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.

Universal Design

Universal Design is a design, concept or set of tools that allow the broadest participation of people with different needs. Curb cuts are often used as an example of universal design. They were intended for wheelchair users, but they also support people who use canes or walkers or people who do not use assistive technology but who may have trouble navigating a step. They also benefit parents with strollers, runners, people making deliveries with carts. Most importantly, they do not hinder anyone. 

 

Universal Design for Learning applies this to learning environments like classrooms. Some examples of Universal Design in Classrooms include arranging classrooms with enough space that wheelchair users can maneuver. Others are more subtle, like using dry erase boards with colored background (instead of whiteboards) to support visual discrimination or providing stretch breaks frequently to support learners with ADD or sensory integration. Many supports, are invisible but allow students of diverse abilities to participate in a single lesson, such asa teacher who provides multiple texts with different levels of difficulty on the same topic. 

Laptops in schools have the potential to provide universal design supports. With these tools, learners could automatically change font size, use dictionaries, translation and transliteration tools, and research topics to build background knowledge and vocabulary. Students who already use spelling prediction, voice activation or alternative access methods such as single switch scanning would fit into the classroom almost seamlessly. Students could carry copies of all their core subject texts in a single device, since most publishers now offer e-textbooks. 

Clearly laptops have a great deal to offer. But the important thing to remember about universal design is the instructional component. Buying laptops for every student has had mixed success across sites. The biggest risk would be forgetting that teachers need ongoing training and support in not only using the tools well, staying current with technology, but more importantly in developing new methods of instruction. 

Buying laptops for every student without a strategic plan to support instruction would be like investing in gymnastics equipment when none of the staff has ever taught gymnastics. 

Yet in spite of this caution, I remain very optimistic about the possibilities for laptops in school. The potential it has for modernizing our 19th century educational model and opening up access to a wider variety of students is enormous. 

Red Tape and competing interests

So much talk about budgets lately is concerned with making things more efficient. Gosh, I hope someone besides me is thinking about the states departments of developmental disabilities. In an effort to be more localized and efficient in distributing resources to persons with developmental disabilities states have created nightmare scenarios for parents and caregivers.

We are parents, not policy experts, educational consultants, attorneys, occupational and physical therapists, case managers all rolled into one convenient package.

Which is what I have had to become to care for my child's agencies. I resent caring for her agencies-- it takes my time from caring for her.

Here is a small example of how we find equipment for her needs. Recently we have tried to get a potty chair-- mind you she is now 70 pound eight year old, so this is not a trip to Target or Babies R Us. We have entered into the alternate universe of Durable Medical Equipment, a universe where none of the normal procurement rules apply. 

1. First, I contact her case manager (CM) at Regional Center (one of forty private non-profit contracted by the California Department of Developmental Disabilities to case manage "clients" like my girl. Mostly, they distribute money and try to obscure what services they do actually provide as far as I can tell.) My kid is a regional center client because of her diagnosis. 
   
2. The CM tells us there is a one year waiting list to see the regional center therapist who can evaluate  my child's need. I suggest that is unreasonable. 
3. The CM suggests we see her private doctor. 
   
4. We write a letter to her Kaiser doc request a prescription for a potty seat. 
   
5. The doctor sends us to the physical therapist (PT) at California Children's Services (CCS is run through MediCal) to get a recommendation for equipment. 
   
6. A month later, we see the PT. 
   
7. We fax the recommendation to the doctor, who returns a prescription to the PT.
   
8. The PT submits the prescription to Kaiser for the necessary denial letter. (We are already way over the DME limit for the year with a new wheelchair and leg braces. And, Kaiser does not do potty chairs.)
   
9. Six weeks later, we receive the denial letter from Kaiser. 
   
10. And fax it to the PT, who sends it to a private contracted vendor. 
    
11. The vendor submits the bill to Regional Center. 
    
12. At this point, Regional Center should pay for it, as the funder of last resort (their legal obligation). 
    
13. But since I already applied for MediCal at the request of the case manager, Regional Center denies the purchase and says we have to go to MediCal first. 
    
14. Fortunately the case manager at Regional Center deals with the CM from MediCal. 
    
15. Six months after applying we get an approval for the MediCal case and a temporary MediCal number, which I submit to the vendor. 
    
16. It has now been nine months since we first began trying to get a potty chair. 
    
17. The vendor submits to MediCal, and receives a denial from MediCal saying there is no medical indication for a potty chair. 
    
18. I think I should call my doctor and discuss a prescription for anti-rage medication. 
    
19. I contact the case manager at Regional Center and tell him MediCal denied the purchase.
    
20. He sends an email back explaining that I must now submit both a letter from Kaiser AND MediCal before Regional Center will pay for it. 
    
21. So now I have to write to MediCal and try to get the denial letter that I never received so that I can forward it to Regional Center. 
    

This is the second time we have tried to get a potty chair. I first began this process two years ago.

So, what have I learned? That the state pays a full time case manager at Regional Center and another at MediCal two people whose job it is basically to save money by denying services to my child. That Kaiser pays a claims adjuster aalso to deny services to my child. Three people involved in denying services-- work that does nothing but suck money out of the system that could be going to direct services to kids like mine. And the account manager at the vendor is paid to navigate the same denial of service loop-- another waste.

And it only gets worse when the school system gets involved as a third party denier. It took three years and an attorney to get a speech generating device because everyone wins by denying-- except the child, but who cares about them? 

The only necessary people in this loop are the doctor and the physical therapist. They should be able to write a prescription, sign and affidavit and submit directly to the state. Sure, some fraud might get through, but could that really outspend the huge system that has grown up around preventing fraud? How many potty chairs could slip through before we outspent the salaries of two case managers?

There has got to be a better way. All I know is this: raising a child with a disability is hard enough without the systems that are supposed to be supports making life harder than it is already.

I hope that this is read by Diane Feinstein, Barbara Boxer, George Miller, Tom Torlakson, and Mark DeSaulnier. In fact, I am going to forward it right now.

Right after I call about those meds. And resubmit the two denial letters. And start working on a new wheel chair. And a lift for the van. And...

The trouble with Jerry

I was reading the letter from the Academy Awards Committee to Disability Rights Advocates this morning and reflecting on the trouble with Jerry.

The trouble with Jerry, I think, is that he straddles generations of change and holds the uncomfortable position of doing better than our parents and not as well as their children.

Not unlike Frederick Douglass and Susan B. Anthony. For years they were friends and colleagues, a former male slave and a white woman, both disenfranchised, both unable to vote or own property. They worked together on full citizenship through constitutional amendment.

Until the day that Douglass, seeing the end of the Civil War and the passage of the 14th Amendment as an opportunity that would never again come, backed the Fifteenth Amendment. For which he is a hero. But he supported the final amendment against the advice and will of his long time political partner and friend, Anthony, who worked on this amendment with him but withdrew her support. Because, in its final wording, the fifteenth guaranteed the right to black men. And not a single woman. Douglass had lobbied with Anthony for that amendment to include women, but gave up. He knew that it would not pass if women were included in this expansion of the right to vote. He turned his back on women in order to make one milestone in the fight. These lifelong friends never spoke again.

I have often wondered about this historical moment, from the point of view of the people involved. Was Douglass right? Was it necessary? Would lack of compromise then have set the whole cause back? What if the fifteenth amendment had included language protecting women and not passed? Was Susan right to stick by her belief that rights cannot be gained incrementally? Or was her role more important-- was her vigorous campaigning and militant opposition part of what pushed the struggle forward?

I never wondered if Douglass was a hero-- he was.

Jerry is out of step with this newer generation of parent, caregiver and adult with disabilities who grew up with ADA. Most of use have lived with a different reality than his generation: no matter what anyone thinks about people with disabilities, they all have legally protected rights.

Jerry spoke to, and often for, a generation of adults who came out of world war two horrified by the genocide but still harboring sympathy with eugenics. He spoke to a generation of adults who never built accessible ramps so that people with disabilities could access public institutions, but instead built public institutions to prevent people with disabilities from living in the community. He spoke to a generation that heard things like "there is no hope" and "give the child up." To a generation who had little sympathy for people with disabilities, developing sympathy, empathy and compassion was a powerful first step that allowed them to consider throwing open the doors of state hospitals and keeping children with disabilities home. And to look for cures.

Cure is such a common word now, cure for AIDS, cure for autism, cure for lymphoma, run for the cure. When Jerry began his work it was not so. If you went around with your pledge sheet and asked for triathalon sponsors, people would have been puzzled- why? Jerry made us see how shameful that was.

Jerry claimed kids-- Jerry's Kids-- with a disability that the medical community disclaimed and described as terminal, invalid and disabled. In response he imagined Jerry's Kids? That is courage.

Douglass was a hero, even with the whole 15th Amendment-not-including-women thing. Mark Twain was an incredible voice against racism, even though he used the N word. Jefferson expanded civil rights exponentially, even though he was a slave holder. I am a good enough mom most of the time, even though I have my moments of fatigue, my secret wish for her to be cured, to be other, to be like us-- not disabled.

Jerry Lewis did not invent the disabling language of his time, or the view of ability and disability in the post war era. Jerry urged the able-bodied world to feel remorse and shame toward themselves and sympathy toward people with disabilities. It only feels weird now because we are so far from that time when people responded to disability with revulsion, aversion and avoidance. Because of the sea change in our concept of ability, today we (and I mean those of us who are typical, majority or non-disabled) can feel the many things that come with friendship with people of all abilities. Rather than pitty for the stranger, we feel love and hope for the relative and friend.

In his own best way, and his way accomplished a great deal.

Thanks Jerry. And, by the way, please don't heap sympathy on my kid. She may even see a cure. Until then, she is just right the way she is. It is the only way she can be.

Spare the fetus, spurn the child

A round of the common cold left all of us cranky and couch bound this past week, and my daughter with Rett Syndrome in the hospital with dehydration and low blood sugar. From the same cold. A harsh reminder of her medically fragile position among us. Now she is better, and I am back to posting, reading, thinking and learning. Grateful to pull through another crisis and see her happily on her way to school this morning where she will be greeted by buddies and work on her most amazing computer. 

Of Arne Duncan in Ed Week this week: "He’s not been a great supporter of special ed. I don’t think he dislikes special-needs kids; it just wasn’t on his radar screen during the time he was here,” said Rodney D. Estvan, the education outreach coordinator for Access Living."

I read this Ed Week after spending another normal day at the hospital. I wondered, why is this not on the radar? No one would say don't treat her. No one would advocate I not spend the money on the ambulance, the emergency room visit, the IV fluid. Not many people would say, just let her die.

But no one wants to pay for school either. And I wondered, is it really just that special education is not on the radar? I am sure that if Arne Duncan or my local board members were there with me, they would have been compassionate. I am sure that seeing her wake up, and give that brilliant smile would have touched them as it did everyone else.

Why is the emergency so compelling, and the day to day is so boring? It is no less important to toilet train her (at six years old) and to teach her to use her PECS icons to ask for things rather than scream, and to assess her need for a computer than it is to give her IV fluids when she is sick.

And it made me wonder, this experience, juxtaposed with the Ed Week article, do education policy makers just not have enough contact with special needs kids? Is it really as simple as not getting it? I really prefer this theory over the malice and ill will scenario.

I would like Arne Duncan and every policy maker in the country to sit down and reconcile a double bind our politics has created.

On the one hand, we as a nation loathe abortion, so much so that a substantial group of people would like to see fetuses with identified genetic mutations legally a protected class of citizen. Spare the fetus.

On the other hand, many of the conservatives who hold this anti-abortion position are the same people who are crying out to remove IDEA funding from the stimulus package, and who strip Medicare for the disabled. Special education and children with disabilities are seen as an encroachment, an entitlement, a burden. If special education is seen at all, if it is on the radar, it is because "it" is too expensive. Policy makers seem to forget that "it" is made up of children. Choose life, but spurn the child.

These positions together? Spare the fetus, spurn the child.

It is time that our kids get on the radar, not just when they are at death's door, but on the normal days too. What we do in between emergency room visits matters too. And, surprisingly, it matters more. It makes a difference not just that they live, but how they live.

How about: Spare the fetus, support the child. I think that will be my new motto.

Look out Mister Duncan, we intend to enter your air space.

Upside Down

Education is currently upside down. The value of the goals we hold for students is less that the value of what they can learn, and no matter what we pay into the goals, we cannot get there from here.

Since the reductionist view of education took hold under No Child Left Behind, education has focused almost exclusively on deficits- on what students cannot prove they can do. This has led to a number of unintended consequences. These impact special education and other students who share the below and far below basic categories disproportionately but they impact all of schooling as teachers and administrators are encouraged and even bullied by policies and fiscal constraints that force them to keep their eyes on students' failings and ignore students' strengths.

For example, a student with autism has a curriculum that is focused primarily on language and social skills-- things we as non-autists, notice that they "cannot do."

For reasons we do not fully understand, people with autism develop expressive langauge, both verbal and non-verbal, very differently from those of us without autism. Thus, language and social skills are considered the "core deficits" of autism. It used to be thought, in the fifties through the seventies that this was a form of childhood schizophrenia, induced by the trauma of being rejected by the mother during pregnancy. This has long been abandoned as a theory but has been replaced by other behavioral theories focused on developing behaviors that will help the child pass as normal. More recent neurological studies have shown that the brain of autistic children is unique from ours and that their recognition and processing systems for non-verbal and verbal language may be just quite different. So getting them to pass as one of us helps? Well, it helps mostly us. It helps us feel more comfortable with them.

This is a radically unpopular point of view for a mother of an autistic child to take, I have learned in conversations with friends and professionals. But I have been reading many, many self-reports from autistic people, and hearing from my own daughter now that she is able to use her speech device. My own brother had a sensory integration disorder and his suicide confirmed what I am about to say: even when autists pass as normal, they are always painfully aware that they are different.

A friend of mine has a child with autism who is non-verbal. He is grinding his way through a very limited behavioral curriculum and almost grade level work in math. But, he is a genius with computers. When computers break in the classroom, they turn to this eight year old to reboot the system and get them working.

What if he stated working on computers and mechanical things along with his applied behavioral therapy? Sure, toilet skills are critical, who could argue with that. Especially if you have had the privilege of changing a diaper for a nine year old in a public restroom, you know that is an important skill. But isn't building confidence, joy, a sense of mastery over something, curiosity, interest, and potential future job skills as important?

I have another unpopular theory about this. His teachers don't know how to keep up with him. The system is so dysfunctional that it needs him to be disabled. Because if he were actually better at computers than his teachers, they would have to change the way they teach-- and learn more about computers. What if this funny, brilliant boy spent his day fixing computers, programming computers, doing research on the net? What else could he do? What would we discover about his self regulation, his ability to interact and his behavior if he were allowed to study things of interest, which he was good at instead of being shoehorned into a mold which he will never truly live comfortably in? Could we, for example, tolerate or even encourage stimming instead of trying to extinguish it? Stimming, the hand flapping and noise making which many autists report help them organize and calm themselves, may be essential to the autist feeling comfortable enough to work, think and interact.

Imagine a school-- a whole world-- in which a child with a disability could be more successful and masterful than his or her teacher in certain areas, and where ability, not the disability, were the area of focus. What would that look like for your child?

Could we ever let go of our own fears and prejudices enough to create a world in which these young people are allowed full membership and participation? Could we let them be truly differently abled?

Imagine an IEP goal that read: "The student will be able to use an appropriate stimming method (hand flapping, bouncing, rocking) of choice to focus and calm herself during work sessions."