The Kansas Department for Aging and Disability Services (KDADS) invites you to attend one of the following informational sessions for people receiving services, family members/friends, providers, advocacy groups and others interested in the disability, aging, mental health and substance use disorder services we administer.  The purposes of these sessions are to provide updates and information about the implementation of the KanCare comprehensive managed care program effective January 1, 2013, and to respond to any questions you have.  (These sessions are different from those conducted last week, and that will be held in September, related to the broader KanCare program, in that they will focus specifically on the KDADS-administered programs and services.)

 

If you plan to attend a session, please RSVP by contacting Candy Youle with the Center for Community Support and Research at Wichita State University at (800) 445-0116 or candace.youle@wichita.edu.  Please provide (1) your name, (2) which informational meeting you will attend (date and time), (3) your contact information, (4) accommodation needs, and (5) how many people will be attending with you if more than yourself.

 

To learn more about KanCare, please visit http://www.kdheks.gov/hcf/kancare/index.htm, which will be updated regularly as implementation readiness continues.

 

Date [ provider-focused meeting 10a-12p; and a member-focused meeting 2-4p] City/Location Address
Tues., Aug. 21st  Kansas City, KS – Hilton Garden Inn 520 Minnesota Ave.
Wed., Aug. 22nd  Wichita – WSU Metroplex 5015 E. 29th Street N.
Thur., Aug. 23rd  Topeka – Holiday Inn Holidome 605 SW Fairlawn Rd.
Fri., Aug. 24th  Salina —  Best Western Mid America 1846 N 9th
Fri., Aug. 24th  Colby – City Limits Convention Center/Comfort Inn 2225 S. Range Ave.
Tue., Aug. 28th  Wichita – WSU Metroplex 5015 E. 29th Street N.
Tue., Aug. 28th  Topeka – Holiday Inn Holidome 605 SW Fairlawn Rd.
Wed., Aug. 29th  Garden City – Clarion Inn 1911 E Kansas Ave
Thur., Aug. 30th  Kansas City, KS – Hilton Garden Inn 520 Minnesota Ave.
Fri., Aug. 31st  Pittsburg — Holiday Inn Express & Suites 4011 N Parkview Dr.

The House Social Services Budget Committee’s report on SRS and KDOA budgets stated “…there is considerable fraud and abuse in the system of Home and Community Based Services.” It goes on to state that this fraud, by Centers for Independent Living, is responsible for the Waiting Lists.

These statements seek to villify the Centers and the people who are working so hard for the disability community in Kansas. WE are the ones forced to tell people that although they are eligible for services there is an over-3-year-long waiting list. WE work with Kansans with disabilities on a daily basis struggling to change the misconceptions, provide education to the Legislature, and advocate for needed services to save the lives of Kansans.

SRS’ own testimony, audits, and cost studies show that Centers for Independent Living are good stewards of state money, there is not “considerable fraud and abuse”. It is time that we push back against an Administration and some members of this Legislature who continue to ignore facts and data and deny their own responsibility for the tragic situations that Kansans with disabilities are forced into now.

We are a Center for Independent Living, we are Kansans with disabilities, we are advocates, WE ARE NOT FRAUD!

“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!

On February 1, 2012 disability advocates across the state began a concerted effort to contact the Governor’s office and SRS regarding the Waiting Lists for Home and Community Based Services. The Governor’s office and the SRS administration responded less than satisfactorily advising (after several off the wall suggestions) that the Waiting Lists for Home and Community Based Services would be funded through savings “over time” that Medicaid would realize once Managed Care was in effect.

It is important that Governor Brownback hears from the disability community and our supporters and understands that their lack of a concrete plan to address the waiting lists is not acceptable. According to SRS, as of January 1, 2012 there are 3,369 persons waiting for Home and Community Based Services (HCBS) Physically Disabled (PD) services. 15 persons died while waiting during the month of Dec, 2011. The last person offered PD Services had been waiting for 2 years and 9 months!

These are Kansans age 16-64 who could, at any time, receive care in a nursing home at a much higher cost to the state. Meanwhile, the state’s ending balance continues to rise. Please contact Governor Brownback today and ask him what his plan is to ensure that the lives of Kansans are given the respect and dignity they deserve. Click here for a sample letter.

 

 

Today at 2:00pm the Kansas House and Senate will convene to start the 2012 Legislative Session. This promises to be one of the busiest, and maybe toughest sessions in recent years.

All eyes are on the Senate as it is an election year for them and the coalition of moderate Republicans and Democrats that stood together the last 2 years to stave off very damaging legislation will certainly be under fire.The House is most decidedly in Governor Brownback’s pocket and have the will and power to push through his ultra-conservative agenda.

The items that will be of particular note to the disability community are big ones this year:

  • Medicad Reform ushering in Managed Care
  • The Executive Reorganization Order that will combine aging and disability services and all of Medicaid under the new Department of Aging and Disability Services
  • An expected push to significantly lower or even end the income tax
  • Employment initiatives aimed towards Kansans with disabilities that have yet to be revealed
  • Funding Centers for Independent Living and Consumer Run Organizations as well as the usual budgetary items

We are very busy working to introduce an advocacy plan for this session that will utilize the strengths and voices of the consumers we serve to their fullest potential. Check back for regular updates from the Statehouse and contact your local RCIL office to find out how to become involved.

“Nothing about us without us!”

 

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).

 

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.

 

Twelve years ago, the United States Supreme Court rejected the state of Georgia’s appeal to enforce institutionalization of individuals with disabilities and affirmed the right of individuals with disabilities to live in their community in its 6-3 ruling against the state of Georgia in the case Olmstead v. L.C. and E.W.

The Olmstead Decision gave people with disabilities the tools necessary to demand what is rightfully theirs—the right to live independently in their community. The Supreme Court affirmed the ruling of the lower courts that Georgia had violated the integration mandate under Title II of the federal Americans with Disabilities Act (ADA), which states that states must develop comprehensive plans to end unnecessary institutionalization at a “reasonable place” with the goal of integrating individuals with disabilities into mainstream society to the fullest extent possible.

While it is frustratingly sad that this action took place only 12 years ago, what’s even worse is that our State continues in ongoing violations of the ADA and the Olmstead decision. Over 5,000 Kansans with disabilities are on years long waiting lists of in home services; however, the state will provide immediate institutional care, a clear civil rights violation.

In fact, Kansas has a program that will provide in home services to individuals but only AFTER a 90 day nursing home stay. We will allow someone to lose all of their possessions and frequently their home and become institutionalized for 90 days, and then assist them financially to transition to in home services, another clear civil rights violation.

While disability may not directly affect you, it almost certainly affects someone you care about. It is up to the disability community; those with disabilities and the loved ones and advocates of those with disabilities, to stand up for the civil rights of all Kansans. Across the state, Centers for Independent Living have assisted Kansans in filing over 600 Olmstead complaints.

If you have been denied services that would allow you to remain in your home, please consider filing a Civil Rights Complaint with the Office of Civil Rights. Your local Center for Independent Living can help you find the information.

 

I am a Case Manager, yet I do not manage cases, I work with people. My job is to visit people in their homes who have physical disabilities and complete an assessment to determine if they are eligible for a Medicaid program that provides long term care services to them in their own homes.

People used to be relieved when I would complete my assessment and tell them, “Yes, we can help you.” The Home and Community Based Services that they had qualified for would allow them to have assistance as they needed it allowing them to remain independent in their homes and communities and keep the dreaded nursing facility entrance at bay.

Things have certainly changed. Now when I complete an assessment I am forced to say, “Yes we can help you, but there’s a 2 and ½ year waiting list (at least). I look into the eyes of the loved one that is no longer able to stay with them and provide care and see the fear, frustration, and tiredness. I hear the cries of the woman who is terrified that without services she will be committed to an institution, when she is perfectly capable of staying in her own home with some supports.

There is no good explanation for this, Home and Community Based Services are much less expensive than Nursing Facility care, a fact that we as advocates have been stressing for years and years. This year, the savings opportunity was even greater, if Kansas had opted in to the Community First Choice Option that was effective in October, we would have received greater Federal assistance to pay for the services as well as ensure that individuals would not have to wait.

The long term effect of providing Home and Community Based Services to all who qualify instead of institutional care is not only a greater integration of individuals with disabilities into their communities, but also a huge financial savings to the state.

It is time for us to start asking our Legislators and our Governor, why; in a time of budget surplus, we are not talking about restoring the funds to HCBS to eliminate the waiting list and give Kansans the dignity and care that they deserve.

 

Community integration ensures that people with disabilities have the supports and services they need to live in their own homes in their communities. Centers for Independent Living (CILs) champion community integration and understand that when a community is truly integrated it then becomes the best possible community for all of its inhabitants.

Sometimes we spend so much time focusing on what changes the community needs to make to move towards integration that we may overlook what responsibilities we, as people with disabilities, have to our communities.

At the Disability Caucus, I was fortunate to be able to facilitate a regional session brainstorming issues and solutions to those issues Kansans with disabilities are facing. A recurring theme was a call to the disability community to step forward, be proactive, and contribute to our communities.

Several members of our regional caucus asked the question, “How are we contributing to our communities?” While pushing for equality, necessary accommodations, and adequate services is very important, we can also have a positive impact on the lives of those around us.

Of course, possibly the easiest place to start is in your own backyard, so to speak. By simply being a good neighbor we are contributing to our community. Whether it’s just taking good care of what is yours (your yard, house, etc.) you are helping the appearance and safety of your community. If you are a good observer of your neighborhood, you can alert police or neighbors to any potential problems.

Other ways to become an involved and active part of the community is by attending city council meetings, running or volunteering for city or county board positions, or volunteering at your local school or community center.

For people who live in rural areas, your public library, church, or even convenience store will often have posted information about public groups, local government issues, etc.

When we take the time to help those around us, even in small ways we are giving back. For Kansans with disabilities to be truly integrated with our communities, we must also be contributing members of those communities.

What ways are you contributing to your community? Let us know in the comments section and share your ideas with this community.