SSA SSDI requirments annoucement update and Disability

[randford]

SSA SSDI requirments annoucement update and Disability - CF LEGAL

For those of you who don't know, SSA had proposed changes in respiratory requirements back around 2012 that might make them more stringent. But at the 11th hour, CFF found out through CF Legal, got involved and offered testimony and letters from patients, families and physicians. The ruling has been delayed for well over a year and that's a very good thing. It is entirely possible that the regulations will remain as is so let's hope for the best.

Further, I've been schooled that as is the law reads, the SSA respiratory regulations are about as good as they're ever going to get. It's said that summertime would bring an announcement for proposed changes, if any. But the general consensus and hoped is that things stay as they are. So for those of you who are considering an application, you better get on with it and fast. Talk to Beth Sufian, attorney with the CF legal team. She is amazing and informative. She will really help answer your question and guide you, whether you are applying or not. She's there for other issues as well. DO NOT go it alone or hire some DUI lawyer, claiming to be a disability lawyer, who spends about two minutes on your case. You're wasting your time, otherwise. Talk to the CF Legal hotline. They fight specifically for you. http://www.cff.org/LivingWithCF/Assi...FLegalHotline/

Also...among other things recently, Beth Sufian is responsible for defending in the Arkansas Medicaid case. I'm my personal view, she's a hero by saving lives. She really makes a difference for us. In addition, she will be posting SSA updates on a CF blog soon and I will share!

http://cysticfibrosisnewstoday.com/...ettles-lawsuit-kalydeco-cystic-fibrosis-drug/

As for Disability...and as fanciful as the prospect, a disability declaration would literally be an act of God to achieve. The government has all but closed the door on the "compassionate allowance" prospect for just about all diseases unless there is very specific treatment and a clear and present time constraint for end of life. SSA did it for two other diseases, (ALS and kidney) and that was it. They were done because it opened the door for others. By default, the requirement focus is extremely narrow so given that CF patients have a variety of expression and treatments, it would be extremely difficult to achieve a disability declaration as a default for all CF patients. Beth Sufian and her team already been tried years ago...and as difficult and well intended as the fight was, they were unsuccessful. But we praise them for the efforts!

So the government won't give. That's expected. The bigger issue is the expense of medications. No offense to any pharmaceutical but it's hard for me to understand why any of the medication we take is so darned expensive and as a result, life-limiting. Yes, the meds are unique and CF-specific but $300,000/year? I dunno. No wonder the government chokes at the prospect of paying under Medicare/Medicaid. So just imagine how they feel about disability! Ultimately, it's unsustainable. So who do we blame, if there is actual blame? The government who is cost-conscious and don't want to pay or pharmaceuticals who don't want to lower costs? Hmmm... You be the judge!

 

[ladybird]

The bigger issue is the expense of medications. No offense to any pharmaceutical but it's hard for me to understand why any of the medication we take is so darned expensive and as a result, life-limiting. Yes, the meds are unique and CF-specific but $300,000/year? I dunno. No wonder the government chokes at the prospect of paying under Medicare/Medicaid. So just imagine how they feel about disability! Ultimately, it's unsustainable. So who do we blame, if there is actual blame? The government who is cost-conscious and don't want to pay or pharmaceuticals who don't want to lower costs? Hmmm... You be the judge!

The Social Security Disability System is not unsustainable. As the wealthiest nation in the world, we have the resources to fully fund it to improve the lives of all Americans. The same is true of our patchwork medical system. We have the resources to provide excellent medical care to all. What we need are some policy changes such as allowing medicare to negotiate drug prices (Yep - that was W's doing) and taxing the full amount of income for SS purposes, as well as ending corporations's free ride - most pay zero to little federal tax due to use of offshore holding companies that fictitiously "earn" all their money, even though all they have is a PO Box in some Caribbean nation, while using US infrastructure for free. With an increase in taxation, we could provide better disability benefits and lower the cost of healthcare.

 

[randford]

Ladybird, you are absolutely right. I couldn't agree more. At this moment, we're past the $18 trillion mark on debt. That certainly is unsustainable. I'm certainly not defending one side of the other. We all point to one specific group or a single politician to blame, yet it takes congress to pass laws along with SCOTUS and POTUS to uphold them. But our system is fundamentally flawed and corrupt. Typically large PAC groups on either side pick their horse for the race, with millions of dollars of support. We are simple-minded chattel that hold our collective noses and vote to make it legal. That vote buys access for both democrats and republicans to feed at the tax-payer tough. Money buys access. That's our system. And when each member of congress has on average, 22 lobbyists who stalk them daily, your representative isn't always considering their electorate. They are considering the needs of those who subsidized their election bids. So the thought that your congressman is fighting for you goes out the window, inner beltway in Washington. Few politicians do anything for common folks but they certainly make it look that way. It's a fine line. They certainly make promises and we have short term memories every election cycle, while the talking pundits and political hacks in the media divide and confuse us on lesser important, lightening rod issue for the sake of ratings and personal gain.

Billions of dollars are squandered each year, though pork barrel politics. Bills with earmarks of pork. Billions wasted overseas to placate our enemies. Billions are wasted for people who enter this country illegally. Yet, we do little for our on people. So yes, we can blame "W" or perhaps republicans for allowing Medicare to negotiate drug prices and we can blame Obama or democrats for the pros and cons of ACA. No doubt there are winners and losers.

But who do you blame when we now have three generic pharmaceutical companies, instead of eight, causing prices to spike? Who do you blame for Medicare being corrupted by overcharging and fraud? Who do you blame when the there are no boundaries for hospitals and other medical services to charge basically whatever they want with no government oversight, all under the guides of ACA? (That was on 60 minutes, by the way.) Who do we blame? Bush? Obama? Republicans? Democrats? Big business? Lobbyists? Blame the system. And you can trust that we won't see a reset until there is a wholesale collapse of the economy. Let's hope not. But with $18 trillion looming, while we are speeding into a $22 trillion wall or tipping point at warp speed. The future doesn't look bright. We are headed toward the cliff while the federal reserve keeps pumping money by QE (Quantitative Easing). That is hopelessly unsustainable. No matter. They'll keep rolling out new politicians and we'll keep blinding voting, hoping for something that is essentially hopeless. Unfortunately in the end, the system as it is now, is hopelessly unsustainable.

Social Security is sustainable and could be fully funded but is full of IOUs. But the government "borrows" and redistributes that money like a shell game. The money is there and should be fully funded. But where there is a slush fund, there is corruption. Now the ACA is the mother of all slush funds.

But I digress... ;-)