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.

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.

Yesterday Gov. Sam Brownback and Lt. Gov. Jeff Colyer unveiled sweeping changes to the Kansas Medicaid program. These changes were a part of the Governor’s “Roadmap” and took on one of the three big areas he wanted to tackle along with KPERS and Education.

Beginning in January of 2013 all Medicaid recipients will be under Managed Care plans. The administration foresees “at least 3” Managed Care organizations running the state plan they have named, KanCare.

The goals for the new program are to reduce cost, by as much as $853 million (all funds) over the next five years, and to improve care quality and outcomes for beneficiaries. KanCare places a great emphasis on treating a person as a whole by using care coordination and person centered planning by the managed care organization.

What does this mean for Kansans with disabilities? It means that for-profit corporations will now be managing your care. States have been moving more and more towards a managed care model for Medicaid and managed care has been shown to reduce costs.

The way that managed care programs accomplish this is by cutting down on very expensive services such as hospital admissions by utilizing preventative care and wellness programs or limiting what services are covered or considered “necessary”.

Kansas’ foray into Medicaid managed care will start with 3 year contracts with the managed care organizations which could be a cause for concern. There is no “trial” run it will either work, or it won’t. Of course, because the corporations running the program are accountable to their shareholders to make a profit, the money spent on Medicaid in Kansas will have to include a profit margin for the managed care organizations.

I am including links to the KanCare FAQ, the KanCare Executive Statement, and the Medicaid Reform Plan Press Release.

KanCare Executive Summary

Medicaid Reform Plan Press Release

The RFPs were issued yesterday to companies interested in managing Kansas Medicaid and are due back to SRS in January 2012.

Along with Medicaid Reform is some pretty major agency shuffling. Kansas Dept. of Aging will become Kansas Department for Aging and Human Services and fold in services for the mentally ill, all 5 state hospitals for the mentally ill and developmentally disabled as well as the Home and Community Based Services waivers for Kansans with disabilities. The Kansas Dept. of Health and Environment (KDHE) will oversee the Medicaid contracts and finances.

SRS will be renamed Department for Children and Family Services and focus solely on programs for children and families. They will keep Adult Protective Services and will fold in Family Preservation programs that are currently with KDHE and some prevention programs from the Juvenile Justice Authority.

As my previous blog post stated, changes are coming to the disability community in Kansas and it is up to us to make certain that we are not just passively accepting what is handed to us. We need to make our voices and our needs heard. We must demand that any changes made preserve our independence, our ability to choose, and include our input.

The Resource Center for Independent Living will continue to update you as we can about the upcoming Medicaid reform and the soon-to-begin Legislative Session.

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.