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.

Where is the 'human' in Humana?

Well, Humana has denied Keith the meds he needs. Don't get me wrong, they want him to have medroxyprogesterone, they just don't want to pay for it. Which adds about $96/month to our healthcare costs. Which makes me wonder how Humana can change a prescription plan without notice? And what do the people do who can't muster up the extra $96+ per month?

Keith's doctor is going to challenge this with the old "the patient needs this medication to breathe" defense. We'll see if that works.

Terri Johnson -- A Place for Mom

I received this email last Tuesday, the day that Dad was admitted to the ER at Christus Spohn Hospital in Corpus Christi. At that time we still had the hope we could move Dad up here to be closer to me and my sister. I spoke with the management of each of the places Terri Johnson recommended and was impressed with the kindness, warmth and genuine interest in making this next phase of Dad's life fun, safe and interesting. Unfortunately, we never had the opportunity to get Dad settled here in Austin.

Terri Johnson is a great asset to her company, A Place for Mom. She knows the market well and respected everything we shared about Dad's situation, including the budget! Her insight and compassion made a huge difference.

Although we were not able to utilize this information for Dad, I wanted to share it with all of you so that you might benefit in your own situation.

Ruth

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~


Thank you for contacting A Place for Mom. As your Eldercare Advisor, I am here to answer questions and provide you with referrals and details on senior care options in your area. Again, there is no charge to you or your dad for our services.

As we discussed, I am sending you a short list of communities that should meet your dad’s needs. I can help you set up a schedule to tour, and please feel free to contact our partners listed below to learn more and arrange tours. The selected care providers may also call you to schedule a visit. After you tour, give me a call or I will contact you and we can discuss if they met your needs. If not, I can offer more options for you.

Please call or e-mail me anytime! I am always interested in knowing how your search is going and am ready to assist you in any way I can.

Highland Estates1500 North Lakeline DrCedar Park, TX 78613
Contact: Julie or Joe Rowlette Phone: 512-259-3318

Click here for directions to this community.

Parkwood Meadows310 Chisholm TrailRound Rock, TX 78681
Contact: Debbie or Don McCowan Phone: 512-255-0886

Click here for directions to this community.

Parsons House Austin1130 Camino La CostaAustin, TX 78752-3969
Contact: Michael McKee Phone: 512-454-0524

Click here for directions to this community.

A great resource to check out is A Place for Mom's Family, the first online community website set up specifically for the families of aging loved ones to talk about eldercare. Find or share tips on moving mom or dad, legal matters, financial aid for Veterans, Alzheimer's care, dementia and so much more. Join today!

I look forward to working with you! Please keep me in the loop on what you hear regarding your dad’s prognosis (I will keep my fingers crossed for him).

Warm regards,

Terri Johnson
Eldercare Advisor
(877) 386-8023
terrij@aplaceformom.com
www.aplaceformom.com

http://elder-care-community.aplaceformom.com
Join "A Place for Mom's Family" - The first online community website set up specifically for the families of aging loved ones to talk about eldercare. Find or share tips on moving mom or dad, legal matters, financial aid for Veterans, Alzheimer's care, dementia and so much more.

A Place for Mom, Inc. is a nationwide information service about eldercare options including nursing homes, assisted living facilities, adult family homes, independent living and home care agencies. Our role is to provide information and options that meet a loved one’s stated needs and preferences. A Place for Mom, Inc. has assisted over 450,000 families in finding care and housing for their loved ones since it began in 2000.

Facilities or agencies may be included in our service if they are appropriately licensed by the state in which they operate. If a participating facility informs A Place for Mom, Inc. that it has lost its license, for any reason, or if A Place for Mom, Inc. has received complaints of significant dissatisfaction by consumers which are documented and can be proved, the facility will be excluded from the A Place for Mom, Inc. information service. A Place for Mom, Inc. does not own or operate any of the facilities or agencies to which it refers.

In order to provide the information service to consumers at no charge, participating facilities or agencies pay a fee to A Place for Mom, Inc. Information about facilities or agencies is provided for each family based on the clinical, financial and geographic needs and preferences stated by the family or client. A Place for Mom does not endorse or recommend any facility or agency as we believe it is the consumer’s sole responsibility to select the appropriate care for a loved one or for oneself. The facilities which are provided are options to assist in finding the right care or housing. Families are encouraged to tour and ask questions of each provider to ensure they select the facility that best meets their needs. A list of questions to assist you in the selection process is available from A Place for Mom, Inc.

Just ask George...

Just spent 30 minutes on the phone with Humana...only 10 minutes per department (apparently that's good?).

According to Humana customer service representative Randy, Keith is over the limit for the year (2009) for medroxyprogesterone, although they admitted that didn't make sense based on last year's needs. That confusion bumped us to the next department. Randy told us he'd fully apprise the rep in Pharmacy Customer Service of the situation so we didn't have to repeat the story. Well, he was sort of right.

While we didn't have to repeat the story, the Pharma Customer Service rep spent most of her time advising us that we should let Medicare know that they had Keith's birthdate wrong on his official paperwork. We assured her that we had done that multiple times and, after her 3rd admonition about it, I cut her off and said we needed to focus on the medication issue. She looked at the records and said, "oh, this is the wrong department, let me connect you to Pharmacy Clinic Customer Service...I'll call ahead so they understand the situation and you don't have to repeat the story."

I knew we must have gotten to some inner sanctum of customer service because the hold music was in the classical vein. George came on the line and smoothly told us that after looking at Keith's records, he had a solution underway. He faxed a request to Keith's doctor and advised us to tell the doctor to elaborate on the medical need for this prescription. Humana would then have an answer in 24-72 hours as to whether Keith could have this medication in the dose the doctor prescribed.

So, perhaps we have a victory in this skirmish. If so, I know that next time I go straight to George...lol.

Subscription does not equal Prescription

I went to Walgreens today to pick up Keith's prescription for Medroxyprogesterone. This Rx is used as a mild, direct stimulant of the respiratory center, thereby improving Keith's breathing. His doctor has directed Keith to take 4 pills 3x/day for a total of 12 pills/day. Keith has been taking this medication for about 10 years and it works well in concert with the other meds he has been prescribed. After all, he's still breathing...lol.

Okay, back to the story. The pharmacy tech told me that the system was not allowing her to fill the prescription for any more than 60 pills...a 5-day supply based on the prescribing doctor's dosage. She got the pharmacist who also tried to override the system to no avail. She called Humana to find out why a standard medication refill was not being honored. She was told that Humana had determined that they would only pay for 2 pills a day, not the prescribed 12 pills/day per the doctor's orders. I was aghast. How does a insurance company with no medical knowledge of the patient arbitrarily change the prescription? I was told they said it was fine for Keith to take the 12 pills/day, but that he'd have to pay for them himself.

The pharmacist at Walgreens said this happens all day, every day. She has sent a fax to Keith's doctor to see if we can get this changed. Next step is contacting Humana Cares...we'll see if they do.

Walter Glendinning, 10.13.31 - 03.14.09

My Dad, Walter Glendinning, passed peacefully at 4am in Corpus Christi from undiagnosed colon cancer. All of us (including Dad) just learned about the cancer on Wednesday so we are grateful that he went swiftly and without pain. He was very well cared for by the medical staff at Christus Spohn Hospital and we will be eternally grateful for the kindness they showed Dad, my sisters and me. I will keep you updated on any memorial service information, which will be in Rockport some time in April.

Dad was born in the tiny town of Hawick, Scotland and found his true home in the even tinier town of Rockport Texas about 20 years ago. Along the way he traveled the world and made many friends over his 77 years. He will be deeply missed by all who had the opportunity to know him and experience his positive energy. He was always ready with a good story, friendly smile, silly pun or joke, and a compassionate heart. He made friends literally to the day he died. There much more to say about Dad, but suffice it to say he had much love and laughter around him.

Thanks so much for all your good wishes and prayers.

Love,

Ruth

If there is a ground zero for both problems, it is Texas

The Healthcare Crisis Hits Home
Karen Tumulty
TIME Magazine cover story

http://www.time.com/time/nation/article/0,8599,1883149-1,00.html

Here's an excerpt that caught my eye...

If there is a ground zero for both problems, it is Texas, where I grew up and where my parents and brothers still live. About 1 in 4 Texans is uninsured, the highest rate in the country. The vast majority of the uninsured — 8 in 10 — live in households in which someone works, typically for a small business. But only 37% of Texas companies with fewer than 50 employees offer medical coverage.

The state's Medicaid program is notoriously stingy. State law requires counties to provide care only to those deemed "indigent," defined as people who earn less than 21% of the federal poverty line, or $2,274 a year for a single adult and $4,630 for a family of four. Many counties, particularly rural ones, do no more than that minimum. So Texas — a state with relatively little regulation of the health-insurance industry — is fertile territory for insurance companies selling bare-bones coverage at low prices.

Read the whole article. It may be better where you are, but not by much. Forward this article to your political representatives. Demand better. You may not need it today, but without a doubt, you will need it soon.

Achieving a Better Life Experience Act of 2009 (ABLE Act of 2009)

Proposed Bill Would Allow Tax-Free Trusts For Those With Disabilities
By Michelle Diament
March 3, 2009
(Updated: March 3, 2009 at 1:16 PM CT)

[http://www.disabilityscoop.com/2009/03/03/savings-accounts-bill/2412/]

A bill proposed in Congress would allow tax-free savings accounts for people with disabilities much like those already in existence for those saving for college.

The bill sponsored by Sen. Robert Casey, D-Penn., and Rep. Ander Crenshaw, R-Fla., would allow trusts to be created to pay for disability related expenses such as education, housing, health care and personal support services. The funds in the trust would not count against the individual’s maximum asset amounts to qualify for Medicaid and other government programs.

Called the Achieving a Better Life Experience Act of 2009 or the ABLE Act of 2009, the bill would create accounts similar to the 529 plans that currently exist to save for college. Up to $500,000 could be invested in the accounts, which would be tax-free in many cases.
“Too often persons with disabilities are caught in between the cracks in our society. The ABLE Act will provide families with a savings tool that is flexible and portable. The accounts are designed to help ease difficult financial situations and provide peace of mind to the families of individuals with disabilities,” Crenshaw said.

In order to become law, the bill would need to pass both the Senate and House and be signed by the president.

It seems appropriate that this demand for freedom is starting in Philadelphia...

Give Disabled a Home Choice

Cassie James Holdsworth and Nancy Salandra are, respectively, director of policy and advocacy and director of independent-living services for Liberty Resources

The Community Choice Act has been languishing in Washington for 15 years, despite the considerable benefits - in both lifestyle and finances - it would yield for many Americans.

The act is a piece of federal legislation that would amend the Social Security Act to give disabled and elderly people access to support services at home instead of in institutions.

Under current Medicaid policy, disabled or elderly people who require assistance with daily activities are entitled to such services only if they reside in nursing homes.

The average annual cost of a nursing-home stay in Pennsylvania is more than $67,000, and 67 percent of nursing homes in the state are funded by Medicaid.

Why can't patients live in their communities with the same funds?

Advocates have long been asking Congress to allow people at risk of being admitted to nursing homes to have the option of staying in their own homes with Medicaid dollars. Not only do the vast majority of people prefer living at home; it's also cheaper. Often, two people can be served in the community for the price of putting one person in a nursing home.

Home care can also create more jobs. And it allows people to remain productive members of their communities.

So why hasn't this legislation been approved? The chief barrier is the influential nursing-home industry, which has been entrenched in American society for more than four decades.

It's time for America to think differently about long-term care, and the Community Choice Act is a critical first step. The legislation provides a socially and fiscally responsible alternative that will enable many people with infirmities or disabilities to maintain their independence.

With the high cost of health care and the prospect of increasing numbers of baby boomers needing such services, funding community-based services seems even more prudent.

The legislation is expected to be reintroduced this spring. All but four members of Pennsylvania's congressional delegation, including both of its U.S. senators, have signed on in the past.

Given that Pennsylvania ranks 13th among the states in nursing-home population and third in state spending on nursing homes, the commonwealth stands to reap extraordinary benefits from this legislation. It should be leading the charge. Where are our champions?

Liberty Resources Inc. is a nonprofit advocacy organization that promotes independent living for people with disabilities in the Philadelphia area.