Wait 'Til You All Hear This

I'm the parent of an 11 year old disabled son, Andrew, who is 100% total care - non-verbal, g-tube fed, wheelchair - the whole deal. Andy is a lovable little guy, and we wouldn't trade him for the world - he looks like Harry Potter minus the glasses. Anyway, we switched apartments a little over a month ago, and just right before ( it was an emergency apartment change due to some leaks, etc... that was not at all a planned move ) the move took place, it was time for Andy's M.A. 6 month renewal. Well, apparently some mail didn't get forwarded to us due to some forwarding mishap, and when I went to order Andy's monthly medical supplies and prescriptions, which only total about 7K per month, he was denied - sorry, but I just don't have 7K on hand. I called up M.A. and they said the qualifying guidelines had been lowered and that we earn too much for Andy to be on M.A. and that he does not qualify to be on it anymore! Funny, but our phone number didn't change, and nobody bothered to call and try to notify me that way. Well, Andy does qualify for MN Tefra, which involves a Parental Fee, which is just fine with us, but to just cut a disabled child off of his medical insurance makes me angry like I cannot even begin to express!!! We are in the process now of waiting 1-2 months to have a SMIRT review to get Andy on Tefra. And, it only gets better. Because they were never able to staff us with a PCA, I have done the job under a hardship waiver for the last 3 years and work as Andy's Personal Care Attendant part-time - because of all this, they have also frozen my job. I figured a budget cut would be coming mid-January for sure, as they have already cut our budget 12K in the last 3 years, but I didn't think I would be getting this early Xmas present this soon after the election. Gosh, nothing surprises me anymore with Pawlenty and George W. I had to get family friend and State Rep, Joe Atkins involved in the matter, and I can tell you, Joe is a sweetheart! He is trying to expedite the process for us, and I will keep everyone posted. Friday, I managed to talk to Andy's pharmacy and medical supplier, and both have agreed to help us out until this gets worked out on an as needed basis and will bill retro. But as for my job, it's on the fence.

compassion and conservatism. nice.

God Bless you and Andrew too! Please know that there are people out here who DO care, and we will still keep working for change, because it has to come!

This kind of stuff burns me to no end. Keeping my fingers for your job.

We have the best health care system in the world!

heart goes out to you, as I know what a difference meds can make in ones life and what it is like to have to do without them because of paperwork screwups. I'm an adult and it messed with me, but if it were about my child, I wonder if I wouldn't either lose my mind, or be arrested for disorderly conduct, or worse.

All my best wishes for you!

Stepheni

I hope you try to publicize what is going on. You are one person who is articulate and a terrific advocate for your son. There are probably many who are less able suffering the same knod of problems.
Wishing you the best.

Protection and Advocacy, Inc.

http://www.icdri.org/legal/MinnesotaPAD.htm

In CA, an appeal usually halts cuts in services and you may have an option to get aid paid pending the court decision.

george's economic mismanagement is set on sabotaging the paid parent caregivers in order to fund (at 100x the cost) the corporate nursing homes which provide substandard (and often lethal) care.

Compassionate conservatism at it's best.

I am glad your pharmacy and medical supplier are helping. I can't believe they would cut you off without phoning first. Have they no f*&^%%$ compassion? It isn't like a bunion; your son isn't going to get better--AND THEY KNOW THAT.

I'm sorry this has happened to you in the shrublet's America. Damn, some days I hate people who can't think for themselves--from checkout clerks to government jerks.

Give your son a hug for me. I wish there was more I could do besides lend moral support in cyberspace. Please do keep us posted on what your Rep is doing.

you have to (pay) earn 84,000 after taxes just to pay for medicine and supplies, nevermind ongoing testing and treatment for any ad hoc problems he might develop, because you earn too much.

Our system is designed to punish you for having health problems serious enough to put a child on disability - not only the health problem itself but insurmountable bills and endless financial hardship.

It needs to change. It's only going to get worse as the boomer population ages, and as our drafted children come back from our various wars in various states of disability.

...but let Mark Dayton know, too. That's awesome that Atkins is helping out. In the meantime, I'm sending you and your family good thoughts.

Ooops! Where's the compassion?
Keep up your fight and good luck. Somehow, I think you'll end up kicking a few asses!

I'm so sorry.
Isn't it amazing it's the weakest that they seem to come after first.
:grr:

they are the protection and advocacy agency for Minnesota. 612-332-1441 ( I think that's the number, otherwise just look up the Disability Law Center or Minneapolis Legal Aid.

they are the protection and advocacy agency for Minnesota. 612-332-1441 ( I think that's the number, otherwise just look up the Disability Law Center or Minneapolis Legal Aid.

Contact your local newspaper, if you're outside Minneapolis-St. Paul, or find a sympathetic reporter on the Strib or Pioneer Press.

Shame them into reversing themselves.

I have been so busy faxing info and gathering info, etc... on this issue with my son, but finally, last night, I received a call from the State Commissioner's Office saying that my son's M.A. was reinstated until the Tefra application processes and goes through!!! I had received a voice mail from Joe Atkins earlier in the morning wondering if things had been resolved yet. When I called Joe back, I had to leave a voice mail in return. At 5:30 PM, I got the call that Andy could start ordering what he needed. Just in time to save my job as well, as I had to fax in my time sheet today. Joe is the greatest, and I will always support him in his political endeavors. I hope he runs for Prez someday because he really, truly is a concerned and caring individual who worked darn hard to get my son's situation straightened out fast!!! Just thought you all should know. :)

He was my lawyer in a legal matter of mine!

So sorry about this BS you have to go through.

:hug:



This country's medical 'system' sucks skunk, big-time...