KanCare wants your thoughts on their program that was started January 1, 2013.  There will be two meetings on the same day in each of the city they visit. Meetings will be in the afternoon and evening. You can come anytime between 1:00 PM and 3:00 PM for the afternoon meeting and anytime between 6:00 PM and 8:00 PM for the evening meeting. You do not have to stay for the full two hours.  If you have questions, please call 1-866-305-5147. If you need accommodations, please call Cindy Stortz at (785) 296-4753.  You can also email KanCare@kdheks.gov.  Si necesita asistencia en Español llame al (866) 305-5147.

Questions KanCare would like to hear your thoughts on:

1. What do you like most about KanCare?

2. What do you like least about KanCare?

3. What was important to you as you chose your KanCare Health Plan?

Meeting days and locations
Tuesday, May 21, 2013
Windsor Place Events Center       Southwest Developmental Services, Inc.
102 W 8th Street                             1808 Palace Dr., Suite B
Coffeyville, KS 67337                      Garden City, KS 67846

Wednesday, May 22, 2013
ComCare Mental Health Center    Ft. Hays State University – Robbins Ctr.
635 N. Main                                        One Tiger Place
Wichita, KS 67203                              Hays, KS 67601

Thursday, May 23, 2013
Lawrence Memorial Hospital        Central Kansas Foundation
330 Arkansas, Conf. Room A          1805 S. Ohio St
Lawrence, KS 66044                        Salina, KS 67401

 

 

 

“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!

 

With the new year comes a new Legislative session in Kansas. The 2012 Session starts on Monday January 9th at 2:00pm and promises to be a busy one.

The disability community will be closely watching as the Administration and the Legislature take on huge items including an expected Executive Order re-organizing SRS, the Medicaid overhaul into a managed care system, an anticipated move to do away with income tax, Education finance reform, and KPERS reform.

The Resource Center for Independent Living will be working to make sure our consumers and community partners stay updated on the goings on within the Statehouse. We’ll utilize this blog, our Twitter and Facebook pages, as well as our existing NetPals email service.

Something new that we plan on introducing this session are video updates from the Statehouse from our advocates on the front lines, our consumers giving testimony, and others. These will be posted to our YouTube stream as well as on our blog and other social media outlets.

2012 will be a year of big changes for the disability community in Kansas and for the State as a whole. Join us in getting our updates and information out to our friends, families, Legislators, and community partners.

Let us know if you would like to share your story with your Legislators or the media. We are looking for individuals who utilize services or who are on waiting lists for services, people who are working or who are struggling to find employment. Contact us today and share your voice.

 

I talk to people a lot about the proud history of the disability community in Kansas. The progress that was made in the state by dedicated advocates placed Kansas in the forefront on disability rights. We have constructed a system that, while not perfect, works to empower Kansans with disabilities, helps them acquire gainful employment, and honors their choices and right to make them.

It is a system that stresses the Independent Living Philosophy and utilizes grass roots organizations like Consumer Run Organizations (CROs) and Centers for Independent Living (CILs) so that folks with disabilities are working with other folks with disabilities. This system has ensured that we have had a place at the table when decisions have been made regarding services, programs, and funding for the disability community. Kansas is known across America as a place with an active and vocal disability rights base.

Over the last year, this voice has been stymied. Decisions and entire program changes have been made in secrecy, the grand unveiling of which are shrouded in confusion, urgency, and completely overlook the very real needs of the people they claim to protect. One of the biggest changes thus far is the plan for bringing Managed Care to Medicaid services. The Governor and Lt. Governor are proud to present this to Kansas as a way to cut costs and improve the care that Kansans receive.

To do this, 3 out-of-state corporations, who have a responsibility to their shareholders to turn a profit, will now be paid millions and millions of dollars to manage your care. Instead of peer based service delivery that we now have in Home and Community Based Services, for instance, a clinical team will determine what care you need for everything from medications to your long term care services. The State claims that this will result in an $853 million savings.

It seems difficult to believe that much money can be cut from the existing Medicaid budget, these corporations will make a profit and potentially earn up to $250 million in bonuses and services will get better. Not only are cuts in service going to be necessary in order to meet the fiscal realities of this plan, but we stand to lose the very thing that makes Kansas a leader in disability issues, the belief that the person with the disability is a competent decision maker in their own care; that people with disabilities don’t need to be “managed” they need to be empowered to make their own decisions and supported while doing so. The benefits of a system that stresses these core beliefs include a disability community strongly connected with the community at large, working, playing, loving, raising families, and contributing to society.

Please contact your State legislators and let them know that any reform of Medicaid must contain a way for consumers of the services to have a voice in the implementation. Centers for Independent Living, Consumer Run Organizations, and other consumer advocacy groups must be funded if people with disabilities are to have a fair representation in decisions made regarding their lives.

I solicited ideas for this blog post from our followers on Twitter and Facebook. Thanks to @Wayne2poles for the topic regarding how people with disabilities can live alone and can afford it.

Being gainfully employed is the best way to be able to afford to live independently. Not only does it allow you to bring home more money that disability benefits alone, but it offers you empowerment, success, and fulfillment.

Finding a job as a person with a disability has always been more difficult than finding one as an able-bodied person. Now state and local governments are slashing assistance, public transportation companies are raising fares and decreasing services, and the job market is flooded with people who are out of work, making most jobs more difficult for anyone to get.

Despite the best efforts of people with disabilities and their advocates, finding or retaining employment can be very difficult at this time. That means that we must become ever more resourceful to live within our very limited means.

Following are some tips to help you live independently on a very tight budget.

    • Apply for benefits that you are eligible for – In Kansas, if you are a person with a disability you may be eligible for some types of public assistance such as Medicaid, Food Stamp benefits, utility assistance through LIEAP, and day care assistance. To apply you can visit the SRS website.
    • Know what services and resources are available to you – Centers for Independent Living(CILs) including the Resource Center for Independent Living are great community resources. We can help connect you with local food banks, volunteer programs, community funding programs, and other services that can help you make it through a tight month.
    • Take charge of your budget – The importance of this step cannot be overstated. A good way to start is to keep a daily record of what you spend, even if it’s 50 cents for a soda. This link is to a great article on getting started with a budget including a worksheet you can print off to start tracking. Once you know what you are spending, you can use these free worksheets to create your own budget. This is another area in which CILs can come in handy. One our our core services is Independent Living Skills Training. You can receive education and assistance in learning how to set up and manage your own budget.
    • Find local couponing groups – To help your grocery and household item budget stretch more, consider joining local groups that teach and support you to use coupons. Inspired by a television show; groups have popped up all over the nation dedicated to extreme couponing. While you don’t have to necessarily be extreme, using some of these techniques can be very beneficial. There are also several online groups and forums devoted to the topic.
    • Weatherproof your home or apartment – Many cities and counties have organizations that can help low income tenants or owners weatherize their homes. This will save a large amount on utilities. Here is also an online do-it-yourself weatherization guide.
    • Join a local Freecycle groupFreecycle groups consist of local people willing to give away or trade items or services for other items or services. This is a great way to obtain a needed item you can’t afford as well as make sure things that you aren’t using are going to people who need them.

 

These are just a few ideas to help you stretch your budget. I would love to hear from you regarding other techniques and resources, leave them in the comments and thanks for reading!

The Big Tent Coalition and Kansans for Quality Communities are teaming up to bring Town Hall meetings to towns across Kansas. The purpose is to “discuss the impact of continuing budget cuts on vital state services and the ramifications of eliminating the Kansas income tax.”

The Resource Center for Independent Living is working to ensure that our consumers and community partners know about and are able to attend these important events. At each event, Legislators and media outlets have been invited, this is a perfect time to visually represent the disability community’s commitment to advocating for needed services, programs, and equality.

The schedule for the Town Hall Meetings is as follows:

  • Salina – November 8th at 5:30pm South High School Commons Area, 730 E. Magnolia, Salina
  • Lawrence – November 9th at 5:00pm Carnegie Building, 200 W. 9th Street, Heritage Room, Lawrence
  • Pittsburg – November 10th at 4:30pm Pittsburg Auditorium, Rooms B-6 and B-7 (basement), 503 N. Pine, Pittsburg
  • Wichita – November 29th at 3:30pm Aley Park Clubhouse, 1803 South Seneca, Wichita

The following link is to the informational flyer, please feel free to print and distribute in your communities.
Town Hall Meetings Invitation

As we edge closer to winter, the leaves are changing and falling, the air is cooler, and the days are shorter. These are expected changes we prepare for each year. This year, Kansans with disabilities are experiencing many other changes.

There is a new administration in Kansas state government and in SRS, over the last several months words like “reform” and “managed care” have been making frequent appearances. There are also the not unexpected Home and Community Based Services (HCBS) waiver changes that began yesterday after a somewhat confusing implementation process.

What does this all mean for you? In all honesty, we aren’t sure yet. There are certainly parts of the equation that we understand, such as Financial Management Services (FMS) implementation, but there are many more parts that have yet to be fully revealed.

The Resource Center for Independent Living has been a part of the dialogue from the beginning, offering our ideas, concerns, and opinions at every opportunity to do so. We have worked closely with other Centers for Independent Living and agencies for the disability community to form a strong, cohesive voice seeking to protect and ensure the rights of people with disabilities do not get overlooked in the demand to save costs and trim budgets.

Kansas has a long history of progressiveness in the disability arena, ensuring personal choice and the Independent Living Philosophy have been a part of our Medicaid programs and that Centers for Independent Living have a seat at the table when it comes to making decisions regarding the lives of people in the disability community.

We will keep working to ensure that Kansas remains a national leader in disability rights and we ask that Kansans with disabilities join with us. This blog has information within it of various advocacy efforts you can be involved in, such as writing letters to the editor, contacting Legislators, and others. If you are interested in receiving advocacy updates and calls to action from us please email me and I will add you to our contact list.

Changes are coming and it’s up to the disability community to ensure that our rights and our best interests are protected. For our part, RCIL will work to keep you updated on changes as we receive information, answer any questions that you may have, and continue to be a voice for Kansans with disabilities.

 

Last Friday a new advocacy group named Kansans United in Voice and Spirit held their first rally at the Statehouse. The turnout was good as far as such things go with a little over 250 people present on a cold and damp day. The group’s website states that they are “Concerned citizens of Kansas united to support, advocate for, and protect valuable state services programs and policies and to promote government by and for all Kansans.”

This collection of people representing a diverse population is, I think, a good sign. For years, folks with education, the disability community, the public employee lobby, public safety supporters, and others have each advocated mightily for their cause.

This approach, which indeed worked well for some, could not work well for all. Some groups have more support, more money, and some just yell louder. Seeing the cohesiveness that is beginning to be a staple in the advocacy scene, warms my heart.

We are all Kansans, regardless of any other identifying characteristic, that fact alone unites us. This post is not supporting one group or condoning their beliefs, it is simply my way of acknowledging and hopefully encouraging, all of our advocates to look around and at the people who may not be a part of the “disability community” but who are fighting such similar fights.

We should reach out to those folks, become involved in areas outside of just the disability arena and work towards a state that embodies all of the things we as Kansans hold dear.

The Resource Center for Independent Living is partnering with Centers for Independent Living(CILs) all across Kansas in a Letters to the Editor campaign coordinated by the Statewide Independent Living Council of Kansas(SILCK).

I have drafted 9 sample letters for advocates and consumers to use as inspiration for their own letters covering a range of topics. They have been uploaded on The Kansas Truth Is website.

Other Resources on The Kansas Truth Is include a list of contact information for News outlets across Kansas and an updated Legislative guide that includes photos of all of our State Legislators.

The sample Letters to the Editor can also be downloaded in a Word Document HERE.

We must get the word out to our families, friends, neighbors, and especially our Legislators that Kansans with disabilities are engaged in a long uphill battle for their independence. Please use any of these resources to help us submit Letters to the Editor across Kansas in our home town newspapers as well as the larger regional ones.

 

On Saturday, September 10th Topeka Independent Living Resource Center (TILRC) and Kansas ADAPT are teaming up to host a rally on the steps of the Statehouse from 1:00pm-2:30pm.

The Rally is in support for Medicaid Home and Community Based Services. These services are imperative for Kansans with disabilities to remain in their homes and not be forced into institutions to receive needed care.

We will gather and park at the corner of 5th & SW Jackson at 12:30pm to assemble and march to the Statehouse, South steps.

Show Your Disability Pride! Demonstrate the Power of Direct Service Workers! Recognize the Stake of Friends and Family!

PARTICIPATE IN GRASSROOTS DEMOCRACY IN ACTION!

Hear from Dynamic Speakers! Listen to Disability Rights Music! Sing Patriotic Songs! Enjoy Amusing, Pointed Street Theater Skits!

For more information and to RSVP, please call 785-224-3865 or go to www.tilrc.org. See the event flyer here Disability Advocacy Rally.