Re: RESPONSE TO DOESN'T ANYONE CARE IF THEIR FUNDING IS CUT?????

[Guest guest]

I didn't find your email offensive at all. I actually found it motivating. I will fax the forms on Tuesday. The form is very simple and will take about 1 minute to fill out. The hardest part of the form is getting your child's medicaid # which I have not memorized yet. So I have to go get his card from my desk drawer. . EASY!We are all tired but this is so important for our kids. Even the ones who do not receive benefits yet.Thank you Ven for all you do for us.-Karin

I received an email in response to my email asking "Doesn't anyone care if their funding is cut??" and the recipient was offended by my harsh tone. I feel I must send this out to everyone, just in case someone else feels the same way and has not responded because they are upset by it.

I am sorry if I offended anyone and I know that the email may have been harsh.I am well aware of how tired parents are being one that has a 28 year old daughter with severe epilepsy and autism. I have been fighting and advocating for over 25 years and I am just as tired, depressed, overworked, overwhelmed as the next parent. I am also sick of begging as well. When I send out multiple "kind" emails and only receive 4 replies from the entire state, my last resort was to be shocking and harsh. My own wife said I shouldn't have sent out the email I did. Honestly, I have tried everything to motivate parents and families and while you may all be tired, if we don't get everyone to raise the roof on this issue, then we will continue to get bashed and cut and treated as we have been.

Please tell me how we can have 30,000 + receiving Med Waiver services and only 4 people reply? Please explain to me why nobody seems to be outraged by the continual cuts and comments like "Even if you do Gods work, you have to live within your means" from Sen. Negron. Every newspaper or online news service has been using that quote for the last 8 months. Senator Negron would not be making comments like that if he looked at the history of the legislature's handling of APD. If he looked at the "whole picture" instead of taking little bits of information and using it to manipulate others into thinking that we all get too much funding for our loved ones. I am well aware that Senator Negron put additional funds in the APD budget this session and we thank him for that. Some to cover the shortfall and some to cover projected shortfalls for next year. However, what you don't hear about is that the APD budget 4 years ago was almost $1 billion dollars and the legislature cut it down to $810 million, this while serving 5,000 more individuals. That is almost a $200 million dollar cut. He should not be of the opinion that people like my daughter can be self-sufficient and hold a job. There may be many of our children that can hold a job, but many will never be able to. So, even with Senator Negron's generosity, we are still down $125 million from 2007. If we don't let him and all the other legislators deciding "our loved ones fate" know that the constant dwindling of our funding is not only unacceptable, but unconscionable when they are giving people sales tax holidays to save $4.50 on a $75.00 pair of Nike running shoes that they really didn't need, nor is it helping people that are in poverty or giving tax breaks to Disney and NASCAR, but it does make the legislature look good on election day. It makes me sick to my stomach.

If I upset some parents, I am sorry. However, I am not going to apologize for trying to get people to realize that we need to come together and let the Governor, the legislature, APD, DCF, DOE and all the other agencies that serve our children and adults with disabilities that we are not going to continue to allow the dismantling of services, the inhumane treatment of our loved ones and our most vulnerable in our society anymore.

I am tired of begging people to do what is necessary to save what we have, even though it may not be wonderful, it is better than the alternative of 25% - 49% additional cuts to services with the wonderful iBudget.

Regards,Ven Sequenzia, Jr.

PresidentAutism Society of AmericaState of Florida Chapter

THIS IS AN URGENT MESSAGE FOR ALL FLORIDA FAMILIES WHO ARE ON MED WAIVER. PLEASE READ THE EMAIL BELOW AND TAKE ACTION!

To All Parents, Guardians and Advocates of Individuals Receiving Med Waiver Funding,

I sent the email below out two weeks ago and again last week and only received 4 responses. I need anyone who has a child or adult receiving Med Waiver funding to read this email and respond accordingly.

Can I assume that everyone who has a child or adult receiving Med Waiver funding through the Agency for Persons with Disabilities (APD) doesn't care if their funding is cut??? My God people, are you all that unconcerned about the funds that you receive for your child?

If you have sent me your information already, thank you.

If you have sent your request in and have not received a reply, please let me know when you sent it in and how you sent it.

If you have sent your request, received a reply and have not provided me with the information, please do so now.

If you have not sent in your request read on.

I am sorry, but if you cannot even take 5 minutes to print out the Public Request form from our web site and email, fax or mail it to APD then don't be surprised if your funding is cut 20%, 30% 40% or more.

Click on this link: http://autismfl.com/images/Public_records_request_Medwaiver.pdf

or go to www.autismfl.com and print out the PDF at the bottom of the home page, fill it out and send it in. When you receive your reply, please forward it to me ASAP. We need this information to help eliminate the cuts, but we cannot help you if you don't help us.

Sincerely Disappointed,

Ven Sequenzia

President

Autism Society of America

State of Florida Chapter

ven@...

---------- Forwarded message ----------

Date: Thu, Feb 9, 2012 at 11:32 AMSubject: IF YOU WANT TO KEEP YOUR MED WAIVER SERVICES - PLEASE REPLYTo: ven@...Anyone who is receiving the Medwaiver for their child or adult with a developmental disability needs to respond to this email, if you have been notified that your funding will be cut or you sent in a public records request to APD asking how the iBudget will affect you.

If you have sent in the public records request that I sent out a few weeks ago or you picked it up at the Autism Society of Florida table at the CARD Conference, I need you to let me know what the reply was from APD. A couple of you have sent me what you received back, but I need more data. APD is implementing the iBudget in areas 1 and 2 (Panhandle area) and it is my understanding that everyone is receiving a cut in funding, which will result in a cut in services. This is happening even though APD stated that they would not be cutting services to our loved ones.

If we don't act now, we will all have to live with what APD and Senate bill 1516 will do to our services. Please don't sit back and do nothing. If you don't want to lose services, then you need to respond to this email.

Regards, Ven Sequenzia, Jr.

President

Autism Society of America

State of Florida Chapter

[Guest guest]

I was not offended by the tone of the email . . . Sometimes we all need a kick in the butt to get us motivated! 

 

My daughter is not on the med waiver list.  When I first learned about my daughter's diagnosis and the funding mechanism in the state of Florida, I was appalled.  I felt it was insulting that the State actually expects people to put their child on a list with almost 20,000 people who are waiting for services in the hope that " someday " she would recieve the assistance she needs to lead the most productive life she can.  Based on these email discussions, I am going to work on getting her on the list next week... Not because I believe she will ever receive services but because I think she needs to be counted.

 

I am curious, does anyone know how much money it would take to provide quality services to all of the people currently receiving services and all of those on the waiting list?  Because its not just children and adults with autism, its all people in the state with disabilities who need services.   What is the message that all of us (parents, grandparents, friends, relatives, providers, educators) need to be sending to our elected officials?  It seems that there is a focus on the near term and avoiding funding cuts within the current program and that is very important.  But, what is the message we need to be sending for a long-term solution to ensure that services are provided to our children?  Is there a report from the state or the autism society or another organization detailing a plan for the future?  I apologize if this information is out there, but I have never seen it.  I would like to imagine that, if all of us got together to send the same message, as a voting block, we would be able to get some attention from our elected officials.  Is there one organization that takes all of those eligible for services under APD and brings our voices together to get the attention of those in Tallahassee?  Again, I apologize if this information is readily available, but I have not seen it.

 

What is the status of the class action lawsuit that was filed last year?  Should there be a bigger class action lawsuit with all of the people in the state who are in need of services?  This is a violation of our children's civil rights.  If we cannot trust our legislators to do the right thing, perhaps the courts will be more willing to assist our children.

 

Just like many of you, I am mentally and physically exhausted.  But, I suddenly feel outraged as well...so, thankyou Ven for the email... It woke me up to the fact that I cannot just sit back and wait for someone else to solve the problem.  I have to be more active to helping my daughter and all of our children receive the services they deserve.

--

Have a lovely day!

 

Jean