When districts break the law...

I got a message from a friend that when thier district received a request for an outside AAC assessment, they denied it. Seems they think their assessment was (in the words of my friend) good enough for the kid. How frustrating, sad and infuriating. 

WHAT  NOW?

Whether or not you have a good relationship with your district, the sad truth is that districts do not always comply with IDEA, do violate the rights of children with special needs, and will wiggle with in the confines of the law to try to legally (but unethically) deny services that are difficult and expensive to provide. When this happens, and the problem cannot be resolved with simple, courteous communication with the district, there are processes and procedures in place that you should follow to protect your child.

ALL COMMUNICATION BETWEEN YOU AND THE DISTRICT IS POTENTIALLY LEGAL EVIDENCE for hearing.

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).

Quite likely you will read these and have more questions than you began with. That is good. Make a list. Then make a call: The Office of Procedural Safeguards (OPS) is there to help resolve problems in special education. Your tax dollars at work, and they work hard! OPS is a state agency that is little known but should get a customer service award. As a neutral party, they work with parents and districts; they really know their stuff and can often help resolve problems before they escalate. And when problems do escalate, they can help resolve them before parties go to due process. Which is good. When districts and parents go to court, everyone loses. Even if you win.

When you call OPS, explain that you are an unrepresented parent (that means you do not have an attorney for your child-- I'm assuming an attorney, if you have one, is answering your questions). Ask your questions, and they will help you to understand your child's rights and the district's responsibilities. If your district is violating the law (or in legal speak, "out of compliance") OPS will explain how to file a complaint, which will initiate technical assistance and monitoring of the district until the problem is resolved.

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][1]–[3], 1412[a][6][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][1] and [d][2][A]; 34 CFR 300.502; EC 56329[b] and [c])

Now, about the problem of refused assessment. When a district refuses assessment request, they must give Prior Written Notice within fifteen days. This is from the Notice of Procedural Safeguards from OPS: 

Prior Written Notice When is a notice needed?

• 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][3] and (4), 1415[c][1], 1414[b][1]; 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][3] and [4], 1415[c][1], 1414[b][1]; 34 CFR 300.503)

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 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)

IDEA- fund special ed!

The Right says we have a spending problem.  I agree. 

The problem is that the federal government is NOT spending it's legal share of funds on the IDEA (Individuals with Disabilities in Education Act). 

IDEA is the law that requires schools to provide a free and appropriate education to students with disabilities. Appropriate, in lay terms, means a kid not only gets to go to school, but they get to go and learn. 

Why do we have this law? In 1970, according to the IDEA website, only one in five children with disabilities were in school. Many states had laws barring children with disabilities from attending public schools, including children who were deaf, blind, emotionally disturbed and mentally retarded. It was simply expensive and states did not want to do it. 

They still don't. California has been shirking it's duty for years by funding the Cost of Living Adjustment for regular education teachers but not special education teachers. California does this because the federal government does not fully fund IDEA, and California does not want to make up the funding difference. 

That is why local districts pay so much for special education. IDEA requires every state to provide a free education to every child, even children with disabilities. 

The feds knew in passing IDEA that they would be adding enormous expenses to schooling. At the time, it was as radical a step as Brown V. Board of Education, desegregating schools, and a lot more expensive. It meant that kids in diapers, kids in wheel chairs, kids with feeding tubes, kids on ventilators, kids with diabetes, kids who needed computers, kids with all kinds of expensive, hard to figure out needs would be in school and have a legal right to the help and support they needed. And the hope was that they would do better, live better, even learn, that some would become more independent, cost less later and even make society better. Some would just do better, and that would be better too. 

Taking care of children with special needs is not only morally right, and preferable to most people than euthanasia and abortion, it is pragmatic. Children like mine, who cannot speak, may learn to use a computer. Sure, assistive technology is expensive. My kid's computer (a My Tobii) cost $15,000! But, she will never play sports, never sing in the choir, never play an instrument, never take driver's education, never hold a pencil or a paint brush, never go to the prom. (Maybe the prom, maybe!) But the computer!? On her computer my second grader is doing math, and reading, and writing for the first time! We don't know yet how much she can do, but no one knew she could read, or add, or even think.  She might be able to earn a living  or some of her living, someday. That means the money we invest in special education now means that our typical kids might not have to pay so much for so long to keep kids like my daughter once we are dead. And even if she doesn't to leave a whole human being who can read and think trapped in her body for forty years? 

Well, you decide. What would you do? What will you do? We have to decide what kind of society we want to build. Will we fund IDEA or not? If we won't fund it, we should just be honest and go back to the way it was. 

The alternative to IDEA is history: institutions, boarding schools, orphanages and doctors who used to tell parents to give up this child, forget you had her. Personally, I am proud of this vision. I can't go so far as to say my daughter's disability is a gift from a higher power to her or me, but I agree with right, she is sacred. And the left, she should have rights. Maybe one day, we will be worthy of the vision of IDEA.

We have a spending problem. Let's fix it. Fund IDEA now. Special Education families could use the help of all families on this. Pass it on: we all have everything to gain. Pass it on: without your help to fix the funding problem, IDEA is really no IDEA at all. 

Is your child non-verbal or does he or she have delayed speech? Does he or she use sign language, PECS, gestures, proximity or word approximations? Anyone with a language delay or disability is a potential Augmentative and Assistive Communication (AAC) user.

http://jset.unlv.edu/15.1parette/first.html

Students have a right to Assistive Technology under the Individuals with Disabilities in Education Act. This includes Augmentative and Assistive Communication (AAC). Federal law also mandates family involvement in the decision making process. The article above very clearly describes these rights and how families might be involved. 

How do you know if someone is a potential AAC user? Anyone with a disability that impacts their expressive language is an AAC user.  Some people are afraid that using AAC will discourage children from developing oral language. AAC actually helps children develop and use langauge, and often success with AAC increases children's interest in and ability to communicate.  The link below provides excellent resources about AAC for young children. 

http://aac.unl.edu/yaack/b1/html

For most students with a language delay or disability, AAC can provide access to curriculum. Without these supports, some children simply cannot receive the free and appropriate education they are entitled to. 

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.