Tuesday, May 4, 2010

The Beef (and I've longed to give it up)

Thank you for all your kind words of sympathy and advice regarding the recent turn of events in Sophie's school life. It's such a blessing to have this online community, and many of you experience similar situations, struggle with similar problems and some even know the law! I feel like I have to respond in some way regarding what's going on here in California and, particularly, Los Angeles.

The fact is: the state is supposedly broke and so is the city. That means cuts, and I mean draconian cuts. California is unique in the United States for its entitlement program -- The California Department of Developmental Services is the agency through which the State of California provides services and supports to individuals with developmental disabilities. These disabilities include mental retardation, cerebral palsy, epilepsy, autism and other related conditions. Services are provided through state-operated developmental centers and community facilities, and contracts with 21 nonprofit regional centers. The regional centers serve as a local resource to help find and access the services and supports available to individuals with developmental disabilities and their families. During the last couple of years, the services provided by Regional Centers have been slowly but inexorably cut -- those services include therapies, partial diaper reimbursement, respite, after-school programs, etc. Sophie is still a client of our local Regional Center, but she has lost most of the funding she used to receive. When music therapy was cut, I applied for and received a grant and partial scholarship from the agency that works with her. We no longer receive partial reimbursement for diapers, so I pay completely for that. Most after-school programs and summer camps have been cut, and I've fought tooth and nail to retain some of the respite hours that we receive.

At the same time, the Los Angeles Unified School District is also making enormous cuts in its budget and there doesn't seem to be an end in sight. LAUSD is a behemoth, the second largest public school system in the country and probably the most ill-managed and inefficient. I have long wanted to take Sophie out of the system entirely, but there are very few (like none!) programs, private or otherwise, that would be appropriate for her. For the most part, she has been in some very nice classes, and the current one is no exception. Her teacher and all the aides work diligently and lovingly with all the kids despite enormous constraints, including now, twice monthly furloughs, the threat of layoff and a shorter school year. Sophie is finishing middle school and has spent three years on what is called the year-round schedule. This was insitituted years ago in an effort to ease over-crowding and basically allows a physical school to admit three tracks of students year-round. Sophie's track -- the infamous B -- dictated that she attend school July and August. She qualified for an extended school year (ESY) which in this case, meant that instead of being off in September (so Track A could start up), she went to "summer school" -- half days for four weeks. Then she had NO SCHOOL for the entire month of October. She went back to school in November, December, January and February and then had two months OFF -- March and April. I just assumed that she would go back to school in early May and stay in school through the summer before transferring to a regular schedule in a local high school.

But, NO. The school she is leaving is switching to the regular type school year which means she will finish in late June and be OUT OF SCHOOL for the entire months of July, August and now, most of September, because the LAUSD has pushed the opening of school later in September because of CUTS.


For the educators out there or those who think the IEP is a legal binding agreement and that Sophie is assured of an extended school year: Well, technically, it is a legal binding document and she is eligible for an extended school year, but not when there isn't going to be an extended school year. I suppose if I had the energy or the time or the money to hire an advocate (and I'm looking into it), I could press for those things. I could press for the letter of the law.

But the BEEF is that fighting the system has a time and a place. Remember that Sophie is fifteen years old. I have an IEP for her next week and I figure that it's the ninth IEP I've had in Los Angeles. The "services" we're going to get and the things I should "demand" are mediocre at best and, frankly, not worth the fight. I did write a letter yesterday to Steve Lopez of the Los Angeles Times, in an effort to give voice to the voiceless. I told him a little of our story and tried to make it representative of many -- I impressed upon him that these budget cuts are hitting the most vulnerable and that families out here, families like mine and those in far worse circumstances, mothers like me are at serious risk. I urged him to write about the disabled, especially children and their caregivers. What I'm hoping is that he will and that we might get not just a response from the government but, more importantly, private foundations and wealthy individuals who might step out and help all of us out.

I'd like to get another job and really contribute to this world, but as long as I am tied to the endless care giving that I now have, I can't do that. You know how much I love Sophie, and being her mother and caring and advocating for her is the most important work I'll ever do. But it's too damn much at times, and this time, due to a cascade of circumstances it's about to blow.

I'll take it one day at a time. But if I won the lottery, this is part of what I'd do:

1. Pay off my debts.
2. Get full-time help for Sophie.
3. Start a non-profit foundation to fund a school for kids like Sophie. The school would be beautiful -- a place of beauty and nature and music and art and dance. There would be academics for those who could learn to read and write. There would be movement classes and hippotherapy and yoga and animals to take care of. We would have a garden and delicious food. There would be trees under which to sit and an accessible tree-house to sit inside. The school would be called Just Because and the children and young adults who attended would be there just because. They would be there just because they are alive, have integrity and are worthy of these things. There would be no expectations of success or employment or integration. They would be there just because. 


  1. This may sound crazy but have you thought of contacting the Gates Foundation? They are, with all the faults that people may want to find, really caring people when it comes to children, and their foundation is one of the few that quietly provide for ideas such as yours.

    Try it, what do you have to lose that you have now, other than a wonderful idea that you won't lose by talking to them? This is one of the reasons why I wish I had money.

  2. What a beautiful idea. I've been wishing you would run for political office. Starting this school would be a higher calling. Put a paypal button on your blog? Approach Mr Hefner--maybe he has $ left after the Hollywood sign? Who is rich and famous & has a disabled child? You are amazing.

  3. Ack. The school sounds like heaven.

    I hear you on the fighting the system. It's a nearly impossible task when you are overextended w/ care-giving in the first place. I'm not in the thick of it (fighting my school system (also my employer) on my son's behalf) right now... but I remember... ack ack ack.

    I think writing the letter is a step in the right direction! Hang in there...

  4. Very interesting post. Good luck with that. The whole world seems to need budget cuts nowadays. Why? I guess, people need to be more accepting of taxes. In Denmark, 60% of salary is deducted in taxes, and so there is no shortage of money for health, education and welfare.

  5. You know, Elizabeth, you are the sort of woman who can dream and then make that dream come true. I agree with Allegra- why not try the Gates foundation?
    I love your dreaming heart, I love your steel spine.

  6. "Just Because." A beautiful vision. Don't give up on it. I found your blog only recently, and from what I've read so far, you ARE making an incredibly REAL contribution to this world. By loving your family, loving Sophie. By declaring and celebrating her beauty and her LIFE. And by writing about it so we can know and care and pray and maybe, understand that we are not alone in suffering.

    I personally suffer from a chronic illness that causes daily pain. I pretty much live on liquids, but the pain (and often sickness) persists. I have been told there is no cure. I can't take pain meds other than Tylenol (and that doesn't work) because pain meds make the condition worse.

    Yet I am surrounded, even on the really bad days, by love and light and beauty. Some days it is hard to see through the pain and the weariness, but it is there, and I am trying to learn to look for it.

    Thank you for sharing the beauty you have found in your world, and for sharing also the weariness and the reality. I'm sorry I don't have any really good, helpful, practical words to offer you. I just wanted you to know that I understand the feeling of utter weariness, the feeling of not being able to take another step forward, yet taking that step anyway, the feeling of wanting something really good to happen around the next corner - something like winning the lottery and starting a school like, "Just Because."

    I pray that you will have strength and grace for another day, and light for your path, and the love of God surrounding all.

  7. I was just thinking the exact thing that Allegra wrote! Though the Gates Foundation seems to prefer to work on huge issues outside of the US, you have a VERY compelling thing to tell them here. If they refuse, let's brainstorm who else you can contact.
    That school you are envisioning sounds like a place of enlightenment. If such a place as the Hutch School exists, why not your school? How can we help you? XO

  8. I read your experience and have my own here, and wonder how on earth this country makes it to the next day. Seriously.

  9. P.S. I hope you get somewhere with that Steve Lopez fellow.

  10. I think you make a very big difference in the world.

  11. You are one amazing lady, hitting another nail on the head with these few paragraphs. And you know what? I sometimes wish more of our world functioned on the "just because" system. I worry about the hoops and hoopla my kids will increasing face as they grow. Could we create a better way? And why oh why is there so little money for our children?

  12. My friends who have a daughter who have the same condition as your daughter hired a nanny to help their daughter out. They also live in Southern Cal. Not that it is any consolation, but we are having drastic cuts in school education here in Georgia too. Shorter school year, no music, teacher cuts and larger classrooms. Schools should be the last thing to cut. We are robbing our children of a future in the global market. They will not be able to compete with their conterparts from around the world.

  13. Elizabeth, you should be in politics. You have vision and drive, your ideas would get far. I agree with Allegra about contacting the Gates Foundation. You really have nothing to lose. I also agree with Ex-in-the-City, regarding the paypall button on your blog.

  14. It's strange I should read this today. Yesterday I was just thinking, what if? What if the province could no longer afford to care for Katie? What would I do? Makes me feel sick thinking about it. I have no advice but I do know how hard it is. Take care.



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