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. 

Comprehensive Diagnostic Centers

Finding someone qualified to do an AAC assessment for our non-verbal, severely apraxic child was a huge hurdle, and the thing that slowed her services down most. In the three years of attempting to get an AAC assessment, no one on my child's IEP team or in the Alternative Dispute Resolution group told us that the California Department of Education has special diagnostic centers.

The centers provide technical assistance, support, case planning and ASSESSMENTS. Referrals must come from the district, SELPA or LEA-- but you can ask request that the district make the referral. (In writing, formal request for assessment, etc.)  There are three centers: Fremont, Fresno and LA, so for most people this referral will involve some travel. But might be worth it. I know a child who received a very good AAC assessment from the Fremont center. From the Diagnostic Center website: 

Services include:

• Comprehensive, state-of-the-art assessment and educational planning services to assist local school districts (LEAs) in addressing the needs of their most complex special education students
  
• Technical assistance and consultation in program and instructional design and delivery
  
• Professional development opportunities for teachers, administrators, special education staff, families and service agency personnel
  

Eligible students are those students who:

• are enrolled in special education,
  
• are not progressing despite LEA efforts,
  
• present a complex learning or behavioral profile, and
  
• for whom the LEA requires additional diagnostic information to assist in defining appropriate educational goals and teaching strategies.
  

Although it would feel so good to go on a rant about WHY no one in my district volunteered this information or suggested this referral, I am not going to and instead just pass along the lesson learned. Hope it is useful. 

AAC assessments

What should an AAC assessment include? How do I know if my child has had an appropriate assessment. This site at YAACK has a great description of what should be included in an AAC assessment and some links to other sites for protocols and tools for assessments. Go check it out, then share your ideas and experiences. I know some of the hard mistakes with my child's assessment were:

• positioning and support- they were often running trials with chairs and other equipment that did not support her, so she was wiggling and stimming and not able to access the speech device. 
  
• access- it took a long time to narrow her access method to eye gaze. for a long time, they wanted to stick with scanning and head pointing, both labor intensive and frustrating for my kid. 
  
• low balling-- the district wanted to stay always with whatever the lowest cost solution was. often these were so unmotivating or so in accessible that they made my kid look less capable. once we got her on the right equipment with the right supports, she took off. 
  

I want to make this short so you click the link above. YAACK is great, and there is no point me recapitulating their great work here. 

Well, go on ...

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)

Militant Moms

I was recently at a gathering of families of children with Rett Syndrome. My daughters' pediatrician introduced me as "our most militant mom, who managed to get an AAC program for her daughter." I laughed and then inwardly bristled. I've spent the weekend reflecting on that comment, offered I think, as a compliment.

I finally decided I felt saddened by this perception of militancy. First, I don't want to be unnecessarily aggressive, I am a teacher educator myself and value teachers and public schools. It is a noble enterprise that I value above measure. Public education is one of our most important civic institutions, along with the courts and the legislature. At least in my mind.

Not to mention that I am a boderline pacifist. At least a strongly committed diplomat. 

Militant? 

Militant? All I have done is used the legal tools that are my right to use as a citizen. I've used them not to extend my right to dump toxic chemicals into my local river, or protect myself from lawsuits related to dangerous products I made for children, but to ensure that my child's school complies with the law and appropriate education. If anyone wronged another in this case, if any one was doing harm, committing violence, it was not me or my child. So why am I considered militant? This image of me as the agressor was painful, especially coming from a friend and fellow advocate for children. 

When schools deny or attempt to obscure children's rights that are protected under the law,this drives parents to use the law to assert those rights. To label this fair use of the law, which often requires enormous resources that families do not have, as militant, connoting that parents are the ones with a vast army, a huge budget, organization and  dangerous tools is further obscuring the issues and once again, making children with disabilities and their families the antagonist in this drama. 

Parents should not further internalize the negative connotations that go with the term militant. We are the protagonists, the heros of the story. The David against the giant. 

Certainly not militant. Simply assertive, brave, courageous, committed to our children, loyal...

Obama repeating NCLB mistakes?

One of the risks education faces is the same old, same old. Obama is so busy, what with a two front war, a great recession, and cleaning up the justice department that he does not have time to spec himself up on education. So, he appoints advisors whom he trusts and hears their point of view. 

Unfortunately, he is listening to Arne Duncan, a born again charter school believer. Some charter schools have done some real good, but we would do well to remember a few things: most do not conform to IDEA and the ADA with the same vigor that regular public schools do. No matter what they claim, they often tell parents that the regular public schools can do better job. (A polite and almost legal way of saying we don't take your kind here.)

But the real problem about listening to Arne is that he is just wrong about some things, and bending the truth about others to persuade us to his way of thinking. Ideas like merit pay for teachers, privatizing schools and tougher standards are straight out of the last administration. It is time for a new approach-- how about putting all that money into teacher professional learning instead of bribery, I mean merit pay? How about reducing the number of student contacts from 200 a day for high school teachers to maybe 65?

Personally, I'd be glad if we just started a conversation around the question: What is quality education for all? Instead of: How do we raise test scores? How refreshing would that be?

A friend forwarded this critique of Obama's education speech from Gerry Bracy. I hope it starts a conversation about truth in advertising, Mr. Duncan. And makes Obama think again about what he knows about education and what he needs to learn. 

Obama "talks about American kids being behind and his reference is obviously test scores. But then he talks about creativity in charters. But the NAEP (National Assessment of Educational Progress) studies indicate charters are behind public schools in test scores. You can't evaluate one set of schools by test scores and then another set of schools with another criterion. Public schools are just as creative (Eric Robelen, "NAEP gap continuing for charters," Education Week 21 May 2008). Duncan turned a lot of schools into charter schools in Chicago, but I don't think he ever came back to see if they were working any better.

By the way, being behind doesn't seem to matter--test scores don't related to global competitiveness. The U. S. is #1 as ranked by both the Institute for Management Development and the World Economic Forum.

"In 8th grade math we've fallen to 9th place." That's out of 45 nations. In TIMSS of 1996 (tests administered in 1995) 8th graders were in 23rd place out of 41. We've come a long way, baby. How come no one ever mentions that American kids do better in science than in math and no one EVER talks about how well they do in reading which is very well indeed? Various citations, too many to list and the one with the above stat is not online anyway, "Mathematics Achievement in the Middle School Years." It's only mentioned at the US HQ for TIMSS and PIRLS studies, http://isc.bc.edu. The reading studies, PIRLS (Progress in International Reading Literacy Study), CAN be found there.

"Just a third of our 13- and 14- year olds can read as well as they should." This is garbage in light of the international comparisons mentioned above. It is also garbage because the reference is obviously NAEP, and as I've shown over and over the NAEP proficiency standards are outrageously unrealistic. In fact, by the criterion Obama is using, no nation has more than a third of its students reading "as well as they should." Sweden, the top scoring nation also has about one third at NAEP's "proficient" level (Richard Rothstein et alia, "Proficiency for all: An Oxymoron"). "A Test Everyone Will Fail" shows this in an international context. I wrote that for the Post a couple of years ago. Just put title into Google. "Oh, those NAEP achievement levels." I wrote that for a publication of the National Association of Secondary School Principals for whom I write a monthly column. You can find it a bunch of places on line like www.nabe.org/press.Clips/clip110805.htm.

The Koreans might be in school a full month longer, but in PISA (Program of International Student Assessment), America has a higher proportion of top scorers than Korea. More to the point, given the size of America, America has more top scorers than any other nation. No one even comes close. We have about 67,000, Japan about 3,4000. Top scoring Finland's proportion gives them about 2,000 actual warm bodies. (Lindsay Lowell (Georgetown) and Hal Salzman (Urban Institute and Rutgers). "Making the Grade." Nature, May 1, 2008

There were some good things in the talk, but our president has bought too much of the same old crap about the state of our education, crap that has been spewed since 1957 (Sputnik), 1967 (urban riots--schools took the hit), 1977 (the SAT decline), 1983 (A Nation At Risk--followed by the longest economic expansion in history), 1998 (International test scores again), 2002 (No Child Left Behind) and 2008 (Edin08). In his inaugural address he said two thirds of the fastest growing jobs require extra education. What he didn't say was that those jobs account for very few jobs. For every computer engineer we need, Wal Mart needs 15 or so salespeople. Today he said "By 2016, four out of every 10 new jobs will require at least some advanced education or training." That's not what the BLS says. And what does "advanced education or training mean, anyway? It's a weasel phrase. By the way, we have about 3 newly minted, home-grown scientists and engineers for every new job in those fields and 65% of them leave those fields within 2 years of graduating (Lowell & Salzman, "Into the eye of the storm: assessing the evidence on science and engineering, quality, and workforce demand." www.urban.org/UploadedPDF/411562_salzman_Science.pdf).

I present a complete history of the continual and unfair criticism of schools in Education Hell--the Betrayal of American Schools which should be published next month.

Alas, the fear mongers--Bob Wise, Roy Romer, Bill Gates (who has said some REALLY dumb things), Craig Barrett, Lou Gerstner, etc., get the media attention. Guess it's cause they got the money. They certainly don't have the chops.

There's more, but I've probably overloaded you already. I'd be happy to chat about it. It's only 11:30 a.m. here.

Gerald W. Bracey
gbracey@q.com