Monday, December 7, 2009
For more information on Rett Syndrome and IRSF, click here.
Wednesday, November 4, 2009
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!
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.
Saturday, October 24, 2009
Member Case Resolution Center
4480 Hacienda Dr., Building B, 4th Floor
Pleasanton, CA 94588
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.
Monday, September 14, 2009
Monday, August 24, 2009
Monday, August 17, 2009
- Tell us how her disability impacts her education.
- What supports and related services does she need that we might not see on her IEP?
- What assistive technology does she need?
- What equipment will we need to get to be ready for her?
- Does she have any durable medical equipment at school that we will need to provide?
- What modifications will we need to make to the classroom to make it accessible and appropriate for her?
- Does she own her device or will we need to purchase one?
- What training will we need on her equipment, and what is the best resource?
- What training does the staff need prior to her arrival?
Friday, August 7, 2009
Monday, August 3, 2009
Thursday, July 30, 2009
Wednesday, July 29, 2009
Thursday, June 25, 2009
Monday, June 8, 2009
Sunday, June 7, 2009
Thursday, June 4, 2009
Popular films such as Das Erbe ("Inheritance") helped build public support for government policies by stigmatizing the mentally ill and the handicapped and highlighting the costs of care. School mathematics books posed such questions as: "The construction of a lunatic asylum costs 6 million marks. How many houses at 15,000 marks each could have been built for that amount?" (emphasis added).
Nazi Germany was not the first or only country to sterilize people considered "abnormal." Before Hitler, the United States led the world in forced sterilizations. Between 1907 and 1939, more than 30,000 people in twenty-nine states were sterilized, many of them unknowingly or against their will, while they were incarcerated in prisons or institutions for the mentally ill. Nearly half the operations were carried out in California.
Yes, I am my brother's keeper. I am under a moral obligation to him that is inspired, not by any maudlin sentimentality but by the higher duty I owe myself. What would you think me if I were capable of seating myself at a table and gorging myself with food and saw about me the children of my fellow beings starving to death."
Tuesday, June 2, 2009
- These services are so hard to get, I can't imagine fraud waste and abuse in the system. If there is, you risk killing the patient trying to excise the last of the cancer. Seriously, how much more can you spend trying to prevent unnecessary expenditures?
- Second, charity and generosity are neither if they are given with resentment and used to shame the recipient. Generosity and charity exalt the giver and the receiver. That which you do unto the least of these...
- Third, and most importantly, programs for the disabled are not built by generosity, they are built by wisdom. You are likely to need these one day.
Wednesday, May 27, 2009
Sunday, May 24, 2009
Wednesday, May 13, 2009
Sunday, May 10, 2009
Thursday, May 7, 2009
- keep a sense of humor: raising a child is life in the theatre of the absurd. laugh. cry when you need to and laugh a lot.
- keep a united front: the outside world can be rugged. be each other's champions
- keep asking for help: don't be to proud to use all the public and private resources you can, raising a special needs child is a marathon, and an expensive one. You may be doing this for a long time, and without help, the task can easily outstrip your financial, emotional, spiritual and physical resources.
- take breaks. with each other, with your other kids, alone, with friends. build a community and let them refill your cup. refill theirs as well. make friends before you need them.
- build a marriage team. Know which of your friends are also friends to your marriage. talk with them when it gets to be to much so that you have a safe place to vent, talk and problem solve.
- know when to slam a door and when to let things go. apologize. forgive.
- know when to get help or even to walk away: our pediatrician told us when we were spending hours walking a "colicky," inconsolably sick child that colicky babies are often abused. The same goes for children with very challenging behaviors. Protect yourself, protect your child. Get help, get away, get out before anyone gets out of control
Friday, May 1, 2009
I expect to pass through this life but once.
If, therefore there can be any kindness I can show or any good thing I can do
for any fellow being let me do it now...
Let me not defer it, or neglect it,
For I shall not pass this way again.
Stephen Grellet (Etienne de Grellet du Mabillier)
Thursday, April 30, 2009
"But what if a student has more time than that specified in their IEP?"
An administrator replied:
"Families will be called for an IEP meeting and the IEP will be revised. And if parents disagree, we'll see what happens then..."
What recourse do parents have? File a complaint? Go to hearing? Give in?
Who has the lawyer on retainer and who is busy raising a child with special needs?
It just is unfair bullying. In my personal opinion, that is nothing short of reprehensible.
In case you need to know, here is what the CA Ed Code actually says on ESY. (The section G1 on qualifying for Average Daily Attendance is important, we think.)
5 CCR 3043 - Extended School Year Services
3043. Extended School Year.
Extended school year services shall be provided for each individual with exceptional needs who has unique needs and requires special education and related services in excess of the regular academic year. Such individuals shall have handicaps which are likely to continue indefinitely or for a prolonged period, and interruption of the pupil's educational programming may cause regression, when coupled with limited recoupment capacity, rendering it impossible or unlikely that the pupil will attain the level of self-sufficiency and independence that would otherwise be expected in view of his or her handicapping condition. The lack of clear evidence of such factors may not be used to deny an individual an extended school year program if the individualized education program team determines the need for such a program and includes extended school year in the individualized education program pursuant to subsection(f).
(1) Are placed in special classes or centers; or
(2) Are individuals with exceptional needs whose individualized education programs specify an extended year program as determined by the individualized education program team.
(1) A maximum of 55 instructional days excluding holidays, shall be allowed for individuals in special classes or centers for the severely handicapped; and
(2) A maximum of 30 instructional days excluding holidays, shall be allowed for all other eligible pupils needing extended year.
(1) Extended year special education shall be the same length of time as the school day for pupils of the same age level attending summer school in the district in which the extended year program is provided, but not less than the minimum school day for that age unless otherwise specified in the individualized education program to meet a pupil's unique needs.
(2) The special education and related services offered during the extended year period are comparable in standards, scope and quality to the special education program offered during the regular academic year.
[Authority cited: Section 56100(a) and (j), Education Code] [Reference: Sections 37600, 41976.5 and 56345, Education Code; and 34 CFR 300.346]
Sunday, April 26, 2009
Friday, April 24, 2009
Tuesday, April 21, 2009
Monday, April 20, 2009
- Emma needs: a new chair, new leg braces, a lift for the van. That means a huge logistical nightmare with Kaiser, MediCAL and Regional Center. If you read my post about the potty chair, you might understand why this drives me literally to tears.
- We are traveling by plane this summer to the farm to see family, and I have to arrange wheel chair, changing planes, and getting liquid food supplements through TSA before we go. That is end of June, so I am late getting started.
- Emma's trazadone is not working so well, and we need to switch meds. This requires a neurology appointment and careful coordination so we are not switching mid trip (above) should I start now or wait. She is waking up every day at 4AM- I wish we could start now...
- She needs new clothes. This is a major ordeal. I need to plan a weekend day when I can have a babysitter for her sisters so her dad and I can go with her to the mall-- it takes two now.
- I need a lift for the van. 80 lbs is past my limit.'
- We need to go to the mobility dealer and see what our options are. Crap- our van has like 120,000 miles on it. Do we need a new van too? How are we going to do all this.
- we have an appointment for the new chair fitting on May fifth. I have to put in for a day off. Husband too. Oh my gosh, will we have a new chair for the trip? AUGH- we have to rent a full size van -- oh, it won't have a lift. I wonder if she will fit her carseat still.
- we need a new ramp in the back yard, it is too steep and she just fell down it.
- she needs a ramp and deck around her make a wish tub.. we can't lift her in anymore.
Friday, April 10, 2009
- 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."
Wednesday, April 8, 2009
The first thing to do is to make sure you understand your child's rights and the district's responsibilities. These can be found in the flyer your district gives you at every IEP and also online in the Parent's Rights documents (various translations are also online).
Here is what the law says about assessment rights under IDEA. (this is quoted from the Notice of Procedural Safeguards):
Nondiscriminatory Assessment How is my child assessed for special education services?
- You have the right to have your child assessed in all areas of suspected disability. Materials and procedures used for assessment and placement must not be racially, culturally, or sexually discriminatory.
- Assessment materials must be provided and the test administered in your child’s native language or mode of communication and in the form most likely to yield accurate information on what the child knows and can do academically, developmentally, and functionally, unless it is clearly not feasible to so provide or administer.
- No single procedure can be the sole criterion for determining eligibility and developing FAPE for your child. (20 USC 1414[b]–, 1412[a][B]; 34 CFR 300.304; EC 56001[j] and 56320)
Independent Educational Assessments May my child be tested independently at the district’s expense?
- If you disagree with the results of the assessment conducted by the school district, you have the right to ask for and obtain an independent educational assessment for your child from a person qualified to conduct the assessment at public expense.
- The parent is entitled to only one independent educational evaluation at public expense each time the public agency conducts an evaluation with which the parent disagrees.
- The school district must respond to your request for an independent educational assessment and provide you information about where to obtain an independent educational assessment.
- If the school district believes that the district’s assessment is appropriate and disagrees that an independent assessment is necessary, the school district must request a due process hearing to prove that its assessment was appropriate. If the district prevails, you still have the
- right to an independent assessment but not at public expense. The IEP team must consider independent assessments.
- District assessment procedures allow in-class observation of students. If the school district observes your child in his or her classroom during an assessment, or if the school district would have been allowed to observe your child, an individual conducting an independent educational assessment must also be allowed to observe your child in the classroom.
- If the school district proposes a new school setting for your child and an independent educational assessment is being conducted, the independent assessor must be allowed to first observe the proposed new setting. (20 USC 1415[b] and [d][A]; 34 CFR 300.502; EC 56329[b] and [c])
- This notice must be given when the school district proposes or refuses to initiate a change in the identification, assessment, or educational placement of your child with special needs or the provision of a free appropriate public education. (20 USC 1415[b] and (4), 1415[c], 1414[b]; 34 CFR 300.503; EC 56329 and 56506[a])
- The school district must inform you about proposed evaluations of your child in a written notice or an assessment plan within fifteen (15) days of your written request for evaluation. The notice must be understandable and in your native language or other mode of communication, unless it is clearly not feasible to do so. (34 CFR 300.304; EC 56321)
What will the notice tell me?
The Prior Written Notice must include the following:
1. A description of the actions proposed or refused by the school district
2. An explanation of why the action was proposed or refused
3. A description of each assessment procedure, record, or report the agency used as a basis for the action proposed or refused
4. A statement that parents of a child with a disability have protection under the procedural safeguards
5. Sources for parents to contact to obtain assistance in understanding the provisions of this part
6. A description of other options that the IEP team considered and the reasons those options were rejected; and
7. A description of any other factors relevant to the action proposed or refused. (20 USC 1415[b] and , 1415[c], 1414[b]; 34 CFR 300.503)