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.

Regional Centers Denying services

Seems like everything I say, write and think about lately starts with "in the current economic climate..." but the truth is little has changed for my kid at school or in the regional center. For five years, Regional Center has denied Augmentative Communication services and devices for my child at home. This year, they may provide them. It seems like they should have all along, under the Lanterman Act. That is also what Protection and Advocacy described in a Q&A for families. 

A friend and local advocate shared this thought with me:

"Now more than ever the process involves getting the denial in writing and then appealing it.  Every family is being asked to take a cut in services and only those that appeal are even getting consideration.  It's wrong, very wrong, but that is how the RC is operating currently.  Complaints to the Client's Rights Advocate at Disability Rights California (formerly PAI), should be copied to the case manager, the supervisor of the unit, and, in Concord, Ella Liggins, the Associate Director of Consumer Services.  In the main office in Oakland,  Pam Thomas is the Director of Consumer Services, and the Executive Director of RCEB is Jim Burton.  I recognize that it is a few extra copies to send but until the RC gets the message that parents are not going to stand for unreasonable cuts, it may be necessary.  Another critical part of this process is to be certain that all services are written in the IPP.  While this sounds like a given, many parents have discussed services with the case manager and they have never been transferred to the IPP. It sounds simple but it is not always done."

PECS is old school

I was talking with a colleague who is getting her special ed credential, and she was explaining that in her program they were teaching her about PECS. She was so excited about this as a way to communicate. She was excited, and I was...

furious. 

PECS is so last year! I mean, sure it is a good early intervention, a great way to assess communicative intent and ability, but why are preparation programs and schools STILL focusing on low tech and no tech communication? 

Because these interventions are nearly free. Sure, inadequate, inappropriate. But free.

You think PECS is enough? OK. Act of imagination. Go through a whole day without talking. The only thing you can use to get your ideas across is little cards with pictures. 

After your experiment, go read about dynamic speech generating devices from PRC, My Tobii and Dynavox. 

Kids who are using PECS are AAC users. IDEA protects a child's right to assistive technology, including AAC. And not just cheap, no tech Assistive Technology. Appropriate assistive technology. 

PECS is a great temporary early assessment and intervention. But it is really old school.

AAC IEP issues and goals

Life here has been so busy, I have not gotten back to my blog in awhile. A couple of great comments about the last post helped me to decide to post my daughter's goals. While every child has specific goals that are relevant to the IEP, there are some common things to keep in mind.

All equipment should be listed on the face sheet of the IEP under Assistive Technology. Here's my kid's list

• Big Mac switch
  
• Step By Step switch with levels
  
• talking photo books
  
• My Tobii
  
• Head wand (for painting)
  
• Desk Top PC 
  
• soft ware: classroom suite, etc. 
  

AAC services are a related service and should be listed with other services like speech and OT.
AAC users often have a team of providers. Here is my kid's team:

• 1:1 aide 5/days a week, 405 minutes a day (with listed competencies: willingness and ability to learn AAC devices and PC systems, skilled communication partner)
  
• Occupational therapy 70 minutes per week (30 individual to assist with access and positioning, work at computer.)
  
• physical therapy consult (to assist with seating, mobility, trunk stability, positioning and mobility)
  
• AAC services 40 mins per week individual, 800 minutes per week group and consult.
  

Another issue for IEPs is that the goals have to match up to academic goals AND justify the device:

Augmentative and Assistive Communication (AAC) Goals for Student 2008
Due to severe apraxia associated with the diagnosis of Rett Syndrome, Student is non-verbal and is not expected to recover speech functions. Student understands conversational speech appropriate to her age according to her AAC assessment (Buzolich, 2008). Student has limited hand use and cannot use sign language or exchange pictures using her hands although she is able to select icons using her eye gaze. Student is a multi-modal communicator, using vocalizations, gestures, proxemics and aided communication with both no and low- tech devices. She began using an eye gaze accessible high tech device in September of 2008. (See IEP face sheet for equipment list). She needs more aided communication opportunities.

Student’s 2008 goals focus on building two areas of her vocabulary, core (high frequency, low content) vocabulary and thematic (fringe) vocabulary (nouns, new concepts and vocabulary introduced in instructional units). . The vocabulary selected for Student’s core vocabulary is based on clinical research that identified high frequency words used by all people across all contexts. The first one hundred core vocabulary words for school aged youngsters are:

I The To And A It Is
Was That In Of My You Yes
For Have Like Me Do On People
But Know With They What Am Be
Don’t At He We Think One Because
So When No Just About Had Words
Are I’m Not Well How Them It’s
Or Time Would Going Will Use This
There Work Say From Go Got Can
More Need Some Want Years All Help
She Then As Get If Most Now
School Which Who Out Their Actually Could
Device First Word Been Better Different Really
Things Two Did however

1.http://www.aacinstitute.org/Resources/ParentsCorner/SharingAndIdeaAlbum/Vocabulary/Core_Vocabulary_Presentation.pdf

Conversational language

Present performance related to annual goal: When given opportunities, Student uses social scripts recorded on her Step-by-Step and selects picture icons using eye gaze to participate in conversations with skilled partners, completing up to six two way communications in sequence. She selects single word icons in response to questions about who, what, when and where.

Goals and objectives
Annual
By June 2008, Student will use a core vocabulary of 100 words using her eye-gaze accessible aided communication systems including her high tech device to establish joint attention with her partner by requesting information (asking questions, requesting help) and relaying information about her feelings, the environment, or sharing a personal experience.

Criteria and documentation
80% accuracy
Work samples, Records of AAC specialist’s, teacher’s and aide’s observations

Academic Language
Present performance related to annual goal Student’s academic vocabulary is limited compare to her conversational vocabulary and her receptive language. Student needs exposure to rich and engaging academic content appropriate to her age and eye-gaze accessible speech generating device that will allow her to access all of her vocabulary independently and further develop linguistic competence.

Goals and objectives
By June 2008, Student will use a curricular based vocabulary of 100 words using her eye-gaze accessible aided communication systems including her high tech device to participate in math, Science and English Langauge Arts adapted (regular) curricular with a skilled communication partner. 80%
As measured by
Work samples, Records of AAC specialist’s, teacher’s and aide’s observations


The table below lists some academic vocabulary commonly found in textbooks. Select vocabulary from the list below and add to the list if necessary. Highlight words that Student has mastered.

Academic Vocabulary
© Jim Burke Visit www.englishcompanion.com for more information. Teachers may copy for classroom use.

A thorough survey of various textbooks, assignments, content area standards, and examinations yields the following list of words. You cannot expect to succeed on assignments if you do not understand the directions. The words fall into several categories, which are not identified on this sheet: nouns (e.g., What
you read or create); verbs (e.g., What the assignment asks you to do); adjectives (e.g., specific details about what you must do); and adverbs, which provide very important information about how to do the assignment. See the table below for a list of Jim Burke’s academic vocabulary.

1. abbreviate 2. abstract 3. according 4. acronym 5. address
6. affect 7. alter 8. always 9. analogy 10. analysis
11. analyze 12. annotate 13. anticipate 14. application 15. apply
16. approach 17. appropriate 18. approximate 19. argue 20. argument
21. arrange 22. articulate 23. aspects 24. assemble 25. assert
26. assess 27. associate 28. assume 29. assumption 30. audience
31. authentic 32. background 33. body 34. brainstorm 35. brief
36. calculate 37. caption 38. category 39. cause 40. character
41. characteristic 42. characterize 43. chart 44. chronology 45. citation
46. cite 47. claim 48. clarify 49. class 50. clue
51. code 52. coherent 53. common 54. compare 55. compile
56. complement 57. complete 58. compose 59. composition 60. concise
61. conceive 62. conclude 63. conclusion 64. concrete 65. conditions
66. conduct 67. confirm 68. consequence 69. consider 70. consist
71. consistent 72. consistently 73. constant 74. constitutes 75. consult
76. contend 77. context 78. continuum 79. contradict 80. control
81. convert 82. convey 83. copy 84. correlate 85. correspond
86. credible 87. credit 88. criteria 89. critique 90. crucial
91. cumulative 92. debate 93. deduce 94. defend 95. define
96. demand 97. demonstrate 98. depict 99. derive 100. describe
101. detail 102. detect 103. determine 104. develop 105. devise
106. diction 107. differentiate 108. dimension 109. diminish 110. direct
111. discipline 112. discover 113. discriminate 114. discuss 115. distinguish
116. domain 117. draft 118. draw 119. edit 120. effect

Requesting an AAC assessment

This is the stance that earned me the title militant mom: Communications with schools are court admissible evidence and IEPs are legal contracts. 

 I learned from experience that a potential audience for every communication with our school district is the Office of Procedural Safeguards at the California Department of Education. So while I do try to keep the letters civil and polite (why not?) I also make sure they let the district know I know my child's rights, and they have all the i's dotted and t's crossed.  Not that I want to go to court or file complaints, everyone loses when we do. But when the district knows that we know we can, and will, they are more likely to serve and we are far less likely to go. 

The squeaky wheel gets grease, and my district trained me to squeak. 

Below is a template I wrote, based on our letter requesting assessment for a couple of local families who find their child in the position ours was two years ago-- in a district that made conflicting claims: this child was not an AAC candidate, and the district is happy to keep experimenting with PECS and sign. 

An AAC user fits this profile: receptive language higher than expressive langauge + intent to communicate. News flash: non-verbal children who use PECS are AAC users. These children have a right to assistive technology under IDEA.

That is just about all kids with autism. They should be assessed by a qualified provider. 

Districts are not so excited about this. Why? PECs and sign are practically free (especially compared to dynamic speech devices) and about the only thing most speech therapists know and are trained in (getting a device and a full AAC system requires an AAC specialist, another expensive service). 

 We need to build knowledge of and demand for these services. They make all the difference. Our daughter went from her preschool goals and curriculum to second grade curriculum in a few months, once she had a device and support to use it. Here is the template:

____________________________________

[Your address here]

District Contact (principal, program specialist, etc)
District address

RE: REQUEST FOR ASSESSMENT
Child’s full name
Date of birth
School of attendance and grade level

DATE

Dear [insert district contact name here]

Under the Disabilities in Education Act of 2004, my child has a right to devices and services which allow her to access the educational curriculum in the Least Restrictive Environment (20 U.S.C. §1401(a)(25,26); 34 C.F.R. §300.308) (34 C.F.R. §300.308). This includes Augmentative and Alternative Communication (AAC) devices and services.

Our daughter has a diagnosis of Rett Syndrome, which causes severe apraxia. She therefore has effectively no use of her hands and is non-verbal. The prognosis is that she will not recover speech or hand functions with therapies.

Because our daughter uses {insert examples of her communication here, such as , proxemics/going to the thing she wants, sign, picture ions, gestures/pointing, reaching; utterances) to communicate we know that she has higher receptive than expressive language. She is by definition an AAC (American Speech Langauge-Hearing Association).

Because of her prognosis and the difference between her receptive and expressive abilities, her current systems limit access to her range of language and vocabulary. Further, her current systems require her to access communication with her hands, which is inappropriate to her diagnosis. Her current AAC systems are therefore inappropriate for her educational needs and inaccessible due to her diagnosis.

We request a medically based AAC assessment from a qualified outside provider.

We understand that you will send us an assessment plan that describes who will provide the assessment and how it will be completed. We also are aware that you have sixty days to complete the assessment and look forward to hearing from you soon.

Sincerely,




The parents of (insert your child’s full name here)

Assistive Technology- fight for promise

I thought it might be useful for folks to post the story of our fight for our child's right to speak. A three year legal battle with our school district that almost cost us our home, but finally resolved with her having a device, a qualified support provider and an appropriate placement. 

First a little history and some definitions.

Assistive Technology is any tool or device that will help a person with a disability perform a task that is impacted by the disability. Assistive Technology (AT) can be very simple (braille, pencil grips, slant boards) to very complex (standers, motorized wheel chairs, voice activated computers or switches). A sub-specialty in AT is Augmentative and Assistive Communication (AAC). This branch of AT can include:

•  "no tech" supports (like sign language, visual schedules and cards with Icons and words, some times called PECS- Picture Exchange Communication Systems) 
  
•  "mid-tech" or "light tech" (single switch battery operated switches that can operate simple machines or communicate with pre-recorded messages) and
  
•  "high tech" (dynamic speech generating devices that allow the user to select a wide range of vocabulary and create their own messages).
  

Since our daughter is aphasiac, we thought AAC was a natural option to explore. Would she be able to communicate with a device? She used everything else we gave her-- sign langauge, PECS, yes and no cards. It was clear she wanted to communicate. 

Unfortunately our school district fought us every step of the way. It is helpful to know what arguments do not work, legally. First they claimed she was too cognitively impaired to use AAC. 

AAC is appropriate for people with mental retardation (the legal term, not mine) including those with Down's Syndrome, Fragile X and other diagnoses. 

Then they claimed that she was not able to use a device because she was unable to access the switches with her hands. In trials, she was not able to demonstrate accuracy.

AAC devices now exist that allow users to use head pointers and eye gaze. Our daughter uses a My Tobii, which works solely on eye gaze. She also was able to use a Vantage by PRC which works by head pointing. (The Tobii is easier). 

Since having her device she has gone from answering simple yes and no questions as her main form of communication to writing poems, short journal entries, current events summaries and doing up to 20 math problems at a time. She is doing grade level work for the first time. She can use a screen with up to forty icons at a time and navigate between pages. 

To get this done, we had to file a compliance complaint with our state office of education. They found in our favor: our district refused to provide an assessment (the legal time limit under IDEA is 60 days, they waited 2.5 years by the time we filed) refused to hold an IEP about placement, refused to provide equipment listed in the IEP. These are all protected rights under IDEA. Finally they refused to comply with the corrective actions ordered by the state-- a staggering reaction-- and we got an attorney. 

It took a second mortgage on our house and a lot of beans and rice and oatmeal, but we prevailed. She has a device, a classroom, a qualified AAC specialist and so do five other students in our district. 

Our child was served, but I know of several families in our district who are fighting the same battle. 

Today I am posting new resources related to AAC and AT. These make the difference for many students between warehousing and education. It is worth the fight. It is their right.