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Power to the People!

 
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Nancy Swaim



Joined: 26 Oct 2005
Posts: 17

PostPosted: Fri Apr 28, 2006 7:08 am    Post subject: Power to the People! Reply with quote

RE: Rally in Indy

I agree that families and people who have a disability have no voice in the decision-making process. They have not had a significant voice for several years. The observation that INARF is a very loud voice in decision-making is also true. We have to recognize, however, that INARF is just doing what they were established to do, to be a lobbying arm for Rehab Facilities. (INARF – Indiana Association of Rehabilitation Facilities)

The purpose of the Rally, if it occurs, needs to be to give a voice to people with disabilities, not to support case management. The case management system is just as broken as is the service provision system. Neither service providers nor case managers have done an adequate job of meeting the needs of consumers or of policing themselves to assure that the tax payer is getting an adequate return on their investment into the lives of people with disabilities.

Please, consumers and family members, use this site to discuss what you want from your case manager. What do you want from your service provider. Perhaps the moderator of Waiver Watch could set up a “topic” for these discussions.

Based on the ideas from families and consumers, a list of the “top ten things I would like from my case managers” and the “top ten things I would like from my service provider” could be developed. From this tiny beginning, maybe you all could have a voice.
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Gina



Joined: 26 Apr 2006
Posts: 3

PostPosted: Fri Apr 28, 2006 2:11 pm    Post subject: Reply with quote

I agree that we will have a more credible footing if we concentrate on larger issues than just case management. It will be easy to dismiss those in attendance at the rally if the government sees a group of people just wanting to save their own jobs.
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cjhelser



Joined: 24 Apr 2006
Posts: 28

PostPosted: Sun Apr 30, 2006 7:22 pm    Post subject: What are You Talking About? Reply with quote

To Nancy Swaim and Gina, if you read the topic per Rally at the State House, it is for families & consumers......not just a bunch of case managers fighting for their jobs! And if is was, that's a good thing. Nancy, as an owner of a large CM company, why are you not fighting? And why are you protecting INARF? INARF hasn't hired a lobbyist in years and they have not had their attorney involved for months. If CMs do not fight for their jobs......then consumers lose choice. Families are upset and have a right to be and if CMs can lead/facilitate a campaign, this is good! And if CM and other waiver services suck so much, then why Nancy did you continue to run a large CM company.....you should have just shut down if your services were so poor. Didn't you do customer satisfaction surveys as the Indiana rules called for? My company wanted to lead a forum where families, consumers and interested parties could really voice their concerns vs just listening to the crap coming from ARC, INARF and the Case Management ASSocation. It makes me puck when people just lay down and roll over.......take the fight right to the source and lead consumers & families to that ability. You damn right I don't want to save my company.....and our great services to consumers.

CJ Helser, CEO
Ascend, Inc.
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alwaysadvocating



Joined: 09 Dec 2005
Posts: 14

PostPosted: Sun Apr 30, 2006 11:28 pm    Post subject: It's All About Choices Being Lost Reply with quote

I agree with CJ, it is all about consumer choices being lost. Not too long ago the state was forcing people to leave their homes and even move great distances to live with strangers, and all this was in the name of saving money. People with disabilities and the people who love them and advocate for them have been treated in less than human ways by this administration, and yet many people continue to discuss what we should and should not discuss at a rally?? And then there are the people who stick their heads in the sand and think it will go away or get better. These choices have dwindled away steadily for a couple years now...but a rally should include all the things that are being done to take those choices aways currently. This includes: 1)freezing services through the rate changes of 11/01/2005 (no longer person-centered); 2)holding off consumer and parental appeals on these rates and service cut backs for months and months; 3)not increasing rates even for emergencies; and now, 4)consolidation of case management and assigning case managers to people. It does not matter which of these issues are discussed or presented at the rally for they are all four detrimental to these peoples' choices, and if allowed to be brushed under the rug, we are just licensing the state and FSSA to take even more choices away in the coming months. Also that is the beauty of having a rally in America--we can all discuss any issue that is near and dear to our hearts.
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alwaysadvocating
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rkf64



Joined: 12 Apr 2006
Posts: 10

PostPosted: Mon May 01, 2006 7:57 am    Post subject: Reply with quote

Well...reads as if some people are getting really ticked off. I am just plugging along taking things when and if they come my way. I am more concerned with consumers who appealled the daily rate and the state just sent the families a letter stating "your appeal was denied". Didn't even get a voice, didn't even get a chance to present their case/cry, didn't even get to communicate with anyone about "why"....
Health and safety-When we have a consumer or several die because of our states inadequate thinking then change will occur. Will it be change for the better? Will the CM be sued by the state in a court of law for not protecting his/her consumer? Will the state be held accountable?
If providers can't get the rate to do business then one can't expect anyone to serve someone for free. Why can't we get "free" RX? Free Medical care? Free Gas?
I am not sure to what extent can or can't be done as there just isn't anyone to "go too" as it appears. You can't get CAP to respond, you can't get anyone at DDRS to respond. So...what is next? As to INARF...the only CM entity that is a member of INARF is Spectrum. So, unless your a member of INARF why would they do anything for the CM entity? Is that wrong? No, it appears that it is business and since they represent the rehabilitation facilities they fight for them and their funding.
There are many changes taking place not only with Waiver but with VR, First Steps, etc.....
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BGraves



Joined: 09 Apr 2006
Posts: 20

PostPosted: Mon May 01, 2006 8:21 am    Post subject: Reply with quote

Nancy, I couldn't disagree more. Sure, I want to keep my job as a case manager, but do you think I do this for the money, for the glory, for the recognition? Maybe you do, but not me. I do this job because I think it’s important, I enjoy the families/consumers I work for, and I think I am good at it. I am sure you have been doing this a lot longer then I have so I’m wondering if this system is so broken and case managers have not done an adequate job, then why have you remained? Have you tried to fix it? Here is a chance to try. There will be a rally. Many many families are already signing up for it and I hope you are giving the families and consumers you serve a chance to participate. If not, then I guess I understand where you get "case managers have not done an adequate job of meeting the needs of consumers”. Maybe you don't realize because you have been doing this for some time, but the only way good case managers don't do an adequate job is the limits put on them by the state. I am fighting not just for my job, but for my families and consumers as well. You ask about 10 things families and consumers want from case managers and I’m guessing the number one thing is to fight and advocate for them, their services, and their rights. Fight.....thats the key word here.

As for the rally, it will happen and it will be about the Waiver program as a whole. The whole program has and continues to be devastated. If we don’t stand up together now, then there won't be a program.

_________________
Choice is the basic building block of our freedom; lets not ever let that be taken away or limited from those who cannot speak for themselves.
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rkf64



Joined: 12 Apr 2006
Posts: 10

PostPosted: Mon May 01, 2006 10:26 am    Post subject: Reply with quote

RALLY
BE PROACTIVE if you want anyone to listen to the concerns of the consumer/family and the waiver program as a whole.

_________________
It appears the $15M is to run the businees NOT for services that dollar amount is outside of this as it appears.
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Nancy Swaim



Joined: 26 Oct 2005
Posts: 17

PostPosted: Mon May 01, 2006 3:24 pm    Post subject: Reply with quote

The purpose of a rally could be about giving families and consumers a means of speaking powerfully and clearly about the issues that matter to them. Keeping a case manager whom they trust is one item. Always advocating mentioned 3 other items that are equally important.

Families and consumers may have additional points. Another issue is the way that people with a disability who live at home with their families are consistently short-changed. Many providers consistently under-served these people. So family members lost their jobs, or lost benefits, or lost their car, or ran up debt, or got sick because they couldn’t get reliable people to come into their home. Then the annual plan came along, based on use of hours, and these folks got very low rates regardless of the needs of the person because the providers never met the need. Now their appeals are being denied without ever being heard.

There are other points that families and consumers want to bring up.

When there is a rally, wouldn’t it be cool if a consumer, looking straight at the camera, spoke to Mr. Roob respectfully about the needs of people who have a disability? Wouldn’t it be powerful if he or she read off a list of issues and requests, and had copies for the media? What if this person were flanked by hundreds of other consumers and family members who were well versed in the issues and if they had recommendations that would meet some of the needs of the State as well as the needs of consumers in Indiana?

The point of my original post is that consumers and families need to figure out what is most important to them, in their own words. They need to be prepared ahead of time to respond to questions or comments from the State and from the Media. A rally is a great idea, but it could be a one-time eruption or it could be the beginning of a much needed diaglogue between consumers and the people who control their lives, namely the funders and the rule-makers.

Ghandi said “You must be the change you wish to see in the world”. The change that is most important, I think, is that consumers and families are heard openly and honestly. Everyone who has posted here, or browsed here, has an opportunity to collaborate in this effort and open the door to better services.
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