Disability rights advocates sound alarm about Iowa Medicaid privatization

Iowans who advocate for people with disabilities have deep concerns about Governor Terry Branstad’s plan to privatize Medicaid, shifting most recipients into managed care. Iowa Senate President Pam Jochum, who has been caregiver to a daughter with developmental disabilities, has been warning for weeks that the reorganization of Medicaid is too hasty and needs oversight from state lawmakers. Last week she discussed potential problems in more detail, citing the Kansas experience with Medicaid privatization as a cautionary tale. After the jump I’ve posted the transcript from that press conference. Supporting documents are available here on how managed care has affected Kansans with disabilities.

Meanwhile, Disability Rights Iowa Executive Director Jane Hudson shared her take on the “empty promises” in Branstad’s plan for Medicaid. You can read the full text of her April 20 guest column for the Des Moines Register at the newspaper’s website or at Disability Rights Iowa. I’ve enclosed a few passages after the jump, but you should click through to read the whole piece. Nearly 20 advocacy groups for Iowans with disabilities or mental health challenges signed on to Hudson’s editorial; the full list is below.

Transcript from the April 16 press conference of Iowa Senate President Pam Jochum (click here for the video):

I am Senator Pam Jochum from Dubuque and as you all know, this week the senate released our budget targets. And we believe that we have released a budget that is workable; it will meet our priorities, but it is not going to be easy.

The governor, of course, already released his budget in January so the public now has both the senate budget numbers as well as the governor’s.

What we don’t have is the House Republicans’ budget.  What we do know is what they are going to do to our school children.  I think we all heard loud and clear yesterday with all those school children here at the capitol that they believe they are worth far more than 1.25%.

But what I want to talk about today again is the governor’s proposal to privatize Medicaid.

Now, I as you probably know, I’ve talked about it many times. I have a daughter with severe disabilities. She was born with those disabilities.

And I know how important case managers are to helping adults and children and families in this state like Sarah and my family.

I have the resources.  I have the ability to really help my daughter if for some reason the privatization of Medicaid moves forward as it currently is.

But what I also know is that I have a duty; I have a duty to speak up for all of those other families who do not have the same resources that my family has to care for a child or an adult child with disabilities.

What I know is going to happen, lessons learned from Kansas, is that if case management is privatized, these children are going to fall through the cracks.  And it’s happened in Kansas.  So I’m going to be meeting with the Director of Human Services today and I’m hoping I can make the case that the contract needs to be quite different than what it looks like right now.

And that means that case management – now let me tell you what case managers are. They are people who have a small case load. They are truly advocates for the children and the adults that they represent in this system. They help us navigate this system. They help advocate for the services that the children and the families receive that they truly need.

And they make sure that the providers are providing those services.  They hold them accountable.

If I have a problem I can call Sarah’s case manager – her name is Kris – and she has been a wonderful advocate for Sarah and her needs. She’s been Sarah’s case manager and advocate for 16 years. We have a long term relationship.

The way this Medicaid managed care system, the privatization of that system, is moving right now is that those case managers are going to disappear.

And they are going to be replaced with what they call ‘care coordination.’

They’ve done that in Kansas and it has been an absolute disaster for those with a disability in Kansas.  So today I’m hoping that when I meet with the Director of Human services that we can convince him that case management needs to be outside of the system; that we need an ombudsman outside of the system to advocate on behalf of citizens of this state who are incredibly vulnerable.

And that we have terms and conditions to make sure that citizens, whether it’s the elderly, or people with disabilities, or a brain injury, have – they call them ‘waiver slots’ – that they are not going to be denied services.

It’s already happening.  We already know that some of our legislations who have constituents who have contacted them who have been on, for example, the elderly waiver for nine years. And suddenly they are no longer eligible.

It can’t happen this way.  We have duty and I have an incredible desire to speak out very strongly for the families and parents and children in this state who are very vulnerable, and what this system is going to do if we don’t intervene in some way.

So incredibly important that we have legislative oversight, we passed that bill 50-0 in the chamber.

The House has yet to act on it, and if they fail to do it, we need to make sure that at least that oversight piece, legislative oversight, ends up in our budget bill and in our final compromise before we close out this session.

Jochum: Case management will be part of the, right now, is going to be privatized. It’s going to be care coordination. Kansas, who I know has already gone through this process, their Disability Rights Group has come out and point blank has said: lessons learned. The three most important actions that should be implemented to prevent harm in its switch to Medicaid Managed Care, and it goes through three different, huge issues that need to be addressed, there’s many others, but the three biggest issues is to make sure that the waiver process…

Jochum: So this is the waiver process: you’re an older person, you have some limited abilities, but you’re still able to stay home. And you can stay in your home if you have someone come in and have someone maybe help you with some cooking or some cleaning or something of that nature. It keeps them out of a nursing home. What is already happening is that waiver system is already beginning to be compressed. That is not good.

Jochum: It’s already happening and we weren’t aware of it until it was brought to our attention just this week.

Jochum: The second thing that the Disabilities Rights Group has advocated for is to make sure that there is an independent Medicaid Managed Care ombudsman program. So, in other words, something outside of the provider system and the Medicaid System itself to help advocate for and help find solutions for citizens who believe that they have been denied a service that they should be getting in order to remain as independent and to reach whatever potential they have.

Jochum: And lastly, it says create a robust case management that is independent of managed care organizations and the service providers. Sara’s case manager, Chris, that’s her name: Chris, truly has been an incredibly strong advocate for my daughter and for the other adults with disabilities in her case load. She and I have a good relationship. She and Sara get along great. She understands Sara, she knows Sara. She’s been a part of our family for 16 years. She was just at our home a couple weeks ago. Part of her job: she comes to the house, she makes sure Sara’s doing well, what issues do we have, we talk about it for about an hour and then she said, “I’m really concerned I’m not going to have a job in January.”

Jochum: So, yes, case managers are not going to be part of this privatized system, and it is a huge mistake. Knew that before Disability Rights ever put out any kind of a statement on what lessons need to be learned from states that have already privatized their Medicaid system. If we’re going to head down this way, and right now the governor believes he can do this without any legislative action, he can do it unilaterally, we at least need the oversight from this branch of government and we need to make sure that the contract, when it’s finally completed, includes at least these three major provisions of lessons learned from other states that have gone down this path.

Reporter: Help us understand. I’m getting home help, but by no longer getting the waiver, then I have to go into a nursing home? Where’s the savings?

Jochum: The savings is that you keep the waiver in place. Number one: most older Iowans would rather remain in their home, they don’t want to go into a nursing home prematurely. And that’s why we created that whole waiver system, to help people remain more independent in their own setting rather than going into some kind of institutional type of care. What will happen if these services are pulled back either family members, and quite frankly families were very different than they were even 10 or 20 years ago where you had a more cohesive family unit living within the same community, that isn’t true anymore today. People are being pulled away because of jobs and other issues, and many times you do not have the same number of family members in your community that can help fill in some of those gaps.

So the waiver is there. The waiver is there to help people stay in their own home. When you pull that waiver back, either you end up finding some money in your own pocket (these are poor people or they wouldn’t be on the waiver to begin with) or they are just not going to get the services and they’re going to prematurely end up in nursing care. That is going to cost the system more money. And it’s not where most older Iowans or brain injured Iowans or whatever other group we want to talk about wants to be.

Reporter: Oversight question

Jochum: So right now the legislature does have an oversight committee, yeah we do, but the bill that we passed in the Senate, 50 to nothing… 50 to nothing created a whole new oversight committee that had stakeholders and experts in managed care, in healthcare, in disability rights, people from our human resources committee would be a part of that oversight.  They’ve got the expertise. Now, I’m sure we could get the five legislators or senators that were on the oversight committee, they might be able to get up to speed, but why do that when you’ve already got the experts in place? You can assemble that oversight committee rather rapidly, and they have the expertise to oversee as that as that system is unfolded in our state and make sure that we are not short changing the very people that we claim that we care about and want to make sure that they’re going to be well cared for and they aren’t going to fall through those cracks.

Reporter: …

Jochum: The House didn’t take it up (Mark speaks)

Reporter: Is there any strategy?

Jochum/Gronstal: Yes

Reporter: Can you explain it?

Gronstal: No

Gronstal: Yes there is some interest in finding another way to accomplish the same goal, and we will explore every option to make sure Iowans that need these services have somebody by their side.

Reporter: …

Jochum: He asked to meet with me today and so I will be meeting with him. We have had discussions about some of these issues in the past. I think that as we all learn more about what has happened in other states, we are becoming far more informed about the short comings of a privatization of a Medicaid system. I mean, it’s a public health insurance system that takes care of very vulnerable people throughout our nation, and quite frankly, many of the services that individuals, whether they’re adults or children with a disability have are very different than what most private insurance plans cover. And that’s why we created the Medicaid system, to help deal with some of those needs that a private plan often does not provide, like case management. So, yes, we have talked to Director Palmer about some of this in the past. Today I’m hoping get into a little more detail and hopefully, when the contract is actually proposed, that we’re going to see some safeguards built into it that I don’t believe are there right now.

Groups that signed on to the Des Moines Register guest editorial by Jane Hudson, executive director of Disability Rights Iowa:

Brain Injury Alliance of Iowa

ASK Resource Center


Disabilities Resource Center of Siouxland

Dubuque Center for Independent Living

Easter Seals Iowa

Epilepsy Foundation of North Central Illinois, Iowa, Nebraska

Illinois/Iowa Center for Independent Living

Iowa Advocates for Mental Health Recovery

Iowa Developmental Disabilities Council

Iowa Federation of Families for Children’s Mental Health

Iowa Mental Health Planning Council

Iowa Statewide Independent Living Council (SILC)

League of Human Dignity Southwest Iowa Center for Independent Living

NAMI Greater Des Moines

National Multiple Sclerosis Society, Upper Midwest Chapter

Olmstead Consumer Task Force

The Arc of East Central Iowa

Town Clock Mental Health, P.C.

Excerpts from Hudson’s column:

Disability Rights Iowa, the Iowa Olmstead Task Force and the undersigned organizations representing children and adults with disabilities or mental illness, including the elderly, plan on petitioning the Centers for Medicare and Medicaid Services (CMS) to deny Iowa’s application for a managed care waiver until comprehensive and transparent oversight systems are in place and shared with the public.

To approve states’ requests to move to managed care, CMS requires states to have a sufficient and sustainable infrastructure for monitoring managed care organization quality that reflects the size and complexity of the Medicaid long-term services and support program. […]

To date, the governor has not explained to Iowans how he intends to make the managed care companies accountable and responsible. This should alarm us all. The Department of Human Services/ Iowa Medicaid Enterprise lacks the expertise or staff to oversee the transformation of Iowa’s entire Medicaid system. In addition, that department has a poor record of accomplishment with respect to contractor oversight, as evidenced by its failure to appropriately ensure that nursing facility residents with mental illness or intellectual disabilities are receiving specialized services.

But there is a solution. The purported $51 million that the governor expects to save during the first six months of managed care could be devoted to developing a comprehensive oversight system, including:

1. External transition and oversight experts. The Iowa Medicaid Assistance Advisory Council has recommended that the state retain external managed care experts to guide patient transition, system implementation, and MCO oversight until DHS is able to develop the internal staff capacity to confidently operate independently. To ensure that the state receives unbiased and appropriate guidance from the external support entity, the council also recommended that the expert not be affiliated with any of the MCOs selected through the current request for proposal. The undersigned urge the state to conduct an open procurement process to identify such experts, rather than simply amending an existing open contract. The consultants who helped the state draft the managed care request for proposal must not be hired as the transition and oversight experts because they have a conflict of interest if they are hired to oversee a program that they created.

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