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Let's take action now!

 
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Much Concerned



Joined: 25 Nov 2005
Posts: 2

PostPosted: Sat Nov 26, 2005 11:35 pm    Post subject: Let's take action now! Reply with quote

Hello Folks,

I liked your interesting comments and ideas. My personal opinion is the following:

I feel that we need a parent group. This group can be advocates, guardians, parents, etc. Anyone can join this group, and I think we need to start it ASAP. I think we should meet monthly throughout the state of IN. We need to get members from all over the state. I think the monthly meetings should consist of educating everyone without becoming a b***** session. I think that when we get this going that we should work directly with the state government officials. If we get a huge membership going, power is in numbers and they are going to listen to us. The department heads were put in place to ensure that everyone receives the services they need, and also to have something to show for the money that is being spent. We want quality care and the services that the waivers first promised us. As we all know there is only so much money, so for everyone to receive services, everyone is going to have to do with less. I think the first thing on the agenda is getting money for the 12,000 that need services. I think the person that suggested the .01-.02 cent tax for soda pop, has an excellent idea. Also I think that the state has been getting the cart before the horse for a long time. The state could issue all 12,000 a waiver; the big problem is there is not enough providers available. The state and parents need to work together to get more providers certified. The state wants perfect paperwork, but perfect paperwork is not producing quality care. Our group would have the power to create our own report card for providers, case managers and healthcare companies. I am a firm believer that the customers (clients) would have the power to close down those undesirable companies making megabucks while providing less than quality care to our loved ones with disabilities. If we get this group started we would have the power to get quality care for the elderly and the disabled in the state of Indiana (i.e. when we go to a pizza parlor and we don't like the pizza, we don't go back again. If the pizza parlor doesnít have any customers theyíre not going to stay in business. We can do the same thing with the incompetent home healthcare and waiver providers.) Our state senators and representatives are more apt to listen to us as a group, or representatives from the group, rather than 3,000 individual letters or telephone calls. There is much wasted money being spent right now on deplorable care for many of our elderly and disabled. This isn't what it's all about. I think that we can accomplish much more by getting our group together and sitting down with the officials and working together to solve this huge problem. It is quite apparent that this is something that has never been done all of these years and we are running out of time. I fully understand why the governor has to cut back, but he doesn't mean for the money that goes to these providers to be spent on fancy cars and take away services from our loved ones. Iím not interested in hearing what other states do, my disabled loved one is right here in Indiana. If one Indiana department can get better service, better care, and better protection for our ducks and geese, then we certainly can do the same for our elderly and our disabled. When youíve got 12,000 individuals in need of services in IN, and then you have many that are getting substandard services, we certainly have to try a new way. I think that the only way we are going to fix this mess is if we all work together. The system knows that many elderly and disabled are without a caring family member. I think that there is enough of us to make a difference for all of the elderly and disabled in the state of IN. We could have a forum with all of these representatives and they will have to listen to us. I say letís go for it, we donít have time to waste anymore. I say itís time to quit talking about it and to take action. What do all of you think?

I would be more than happy to donate much time and miles to this cause.

Respectfully,
Much Concerned

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sanga61



Joined: 22 Oct 2005
Posts: 13

PostPosted: Wed Nov 30, 2005 10:09 am    Post subject: Let's take action now. Reply with quote

Dear Much Concerned,

The intent of waiverwatch was to give families and individuals who have a disability a way of connecting, communicating and keeping informed. Other avenues are needed, however. Some families are not connected to the internet and others are not savvy at using a bulletin board. I sometimes am not too savvy myself!

I know there are families across the state that agree with you, Much
Concerned. They are willing to commit time and effort to making the waiver service system better, cost less and serve others. The answers, however, are not being sought from the people who have the best ideas. This is how a parent group, that was state wide, would be helpful.

How can we organize this?

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"The voice of conscience is so delicate that it is easy to stifle it; but it is also so clear that it is impossible to mistake it Madame de Stael
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Much Concerned



Joined: 25 Nov 2005
Posts: 2

PostPosted: Thu Dec 01, 2005 9:49 pm    Post subject: Organizing Our Group Reply with quote

Dear sanga61,

Thank you for your support. Some of my ideas are as follows:

I know I can raise some monies to buy a 1/2 page of the Indianapolis Star. I would rather buy a full page of the Indianapolis Star. I would like to run my same letter on that same page of the Indianapolis Star that I ran here on the Waiver Watch site. Before I run this ad, I thought that we could break Indiana into several sections and then figure out where we could meet. After we get all of this set up ahead of time, then we would run the ad and list the time, date and location for each area. Or, I've even thought that we could rent an RV and travel IN like Governor Daniels has done. We could plan our route and our trips ahead of time and put that at the bottom of the full page ad so people know when and where we will be and what time and date. The Indianapolis Star is in every community in IN every day. The people in those small communities that need us may not receive the Indianapolis Star but someone in that community will tell that family about us because word gets around fast. When we start our monthly meetings, I think that we should charge, in the beginning, a $1.00 admission or a dozen homemade cookies. My philosophy is this: if they don't have a dollar, we'll pay their dollar to attend. The cookies that we receive we will sell those at these meetings and we may get $2 for that dozen. The money that we make at these meetings we will put in a bank account overseen by two people and guarded like a hawk. This money will be used to do the traveling to get the word out until we get totally organized. Once we start getting members joining we will have a form all prepared for them to fill out their name, etc. Many of us have access to copy machines and free paper and we will mail out these news letters once a month to these members. There will also be accounting in these news letters of our financial status. One of the very special things that I want to do -there are many older parents that are still caring for older disabled adult children that may not be able to make it to these meetings. I would like for us to be able to personally go to their homes and talk to them and meet them. At least to give them emotional support and hope. This is information that we can take back to our State Senators and Representatives. I am not a wealthy person, but I think we can get some financial support here and there. In my head, I'm still working out how to find locations in different parts of IN that we could hold meetings rent free. I think that once the word gets out that the Indianapolis Star will be following us and that will give us good advertisement. I think that there's some possible avenues with some of the local tv stations to get the word out. I think that in the beginning we will have some more expenses to get started with this, but once we get the groups throughout IN I don't think it's going to take very long. The way I'm going to look at it there are 12,000 people in need of services, even if each one only had one family member in their life, that would be 24,000 members before we ever add the rest of us to the list. Another thing is you take this 24,000+ and approach the State Senators and Representatives (let's face it the name of the game is politics) The way I see it this is not a Republican problem nor a Democrat problem, it's everyone's problem. But if we can make a difference in the state of IN with quality care for our disabled and our elderly, what a big boost that would be to the politicians. My game plan is to start this weekend. I'm going to start printing up a flyer and I'm going to start handing it out to families that I know that have the same needs as the rest of us. A petition with 24,000 signatures is sure to get some politian's attention to vote for a .01-.02 cent tax per bottle of soda. For the record, I don't even drink soda, but I would be willing to donate $5.00 a month to that pot which is equal to 250 bottles of soda a month.

What do you think sanga61? Do you have any suggestions?

I know in my heart, we can be successful at this- not because one person did everything, but because many did something.

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sanga61



Joined: 22 Oct 2005
Posts: 13

PostPosted: Fri Dec 02, 2005 8:38 am    Post subject: organizing our group Reply with quote

YES!!!

I know people with disabilities who will bake cookies to sell for such an effort. I know families across the State who will pay a $1 to raise awareness, educate themselves and others and plan actions to address our needs.

Post your flyer here, and we can copy and distribute. Post your flyer here and we can send to all others we know. Post your flyer here, praise the lord and pass the ammunition!

The supports for people with disabilities to be in the community is not a political issue. It is a reality that needs attention, understanding and solutions. Traveling around the State would be a welcome avenue for people who can't affort to pay for care for their family member and travel to far cities.

One thought, please do not let professionals co-opt the group. The rise of professionals in the local ARCs has dessimated personal and citizen advocacy for and with people who have a disability. While the educated professionals are invaluable, they do not need to be running organizations for families and people who have a disability.

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"The voice of conscience is so delicate that it is easy to stifle it; but it is also so clear that it is impossible to mistake it Madame de Stael
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