How do you define disability?

A few things coming across my desk recently have really made me think more about the definition of disability. The first item was an extensive segment on NPR that described a significant increase in the numbers of people who are on government disability programs (SSDI and SSI).  The author's point is that disability programs have become the "new" welfare for the unemployed and it's too easy to get on disability. The piece has been widely criticized by disability advocates for being unfair and missing the point that the increase is due largely to demographic changes (an aging workforce) and that it's actually very difficult to get disability benefits. A quick google search will point you to many of these criticisms, though this long one gave me much to think about. Whether the claims made in the NPR story are true or not, you can't deny that more people are on disability programs and we need to figure out a sustainable way to pay for them - and figure out what we can do to increase the self-sufficiency of people with disabilities (more on that below).

Then I saw an announcement about a speaker from the Disability History Museum, an online effort to educate the public about the disability movement over the years. It has some great exhibits and helped me understand that "disability" has so much attachment to paid work, it's no surprise that articles like the NPR segment and this one on disabled firefighters keep popping up.

In particular, both these things made me think about the diverse groups of people within the "disability community" - if there is such a thing. For example, someone with an MS-related disability likely acquired it during their adult life. They are aware of what it is like to not have a disability and so to them, a disabled life is a different life. For someone who has been disabled since birth, disabled life is not different, it just is. So it gives me a better understanding of why disability groups have traditionally played in different circles in Olympia - a problem I'm trying to correct by the way. Most excitingly, I'm working to bring disability advocates of all stripes together to support a major initiative to increase employment for people with disabilities.

This debate of what it really means to have a disability is also front and center to the disabled parking discussion that is going through the Legislature and the City of Seattle. Many assert that there is systemic abuse of disabled parking placards by people who don't really need them or have obtained them illegally. With too many placards in circulation, the City of Seattle asserts that people without disabilities are being left without any place to park. I know many people with MS have been accused (either silently or otherwise) of not being disabled enough, and shouldn't use these placards. But what are the real problems in the system? Are too many people disabled? (I know too many people live with MS in Seattle, but I don't have an easy way to fix that.) Do we make it too easy to have the government say you are disabled? I don't think many people with MS who have applied for disability would say that.

How do you think we should write laws that help people with disabilities (including unpredictable and sometimes temporary symptoms like those associated with MS) while not giving everyone a free pass? 

Should health insurance plans be required to cover MS drugs?

Insurers in Washington are looking for ways to cut the cost of their individual plans. One option is to remove brand name drug coverage. Premera did that in its Lifewise catastrophic plan a few years ago, and when Regence and Group Health tried to counter by doing the same, the Insurance Commissioner's office stepped in to say that access to at least some brand name drugs must be available for those that need them.

To learn more about this trend, check out this recent article that cites the high cost of MS drugs as a reason why people need insurance coverage.

The Supreme Court got it right this time!

Thank you Supreme Court! The Affordable Care Act is safe.

I don't know about you, but this morning was very emotional for me. I was somewhat prepared for the terrible news that the mandate was overturned (and the law gutted), but the shock and excitement that (almost) the entire law was upheld completely overwhelmed me. As activists we have supported Congress and our President in their effort to enact this monumental bill and desperately hoped for this outcome.

Although the States may opt out of the Medicaid requirement, Governor Gregoire has committed to continuing the process to help insure 500,000 Washingtonians through the expanded Medicaid   program. Jay Inslee has been an outspoken supporter of this law. Even Attorney General McKenna (who joined the lawsuit that got us to this point) expressed support for most aspects of the law in an interview with Robert Mak (KING5) today - although his support of the Medicaid expansion is questionable "....as long as the State can afford it". Governor Gregoire said that for the first few years, the federal government pays 100% of the Medicaid expansion, then 95%, then 90% going forward. I think we can come up with 10% of the cost of insuring an additional 500,000 citizens in our state.

Congratulations to our entire community!

Enjoy what this day means...

Cheers - Holly Hawker

Celebrate The Affordable Care Act!

As we enjoy the anniversary of the Affordable Care Act and everything it is doing for all Americans, we need to keep in mind that the Law is being challenged from all directions, and most importantly – in the Supreme Court!  As this hallowed body deliberates the legality of various components of the bill, the rest of us stand to lose so much.

It is my naïve, hopeful, and somewhat educated belief that the Affordable Care Act will be upheld by the Supreme Court. However, that will not protect the Law from members of Congress and State government (including Washington’s own Attorney General and candidate for Governor) who want to see the accomplishments of the Affordable Care Act repealed.

 Among all of the wonderful aspects of this law, the special significance to the MS community is the protection of people with pre-existing conditions, which will fully take effect in 2014. This tenant of the Affordable Care Act alone makes this legislation the most significant legislation for people with chronic disease that we have ever experienced.

So next time someone criticizes “Obamacare”, remind yourself and them, what this law means to the MS Community. We DO Care!

 Remember – It’s Time for Action! Washington

Cheers – Holly