A failure in the system

11-26-13
Completely appalled
( feel free to share )

Yet another case of Government garbage......
I have never posted anything personal on here , but this is an outrage !
One year ago today Damon ( DJ ) was offered a separate waiver ( State funded ) to assist him in his needs and a variety of different therapies. This was a blessing at the time, we really thought that this would help him greatly, especially in the winter months. The new funding source ( waiver ) took a few months to get activated and up and running. There was little to no communication to us for the first few months. DJ’s doctors prescribed physical therapy equipment to help his stimulation and I set up an exercise room in the basement and it greatly helps during difficult times for him. I purchased this equipment and submitted receipts for reimbursement like the case worker asked. 6 MONTHS go by with a lot of false promises and problems, countless phone calls and emails, little to no communication to us at all for months at a time. After all this I am told that I will not be reimbursed any time soon , we are being told several stories here. Just think if we waited and did not purchase the equipment that DJ would have had to wait almost a year to get this ! Why was he offered this in the first place then, it is supposed to help him ! So we just chalked it up , he is benefiting from the equipment and after all , that’s all that matters anyway.
Now for the second chapter.....
In early October we submitted a script from his doctors for a track system for his side by side. We were encouraged to do so by many. This waiver is for any therapeutic equipment. ATV Therapy is in his IEP/ISP as his MAIN form of Therapy. Having this track system enables DJ to get out during the winter for therapy and as well the local snowmobile clubs have agreed and want us to groom their trails , this is a huge opportunity for DJ being that it gives the time outdoors and doing something constructive as per his ISP. We were told several times that all was a go and the check for this track system would be mailed directly to the vendor. I contacted the vendor and explained everything and they were great and very happy to help and gave a great price too.
For the last 5 or 6 weeks we were told all is good and to expect the tracks soon. The local snowmobile clubs were going to do an article about this and why it is so important to do this and why it is therapy for DJ. We havnt heard anything so I decided to call the provider handling this and I was told the State denied this claim and purchase because and I quote “ ATV tracks are akin to tires for a van. In addition, ATVs have the potential of being a significant health and safety hazard, which goes against a waiver’s requirements for operation. Please remember that, while the SELF waiver does offer participant direction, it is still a Medicaid waiver and first and foremost, must ensure health and safety. To that end, I would strongly suggest exploring other options for this individual and/or other potential funding resources.”

WHO gives this lady the right to tell me what is safe or not for my boy? This person has no idea of my son and what we do and why we do it. What other “ options “ do you suggest , because we have tried them all !?We have safely been doing this for 13 years ! They pay millions a year for therapeutic horseback lessons to thousands of kids on waivers, in my opinion horses are equally as potentially dangerous as ATV’s, and yes we own horses too......
What a load of crap ! DJ has had this so called waiver for a year now and has received NOTHING, now he suffers because of some person that has no idea what they are talking about and that’s on top of being lied too several times telling us all was good and be on the lookout for the tracks...yea right......
If this therapy that we do is so hazardous then why do ALL of his doctors and therapist encourage what we do then? It is in all of his plans and documentation and has been for 13 on going years now.
What makes me sick about this is that for 31 years of my life I have worked hard and paid my taxes both federal and state and knowing my hard dollars are going to a lot of people collecting disability and food stamps that don’t need it and are cheating the systems, it takes just about everything we can do financially to keep our boy riding and we have never complained about, in fact I am honored to bust my butt to ensure his quality of life and we don’t collect off the government for our needs, we work for those needs, .... but yet my boy is denied a VITAL piece of equipment that he needs to cope with his winter and daily life.
For the first time in my life I no longer want to pay taxes, I always believed, work hard, be nice , pay your taxes and all will be good, I don’t feel that way anymore. The system has failed , I see it in other people lives too, DJ is not the only one being pushed aside, many folks out there right now are going through there own devastations because the system has failed, well at least in Ohio it has in my opinion......
Thank you for reading.
God Bless
https://www.facebook.com/DJsATVAdventuresandAutism?ref=hl

UPDATE 12-9-13

As of today there has been no communication from any of his case workers or the contact at the State level that makes the decisions. I have left her countless voicemails and sent several emails with no response except her only response was 2 weeks in an email saying that she would call me last week, she has not even responded to any of our emails  or calls since then. I cannot believe the level of service our State is providing, seems no one cares whether or not DJ gets his therapy or not. My taxes go towards their salaries and I am appalled that I cannot even get a phone call back. I have to appeal this through their so called system and that will take months, by that time winter is over and my son has suffered. This is a complete outrage and is unacceptable by any measure. I will fight until the end for my son and will make sure as many people as possible here this story so that maybe others will not have to go through this. We are handing over millions of dollars to people that do not even legally live in our country and yet my son can’t even get a portion of his budget from this waiver. Unbelievable !!!