Right to Birth

The new effort to repeal the health care reforms that were so hard won has got me steamed-- and active again. Thanks to President Obama, Democrats and a few brave republicans, my daughter lives. My insurance company would love nothing better to drop her, or even better, as they do now, continue collecting premiums for her but denying any claim related to her "pre-existing" disability. I know, they only say "pre-existing" because "too expensive" is so blunt it is offensive.

The Republican Party (as opposed to republicans I know and love) is so dysfunctional on this issue. Figure me this:
My daughter had a right to birth but not a right to life saving health care.

To follow their logic, my patriotic duty would be to stop using MediCaid, her state sponsored health care-- which is, as Ryan intimated, going to ruin America, bankrupt us and make us like Greece or England. (And, I would just say,  Greece is a nice place. Really, Ryan's comment was just rude. Frankly, for all their present problems, they are a lot older than us and deserve more respect from an upstart young nation than that. After all, they INVENTED the democracy we so love.)

Yet, repeal of health care reform would allow the evil Aetna to drop her, or to enforce the 4000 lifetime limit on pre-existing conditions-- which she blows through by about February of each plan year.

So, Representatives Ryan and Noem, Senator Thune, should we just take her off her meds and let nature take its course? Does she, or does she not have a right to life saving health care? And if not, why are we fighting for the right to birth?

Rett Syndrome gets a boost from MSNBC!

The International Rett Syndrome Foundation (IRSF) is the recipient of an extremely gracious, generous and incredible donation…advertisement design and space for an entire day onwww.msnbc.com!

The MSNBC website generates 3 million visitors per day, and likely even more on Feb 24^th with coverage of the Vancouver Winter Olympics . It is estimated that 15% of those visitors will click on the IRSF advertisement, which will bring them to our website: www.rettsyndrome.org. This means there will be an additional 450,000 people learning about and donating to the cause we all hold so near and dear to our hearts—Rett syndrome!

On this day, IRSF’s website will be unveiling and promoting the newly established Research to Reality campaign which is out of the starting gate with an incredible $1 million Pioneer Fund Matching Grant award.

IRSF hopes this will be the largest online giving day in Rett syndrome history! And to think—it will all be doubled through the matching grant!

How can you help?

• Mark your calendar to visit www.msnbc.com on February 24^th

• Donate whatever amount you feel comfortable with to IRSF on this day

• If you have not done so already, join Facebook and become an IRSF Fan before February 24^th…this can be found atwww.facebook.com/rettsyndrome

• Visit the Research to Reality webpage found underwww.rettsyndrome.org > Get Involved to learn about this exciting and promising campaign

• Contact your local NBC affiliates to share this news, as well as your personal connection to Rett syndrome, especially if they have covered your event or story in the past (make sure to reference past coverage date(s), headline, and lead reporter)

• Encourage your friends, family members, co-workers, contacts and other Rett families to do all of the above as well—it is simple…

• Forward this email or write your own email including the wording above
• Add the following statement and attached logo to your email signature, blog, website and/or Facebook status page regularly between now and February 24^th: “Visit www.msnbc.com on February 24^th to show your support for Rett syndrome!”
• Make the Research to Reality logo your Facebook image for the day of February 24^th and post a reminder to visitwww.msnbc.com to your Status
• Pledge to learn something about Rett syndrome on February 24^thand spread the news in support of World Rare Disease Day on February 28^th

This is a very exciting opportunity for every one of us affiliated with the International Rett Syndrome Foundation—whether you are a parent, grandparent, relative or friend caring for someone diagnosed with Rett syndrome…or a researcher working feverishly to find the answers to solve the mystery of Rett syndrome…or simply just a caring individual who wants to help make a difference in the lives of so many…

Your help is their hope…they are waiting patiently…but now is the time to make a difference. We need YOU!

Please let me know if you have any questions—I am happy to answer them or help you make this day a success.

South Dakota's new IRSF Rep

I am excited to be the new regional representative to South Dakota for the International Rett Syndrome Foundation (IRSF). If you or anyone you know has a daughter with a global developmental disorder that is undiagnosed, or who has a clinical or medical diagnosis of Rett Syndrome, please get in touch and pass on my contact info via this blog!

For more information on Rett Syndrome and IRSF, click here.

Kaiser Continues Denial Processes

If there is one thing I have learned in being a mom of a child with disabilities, it is that the more persistent I am the more likely I am to get results. One public employee (of an unnamed agency) said, "you don't have to be a bitch!" and I replied, "you have trained me to be very assertive, when I am nice you take advantage of my good nature."

So with schools, Regional Center, MediCal as it is with Kaiser. Every one wants our monthly premium and tax dollar, no one wants to serve my child.

Kaiser responded to our complaint by noting that we discontinued our coverage as of October 1, 2009 and thus were no longer eligible. I am sure that they are trying to discourage me in hopes I go away.

THink again, you dirty rats!!

Thanks for the great comment and helpful suggestions!

Next steps:

Forward this to Disability Rights Advocates in hopes of joining a class action case
Contact my benefits manager at work as suggested and have a phone conference with Kaiser (big employer!)
Of course respond in writing that the patient was covered at the time of the denial
Request an Independent Review in the meantime.

I'll keep posting on this.

GRRRRrrrrrr. I hate having to always be the biggest dog in the dog fight.

Single payer might have its drawbacks, but I keep thinking, seriously, could it be any worse for my kid and the millions of uninsured and "uninsurable" citizens of our great nation?

Ok, enough ranting. For now.

Kaiser DME denial discriminates against disabilities

Kaiser recently denied a speech generating device for our daughter. After some research, I wrote this letter and thought to post it here in case it is useful for others:

Member Case Resolution Center
4480 Hacienda Dr., Building B, 4th Floor
Pleasanton, CA 94588
Fax: 925-924-5165

October 22, 2009

Dear Ms. _____,

Regarding the denial of a medically necessary speech-generating device for my nine-year old daughter, , we dispute the decision of Dr. H for three reasons:
1. In reaching a recommendation contrary to the finding of the Kaiser licensed speech and language pathologist (who did meet with our daughter for an evaluation) Dr. H never met our child in person (other than in passing in the hallway). And, based on the generic rationale for denial, we have no evidence that Dr. H completed a thorough review of the AAC assessment from Dr. B (enclosed);
2. The standard Kaiser formulary criteria for speech generating devices discriminate against patients based on age and disability; and
3. Based on the extensive report of AAC assessment, our child does meet the formulary criteria, in spite of their discriminatory nature.

Additionally, we are aware of the case brought by Disability Rights Advocates Metzler et al. v. Kaiser Foundation Health Plan, Inc. et al. Case No. 829265-2, alleging that Kaiser fails to provide people with mobility disabilities full and equal access to Kaiser Permanente—California Division’s health services and facilities, in violation of California Civil Code §§ 51, et seq., 54, et seq., and 3345, California Government Code §§ 11135, et seq., and the regulations promulgated thereunder, and Section 17200 of the California Business and Professions Code.

Parts 24 and 25 of the settlement agreement for which reads:
"24. Plaintiffs have raised issues concerning Kaiser's policies and procedures for the procurement and maintenance and repair of durable medical equipment for members with disabilities. The parties have determined that they need additional time to address these issues. Accordingly, the parties agree to use their best efforts and to proceed in good faith to address these issues and arrive at a future agreement resolving them. In the event that such an agreement is not reached, the release provided in Paragraphs 41 -42 shall not apply to plaintiff's claims relating to durable medical equipment.

25. With the assistance of the parties, the Access Policy Consultant(s) and/or the Access Policy Work Group will review Kaiser’s policies and procedures (or the absence thereof) for addressing the communication needs of people with vision, speech, hearing, and cognitive disabilities and, where appropriate, will recommend reasonable modifications that Kaiser will adopt and implement. With respect to the model facilities, this review, recommendation, and implementation process shall be completed within one year from the effective date of this Agreement. The review, recommendation, and implementation process for all Kaiser facilities in California shall be completed within three years from the effective date of this Agreement."


With respect to the formulary, you stated in the denial letter dated October 13, 2009 that a speech generating device (numbering ours for ease of reference):
PART I: Will be covered if:
A. Have completed at least 2 years of speech therapy with out improve communication/speech and
B. Have a care-giver [sic] who has the ability to provide for maintenance and training the use of the device and
C. Mental and cognitive abilities to generate speech and
D. Comprehension and expression of language equivalent to at least that of a five year old
PART II: And meets one of the following criteria
1. Loss of previously developmentally normal speech through illness, trauma or degenerative disease with retained cognitive abilities
2. Failure to achieve speech communication using adequate alternative means.
PART III: Not covered for:
a) Use in developing language
b) Education goals
c) Child has spoken language adequate for expression of needs

With respect to Part I:
1. Criterion A. As stated in the enclosed report, provided to Dr. Hayward, “Emma continues to demonstrate severe oral motor and verbal apraxia and would not benefit from traditional speech therapy. The only remedy for her impairment is a speech generating device” (p. 4: Buzolich, 7/23/09).
2. Criterion B. Emma has two care-givers in the home who are able to care for, maintain and program the device. Her parents have attended trainings online, rented a device for home trial and were able to mount, adjust attack angle and positioning and dwell times, program pages and train others to use the device.
3. Criterion C and D “mental and cognitive abilities to generate speech and comprehension and expression equivalent to at least that of a five year old” discriminate against patients on the basis of developmental or intellectual disability and age. Many patients with developmental disabilities have a medical need for speech generating devices though they many never develop the complex syntax and vocabulary of a five year old. To discriminate against this class of disability is to invite a legal test. In addition, these clauses allow previously neurotypical adults with trauma or illness to lose ten to twenty years of cognitive capacity and still qualify, while young children have to meet and/or surpass their typically developing peers in order to qualify. We do not believe these clauses of the formulary could stand a legal test. We are sure you will wish to reconsider these as they invite a class to seek legal remedy.
4. In spite of this, we urge you to consider that in Emma’s case, Dr. Buzolich’s report clearly indicates that Emma has receptive conversational language comparable to children of her age (8 years). She is currently working comfortably in a modified second grade curriculum and meeting many first and kindergarten grade level standards, including expressed comprehension of such complex concepts as sequencing events, using fractions, and counting by fives and tens. She has eagerly embraced every system of communication offered to her for as long as she could use it, including speech (before she became symptomatic), sign language and PECs and currently a robust eye-gaze communication system that includes her 84 e-tran boards (Buzolich, p2-4). Her receptive vocabulary far exceeds her expressive vocabulary, thus she meets Kaiser’s criteria despite their discriminatory nature.

With respect to PART II:
1. Emma had approximately 100 words at age 18 months, well within the benchmark range. She has retained much of her cognitive function and continued to develop cognitively and linguistically since then.
2. Emma has, as previously noted, not benefited from speech therapy.

With respect to PART III:
Again we note that these three clauses together and each discriminate against patients based on their age and disability.
a) Criterion a: not to be used for language development. This criterion discriminates against minors in violation of civil rights law; all children and young adults develop language. This means that only older adults may qualify under this criterion, clearly discriminating against children. While Emma is still developing language (as her typically developing peers are) she has language to meet #4, Part I.
b) Criterion b: not covered for educational goals. Kaiser does not proscribe the use of any other medical devices provided by Kaiser such as wheel chairs, standers, walkers, glasses, hearing aides, or orthotics even when these are obviously used at school and in meeting educational goals such as ambulating in Physical Education or reading, listening and speaking (developing language) in Language Arts. Since adults are not affected by this exclusive criterion, it unfairly discriminates against children with disabilities that severely impair communication. In spite of this objection, Emma does NOT need this device for educational needs as stated by Dr. Hayward in her original denial. In the comprehensive AAC report, Dr. Buzolich clarifies that Emma has a My Tobii P-10, purchased by her school district, in her classroom and uses this to access her daily curriculum (Buzolich, p. 1). Emma needs this speech device for use primarily in the home. We note that in your denial of DME (transportation option for Emma’s chair) Kaiser stated that DME is for use primarily in the home.
c) Criterion c: Child has spoken language adequate for expression of needs. This criterion discriminates against minors and an entire class of disability: children with severe communication disorders. Adults with ALS or MS who have spoken language to ask for their needs are not proscribed from speech generating devices by this criterion. Since “adequate expression of needs” is undefined the criterion is overly broad. Young children have many needs that require complex communication. Emma needs to communicate simple needs, such as hunger, thirst and fatigue and restroom—all available to her on a 4x4 eye gaze board. However, even with a skilled partner, it is difficult for her to independently communicate more subtle needs, including: physical needs such as location and severity of pain, seizure aura; or emotional needs such as loneliness, anxiety about her health, fears about the future, or the content of nightmares that wake her in tears. Anything more complex than these common childhood needs, such as identifying a favorite classmate for play dates, recounting events of the day, discussing an upcoming event, telling her siblings to get off her chair or out of her room is beyond her ability to independently access. These are all age appropriate, very fundamentally and essential psycho-social communication needs. To deny her access to this language is medically negligent.

We hope that Kaiser will review Emma’s case and approve this request for speech-generating device as recommended by the Kaiser SLP, as Emma meets the current criterion. We also hope that this will prompt a review of these unfair and discriminatory criteria as it is in Kaiser’s best interest to uphold civil rights of its patients.

California is not the heartland

We have had such amazing experiences since moving out of California. The term "heartland" for the midwest always struck me as a cliche (being from liberal, progressive California). But I am beginning to get it. 

California is an incredibly wealthy state. South Dakota is less so. Californians flaunt their wealth. South Dakotans use it. I have yet to see an Escalade here. But the schools all have libraries. And librarians. Most families live in homes that are under 2000 square feet in our new home town. But the schools have computer labs. And computer teachers. 

Attending an IEP team meeting in California, the team made a recommendation for an assistive technology device, and our program specialist squirmed. She claimed she could not recommend the device because she did not have the authority to authorize to make the purchase. (Even with attorneys present she could not bring herself to comply with the law without reservation). 

At an IEP team meeting here, the special education director asked questions like, "Do we need to purchase a device for her?" and "What training do we as a team need to get ready for her?Should we hire a consultant to train us or will the state department of education be able to provide training through their assistive technology group?" (FYI, California's state DOE does not have an AT group).

In California, the smallest of obstacles for providers becomes a mountain too tall to scale, too big to go around. Even though there is a staggering amount of money flowing through the economy there (Gary Eberhardt said they spend 68 million dollars on 4000 special education students  per year) they can't seem to make that money work. There are fewer than half that number of people in this entire town. Yet here they manage to fund their schools, keep libraries, computers, art, music, AND bus their special education students to town each week for adaptive aquatics. No one in the school district is afraid to comply with IDEA or ADA because compliance is too expensive.

Of course, my in laws drive a late model domestic mini-van (which, horrors, has a dent in the fender), cut their own lawn (1/4 of an acre) and take most of their meals at home, rather than ordering or going out. 

I wonder where all the money comes from?

Socialism, Fascism and Health Care

I have a child who is uninsurable. As with so many millions of Americans, she has a "pre-existing condition." Simply translated: "known to actually use medical services and therefore predictably too expensive." Recently I learned my job is in jeopardy, and like millions of parents with children with disabilities, did the only thing I could. I panicked. 

Socialism is flung about as a dirty word by those opposed to changes in the flow of money through the healthcare industry. According to the Encyclopedia Britannica, socialism is based on the ideals of democratic, “non-coercive communities working non-competitively for the spiritual and physical well-being of all.” That does not sound so bad. Almost like church. 

On the other hand, Fascism includes a “…militaristic nationalism, contempt for political and cultural liberalism, a belief in natural social hierarch and the rule of elites and a desire to create… a community in which individual interests would be subordinated to the good of the nation.” That sounds familiar in a not-so-nice way. 

Competition has its place. In a well functioning market we see contained costs, customer driven prices, availability, and productivity. But competition implies losers. Who wants to lose in the health care race? Who wants to even chose who should lose?

The thing is, insurance is not the same thing as medical care. Medical Insurance is a profit driven, competitive business that makes money by charging more for medical services than they actually cost. Insurance companies would have us believe that we Americans have the best medical services in the world. That is a half truth. Some Americans have excellent medical care. But millions of Americans have none at all. Most Americans who have medical insurance are healthy, able-bodied and inexpensive to insure. 

Here are case studies from my family (where everyone is actually insured):

My permanently disabled eight-year-old daughter waited three years for a commode (that is a grown up potty seat). For three years she was unable to use the toilet and had to soil herself. Five years to get a speech generating device (still not approved) and six months for a wheelchair. Physical therapy? Denied for the third year in a row. Her illness is progressive, but she is likely to survive for decades. As hard as it is to say as a mother, she probably will not get better. Her disease is being studied by private foundations and a small grant through the orphan diseases project recently begun at NIH. Insurance companies and government agencies all have layers of bureaucracy to screen her expenses and deny what they can. 

By way of contrast, my father developed small cell lung cancer at age 65 (he was a smoker). He received top of the line cancer care. The research for this disease was initiated by Nixon, who started the "war on cancer" that continues today through private and public funding. That prolonged his life several months at a cost of $75,000 per chemo treatment (dozens) and several ICU stays. Following his treatment, he received emergency surgery for an aortic aneurism, a surgery that has fifty percent chance of leaving healthy patients gravely disabled. If they survive. The average survival rate is 6 months and the average cost is 2.5 million dollars. Typically, he faired poorly and spent the remaining several months in ICU. Thankfully, he had excellent care and never wanted for anything. While on the floor he had 24 hour nursing care, a respiratory and physical therapist, cardiologist, pulmonologist and intensivist a commode a wheelchair and a walker. The most likely outcome from the beginning (as hard as it is to say as a daughter) was that he would not survive more than five years from his first diagnosis.  

Why was it so easy to get top of the line care for my father, but not my daughter? Even when they had the same insurance companies, it was always harder to get care for her. Layers of bureaucracy  lay between her and the simplest of procedures while he had a liaison in hospital who provided case management. In essence, they both needed similar care: physical therapy, feeding, changing and medication management. 

The answer is simple, but cynical. He was profitable. She is not. Insurance companies are not there to provide care, they are there to make money. In a free market system, his care made money, her care continues to lose money. He needed that level of care for a couple years after needing little for a long time. She will need a lot of care for a long time. 

In the real America, Main Street America, you get medical care if, on balance, you don't cost too much. That is fascism. It used to be a dirty word.

I think, on balance, I may prefer a single payer system. Call it socialism if you want. I will call it providing for the physical and emotional and spiritual well-being of the nation. I will call it family values. You might too, if someone you love actually needs medical care, not just insurance.