I think my DAD's got a new gig upstairs...

Great news! We received a letter on Saturday advising us that Keith had moved to the top of the list for the Texas DADS STAR+PLUS program! This came as quite surprise because when we signed up in July 2008, we were told that it was a 2-3 year waiting list.

From the website:

STAR+PLUS is a Texas Medicaid program that provides health care as well as acute and long-term services and support through a managed care system. It is administered by the Texas Health and Human Services Commission (HHSC). Services are provided through HMOs. [The two HMO options available in Texas are Amerigroup and Evercare.]

Translated into words we want to hear:

• Once qualified, Keith will get financial support for personal care attendants [approximately 40 hours/week; perhaps more!]
  
• Coverage for medical supplies
• Coverage for durable goods

There are many program details beyond those three items, but those are huge elements of making home healthcare work!

So, we have 30 days from the date of the letter to submit an application to the program which will lead to an in-home assessment to determine the next level of qualification. Fortunately we have Clyde Farrell and Leah Cohen assisting us with this process. Naturally, we'll keep you informed of the story as it unfolds!

About the title of this entry, since my Dad passed away earlier this month, I like to think that he's up there smoothing the way for good things like this to happen.

The Cost of Inaction

I received a link to The Cost of Inaction report from the White House Office of Healthcare Reform.  The opening paragraph is noted below:

Americans across the country are demanding comprehensive health reform and cannot afford to wait any longer for Washington to act. Businesses and families are struggling as costs continue to skyrocket. More and more Americans find themselves uninsured. Those Americans fortunate enough to have health insurance often don't get the quality care they need and deserve. The Costs of Inaction highlights the flaws in the health care system and demonstrates the cost of maintaining the status quo. Organized into three sections - Escalating Health Care Costs, Diminishing Access to Care and Persistent Gaps in Quality - the report shows how the current system has failed millions of Americans and why we must enact comprehensive health reform this year.

Please click HERE for the rest of the report.

We're going for 10,000!

We have had 9,425 views of Keith's video on YouTube, "The Lucky Mutant". It was posted on 04/08/08 and we'd like to get 10,000 views by 04/08/09.

Keith has gotten great feedback from folks who have young children diagnosed with SMA who are happy to see that their kids can have a full life, despite the diagnosis. You can watch the video here, please share this LINK with your friends!

Measure Offers Choice And Independence For People With Disabilties

Please contact Senator Tom Harkin and Representative Danny Davis to thank them for reintroducing the Community Choice Act. And be sure to contact your political representatives to support this act too!

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Measure Offers Choice And Independence For People With Disabilties
by Harkin Press Staff

Disability advocates from around the country travel to Washington to rally with lawmakers
A measure introduced today in both the U.S. Senate and U.S. House will offer choice and independence for people with disabilities. The Community Choice Act, legislation sponsored by Senator Tom Harkin (D-IA) and Congressman Danny Davis (D-IL), will bring people with disabilities into the mainstream of society and provide equal opportunity for employment and full involvement in community activities. It allows people with disabilities who need an institutional level of care the choice of receiving their services and supports in their own communities, rather than in an institution.

“The legislation sends a message to the rest of Congress and to America: We want real homes, not nursing homes,” said Harkin, one of the authors of the Americans with Disabilities Act. “Our current system effectively forces people into institutions and requires them to impoverish themselves in order to become eligible for the assistance they need. It is wrong – and this legislation changes it.”

“This legislation allows States and consumers to obtain more cost effective long-term services in the most appropriate setting for the individual. Individuals with disabilities will be able to chose between services in an institution or services at home permitting more independence, more dignity and reduced cost,” said Congressman Davis. “Without any new entitlements, The Community Choice Act will allow the dollars to follow the person, and allow individuals, or their representatives, to choose where and how to best receive services and supports.”

Under the U.S. Supreme Court’s decision in Olmstead v. L.C. (1999), individuals with disabilities have the right to choose to receive their long-term services and supports in the community, rather than in an institutional setting. The Community Choice Act would amend Title XIX of the Social Security Act to make community-based attendant care services an alternative for Medicaid recipients who are “institutionally eligible” for nursing home care.

Disability advocates from around the country traveled to Washington today to rally with the lawmakers as they announced the introduction of the measure, which is supported by all of the major disability organizations.

Nick Dupree Knows What He's Talking About!!!

Disability A “Social Construct?” Not If You Lack Supports

Who is more disabled? The successful banker who happens to be quadriplegic, and gets up each weekday (with the help of assistants) and goes to work, contributing to the community and pulling down over $100,000 a year? Or the dude who still lives in his mom’s basement, who can do chin-ups, run and jump, but is unwilling or unable to contribute to society? Who is more disabled?

Traditionally, society would tell you the banker is disabled. Dumb society. Clearly, he’s not as disabled as the basement guy! If we measure ability according to contribution, the banker is way ahead. But society usually measures things based on appearance, and the banker looks “dependent,” “confined to a wheelchair” and “trapped” to most people.

Does this mean disability is a purely social construct? And we should all go write disability studies papers about how disability is a false construct used by a pervasively ablist society to oppress those who are different? Not so fast.

It all depends on supports. If your caregivers are responsive and willing and able to support all your needs, your disability becomes a minor, almost social/cultural difference, like hair color or left-handedness. You can contribute in your own way, as everyone else can. But if you don’t have good supports, that same person may end up with repeated illness, lying helplessly on their back, unable to contribute. The banker who made $100,000 will make $0 and live in a dim nursing home without the support of his assistants. Suddenly, he is MUCH MORE disabled than the basement guy (who at least always has choices). Suddenly, it’s not a social/cultural difference the banker has the luxury to debate; he is watching his peers contribute and benefit in society while he’s unable to leave his room regardless of his wishes, and the cultural assumptions of his inability have become true, a prophecy fulfilled by the system’s outdated model. He’s suddenly very different, and it’s not cultural at all. It’s a real, physical difference, and a huge barrier.

Unless we have reliable access to proper personal attendants and supports in the community, unless we pass the Community Choice Act and offer REAL choices of community living vs. living in a hopeless institution’s back ward, then debating “disability as a social construct” will be the luxury of academics, while those with severe disabilities hope the nurse will let them turn on their side today. Until we have the help we need, our problems will be very real and physical, with the invisible cultural barriers several rungs up the ladder, something we HOPE we can confront once we climb up.

And once more and more of us with severe disabilities are living independently and publicly seen doing so, the appearances, and thus the societal perceptions, will shift, and the assumptions that we are helpless, can’t contribute and need to be in institutions will dissipate. We can begin to reverse that vicious cycle if both appearances and the realities of what we’re contributing change.

Now we have to get the needed services and supports to change the lives of people with disabilities. And that’s what the Community Choice Act is about.

The Community Choice Act is being reintroduced in Congress THIS TUESDAY, the 24th. Read more now.

Nick Dupree
Nick's Crusade
http://www.nickscrusade.org/wordpress/

Don't Ask Me!

We just had an enlightening conversation with Candice from Humana's Prescription Review Department. Apparently this is an annual service provided by Humana to assess how (and if) the client's prescriptions are working together.

What we learned today:

• Keith is still in Stage 1 of the prescription plan, which means that he has not yet reached $2700 in Rx benefits for the year. Approximately 25% of rx costs come out-of-pocket. However, that limit is rapidly approaching and Keith should enter Stage 2 coverage by about June 1st.
• Stage 2 is the dreaded "donut hole" with no prescription coverage at all. This would not be a problem if Keith had Medicare Part D insurance, which limits the client's out of pocket costs to $100/month. However, he didn't anticipate the healthcare issues.
• Once you are through the donut hole, you enter Stage 3 (Catastrophic coverage) in which Humana covers 95% of the prescription cost, with the remaining 5% coming out of pocket.
  

We did not have to deal with this last year because Keith spent so much time in the hospital and billing is completely different.

Confused yet? Yeah, so are we. I honestly don't know how people with less capability (whether due to illness, confusion or stress) handle this. The system seems to be designed to deliberately confuse and frustrate the client. And the people assisting you seem to realize this as they immediately give you new department names, 800 numbers and other potentially helpful tidbits to solve your problems. The bottom line, however, is "don't ask me!".

Here are the Humana support numbers she gave us, please feel free to share with everyone:

• Prescription Review Status: Clinical Pharmacy Review Team 800-555-2546
• If your prescription status is declined: Humana Member Grievance & Appeal Department, 800-457-4708

Once you are in the 'donut hole', there are two recommended prescription assistance programs:

• Patient Access Network, 866-316-7263
• Free Medicine Foundation, 573-996-3333

We are still awaiting the 2nd round review of Keith's medroxyprogestrone prescription coverage. The doctor is sending another strong appeal for support and Candice noted that Keith's prior 10 years of usage should be a strong consideration in the board's decision. However, as always, the unspoken message was "don't ask me!"

Another Humana policy you should know about.

On Tuesday March 10th my father was rushed to the Christus Spohn hospital in Corpus Christi.

In the short time that we were still hopeful that he could be stabilized, we hoped to have him moved to Austin where my sister & I could spend more time with him as he healed. The social worker at Christus Spohn worked that end of the information gathering and we had two great doctors here in Austin ready to be Dad's admitting doctor once the transfer was okayed.

The social worker did her best, but sadly informed us that Dad's Humana coverage was only regional, so even if we could physically bring him to Austin, none of his medical needs would be covered until April 1st since any requested changes go into effect at the first of the month.

In our case, dad never stabilized, and passed away in Corpus Christi on March 14th.

One of the many lessons we learned out of this tragic incident, is that you need to be sure that everyone you care about has PPO insurance so they can get medical support when and where they need it.

Taking it a bit further, I'd love to find the insurance company that would waive the timing requirement so that patients could be transferred to a hospice or other facility near their family when their time here on Earth is short.