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an eye on the Indiana Medicaid Waiver program
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Joined: 24 Oct 2005
Posts: 4

PostPosted: Mon Oct 24, 2005 7:57 pm    Post subject: This Forum Reply with quote

I think that WaiverWatch is an excellent idea. I am just a little leary and very curious though as to who is behind it, sponsoring it, etc.
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Joined: 21 Oct 2005
Posts: 35

PostPosted: Mon Oct 24, 2005 9:39 pm    Post subject: Reply with quote

Thanks, Frederica--we think it's a good idea, too (but we admit a bit of a bias!).

Who are we? We're parents, case managers, individuals on waivers, and others who have come together to improve communications regarding the waiver sytem. There is a great deal of confusion surrounding the recent changes to the waiver system in Indiana, and as there is no other mechanism for waiver participants to communicate with one another, we thought this forum might be a good way to exchange information.

We'd love to have state officials and other professionals in the disability community join in the discussion as well and answer some of the questions that are on everyone's mind.

We respect everyone's right to privacy, however. We do not require that anyone (parent, case manager, government employee, ww volunteers, etc.) identify themselves by name or publish their email address in order to participate.

I hope I've answered your concerns. Feel free to private message me via the board if you prefer.

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John Dickerson

Joined: 26 Oct 2005
Posts: 3

PostPosted: Wed Oct 26, 2005 12:21 pm    Post subject: Waiverwatch Reply with quote

I think this is a very good idea, and am pleased folks with much more skills than I are doing this.

I have shared this site with key FSSA leaders and would encourage them to participate as communication is difficult in the best of times, and there is much for everyone to understand and comprehend.

We are working with a number of familes to address appeals - which you can do - and also to work with the state to make sure the real intent of this does not unintentially bring harm to people.

From initial reports approximately 75% of the people on the waiver are finding the process worked, 25% have a significant problem regarding to change of provider, a drastic reduction as a result of utilization of services and now getting that fixed only to see they are cut back, or because there was a major life change such as graduation from school that requires a different plan.

Thanks for this effort. I am glad we can add it to our effort to get information to families.

John Dickerson
The Arc of Indiana

John Dickerson
The Arc of Indiana
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Joined: 24 Oct 2005
Posts: 6
Location: Evansville

PostPosted: Wed Oct 26, 2005 1:07 pm    Post subject: Reply with quote

Hi, John! Tim Thompson here.

Glad to see you on the waiverwatch board. As a parent, I'd like to see more providers, advocates, and government officials involved who can help answer our questions. Personally, I would love to see some FSSA folks participating in this board, so by all means encourge them to check it out.

From talking to families down here in Evansville, my hunch is that the number of individuals with "significant problems" with the new plan is probably much higher than 25%. Don't know if that's a geographic abberation or not, but we do have our work cut out for us downstate.

I appreciate everything you're doing on our behalf--thanks!

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Paula Guzzo

Joined: 26 Oct 2005
Posts: 1

PostPosted: Wed Oct 26, 2005 2:31 pm    Post subject: Response to John Reply with quote

Hi John, I'm delighted that you've passed on the info to state folks. This seems to be a way they can get involved with families and hear our stories. To date, that seems lacking in this impending monumental change. I've sent the link this site to all who I think would be interested and have hopes they will participate.

As an advocate in the Evansville area, I've received phone calls from parents and consumers for years asking for referrals on case management. I'm stunned that any study shows that people don't know their case manager's name because I don't know anyone who can't name their case manager. Initially when everyone was assigned a case manager through the Council on Aging, that might have been the case as that staff seemed to be continually changing and couldn't always meet our needs. More recently, though, as consumers sought private case managers, and with changes in the system, case managers have become paramount in the provision of services. As was stated at the Evansville meeting by several families, we feel that the case managers add another layer of protection for the consumer. My son's case manager has always been our "go-to" person for answers to the ever-changing system. She continues to be that person and we value her and desire that she remain a crucial member of his team.

John, thanks for listening. I'm not giving up on wanting to see individuals having a say in this matter.

Paula Guzzo
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Nancy Swaim

Joined: 26 Oct 2005
Posts: 17

PostPosted: Thu Oct 27, 2005 4:52 am    Post subject: this forum Reply with quote

If 25% of people who get waiver services are adversely affected by these changes, then that is over 6000 individuals. Surely someone cares enough about these 6000 people to figure out what to do. These 6000 people are our fellow citizens. They are some one's son or daughter, brother or sister. We can't let these individuals remain faceless and voiceless. And we should not let just a few paid lobbyists shape the decisions that are hurting 6000 people!

An economist, and I'm not sure which one, said there are three kinds of lies:lies, darned lies and statistics. Too many of the changes are based on statistics that are distorted and cannot have been based on any scientific fact finding.

I did a random sample of 58 people with whom we work as case manager.
- we did 2.6 CCBs for this sample; not the 7 that is widely stated as fact.
- 100% of the people in this sample knew their case manager.
- 87% could identify at least one significant action that the case manager had taken that resolved a significant problem, from helping the person gain better staff to getting a used van to buying a computer...these last actions used no money from the State.
-Providers who were polled in a different survey responded at a 12% rate to our survey identifying problems solved by case managers with whom they worked and a high level of satisfaction with the roles our case managers play.

Case managers with whom I work have not been at the table when 'fixes' have been discussed and decisions made. Family members and people with disabilities have not been at the table when fixes have been discussed and decisions made. One or two case managers and one or two paid advocates are not representative of the numbers of thoughtful, informed, and visionary folks out here who could have advised about "fixes" that are less painful, more principled and with equal or greater levels of savings.

Another thought is that if all of the money paid to lobbying organizations who represent providers was used to provide direct services to people with disabilities then how many more people could be served on the waiver. Probably more than will be served by the savings derived from doing less paperwork. But this could just be a 'darned lie'; )

I know there is an absolute need to fix this awful system. I know that a few people have given this administration very bad advice based on very faulty information or questionable motives. We all want better quality with lower costs. We all want the people with disabilities who are not being served, living with elderly parents or warehoused in institutions to have the benefits of waivered services. I am hopeful the will to do the right thing will rise up within the adminstration and that people of wisdom and compassion will be heard.

Nancy Swaim
Case Manager
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Joined: 24 Oct 2005
Posts: 3

PostPosted: Thu Oct 27, 2005 10:13 am    Post subject: This forum Reply with quote

Thanks to those who have established this forum. My hope is that we can provide information about the impact of this change and clarify the reduction in service that it truly represents for a large number of people. As a provider of service I can testify that 55 of the 83 people we support (65%) funded under the Waivers targeted are being negatively impacted. I am not sure where the 25% figure comes from as information I have from other providers contradicts that in a big way.

This change is particularly difficult for families who have children still living at home. These families have been thoughtful over the past few years in how they use services and as a result are seeing cuts just because they utilized only when needed. As things change in their son or daughter's life how will that be considered? Why did not current needs drive the rate calculation? We are appealing those cuts but have received little information about how those appeals will be handled and whether we can continue to support people at current levels depends greatly on the resources the agency can provide. As an organization where 70% of our revenues come from Medicaid Waiver services, those resources are extremely limited. The timeline for the change has made it even more difficult. How can the agency find "efficiencies" to offset these reductions in less than 30 days.

I too am very concerned that people with disabilities and families had little input into the decision making around this issue. I am thankful that this forum is available and have recommended participation to all of those we support. My hope is that their voice will be heard.
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Joined: 14 Nov 2005
Posts: 10

PostPosted: Mon Nov 14, 2005 11:37 pm    Post subject: Reply with quote

Hi I'm Donna ROberts I work with Paula. I'm up

I am really interested in how I can help too.
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Joined: 16 Nov 2005
Posts: 4
Location: Winslow, IN

PostPosted: Wed Nov 16, 2005 4:00 pm    Post subject: Reply with quote

I want to start out by saying that I agree with the postings here on how these changes have affected the individuals that we serve. I have been in the field of services for 11 long years.

On my very first day of employment I was told: "each person with Developmental Disability is two steps from being were we are; but we are only one step from being where they are". How true and powerful that statement is! Our last wonderful Governor found out how true that was. He made cuts that hurt our clients, and then in one instant found himself in the same position that they are! Now how quickly do you think that he received services? And we continue to pay his widow for his services as well!

I would just like to clarify that most independent case managers in my area (Evansville) are taking extra clients, and not many have quit the field. Myself, I haven't taken on any new clients nor have I been approached, I am just rolling with the punches for now! I am not a member of ICPCM by choice, I am a member of SIICMA and I know that the State personnel have only agreed to meet with us on two different occasions. So I believe that these changes were made only because the "head honchos" were going to lose their jobs, and they don't care if it hurts our DD population or the poor!

Yes our system is "broken" (as Mitch Roob stated), it needs to be fixed! Let's start with taxing the rich in the same manner as the poor, discontinuing income of government officials when they have retired or been elected out! How much money do you think that would generate? Millions I assure you!

My prayers are with the families and people that these changes have affected!

Shonna Cofer,
Denise Medcalf...Visions Unlimited
Waiver Case Manager
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