Wednesday, June 02, 2010

Our school district sued my son. He has autism.


Our school district sued my son. He has autism.

The Alta Loma School District is suing my six year old son who has autism and needs special education classes. They are also suing my husband and me.

I got the notice a few weeks ago. The school district wants a judge to declare that the district offered my son what federal law says it must provide him: a free, appropriate public education in the least restrictive environment.

One of the difficulties you run into when writing about the education rights of disabled children is that the real importance of these issues can get lost in all the official language and alphabet soup.

So I’ll try to explain as simply as I can:

Federal law says a child in special education is to be provided a free and appropriate public education. This education should be in the least restrictive environment. There are a lot of rules that determine what’s free, appropriate and least restrictive. That last term generally means that a child in special education should have the chance to learn alongside his non disabled peers to the greatest extent possible.  

Next step: When a child is in special education they are supposed to get an Individualized Education Plan each year.

The plan is both a legal document as well as a blueprint for the services the special education child will receive, and where and with whom the child will go to school. The plan is supposed to be written with contributions from all the planning team members. That team is normally comprised of parents, a general and special education teacher, a speech therapist, an occupational therapist, a special education director, a psychologist and sometimes others.

But these plans become the subjects of disputes between school districts that want to minimize their spending, and parents, who want an appropriate educational opportunity for their children, without going broke providing it.

When my son’s plan was presented in April, the district’s special education director made an offer for a school placement which she considered to be both a free and appropriate placement in the least restrictive environment.  Rather than signing the plan at the meeting I always go home and after rest re read it.

All parents should as well. The parent has the ultimate power to sign the plan and with some options: The parent may agree wholly to the plan; agree somewhat to the plan, taking certain services and agreeing to them and not others (like an a la carte’ menu) or disagree with the plan.

My husband and I agreed somewhat to the plan agreeing to one service and not agreeing to the rest of the offer.  We agreed to a service of Applied Behavior Analysis. We did not agree to placing him at a county school because we do not feel it is appropriate for our son, nor do we feel he is likely to receive any meaningful educational benefit in that placement. 

We currently have our son in a non public school. Here he has daily interactions with children who do not have autism from local charter and home schools, he uses touch screen computers, assistive technology, and highly educated people work with him one-on-one, which is something he requires. We are not asking our son’s school district to pay for this school. We have written to the district letting them know that our son was at this school.

On May 19, 2010 we received legal papers in the mail. It was a due process filing from the school district’s attorney, evidently to obtain a judge’s declaration that the school district’s offer was sufficient – that is, that it was free, appropriate public education in the least restrictive environment.

Our reaction to this is frustration and anxiety.  If we want to attend the hearing with an attorney we must spend money to retain one and this is money that we obviously haven’t budgeted for. Life with a child with special needs is already filled with complications and adding harassment and retaliation from a school district would obviously increase stress for a family.

So the district is choosing to file against my family and spend money on attorneys to sue us rather than to wait up to two years to see if we will file due process against the district.

And here’s what hurts all of us whose children need special education: The money that is used on attorneys to sue a family comes out of special education funds. 

This means that in the district’s quest to make certain that they can cover themselves against a potential future due process filing by my family they are, in essence, taking away taxpayer dollars designed for special education programs and services and using these dollars instead on law firms and attorneys to sue a family such as mine.

What are your thoughts on this? If you are going through this, or have questions about this process, I’d be pleased to chat with you here on The Freeway.

Sunday, January 03, 2010

Made it through the Holidays, just barely!

Well this year I asked my mom during her annual cookie day to see if she could look up a recipe that would work for Aidan and by golly she did! I am very proud of her and this first step she made. We will have to perfect the ingredients list a little better next year (coconut oil and no oatmeal) but overall it was lovely to have her step up and research a recipe and complete it just for Aidan.

The holidays were not so horrible. Thanksgiving we went away to Knotts. And Christmas we went to my parents Christmas Eve to have a feast I brought over from Trader Joe's, tamales and beans and chips and salsa. And Christmas day was the toughest at my aunts for a feast mostly none of which Aidan could have including tons of deserts all except his cookies he couldn't have. Keeping him away from the low table of these was hard. We had some external external family show up and something happened that was disturbing to me and reminiscent of my youth: every family but mine the kids were invited over for a sleep over. That was a bummer. This happened at my Christmas eve with my dad's side pretty much every Christmas where plans for a Big Bear trip not involving my family was discussed across the table in detail between the other brothers and sisters but not my dad. I am trying to decipher whether my son wasn't invited because well plainly he has autism and would be a handful and I would've said no anyhow etc etc or because simply they are just plain rude. Probably a mixture of both I suppose. What can you do. We didn't stay too long made it through food and opened presents outside with the kids and took some photos and that was our Christmas day there. Aidan did well overall.

Tuesday, October 06, 2009

Why I am a Progressive

I grew up very Conservative. Very very Conservative Christian family. I had an anti abortion binder that I carried around in junior high and high school that I was very proud of. It had pictures of babies on the front of it pasted on with information on abortion clinics. My uncle and aunt invited me to their weekly abortion clinic visits which they would attend and sit and protest women getting abortions. I didn't go to these I was too young but they would attend. Being gay or should I say practicing homosexuality was looked upon as truly a heinous behavior, a deprived behavior. I was very proud of myself when I would speak with others and very high high high on my high horse as the saying goes. I look back in shame on this. Shame that I was such a judging young person.

As far as politics go I can only remember my parents speaking negatively about Clinton briefly and his affair. I would say well if he can lie to the American people about his adultery imagine what else he is lying to us about.

It wasn't until this election, this Presidential election that things began to get heated. In the first election my husband and I voted for Clinton. In the next election or final election we voted for President Obama. My entire family voted instead for McCain.

Both my husband, my dad and my brother were laid off of work. My dad started watching more of Fox (Faux news) daily and reading Glen Beck books. Never before had he been interested in discussing politics or really bringing them into the realm of "christianity." All of the sudden his men's christian groups were focusing in on the political world namely our newly elected President. One church that our family is familiar with Calvary Chapel Chino Hills recently held a town hall meeting promoting that the health care for all bill is voted down. Something seemed incredibly wrong with this picture and still does to me.

Now I don't mind a debate. In fact I like to debate. I enjoy it. Where it gets trouble some for me is when it becomes personal. I have been told by family you cannot be a Christian if you support our President or are progressive. I am not affiliated with a political party but have said I am progressive so that's why they go that way. I have been told you grew up believing homosexual marriage is wrong and abortion is wrong how can you now be a progressive. I have been told I don't "serve my country" and wouldn't even if I had the chance. When I retorted I do serve my country I am a community server of sorts the response back was that's not serving your country.

But all this to say the point of my post the reason I am a Progressive. I am a Progressive thinker because of my son and the fact he has autism. Those that are Progressive their goal is to save programs that serve people with disabilities such as autism. The goal on the other side of the aisle has been to ward off tax hikes and cut programs. All of the programs that have helped people with autism have been spear headed by Progressives, from social security, medicare, Americans with Disabilities Act and more. One of my heroes and lion of the Senate Ted Kennedy made it his mission to assist those with disabilities. I believe at the root of Progressive is to put people before profit, a sense that we must look out for one another, love one another, care about one another. The other side speaks of letting the weak fail and that the strong shall survive and that you can get through things if you pull yourself up by your bootstraps. They speak lovingly of democracy and the country first motto but in reality what our country is is a capitalist me first society. When I think of what Jesus would look at in terms of how he was in the New Testament here on Earth I think of Progressive. And look I am not saying that this President is perfect or that I agree with every policy. I am purely speaking of the philosophy that goes alongside the party of Democrats that are Progressive and Republicans that are Conservative. I am a Christian and I am Progressive. And I believe that in my interpretation of the Bible and more specifically the new Testament Jesus would have called himself a Progressive rather than a Conservative anyday.

Parents Just Don't Understand

Something I have been thinking about writing about but haven't is the subject of extended family and their response to autism or a child who has autism. My family specifically likes to use food. Food represents love. So when my son who has autism can no longer eat the foods my extended family eats the choice has been to let him cheat, to force him to abstain, not to attend events etc. When I have had parties and have tried to make foods my son can eat for the entire family or order them special I have been criticized for doing so and told to make or buy the rest of the people there "real" food.

My son doesn't want to love on or hug just anyone. It seems the only way my parents especially can relate to my son is by disciplining him. Aidan get off that table! Aidan No, No! He looks at them and sometimes listens. That's the only time they get a look from him normally so that's all I find them doing with him, verbal discipline.

Then there are the other members of our family. Let's just say they don't all rush to volunteer to watch him while we are somewhere and I want to do something else like have a grown up discussion. Never mind the fact that my husband and I were the token watchers of all nieces and nephews for them. I have never ever been able to relax, take it easy and enjoy at a family gathering with someone in my family saying hey don't worry I will watch him for a bit.

Who I have become as a matter of becoming an autism parent is something my family and parents just don't understand. They have no idea what I do, what groups I belong too, why my ideology on so many things has changed. Some families especially grandparents when they hear a grandchild has autism it is as if some mechanism forces them into action and they become so interested and wanting to help their child who has a child with autism. I thought that would happen at least with my mom but it didn't. Oftentimes I feel like such an outsider with my extended family. Their reaction or lack of reaction has been so demoralizing. I think I just needed an outlet to express that.

Wednesday, June 10, 2009

Cause for Incitement

Cause for Incitement

Budget Crisis in the State of California Public Comment

June 3, 2009
I STRONGLY URGE YOU TO WRITE AT MINIMUM NOREEN EVANS! MAKE YOUR COMMENTS KNOWN!!!!
Make comments on the Governor’s proposed cuts too (and other budget proposals) (via US Mail – faxing not recommended):

Assemblymember Noreen Evans, Chair
Assembly Budget Committee – Budget Conference Committee
State Capitol
Sacramento, CA 95814

Be sure to include your complete name and address. You should also send a copy to the vice chair of the Budget Conference Committee, Sen. Denise Ducheny (she is also the chair of the Senate Budget and Fiscal Review Committee).

Sen, Denise Ducheny, Chair
Senate Budget and Fiscal Review Committee
State Capitol
Sacramento, CA 95814

Disabled in California by Kristie Sepulveda-Burchit
The state of California made a solemn promise to its disabled population in the late 1970’s. The promise can be found in the Lanterman Act which was passed in 1977 and can be found in the California Welfare and Institutions Code beginning in section 4500. The language of the Lanterman Act I have often said is quite beautiful. The commitment and promise that this Golden state made to its disabled is sacred. Today the citizens of California are tested by Governor Schwarzenegger to break a promise made to the disabled as well as other newly disenfranchised groups. The question now remains what the people with ultimate authority will do about it.
During the events of last Wednesday during public comments several people likened the position that the joint budget committee (made up of senators and assembly members) were in was akin to the doctors put on trial in Nuremberg. More specifically the crime directed at these physicians was for their “crimes against humanity.” The doctors at Nuremberg, at minimum those who were convicted, committed or were responsible for ordering a huge amount of atrocities against the disabled including withholding medical care, conducting atrocious experiments and the list goes on and on. This was during the Nazi regime in Germany and its outer laying procured countries. Faced with the governors demand for cuts and elimination of programs and services to our disabled, if these are approved by the budget committee a majority of those from the public speaking believe that this committee is doing as much to deprive it’s disabled and other disenfranchised minorities that were represented of medical care as well as causing deaths to many just as those put on trial at Nuremberg did. The term democide comes to mind as this specifically is the murder of any person or people by a government; specifically the California government.
On that note, as I was recently flipping back and forth through news stations to see the different perspectives, during one of my visits to Fox Glen Beck made a statement about what the elite in this country have believed and always believed. Now he was talking about letting businesses fail but what he said of course can be extended to other areas of life. He said there is and has been a belief in this country in evolution as well as natural selection. He said the failure of the weakest makes others stronger. The panel and he went on to discuss other welfare related programs with the key person contributing being the equivalent of a glorified “bookie” but that is neither here nor there. Here you have a belief system entrenched in this country that has firm roots as a result of the Nazi party thinking that rather than helping our “weak” or aka disabled we should give up on them and let them and the programs and services fail and be cut so that the strong in this state and country can further prosper.
If this is the belief system that our society is beginning to hear and listen to and become desensitized by that is truly scary to me. In a time of recession and depression society tends to scapegoat a group. In Germany the time was ripe because their country was devastated financially so that Hitler could so easily blame what he viewed as the weakest because of their genes or because of (something often forgot about the Nazi’s) their disability. It is often forgot how many men women and children died after torture via experiments that were inhumane and authorized by physicians simply because the unfortunate were disabled. Today in 2009 we have often said since that time, never again. We falsely believe our society has changed positively overtime so that we would never be that type of people that hurt the weak and or the innocent. In this country, the United States is in a time of financial crisis. A state most entrenched in that crisis is California. The governor has made it clear in his budget proposals that he will scapegoat and penalize the weak and or the disenfranchised innocent for the financial crisis. It is up to the budget committee to decide if they will follow his lead or remember their humanity and remember the promise they made to us as citizens of this state when they accepted “responsibility for persons with disabilities” and agreed they had “an obligation to them which it must discharge.” (California Welfare and Institutions Code 4501).
I will now outline some of the things discussed during public comment. From 9-10 30 AM we discussed Healthy Families being eliminated as well as Medi Cal issues. We had several physicians, pharmacy representatives, single parents, elderly discussing both programs even some that cared for grandchildren in the program, as well as the disabled. Healthy Families is a state insurance program that serves over 900,000 lower income children in California. For every $1 the state pays in this program the federal government gives the state $2. President Obama recently in February of 2009 reauthorized the program as well as funding it and gave his written endorsement of the program to continue. Many children depend on this insurance especially in this economy with parents being laid off. Most of us parents know this program is very useful for services our children need such as speech, occupational as well as behavioral therapies.
I spoke three times during my public comment as they broke the day up in sections. I spoke briefly of the importance of this program for our children and some of the benefits for it. But what the committee is mostly looking for is innovative ideas to save these programs and services. So I discussed during this portion as well (we all had 90 seconds max) as the fact that the state needs new sources of revenue and that they need to think “outside the box.”
During the Public Health, Medi Cal Pharmacy, Proposition 36, emergency medical services authority portion several parties spoke. There were many there stating the law of proposition 36 doesn’t change so that a person could be offered rehabilitation or jail time could still chose rehabilitation and if the state has no program because they have cut it then there is a deep misunderstanding of what the plan would be. In addition poison control a phone number many parents have called is on the chopping block and even physicians spoke who actually get calls from patients and they in turn call poison control because they don’t have answers. There was a person with AIDS who had hepatitis B since birth there that will lose her much needed medication because that as well is being looked at for cuts. There were people during this time for shelters from domestic abusers that houses children and the victims. There were several ideas to raise revenue for these programs including raising taxes on alcohol and tobacco. According to research 85% of Californians support an alcohol tax. Apparently this is in bill AB 1019. People spoke about care for the elderly including those facing alzheimer’s. Some spoke of the fact that families are one hospital visit away from bankruptcy. A child’s illness can bring a family homelessness. Someone asked a very important question about why the Governor’s budget and what we were discussing that day was talking in terms of complete elimination rather than suspension as was supposed to be the plan.
During the discussion on Regional Center and Department of Developmental Services there were several hundred people coming and getting in line for their 90 seconds because that same day there was an event on Capitol Hill regarding the Olmstead Act anniversary. Most people got up and said please don’t cut this having to do with regional center and some suggested cutting down the developmental centers. My focus was on the early start program and I spoke a little about that because the people that are with early start the proposal from the steering committee would put the children out of the system potentially from age 2-3. I guarantee those parents are not thinking about legislation or advocacy so I felt I should speak on behalf of their kids. Being that I knew they wanted ideas of where to get revenue I gave them an idea to think outside the box involving “legalizing” and “taxing” items to get some revenue for which I got a few eye rolls by the committee and some laughter as well from the crowd and thumbs up from veterans in wheelchairs in line as well as some caretakers for IRC clients. I also said I was behind taxing of alcohol, sugar, caffeine products whatever to help protect the rights of the innocent here.
After lunch we discussed In Home Supportive Services. This time they made another announcement on concentrating on ways to save the state money for this program during public comment. I pointed out during my time that this state actually already saves quite a bit of money on this program conducting IHSS as they do. Other states hire a nurse at nurses wages ($40-$50 an hour!) to come and do IHSS services. When the state of California is paying between $8 to $11 an hour for IHSS services they are saving money! I also made a third plea for them to get out of their comfort zone and think outside the box in terms of revenue. I also reiterated what another man had said before me that the people did not speak when they voted no on the propositions. I said they didn’t understand them, we had a dismal turn out of less than 25% and that it was the legislator’s job to do a budget and not entrust the people to do that budget. I said furthermore if the majority does something to the disenfranchised minority where their rights are taken away this is unethical. In other words if the people voting no on props and our governor basing these cuts on that saying the people have spoken and no taxes, and this in fact directly impacts and hurts our community (the minority) that is unethical!
Several wise comments were made including these: the state of California didn’t vote as a whole to let the propositions fail. Instead it was a vote of no confidence. It was a dismal turn out of voters. The people of California have no confidence in a legislature that chooses to put the state of the budget in the hands of the people rather than solving it themselves. Even if the people had spoke as a majority, if the majority speaks for the disenfranchised minority who would be hurt by the majority this is unethical, immoral and unconstitutional. Someone said the cost of nothing is more than the cost of everything in terms of them cutting the budget down as much as they want too.
Some inventive ideas included repealing taxes that have been given in the form of tax breaks to the wealthy and the big corporations and big business even this last fiscal year. A young caregiver brought up taxing cookies, cakes, sugar products etc and went on to discuss what the state was paying for diabetes care. I mentioned tobacco and alcohol tax previously. Someone brought up re introducing the vehicle tax. I believe an elderly veteran brought up eliminating tax breaks to corporations and also he had an idea to have prisoners pay for their keep. He also went on to say increasing the tax amount to the wealthy and laid out a plan for this. He went on to say the budget committee should have a pledge card in which they say I won’t throw poor people, sick people, old people, disabled people, veterans, children under the bus!
They went on to discuss CalWorks programs, SSI and then Foster care but they didn’t want repeat testimonies so I didn’t speak on these programs though they are vital.
After the meeting within a few days more cuts and eliminations of programs have been discussed and I am sure will be discussed.
After this occurred last week they once again got together Tuesday I believe and discussed potential cuts to the education, the community colleges, CSU’s and UC systems and also the disability centers at these campuses. Yesterday (Tuesday, June 2nd) our Governor spoke and from his speech he said
The immediate task before us is to cut spending to the money available. And we have no time to waste. The Controller has told us we have 14 days to act or California is at risk of running out of cash. I have already used my executive authority to reduce the state's payroll. And I have proposed the necessary cuts to the three largest areas of our budget: which is education, health care and prisons. I know the consequences of these cuts are not just dollars. I see the faces behind those dollars .I see the children whose teaches will be laid-off...I see the Alzheimer's' patients losing some of their In-Home Support Services .I see the firefighters and police officers who will lose their jobs. People come up to me all the time, pleading, "Governor, please don't cut my program."They tell me about how the cuts will affect them and their loved ones.I see the pain in their eyes and hear the fear in their voice. And I hear the demonstrations outside the Capitol.(there was a demonstration going on yesterday with CDCAN) It's an awful feeling.
But we have no choice. Our wallet is empty. Our bank is closed. Our credit is dried up.

I implore you as citizens of the state of California to write to your legislators with any new ideas for revenue to the state or any cost savings ideas to the state. I implore you to briefly mention the importance of the programs but also to focus on cutting the bureaucracy that exists and hurts consumers as well. I implore you to quote from the promise made to the disabled in the language of the Lanterman Act. When I have seen items in the news recently about this issue I hear only one line about the devastating cuts and eliminations for the disabled but it’s only news worthy because they focus on the cuts to AIDS and education. While these are obviously worthwhile and notable items the cuts to the disabled have been happening for years and continue to devastate our community and in fact hurt or lead to death for many consumers. It must be stopped and I implore you to let your voice be heard for my child, for your child, for all of our children and the adults that these cuts affect.

BUDGET CONFERENCE COMMITTEE MEMBERS

The Budget Conference Committee consists of a total of 10 members – five legislators each from the State Senate and Assembly instead of the usual 3 members each.
Democrats will control the Budget Conference Committee with 6 members (3 members each from the Assembly and State Senate) with Republicans having 4 members (2 members each from the Assembly and State Senate).

The Assembly members of the Budget Conference Committee are:
• Assemblymember Noreen Evans (Democrat - Santa Rosa) – Chair
• Assemblymember Kevin de León (Democrat - Los Angeles)
• Assemblymember Bob Blumenfield (Democrat - Woodland Hills)
• Assemblymember Roger Niello (Republican – Fair Oaks)
• Assemblymember Jim Nielsen (Republican – Gerber)
CDCAN Note: Evans is the chair of the Assembly Budget Committee. De Leon is the chair of the Assembly Appropriations Committee. Niello is the vice chair of the Assembly Budget Committee.

The State Senate members of the Budget Conference Committee are:
• Senator Denise Ducheny (Democrat - San Diego)
• Senator Mark Leno (Democrat – San Francisco)
• Senator Alan Lowenthal (Democrat – Long Beach)
• Senator Bob Dutton (Republican - Rancho Cucamonga)
• Senator Mimi Walters (Republican - Laguna Hills)
CDCAN Note: Ducheny is the chair of the Senate Budget and Fiscal Review Committee. Leno is the chair of the Senate Budget Subcommittee #3 on Health and Human Services and the Senate Public Safety Committee. Dutton is the vice chair of the Senate Budget and Fiscal Review Committee.
Take Action!

Cuts to the California state budget in the realm of HUMAN and HEALTH (think about that) services will no doubt be coming shortly within the next days and weeks and definitely prior to July 1st. Our voice must be heard! I urge you I implore you to SAY SOMETHING!

Our Governor's recent response to the promise in the Lanterman Act made available here

http://www.ustream.tv/recorded/1610528

Interviewer: "Joyce Hearn, one of our readers, wants to know if you intend to keep intact the Lanterman Act which is the California law that guarantees services for the developmentally disabled." Governor: "Um, you know it's all on the chopping block. It's all part of the budget And I think that we try to...I'm very sensitive about that because as you know my mother in law one time called me about that when I made cuts a few years ago there. So, but, like I said, I cannot pick and choose, to pick and choose would be the wrong thing here. It has to be somewhat across the board. And so that is also one of the things we are looking at."

To that I say across the board cuts? Where there is potential to loss of human life and where there is potential to witholding health services from a life that is to be the priority over all else. To do nothing short of that is immoral, unethical and unconstitutional.

Friday, May 08, 2009

Considerations

Aaron and I are considering different directions for Aidan's schooling. We are considering charter schools as well as looking at non public schools. It is not as though there are terrible teachers in the county programs. There are some very good ones. There is though a lack of the the things I find incredibly important like a 1:1 aide for kids who need them, inclusion and mainstreaming in regular classrooms during parts of the day and definitely lunch, recess with the other children. These aren't happening and I see some of these classes failing because of that fact. I think there is a lot to consider as we move forward and nothing is set in stone.

Thursday, April 23, 2009

To every season....

First some positive things to report: Aidan has been making more of reciprocal connections with us. Smiling and dancing while we imitate him and smile and dance and keep the interaction going. He even laughs in delight at this back and forth. It is awesome!

We just had a very very collaborative IEP with the school and I look forward to working with them to discuss placement in the upcoming month. Aidan is going into kindergarten and I am looking around at placements that would accomodate his needs.

Will update after the next IEP in May.

Monday, January 12, 2009

Change in the economy change in treatment plan

Well the economy straight up sucks. Jobs are being lost. Wages are decreasing. Gas prices that had gone down are going back up. Times are tough all around. Nowhere I think is this more evident than in the world of autism or at least those who chose to do alternative treatment. We had been doing homeopathy or energetic homeopathy for a year or so but could simply no longer afford it. So we are now doing with our lil man something called homeotoxicology. We are in stage one which is stabilizing him. It's the first level and that name sounds so severe like trying to get a patient on the table stabelized and that's exactly what it is.

These are the stages and I am sure we have a road ahead of us. But that's okay. It's affordable and doable for us. I struggle with should I give straight up meds or no because that might be the easier road but for now we are sticking to this.

Phase I (Stabilize) with emotional support. Phase II is Vitalize where we build up the adrenals, neurotransmitter and gut support, Stage III is Neutralizing toxins from the outside-in, inside-out and Stage IV is Energize where the child is on a maintenance schedule customized for them.