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.

Pools-- not just for athletes

Recently, our school district began the process of rehabilitating swimming pools that had fallen out of use. I asked the school board member who made the report what provisions were being made for accessibility. She did not know at the time.

The board, she reported, wanted to fix the pools for kids who play "water polo" and other water sports.

But... I thought, kids with disabilities use pools for adaptive aquatics. It's not like we have to build a pool for them but since we have pools that are getting a major overhaul, could we not be thinking of letting special ed kids use them? 

Thinking about compliance is not the same as thinking inclusively. Here is a compare and contrast: 

• Inclusive: "wow, wouldn't it be great to have an aquatics program that included a full spectrum of water sports from athletics like water polo and competitive swimming to Physical Education like water aerobics, recreational swimming and adaptive aquatics?" 
  
• Compliant: "Well, we are getting the pools fixed for the water polo team, I guess we better make sure we comply with ADA even though we will hardly ever have a kid with a disability use it. Damn, that is a lot of extra expense."
  

The logical consequence of inaccessibility is a kind of ghettoization of people with disabilities. As a family we have learned that, if facilities exist at all, our daughter has "special places" that she can go (special often means "especially appealing" but here means "limited, isolated and hard to find") - usually a park in a system, or a school in a district or an entrance around the side or a restroom far away from the main bathroom. 

Because we do not value kids with disabilities (as much, say, as we value athletes) we don't think of a one time expense to make something accessible, instead, we unthinkingly spend huge sums every year to work around inaccessibility or fix things that should have been done better in the first place. 

The Americans with Disabilities Act (ADA) has moved this country toward but not to universal design. Universal Design is the result of inclusive thinking, not compliance. Our board member, whom I really do respect and value for her service, assured me that the new pool construction will comply with ADA. This is minimally reassuring. Because the district has not thinking about including students with disabilities but about minimum requirements. 

Here is an example of the impact of this kind of thinking. Our district (under a consent decree, mind you) put in new, more accessible play structures (YAY!). Then put these  on wood chips instead of mats. When families with children with disabilities pointed out that children with mobility disabilities could now not reach the new accessible structures (OOPS), the district responded that it was too expensive to fix. Parties then went back to court, the district lost and now has to rip out the structures and put in mats. Granted it would have been easier (and cheaper) to do it right the first time, but... they were thinking minimum compliance, not inclusion. 

Why? Why spend all this money for a few kids with special needs? 

Uhm, how big IS that water polo team anyway? 

Funding Disabilities

I am in New York on business. Miss my kids. 

And wow, am I tired of writing about Assistive Technology. If I had a magic wand, I would make all that magically better and move on. But, respite is essential, and I am taking respite from the topic. 

I came across a lovely article in a local Brooklyn rag about funding challenges for a local organization serving people with developmental disabilities-- The Guild for Exceptional Children. This after a conversation with a very good friend about AT and the need to develop more developmentally appropriate software that interfaces with the My Tobii eyegaze system... to which he suggested with the sweetest intent: there must be foundations out there that would take that on. 

It seems particularly ironic with this article in the paper today. And parents of children with disabilities know it just ain't so. There is not much money in services for disabilities. Not much of a market for specialized products like the My Tobii or the ECO. More attorneys work for districts blocking children's IEPs than work for children to secure their rights. It is always, all about money. Why should your kid go without so that my kid, who clearly will not amount to anything, should get a really fancy computer that helps her add and read Clifford? THAT is friggin' socialism. BAD.... bad socialism. YAY survival of the fittest.  (Sorry, listening to Sean Hannity today in the cab at about 80 decibels bent me out of shape).

The thing is, it is easy, so easy for the right to say that every one has a right to life, but not so easy to say that everyone has a right to quality of life. Quality ain't cheap. Quality for everyone is socialism.

Here is my final, line in the sand, quid pro quo: I will concede to restrictions on abortion. Really, I will the instant, the very instant, that  medical care, food, shelter and water and care by highly-qualified providers are the legally protected rights of EVERY child who has taken their first breath in our great nation, including every child with a disability. 

Is that so much to ask? Just a little socialism, Sean. For the kids. 

Robert's Park a Model of universal design

Every week I try to post info about a local outing that is friendly to families like ours that have typical and disabled kids. 

Robert's Regional Park in Oakland, California is worth a field trip, even if you are out of the immediate area. Rosemary Cameron of EBRP told me about the new play structure at Robert's while we were discussing accessibility issues during a frustrating visit to Black Diamond mines (not accessible, once you get out of your car in the handicapped space in the parking lot.)

But I went over to Robert's this morning on a reconnaissance visit on her recommendation and as I stood at the top with my daughter's service dog, I got choked up. Seriously, I was embarrassed to have tears in my eyes. But there it was. 

If you, like we, have been to so many places and had to sit with your disabled child on the sidelines and watch others run off to play, you might too. 

The structure is built on the hill and there is a long graded approach to the area. The whole thing has deep rubber mats below and full ramp access to the top. Accessible slides and a modified climbing wall. All the signs have Braille and inscribed alphabet signs and can be read by touch. There is even a cradle swing for big kids. If you want to spend the day, there are picnic grounds. The pool is accessible as well, according to Rosemary, though it was closed while I was there. 

All I can say is thank you EBRP! This park is a model for the nation. If you want to play, you should go. If you want to see how all parks should be built, you should go. If you are a superintendent or a board member, please go. Landscape architect? Go. Park Board member? 

Well, you get my point. 

That's where we are getting ready to go, right now. 

Accessibility in Yosemite

Two weeks ago I went to Yosemite with my mother, who has Parkinson's. It was her Christmas wish to visit Yosemite in the winter-- a place she had spent many happy hours in her youth but never seen in snow.

Here is my rundown on accessibility in our flagship national park, revised based on experience. Ironically, when I asked about accessibility I was told by a staff member who had clearly been trained to respond to this, "As a national park, we are a federal government agency and comply with all aspects of the Americans with Disabilities Act."

With over 4 million visitors a year, many of these foreign nationals who come from countries with no legal status or protections for persons with disabilities, Yosemite is an opportunity to show the world a particular American strength: Universal Design.

For all the urbanization, YNP falls sadly short of the vision of ADA. Just like home, urban does not equal accessible.

F: YOSEMITE LODGE AT THE FALLS
F: PARKING/ENTRANCE WALKS: The handicapped parking is located across the bus loading drive-through from the entrance to the lobby, and the curb cuts take one across a wandering path with no cross walks. At one point we started through one curb cut to cross the street and had to look for the other, which was located diagonally across but not marked. The handicapped entrance is what my brother in law Jim used to resentfully call a "servants entrance" about a 50 yard detour away from the front steps up a ramp that is out of sight of the public. The Awahnee entrance is much better.

F: WALKWAYS: It had been snowing when we arrived, and while the stairs and walks for the general public were shoveled, the ramps and curb cuts were not. When checking in with my mother (in her chair) I explained that we needed a room we could access (I was thinking ahead of the snow). The nice young man at the counter assured me this was and sent us across the road, through a parking lot and down snow covered walks to a room several hundred yards and a few snow banks away. We came back and requested a different room. When I suggested we should preview the room to see if we could actually get there, he was less than helpful. The rooms are all located in separate outside buildings with few covered walks, so shoveling is essential. I crossed several areas by running my mom's chair at full speed through the snow and shoveled our own walks into our room.

D ROOMS: One can reserve an accessible room, which we did not because the only accessible rooms have only one queen bed and a roll away and like people with a disability, we were traveling with children. The regular rooms are completely inaccessible, the doors to the bathrooms are to narrow even for a walker. The showers are inside standard tubs and there are no grab bars anywhere.

C CAFETERIA: The chairs are too close in the dining room. No one offered assistance, in spite of the fact that we clearly needed help. Many things are too high to reach.

BIKE TRAILS AND ACCESSIBLE TRAILS:
B+: The new trail to the Yosemite falls bridge is very nice, as is the valley floor trail from the lodge into the meadow. The only issue we had is, once again, the curbcuts from our rooms were missing, so that we had to take a long detour to then roll through the parking lot before we could find an accessible entrance to the trail. Everyone else? Cross the street in a cross walk. BOOO.

AWANHEE:
B+: We went here for dinner one evening. Surprisingly, this historical landmark was the most accessible in the park. We did not see the rooms, however. In spite of the fact that the only accessible bathroom was up the elevator (unpleasant but not uncommon.) There was an accessibility map in the lobby, unlike in the lodge, showing where all the accessible trails and restrooms are. The staff were respectful and helpful, a difficult balance to strike, in my experience. Even in the national parks, It is good to be wealthy, especially if you have a disability.

BADGER PASS:
F: Now, if you have not a disability yourself, you might say a ski area does not need to be accessible (which this is absolutely not- stairs everywhere, no ADA bathroom, and of course, snow and no covered walks). We did not even find ADA parking. But if they offer adaptive ski lessons (call two weeks ahead)- don't you think they would make the lodge and ski school accessible? Good thing my mom opted not to come up and instead hung out at the lodge napping and drinking hot chocolate. Too bad she did not get to see her grandchildren ski. It would have been nice if she could have hung at the ski lodge and watched from the window.

CURRY VILLAGE:
F: We could not even get into Curry, due to the snow. Or the ice rink (again, she wanted to watch her grandkids skate for the first time). I'll have to go back in summer to evaluate this part without snow.

SHUTTLE BUSSES:
C: Thank goodness they have kneeling busses. And wheelchair spaces. The driver was very nice- always a plus. Unfortunately, she did not know how to use the wheelchair tie downs, and when I showed her how she explained that she had asked when they were trained on these new accessible models and the trainer told her she did not know how herself, and did not think it was important! How lame is that? The park service invests in new ADA compliant busses and then does not properly train the drivers in their use.

So, for all the urbanization of this natural wonder, there is little to recommend it in terms of accessibility. That is a shame. So much of the development in the park is to make it seem more familiar, less strange and wild-- really to make it seem more accessible to the masses of able bodied people. It is tragic, in my opinion, that this development has made it more like home and less of a natural wonder, a place to connect with the serene, the tranquil, with wild. I have always resented the intrusion of fast food, ATMs, markets full of fake indian goods made in other countries, many low quality restaurants that highlight the worst genres of American food. I would resent it less if the city were actually were accessible, because at least accessible development would be for the purpose of making Yosemite the experience that Muir and Roosevelt meant it to be, a "tonic for the soul", instead of simply familiar in all the worst ways.