Sally debunks bullsh$%# (cause I can't put Sally's name in the same line as a curse word!)

Sally of Maggie World wrote a letter to the editor of The San Francisco Chronicle about yesterday's article discussing impending cuts to California Children's Services. It's short but sweet. You should read it, and then go over and visit her blog Maggie World, where she chronicles life with her hilarious, wonderful daughter Maggie.

And then go out and make a stink of your own!

Smells Like Bullshit, Part 3,456,789

There's not much meat on it anymore, but I've got a bone to pick. Maggie's mother posted this article on Facebook yesterday, and it riled me up. Actually, it didn't rile me up as much as make me sigh and grit my teeth and begin percolating. In a nutshell, California Children's Services Medical Therapy Program that serves disabled children, is on the chopping block again, and nearly 5,000 children will lose their physical and occupational therapies. The move will be carried out as part of a larger plan to balance the California budget which faces a $15.7 billion shortfall. Families making over $40,000 are being asked to pony up and pay their share.

Everyone has to sacrifice something, right? The policy-makers are said to have to make "very difficult decisions," but I smell bullshit. According to spokeswoman Michele Stillwell-Parvensky from the non-profit Children's Defense Fund of California, these cuts should be considered "cascading cuts, that have hit children -- particularly disabled -- in recent years as federal, state and local governments withhold money from school, health and childcare budgets." Just like the bone picked dry, the backs of these children with disabilities and their families are bent under the burden of incremental cuts made in the service of the "larger good."

I look around every single day and really don't see the sacrifices called for as being equally distributed. I see people driving enormous new vehicles that probably cost nearly $100.00 to fill up with gas that lasts for less than twenty miles. Many of these people believe it to be an American right to drive whatever car they desire. I see people buying multi-million dollar homes that demand enormous amounts of energy to heat and cool, their properties used as tax write-offs. Presidential contender Mitt Romney evidently has a three million dollar house in the tony coastal town of La Jolla that he is looking to tear down to build a bigger, eight million dollar one with a car elevator. But hey, here in America, if you make that kind of money, it's your right to spend it as you choose. And park it somewhere that you choose, too. The movie studio that produced The Avengers is paying one of its stars, Robert Downey, Jr., over $50 million for his role in the blockbuster, a movie that has pulled in hundreds of millions of dollars since it opened. And then there's the trillions spent in the decade-long wars in Iraq and Afghanistan, the madness of bombing people and children, sacrificing young men and women with the fake objective of liberty and justice for all.

I'm not going to belabor a point that I've made over and over again. Balancing the budget on the backs of disabled children and their families as "shared sacrifice," is bullshit in this country. And if we can't come together as a people who know lives of the greatest economic and military power and luxury that the world has probably ever known and make cuts and sacrifices elsewhere, well then, we're pathetic.

Sighs, Exhalations and Irony/Disgust/Despair

The Body of Abel, Found by Adam and Eve, William Blake

Republican Presidential contender, Rick Santorum, is calling for an end to public education.

Can I hear a sigh? (and I'd be ever so grateful, if you're a Republican, if you'd tell me, why, why does your party stand for this man?)

Republican Presidential contender, Rick Santorum, is calling for an end to prenatal testing, using the religious/anti-abortion defense. 

Can I hear an exhalation? (see parenthetical statement above)

The state of California is debating whether to help balance the budget on the backs of the ultimate money grubbers: children with special healthcare needs. 

Can I hear some irony, disgust and despair?

Here's a bit of information about the last thing on my list. If you want to express your own irony, disgust and despair, click on the link and sign the petition.

Can I hear another sigh?

The Medical Therapy Program (MTP) is a special program within California Children's Services that provides physical therapy (PT), occupational therapy (OT) and medical therapy conference (MTC) services for children who have handicapping conditions, generally due to neurological or musculoskeletal disorders.

Currently, children in California with one of these qualifying medical conditions qualify for services regardless of their financial status. 
Cerebral Palsy, Spina bifida, Muscular dystrophy, Rheumatoid arthritis, Spinal cord injuries, Arthrogryposis, Osteogenesis imperfecta, Head injuries.  
The California state budget proposes to align income eligibility requirements for Medical Therapy Program with the broader California Children's Services (CCS) Program. Currently, there is no financial test for eligibility. Under the proposed eligibility standards, families with annual income more than $40,000 or with annual CCS related medical expenses less than 20% of their annual income would not be eligible.

This means, a family with two working parents who make minimum wage make too much money and are no longer eligible for medial therapy services.  They would be responsible for finding these services and paying for these services for their children.  This is a huge financial burden for any family, especially families with children who have special needs.  A family with good medical insurance would still have to pay $200-500 per month on therapy.  And, the therapy sessions would have a maximum number of visits, which is usually around half of the time the child needs.  A family without medical coverage would likely not be able to afford services at all.

The Medical Therapy Program provides necessary physical and occupational therapy for children with medical conditions that effect their day to day life. 


Addendum:


I urge you to go here and read these thoughts about disability and government. I could never say it so well.

Sarcasm, not just implied

Romanian institution for disabled children, 2006

Funding for home health aides would be cut by 20%, and services for the disabled would be slashed by $100 million -- on top of deep reductions already made in those programs.


That could be the last straw for Michelle Franklin, 45, of Stockton, who receives just under $800 a month from the state to care for her schizophrenic son and an elderly neighbor. If her payments drop by 20%, she said, she may have to commit her child to a state mental hospital. "I love my son dearly and it's going to break my heart, but if they cut my hours I may have to make the decision to let my son go," Franklin said. "That's going to end up costing the state a lot more in the long run."



-- Los Angeles Times, Thursday, November 17th, 2011, in an article spelling out upcoming California budget cuts if revenue is not as expected in December.

"I earn my pay," adding, "Republicans earn their money."

-- GOP state Rep. Lou Blessing, Speaker Pro Tempore of the Ohio House of Representatives, in response to a proposal to cut taxpayer-financed politicians' salaries as a balance to cuts in teachers' taxpayer-balanced salaries, November 6th, 2011


(I was going to post a number of quotes from Newt Gingrich about shared sacrifice, and some information about the enormous amounts of money the man and his lovely wife have spent at Tiffany's over the years, all while espousing his individual "frugality," but I threw up a little bit in my mouth as I perused the stories and decided to call it a day.)

There's a difference between a closed library and being able to get out of bed on your own,

writes Sally over at Maggie World. Sally is the mother of a teenage girl with severe disabilities, an attorney and an impassioned advocate for children and adults with disabilities. In her brief yet powerful blog post yesterday, she addresses the draconian cuts in services and entitlements for children like hers and mine as well as senior citizens. She recognizes, as I do, that the California budget is in dire straits and that we all must tighten our belts, to use a trite phrase.

But she feels, as I do, that those children and adults with disabilities -- the most vulnerable in our state and country -- have no belts to tighten.

I hope you'll read Maggie's post, and if you're a Californian, tighten your belt all you can but please, please support those who cannot.

Write your assemblyman; write your state senator. Do something.

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.

Whew!

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.