Friday, December 18, 2009
Tuesday, December 8, 2009
Monday, November 30, 2009
Tuesday, November 24, 2009
Saturday, November 21, 2009
Monday, October 5, 2009
The work to bring this to the attention of the right people has been exhausting. The amount of energy necessary to find people who care has been appalling. For me, insuring that Keith has the oxygen he needs to continue healing is of paramount importance and that has been the primary motivation to move forward. However, I am also driven by the unknown others who are being affected by this home healthcare provider's policies in this region. To top it all off, it sickens me to see the recent advertisements by this company expressing their commitment to their clients when I know our experience on the local level has been quite different. And, we are not alone. There are many oxygen dependent clients who are experiencing similar issues. I'm hopeful that with Humana on our side that we can not only sort out Keith's O2, but improve the options for others as well.
Friday, October 2, 2009
The report breaks out the coverage and cost estimates for each state. Below is a snapshot of Texas' data. You can see it in larger, clearer detail on page 57. If you live elsewhere, the state projections begin alphabetically on page 14.
Researchers from the Urban Institute used their Health Insurance Policy Simulation Model to estimate how coverage and cost trends would change between now and 2019 if the health system is not reformed. The report shows that under the worst-case scenario, within 10 years:
- The number of people without insurance would increase by more than 30 percent in 29 states.
In every state, the number of uninsured would increase by at least 10 percent.
- Businesses would see their premiums increase—more than doubling in 27 states.
Even in the best case scenario, employers in 46 states would see premiums increase by more than 60 percent.
- Every state would see a smaller share of its population getting health care through their job.
Half of the states would see the number of people with ESI fall by more than 10 percent.
- Every state would see spending for Medicaid/Children's Health Insurance Program (CHIP) rise by more than 75 percent.
- The amount of uncompensated care in the health system would more than double in 45 states
Sunday, September 6, 2009
Monday, August 10, 2009
Friday, July 24, 2009
- Have Keith come into the office with me or an attendant so his hand could be held & directed to make 'his mark' [as an official policy, this sounds shady to say the least]; or
- Have Keith's doctor write a letter stating that Keith was not competent to sign his name, therefore I or someone else could sign for him.
Tuesday, July 7, 2009
Wednesday, July 1, 2009
Saturday, June 6, 2009
Friday, June 5, 2009
- Get a detailed explanation & prescription from the doctor as to why Keith needs an average of 3L/minute of liquid oxygen. [Um, because it's the only way to stay alive on this planet?]
- Fill the garage with oxygen canisters and store a highly flammable liquid during the hot Texas summer.
- Find a spare $2000/month to pay for the other 3 weeks of oxygen
Thursday, June 4, 2009
Mayo reminded me of that movie Gattica. There were no sick-looking people, or people w/ oxygen or no hair; just old people. The first physician I saw promptly told me he would not accept my saliva or other samples, indicating low sIga, b/c they were not deemed accurate. He then interrupted me as I began my symptom list and told me neither chronic fatigue or another new bodily symptom I cited "would be addressed." He then handed me a 2-year old printed-off-the-internet article (not even the Mayo article) on Chronic Fatigue Immune Deficiency Syndrome (really!?). Then he made me an appointment with the psychiatrist. Due to an emergency, he was unable to meet w/ me the following day, but a different, and very kind physician did. I asked if my new & weird symptoms had an explanation (shogren's, as my current doctor thought, Lupus, due to the rash, etc.), and he said, "yes, chronic fatigue immune deficiency syndrome." I asked if this meant my immune system was more susceptible, and he said, "no." I asked how I was supposed to take care of my children if I can't lift my head, and he said, "I'm so sorry." I get that there's little interest in helping tired women, but 10 vials of blood later, armed with only a high iron content and possibly a low Vitamin D level (again), they were content to send me home (kick me out). They didn't even have the results of my circadian pee test (everyone holds a GAP drawstring-looking bag w/ a jug that holds their pee in it). That was the highlight: the nurse who handed me the bag with the jug said, "Thank you for shopping at Mayo."
Monday, May 4, 2009
Subject: Health Care in Rural America
Date: Monday, May 4, 2009, 8:26 AM
- Nearly one in five of the uninsured – 8.5 million people – live in rural areas.
- Rural residents pay on average for 40% of their health care costs out of their own pocket, compared with the urban share of one-third.
- In a multi-state survey, one in five insured farmers had medical debt.
Department of Health and Human Services
PS. While you are reading the new rural health care report on the site, check out our new Health Reform quiz. Do you know whether this country spends more on health care or food? Click here and test your health care knowledge today. We will be updating the quiz every day.
Wednesday, April 1, 2009
Tuesday, March 31, 2009
- 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
Monday, March 30, 2009
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.
Saturday, March 28, 2009
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!
Tuesday, March 24, 2009
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.
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.
Monday, March 23, 2009
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:
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!"
Sunday, March 22, 2009
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.
Thursday, March 19, 2009
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.
Wednesday, March 18, 2009
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.
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).
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.