Choices?

Last week we met with the social worker/consultant and a lawyer to discuss the possible solutions for managing the costs of meeting Keith's healthcare needs going forward. Today we got the news in black and white. Even with all the positive elements in our favor, the long-term outlook is grim to say the least.

Here's the breakdown of "choices" available to us:

1. In order to shorten the time necessary to qualify to be evaluated for eligibility in the Community Based Alternatives program, Keith enters a hursing home/institution for a minimum of 4 months (more likely 6 months). Given the near-death experiences and deterioriation of health he experienced in the last rehabilitation center, this is not an acceptable option.
2. Apply for the Community Care for Aged and Disabled program. To do this, Keith is required to reduce countable assets to $6000. This is accomplished by either moving existing assets to a trust administered by a parent or transferring to another trusted individual. If the trust is created, it must have a "Medicaid payback" provision which means that once Keith passes away, all monies received from the government must be paid back from the trust. The purpose of the trust is that Keith would not have personal access to the funds.
3. The real kicker is that to qualify for any support at all, Keith and I can have a combined gross income no greater than $4044/month. If we exceed that number, then all support is stopped and have to wait 6 months to reapply for support.
4. Oh, and we could always get divorced. Apparently the institutions that actively encourage you to get married, use that against you when it comes to seeking support.

In truth, none of these choices are palatable. No matter which way you look at it, we only get the minimal support offered by public entities if we agree to impoverish ourselves and give up any control over our lives. Not only is Keith put in double jeopardy by compounding his physical disability with financial constraints, but I, as his wife, am equally bound by these limits. By these standards, we are both discouraged from being productive. Hard work and the commensurate financial rewards are punished by the system which is counter-productive at the very least.

Ultimately, I think our best bet is to shake ourselves free of the financial shackles that are offered by the governmental monies. By virtue of our creativity, age, networking skills, and ability to communicate our story, we are uniquely positioned to develop a financially successful alternative to the "choices". Naturally, we'll share the solution with the world!

Change for People with Disabilities: Time to Email Obama!

For the first time ever, the disabled Americans were noted in a president-elect's acceptance speech when President-Elect Barack Obama spoke the following words:

“It is the answer spoken by young and old, rich and poor, Democrat and Republican, black, white, Latino, Asian, Native American, gay, straight, DISABLED and not disabled — Americans who sent a message to the world that we have never been a collection of Red States and Blue States: we are, and always will be, the United States of America.”

–President-Elect Barack Obama
Acceptance speech, November 4, 2008; (emphasis added)

The following was written by Andrea Shettle. It is a call to action to hold President Obama to his word to create opportunities for persons with disabilities to live more independent lives.

On November 4, 2008, millions of people with disabilities across the United States and around the world joined our non-disabled peers in watching the United States election results. Obama supporters cheered or wept to learn that the next US president would be Obama. Then we cheered or wept again when Obama mentioned people with disabilities in his acceptance speech. History was made–not only for America, not only for Black people, not only for Kenya and all of Africa, not only for Indigenous peoples, but also for people with disabilities.

But we cannot afford to allow the moment to end here. Whether we supported Obama, McCain, or another candidate, we all know there is far too much work ahead before we can say, “Yes, we have made real change for people with disabilities.”

It is time for people with disabilities, our loved ones, our neighbors, and colleagues to join together, across ideological divides, to reach out to Obama. We should all send an email to Kareem Dale, Obama’s National Disability Vote Director (at kdale@barackobama.com), WITH COPIES TO Anne Hayes, a volunteer on the Obama Disability Policy Committee (at ahayesku@hotmail.com).

First, we should thank Obama — and also Kareem Dale — for mentioning people with disabilities in Obama’s acceptance speech on November 4. Ensure that they understand how much it matters simply for us to be included. How did you feel when Obama mentioned us? Share your story.

Second, we should tell Obama and Kareem Dale that we are aware of Obama’s disability platform. He promised to increase educational opportunities; end discrimination; increase employment opportunities; and support independent, community-based living for Americans with disabilities. And he promised to sign the Convention on the Rights of Persons with Disabilities (CRPD), the first international, legally-binding human rights treaty for people with disabilities. Tell Obama and Kareem Dale that we are ready to call Obama to account if he fails us. But more importantly, we are ready to work with him for change for people with disabilities.

It is important to send your disability-related emails to BOTH Kareem Dale AND Anne Hayes (between now and inauguration day. Kareem Dale’s email address may change between now and January 20, 2009.) Anne Hayes can help ensure that emails sent to Kareem Dale are not lost during this time of transition.

Both Kareem Dale and others who have worked on disability issues within the Obama campaign are ready to receive YOUR emails on disability-related issues for US President-elect Obama. Emails are welcome from across the United States and around the world. If you are a US citizen, then please say so in your email.

Learn more about Obama’s plan for people with disabilities .

Yes, the video is captioned. And if you scroll down to the bottom of the page, you can download Obama’s Full Plan for people with disabilities in PDF format (62 Kb).

Read Obama’s acceptance speech.

Want to read someone else’s letter to Obama before you write your own? Click here.

Brain Power

This was on 60 Minutes last night. Beyond cool.


Watch CBS Videos Online

24-hour Poll Dance

In my post on 9/8/08 I told you all why Keith ordered a mail-in ballot for this election. There is way too much at stake in this election and we didn't want to risk him losing the opportunity to vote as he did in the Texas primary in February. We figured that no matter his health condition, the mail-in ballot would have him covered and he wouldn't be disenfranchised.

The mail-in ballot arrived in the mail the 2nd week of October and early voting began on October 20th. Last week, we got our first taste of real Fall weather and Keith was feeling pretty healthy so he decided he'd rather vote in person. His attendants got him into the wheelchair, connected his ventilator so he could be mobile and we were off to the polls. We arrived about 2:30p and happily the line wasn't long so we zoomed straight to the front. I showed the poll worker Keith's ID which she quickly scanned in and then looked up at me with a big smile and said, "I'm sorry Mr. Hogan cannot vote today because he received a mail-in ballot." I agreed that he had indeed received the ballot and then pointed to Keith so that she could see he was actually there in person, in his wheelchair on the ventilator and ready to vote. At that point she told us that unless we 'surrendered' the mail-in ballot, Keith could not vote. If we had known this to be the case, we would have certainly brought the ballot with us to ensure that the considerable effort which had been put into getting Keith to the polls would have resulted in his being allowed to vote. However, there is no notice on the ballot or on the many pieces of instructional materials included in the package from the Texas Secretary of State. Thus, we did not have the ballot with us and Keith was effectively disenfranchised.


Later that night we completed the write-in ballot, signed it and sealed it in anticipation of me dropping it off at the polling place the next day. Patriotic duty dispatched, it was time to sleep. The next day I went to the polling place to turn in the envelope and was told that they could not accept any mail-in ballots. To his credit, the poll worker was very empathetic and promptly sought out a supervisor to see if there was any way they could accept the ballot. Unfortunately, there was no procedure in place for this situation so I had to fill out an affidavit describing the issues and then get over to the post office to be sure that Keith's ballot got to the Travis County Clerk's office in time to be counted. So, I got back in my car, went to the post office and dropped the ballot in the mailbox at 2:30, just about 24 hours after Keith started to vote.

We are fortunate that we can enact a Plan B, C or as many as we need to so that we can achieve our purpose. I have no doubt that there are a large number of folks who are either permanently or temporarily disabled. It takes extra effort to manage the daily interactions with the system and, apparently, the system saves a few more hurdles for really important occasions such as voting.