Archive for Wednesday, May 8, 2013

Ralliers want to preserve current system of providing long-term services to those with disabilities

May 8, 2013


Cinda Schneweis, of Lawrence, writes her message to Gov. Sam Brownback during a rally Wednesday outside the Statehouse. The rally was in support of leaving in place the current system of providing long-term care services for those with developmental disabilities.

Cinda Schneweis, of Lawrence, writes her message to Gov. Sam Brownback during a rally Wednesday outside the Statehouse. The rally was in support of leaving in place the current system of providing long-term care services for those with developmental disabilities.

Lines form Wednesday outside the Statehouse to sign a banner asking Gov. Sam Brownback to "carve out" long-term care for those with disabilities from KanCare.

Lines form Wednesday outside the Statehouse to sign a banner asking Gov. Sam Brownback to "carve out" long-term care for those with disabilities from KanCare.

— Hundreds of people with developmental disabilities and their parents and guardians gathered Wednesday to plead with Gov. Sam Brownback to leave their current system for receiving services alone.

"What we have is working," said Marilyn Bittenbender of Lawrence, whose 38-year-old daughter, Laura, receives assistance that allows her to live semi-independently.

She said Laura "will be severely harmed" if the assistance she gets is placed under the control of for-profit companies.

Under Brownback's plan, long-term care for those with intellectual and developmental disabilities will be switched over Jan. 1 to KanCare, the revamped Medicaid system that is administered by three insurance companies.

As the Legislature reconvened for the wrap-up session, people rallied outside the Statehouse and signed a 60-foot long banner featuring the message "Dear Governor, carve out long-term I/DD services from KanCare."

But in answer to a question from the Lawrence Journal-World, Brownback said he was sticking with his plan.

"We're putting forward our proposal as we have," said Brownback.

Kansas Department for Aging and Disability Services Secretary Shawn Sullivan criticized the service providers who put together Wednesday's rally.

"It's unfortunate that the providers are here today to create more fear for those they serve," Sullivan said.

When asked to respond to the parents who say the system is working now and they don't want to see it changed, Sullivan said, "I get a lot of parents and guardians that say differently. I get a lot of people coming to me, particularly those that have challenging behaviors and mental health needs, saying the system isn't serving them well now."

Jill Baker, administrator of services at Cottonwood Inc. in Lawrence, shook her head when told of Sullivan's comments. She said officials in the Brownback administration often make vague criticisms of the current system and use that to justify their proposed change.

Several parents of those with developmental disabilities who attended the rally expressed fear over placing the assistance for their children in the hands of for-profit companies, and said they weren't persuaded by assurances from the Brownback administration that their situation will be better under KanCare.

They said nowhere in the country has long-term care, such as help with preparing meals, job coaching, money management, buying groceries and other assistance, been brought under managed care organizations, and, at the very least, a pilot project over several years should be launched to see if the proposal is doable.

Cinda Schneweis of Lawrence said her son, Phil, 28, receives help from people who know him. "They're not going to be there through an 800 number," she said. Of the governor's assurances, she said, "Can they guarantee that? Will they come help me pick up the pieces when it comes crashing down?"

"Long-term care services should be crafted by a local team," said Susan Davis of Baldwin City, whose 28-year-old son, Jeff, receives help.

Bittenbender said, "We have spent decades building this system, and it is working." She said if a person receiving services gets into a crisis situation, the parent shouldn't have to deal with a call center. "I don't know how it won't change for the worse. Why gamble it?" she said.


Susan Shaw 4 years, 9 months ago

Ohhhh Shawn Sullivan, those providers aren't trying to create fear. The fear is coming from parents who fear what Brownback's thoughtless proposal will do to their disabled family members.

chootspa 4 years, 9 months ago

Oh come on. I hear providers just loooove to have extra paperwork and months of delays in getting paid.

jafs 4 years, 9 months ago

And have to deal with 3 different insurance companies as well.

deec 4 years, 9 months ago

And deal with three different companies to receive a paycheck.

BigDog 4 years, 9 months ago

chootspa - providers of DD services complain about paperwork ..... that continues today and goes back even from when I worked in the system many years ago

chootspa 4 years, 9 months ago

Of course they do, but at least they've generally figured out which paperwork they need at this point. Now they've got a whole different set, a bunch of arbitrary denials and red tape to work through, and lengthy delays in receiving payments.

jafs 4 years, 9 months ago

And why shouldn't they complain?

Case management is now 60-80% paperwork - that leaves only 20-40% of their time with which to actually help their clients, which is what they want to do, and why they got into the field in the first place.

chootspa 4 years, 9 months ago

The sort of efficiency that the state could have been working on instead of pretending that John Adams' invisible hand does all the managed care paperwork for them.

Thinking_Out_Loud 4 years, 9 months ago

"a paucity of providers?" What, exactly, does that mean? How many providers are in a paucity?

Butch851 4 years, 9 months ago

This isn't about fear, it is about real life experiences people have with massive for profit health insurance companies. One Douglas County family endured the horror of KanCare with their daughter's medical services. Their daughter relies on oxygen, monitoring of oxygen levels, seizure medications, and needs to be fed special food through a tube. They did not have any problems before KanCare, but the company that supplied all of the needed equipment and food couldn't come to contract terms with the assigned KanCare health plan (Managed Care Organization) so all of the equipment was taken away and food was no longer supplied. Their daughter also went weeks without being able to get her seizure medications refilled after KanCare started. Without being able to properly monitor their child's oxygen levels, her lips and limbs turned blue. Without being able to order the special formula needed, the family had to water down her food formula to make it last. They made repeated calls for help to their daughter's KanCare health plan/MCO and nothing got resolved. It took several weeks of persistent calling and emailing to the MCO, the KanCare Ombudsman, to their local Senator who in turn contacted the Lt. Governor's office, and hiring an attorney to finally get back all of the medical equipment, supplies, medications, and food their daughter needs to stay alive. And it is the MEDICAL services that these companies have experience in already. If doing what they already know is such a nightmare, how much worse will it be to add in the daily living services that the KanCare health plans/MCOs know absolutely nothing about?

Mike1949 4 years, 9 months ago

It is already a done deal. Brownback has either been paid, promised, but in essence guaranteed some kind of payment now or in the future from the ceo's of these companies so they can make millions off of people who don't have the means to provide the services on their own.

What is it going to take, a few law suits to get these companies to provide the needed services? You know brownback will use public money to defend these law suits. That in itself constitutes fraud as far as I am concerned. It is funny that politicians can be on the take, and unless you have a recording of them actually saying they are trying to defraud the people stealing tax payers money to make a bundle off the public.

tomatogrower 4 years, 9 months ago

That's exactly what it's going to take, and unfortunately a death of someone's loved one, like the girl above. Brownback and company is going to face some wrath if that happens, or should I say, when that happens.

chootspa 4 years, 9 months ago

He only cares about babies that haven't been born.

Thinking_Out_Loud 4 years, 9 months ago

Hyperbole, lawrencecloser. This is not a productive argument that advances the conversation--this is a sound-bite that furthers the divide between the two sides. Let's look for commonalities, and build a solution.

Larry Sturm 4 years, 9 months ago

For a supposedly christian Brownback does not follow the teachings of Jesus. Brownback does not have a heart.

Larry Sturm 4 years, 9 months ago

Until this country quits pandering the rich and putting down the middle and lower class it will not be a great country to live in. We will be like other countrys with the super rich and the super poor.

oneflewover 4 years, 9 months ago

Require that all people on financial assistance be sterilized to qualify. Harsh to say but the human race would become stronger as a result.

Lisa Medsker 4 years, 9 months ago

That has actually been tried. Europe refers to it as "World War Two". Lucky for you, our current Right Wing Faction has learned NOTHING from one of the other incredibly famous Right Wing parties in history, so maybe they'll try it here, too!

This story is also about benefits for those with disabilities WHO ALREADY EXIST. Their guardians or medical proxies aren't seeking benefits for THEMSELVES, but for the person who isn't able to obtain or hold employment that allows insurance, especially for the specialized services that most people whose disabilities are profound are going to need. Yes, you could sterilize disabled people for needing help. They would still be disabled. Anomalies like Down's Syndrome and Fragile X Syndrome, Cerebral Palsy, and Muscular Dystrophy would STILL exist under your brilliant plan.

Mike1949 4 years, 9 months ago

I think sterilizing should be a little bit closer to home for a comment like yours.

deec 4 years, 9 months ago

So someone who, say, is hit by a drunk driver and becomes paralyzed should be sterilized in order to receive help? How christian of you. I thought eugenics was no longer in vogue.

Pastor_Bedtime 4 years, 9 months ago

Since Brownback has mooched hundreds of thousands in farm subsidies over the years in federal subsidies for his family's farm, you must support sterilization for him and other wealthy Kansas farmers as well. Right? How about a bit of consistency here.

Angela de Rocha 4 years, 9 months ago

Here is some vague criticism: There are no incentives for better outcomes in the current system. There is no accountability. Providers now are paid on the basis of how many hours of care they provide, rather than on their ability to demonstrate improved outcomes for I/DD persons' health and well-being. The KanCare contracts allow the State of Kansas to withhold payments to a health plan that does not achieve improvement in care coordination and health outcomes. The KanCare contracts include an expectation that better coordinated care will demonstrate better overall outcomes than the old system did, and result in fewer expensive hospitalizations. In order to make a profit, the KanCare MCOs have every incentive to improve the system and serve persons on the I/DD waiver program better than they are being served now. Angela de Rocha

chootspa 4 years, 9 months ago

Gee, that doesn't all sound vaguely like an excuse to deny services to someone because their providers can't cure Down Syndrome.

BigDog 4 years, 9 months ago

It isn't about curing Down Syndrome ... it is about better coordinating care as well as teaching/encouraging the individual the skills to become more independent. Currently, the more care/services an agency provides the individual resulting in the more they get paid .... no incentive to help increase independence by the individual. And before people go off .... no I am not saying that you will make people totally independent from the provider system. Also a lot of conflict of interest with the CDDO assessing and also providing the services. They are to offer families a choice of providers .... but the CDDO during the assessment process has already established a relationship with the family/individual.

Larry_Local 4 years, 9 months ago

I can tell you right now that Case Managers don't care how much a provider gets paid by the State. Their job is solely to provide the best care coordination to an individual, which in turn increases their independence. Yes, the provider bills for the Case Manager's time, but there is no incentive or commission provided to the Case Manager. And working in the non-profit industry is not financially rewarding. These people do what they do for the personal reward of helping people. The MCOs, however, will be working for the incentives...

jafs 4 years, 9 months ago

If the MCO's take over assessment and case management services, that possible conflict of interest is still there - and that's their clear plan, as evidenced by their statement to that effect to the state.

BigDog 4 years, 9 months ago

MCOs do not conduct assessments for any of the waiver populations currently in the KanCare system. My understanding is that they wouldn't be doing the assessments for this population either.

jafs 4 years, 9 months ago

It is clearly their plan to do just that.

Look at their statements on the state's webpage about their plans - it's right there in black and white. After the first year, they intend to take over both assessment and case management for the dd population.

In fact, they claim it's necessary in order to achieve the "desired savings".

BigDog 4 years, 9 months ago

MCOs do not conduct assessments for any of the waivers that have already been added to KanCare.

chootspa 4 years, 9 months ago

A conflict of interest? Like directly profiting if you can find an excuse to deny someone services? That kind of conflict?

tomatogrower 4 years, 9 months ago

How do you address the situation described above? If it had come down to it, that girl's only option would have been to get "expensive hospitalization". She might have died, but then she wouldn't be a burden to you and your "for profit buddies". Did you ever think that the system has been working already? You and your "for profit" buddies just weren't getting rich from it, so to you it wasn't working.

jafs 4 years, 9 months ago

If that's true, then the state isn't overseeing the system adequately.

That could be improved without privatizing it.

And, terms like "improved outcomes" are more medically appropriate than for many of the services for dd folks, which are ongoing and long-term.

All of the rest of your post is about medical care, which is already in KanCare, and even dd advocates who oppose putting long term services into it agree that there might be some benefits to the kind of coordination you mention. However, it should be noted that there are ongoing problems with the KanCare system.

Larry_Local 4 years, 9 months ago

Long-term I/DD services do not fit the model of "better outcomes" on the non-medical side. You said it right there - that providers are paid based on hours, not on a person's health and well-being. Well, the medical side is already under KanCare, so let's see if the MCO's can improve these individuals' health and well-being. For day and residential services, what would you consider a better outcome? Please provide a specific example on how KanCare will improve the I/DD system - and avoid using any medical terminology, since that's already under KanCare. An MCO can't improve on day and residential services "better than they are being served now". How insulting to the hard-working individuals that have spent decades working with people with disabilities! The MCOs have admitted they don't know the I/DD system on the non-medical side. How can they improve on something they don't understand? Explain to me how the MCO improved the situation/outcome for the girl mentioned above? Unbelievable, Angela!

wildflower26 4 years, 9 months ago

Those are medical outcomes. Are you implying that by withholding payment to MCO's for unmet health outcomes, the MCO's would then be able to withhold payments to service providers for unmet health outcomes?

If that is the case, it should be enough to make anyone's blood run cold.

chootspa 4 years, 9 months ago

It's sort of like No Child Left Behind, only much, much worse.

Rational_Kansan 4 years, 9 months ago

The problem, Ms. de Rocha, is that people don't trust your agency or this administration to do what's right or to listen to the people. This administration and current crop of legislators actively undermine what works best in Kansas -- roads, education, the arts, municipalities, medicine and its provision, the judiciary -- and then say: trust us. We cannot trust you -- and this effort to conduct a free-market experiment on the most vulnerable in our community is unjustified and cruel. If you must, pilot something or fix the system you have. Back up your claims with real, independent research. What percentage of the recipients of care are unhappy with what the state provides? What improvements would they suggest? Clearly this change is precipitous and about something else other than care for people who need it.

rtwngr 4 years, 9 months ago

The problem, irRational_Kansan, is the current system is fraught with fraud and excessive costs that are administratively oriented. This does nothing to improve the quality of life for those that need these services and it is a burden on all taxpayers. People, such as yourself, do not seem to understand that the government is not always the answer to your problems.

tomatogrower 4 years, 9 months ago

Good, explain that to the family above. I'm sure they were happy with the "fraud" they were receiving from the oxygen supply company. Do you honestly think that there is not fraud in private business? Where do you live? Na na land?

jafs 4 years, 9 months ago

Please provide some evidence of the "fraught with fraud and excessive costs" involving long term services for dd folks.

My wife has worked with that population for about 30 years and hasn't seen it.

jafs 4 years, 9 months ago

If Mr. Sullivan gets a lot of complaints, then it would be responsible of him to deal with them by contacting providers and improving the situation. After all, he is the head of the agency that oversees those services - that would be part of his job.

Unfortunately, he won't even provide any details to them about the complaints when asked.

lindaparker17 4 years, 9 months ago

It seems clear to me that Mr. Sullivan and Ms. de Rocha are speaking for our heartless Governor. Governor Brownback has thrown down the gauntlet and instructed his minions to "hold the line" on I/DD and KanCare. I agree with Rational_Kansan "that people don't trust your agency or this administration to do what's right or to listen to the people."

Larry_Local 4 years, 9 months ago

I find it sadly comical that government employees, politicians, and for-profit insurance companies with no experience in non-medical services provided to the I/DD population would know what is best for them. So you're saying that with no research (and a delayed pilot project that has no intention of being a true "pilot") to support the inclusion of I/DD services under KanCare, that you know more than the parents, case managers, and the individuals themselves? I've not heard one story of someone directly involved with the services being provided that thinks I/DD services should be in KanCare. No system will ever be perfect. There will always be room for improvement, but let's compare the "so-called" complaints the state has received to the complaints the MCOs are receiving on a DAILY basis! Maybe we should measure "better outcomes" based on how many complaints you receive. The MCOs are obviously failing there.

wildflower26 4 years, 9 months ago

Given Mr. Sullivan's accusations of fear-mongering, perhaps he should ask some average citizens how THEY would feel about having their entire lives managed by a for-profit insurance company. I'm sure the reaction would be positive, right? After all, for-profit insurance companies have never put profits ahead of individuals, right? And for-profit insurance companies are genuinely concerned with giving people choices, right? Surely, the bean counters would be willing to make less profit or barely break even if it means providing services that treat people with dignity and respect. Right??

Perhaps Secretary Sullivan should lead by example and allow Amerigroup to manage every aspect of HIS life. That way, he can show all of us how wonderful it is to be treated like nothing more than a number on a balance sheet.

Wildcat94 4 years, 9 months ago

Just listen in on the KanCare Rapid Response Calls every Thursday morning at 9am (phone #877-247-8650 and use Participant ID Code #79687456) to hear the so called "accountability" with the MCOs under KanCare. You will hear accounts from providers who have repeatedly attempted to get a problem resolved only to never hear back from the MCO(s) about their issue. Providers who still have not been paid for services provided in January. Claims that have not been paid at the correct rate. Other providers who were mistakenly overpaid and cannot get the MCOs to assist with with RETURNING the over payments back to the MCOs. Providers not given the care plan information from the MCOs they need to even provide services. All of the extra staff time it is taking to spend hours on the phone week after week to sort through problems, and the list goes on and on. Any family having trouble with getting the services or medications they need under KanCare should call to report their problems too!

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