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

No Child Left Behind might be left behind!

If you have not read Mark's blog today, you should!

Arne Duncan is talking about No Child Left Behind, and though he is not quite saying what I would want to hear (No Child Left Behind is a failed policy, an albatross around our necks, needs to be scrapped, etc.) he is saying that in a Washington savvy kind of way, perhaps. 

No Child Left Behind needs to be re-branded. Maybe even revised, rewritten. That sounds like new policy potentially. That would be good. Potentially. WE need to get involved. 

What role does the federal government play in education anyway? How does it impact state and local education agencies? Besides mandating education for all children, including children of color, Native American children, and children with disabilities, federal regulations define how money is spent in education. 

No Child Left Behind  also regulated curriculum through departments like Reading First, that controlled what curricula could be purchased and used in schools. Reading First has bordered on scandal, with accusations that officers took kickbacks and prevented fair competition among publishers. 

Reading First is an illustration of what is wrong with No Child Left Behind and educational policy in our current era. It is publisher focused, that is,  a business enterprise, driven by business people who see the world as a market place in which problems are solved by buying and selling things. Not that there is anything wrong with that. 

But it just may raise the wrong set of questions. 

Maybe it is time to stop talking about NCLB altogether and decide what conversation we want to have going forward. Let's talk about a new vision for education, and leave the old brand behind completely. We don't need a new brand for an old corporation, we need a whole new model of business, I mean, school. 

Robert's Park a Model of universal design

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

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

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

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

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

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

Well, you get my point. 

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

Low Incidence Funding

Taking care of students with low incidence disabilities is, well, expensive. And school districts labor under the weight of the expense. (IDEA funding is really important!) Recently our board president mentioned that the special education budget is a quarter of the whole annual budget. This figure surprised me, since our special education population is 13% (roughly) of our total population. So? How is that good?

So that means for our district SpED kids are only twice as expensive as kids in regular education. 

I actually know my kid is far more than twice as expensive. And I want to support our school to support her, and my two typically developing kids too. As they close schools and libraries and fire hard working employees and cut athletics and electives, I feel the anger as much as anyone, and some guilt that my child with a disability does not get enough funding to support my district's services to her. Services which are and ought to be protected by law. No one would school her without the law, as history already has shown. 

Low incidence disabilities are defined by California law to be "hearing impairments, vision impairments, severe orthopedic impairments, or any combination thereof".  In our district, that is a lot of kids. We have a whole program for kids with hearing impairments, visual impairments and several special day classes that serve kids with severe orthopedic handicaps. 

Low incidence kids receive low incidence funds to help with specialized equipment and services such as specialized books, materials, and equipment and services such as interpreters, note takers, readers, transcribers, and others.

That's great right? 

Wait until you see the funding formulae:

Local agencies (districts and SELPAs) that serve 25 or fewer students who have low incidence disabilities will receive base funding of $2,000, plus $29.85 per student. Such SELPAs are designated as “sparse” and are eligible to apply for additional funding to serve students with low incidence disabilities. SELPAs serving 26 or more students who have low incidence disabilities will receive base funding of $5,000, plus $29.85 per pupil. 

I'll guess that we are not a sparse SELPA, so notice that there is no provision for additional funding for us. Still, isn't $5000/26 + 29.85 kind of, well, enough? 

If we had 26 kids, that would be $222.16 per kid. With more kids, it is less per kid since the $5000 is divided among the total. So, how much does a kid with low incidence disability need? 

I'll take my kid for an example. Did I mention that with her new computer she is doing grade level work? That they discovered she can read? She can add and subtract? Here are some of her needs as annual expenses that are above and beyond what her sisters need:

• $30,000  a full time assistant to help with toileting, feeding and choking precautions, seizure management and computer work
  
• $900 (amortized over three years) for a positioning chair for feeding and computer work
  
• ?? bussing to her school, not our neighborhood school, which has no program for her
  
• $15,000 (amortized over five years and shared among three students) an eye gaze accessible computer for math, reading, spelling, science, social studies 
• ?? and associated software
• $50,000 nurse (shared among several kids) to administer seizure medications (required by laws lobbied for by the California School Nurses Association, not medically necessary)
• special day class (reduced class size, increased teacher cost)
• $150 Head pointer for painting, drawing and art

So the good news? The head pointer was covered.

The bad news? Kids are being left behind. Schools in California are shamefully underfunded and the governor's budget this year is a travesty, a cruelty, an abomination. But things would be so much better if IDEA were fully funded and if everyone had a realistic idea of what special education really costs. 

It is not that special education is horribly inefficient and wasteful, it is really that there are quite a few kids with extraordinary needs that are very expensive. 

So, as I have said many times before, it is a choice. Do we or do we not support special education? Because support means fund. As in provide for the support of, as in provide material support for. Not cheer from the sidelines, not be a fair weather fan. Not claim to love "those beautiful kids" and support their rights to a free and appropriate education and then complain about how expensive FAPE is and look to cut the budget. not say one thing and do another. 

Not to act all shocked and appalled that special education costs twice what regular ed does when you KNOW how much it costs. Exactly. 

Did I mention my daughter can read? How much would it be worth to you to discover that about your eight year old child, who had not been able to talk since she was 19 months? What would you pay to get a Valentine's card that she wrote specially for you, herself, on her computer? What would you pay to hear your eight year old for the the first time EVER you heard I LIKE MOM? What would you pay? 

Support the child, fund special education. They are worth it. If you don't think so, come meet my child, then tell me so. 

Accessibility in Yosemite

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

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

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

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

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

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

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

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

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

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

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

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

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

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