Living Council of Kansas (SILCK).
Are You Ready to File Your Taxes?
Posted On: December 10, 2011
Categorized: Consumer Education, Consumer Opportunities, Independent Living, Programs and Services
Tagged: CIL, consumer opportunity, Disability, Independent Living, Information and Referral, taxes
Starting January 1, 2012 everyone will be busy filing their 2011 Income taxes, Homestead tax refund, and/or Food Sales tax refund. The deadline to file is April 17, 2012. Independent Living Specialists (ILS) at RCIL will be available to teach consumers that are interested to learn how to file their Homestead tax refund and Food Sales tax refund on their own.
There is a resource library in every RCIL office that has a computer and internet access if you prefer to file your tax refunds electronically. You can use the library on your own or with ILS assistance.
If you are a person that would rather have someone do it for you every year there are free Volunteer Income Tax Assistance programs (VITA) in every local community. They are trained by Internal Revenue Services (IRS) on how to file Homestead and Food Sales tax refunds and Incomes taxes electronically. They will be available on a first come first served basis with evening appointments available. To find out where your local VITA site in your area you can contact your local Department on Aging, Community Action Program, Senior Center, Public Library, or County Clerk.
To prepare your taxes you will need the following information:
- Photo ID
- Social Security cards for all persons claimed on each return
- Birth dates for all dependents
- All documents showing 2011 income such as W-2, 1099’s, Social Security year-end statements, and Unemployment statements
- Interest & dividend statements
- A copy of your 2011 return (if possible)
- Real Estate Property Tax Statements (if applicable)
- Persons claiming childcare expenses should bring name of provider, address, phone number, tax ID number, and amount paid
- If you prefer to receive your refund checks as a direct deposit you should bring bank or credit union routing and account numbers



