Monterey Bay Forum

DrCameronJackson@gmail.com

How “helpful” are the respite services provided to families with a disabled child?

In California, children with autism are assisted by the regional centers. There are non-profits and operate individually though connected loosely together. A child made eligible by one regional center is usually accepted by other regional centers though the case may be reviewed.

Due to CA budget issues typically families are offered 24 hours of respite a month though the number may be considerably increased depending on the individual’s particular circumstances. “Respite” is supposed to be time away from the disabled child and someone else takes care of the child so that parents get a real break.

In the Santa Cruz, Monterey, San Benito and Santa Clara Counties parents can receive respite hours away from their diabled child through varous agencies. The agencies take care of the paper work issues which negatively impact the overall helpfulness.

Below is from the parent of an autistic child that finds government “help” not helpful. And why not helpful. (more…)

DrCameronJackson@gmail.com

A woman recently wrote poignantly, Put my disabled son on Death’s Row in San Quintin and he will get three square meals, medical care and perhaps even a room with a view… The woman wrote in response to the proposed $568.6 million cut in money allocated for the 246,000 disabled in California served under the Lanterman Act.

The woman’s feelings are understandable given that it costs taxpayers $50 to 70 K per inmate in CA prison compared to the cost to care for each disabled person. Run the math ($4 billion in CA budget allocated last year divided by 246,000 disabled persons equals $16,260 spent per disabled person).

Maybe it’s time to put the family of each disabled person served by CA regional centers in the driver’s seat. Why not have vouchers that follow each disabled person — akin to school vouchers — that give families choice? That way people will become knowledgeable as what things cost and more empowered by making the choices they think best. (more…)

Some schools do a terrible job of educating their children. In failing schools in California parents of children in failing schools could exercise “parent trigger”. Parent trigger allowed parents to replace the public school system with a charter school.

Now the powers that protect the adults that run the public schools seek to crush parent trigger.

“Parent trigger” school reform was undermined by Governor Jerry Brown on his first day of office, He replaced seven reform members of the state board of education with UNION ALLIES including a lobbyist for the California Teachers Association. The new board plans to re-write the rules that govern the parent trigger law.

Assemblywoman Julia Brownley and state schools chief Tom Torlakson, both voted against parent trigger last year, plan to amend the law. Expect them to work for appeal of the parent trigger law.

When parents in Compton, CA exercised the parent trigger law the teachers urged parents to rescind their petitions Then, when that did not work, the district required parents to bring official photo identification knowing that some are illegal immigrants. A judge issued a temporary restraining order stopping the verification plan. In response the school administrations declared all petitions disqualified based on technicalities — some petitions were not stapled and some legal code numbers were mistyped. (more…)

New Jersey elected someone to make big changes. Like cut state spending. And, no more new taxes. And that is happening.

Why not cut taxes in California?

Let’s cut all government salaries over $100,000 to a flat $90,000 and see who wants the job. Let’s cut pensions so similar to the private sector. Government workers in certain jobs should get certain perks — but, given extra perks and security, they should not have the right to strike.

What say you to cutting taxes in California similar to New Jersey? (more…)

If parental rights of parents who abuse their children were terminated earlier, fewer children would be harmed. Three Strikes of abuse and parental rights should be terminated. Immediately. The child should then put up for permanent adoption. Give children a break to have a break from an unhealthy, abusive past. Currently the law allows parents who repeatedly abuse to still keep their parental rights.

What Three Strikes? Strike #1: Use of dangerous to drugs dangerous to fetus. All children born addicted are a strike against the mother and probably the father as well. I see heaps of cases where mothers have had several children all of them born addicted to heroin, cocaine, meth or a combination of drugs.

Strike #2: Neglect and physical and/or emotional abuse. Let CPA decide what constitutes abuse and neglect. Being spaced out on drugs and ignoring the child day after day is neglect. Hitting children that leaves marks is abuse. Not feeding or diapering children so they have horrible rashes is abuse.

Here is a real case why parental rights should be terminated early: The child, Erica, (not real name) was taken care of by her grandmother for the first few years. Left on a rug, fed but not much interaction with the elderly woman. Mother, who had been in prison re-appears and takes the child from age 4 to age 8. The mother’s boyfriend on one occasion chokes the child in public fast food restaurants. Both use and abuse various illegal and legal drugs. Child is taken away from them by CPS.

Erica, now age 8, was placed in foster care. A licensed psychologist assessed her and recommended that she be adopted by a two parent family with extended family and good structure. Take her to a church or place of worship. Enroll her in group sports.

That never happened. Erica is now age 18. She has been in a number of foster placements for over ten years. She takes medications for psychotic symptoms, ADHD and depression. She fixates on returning to live with her mother. Her mother has been in prison most of the last 10 years and is currently in prison

What skills does Erica have? She almost passed the Exit exam for CA in Reading. Her score was just a couple points too low to pass. Her life skills are quite Deficient.

Erica will have to cared for by taxpayers probably for the rest of her life. Her life would have had promise had she been adopted many years ago.

Maybe Three Strikes is too generous Abused in the womb and born addicted to drugs has such serious concequences. Had Erica been given a fresh start while very young she probably would be a productive young citizen capable of providing for herself and contributing to society.

Who is respeonsible for the harm to Erica? Her biological parents and relatives for sure. Also the social service system that moved her from one placement to another. And the legal system that bends over backwared to put children back with their bad parents. The law must be changed in California.

Your comments? written by Cameron Jackson cameronjacks@gmail.com

No budget crises apparent here! Today, 5-28-09, its a Thursday afternoon about 2:15. The Rio del Mar beach is largely empty. The parking lot is empty. Yet there sits a a State employee in her cubicle waiting to collect fees from potential visitors. She has nothing to do and nowhere to go. But she is paid taxpayer money to sit. And wait.

What she could do that would be useful is TAKE A SHOVEL and FREE THE BEACH. The water from the creek is AGAIN backed up.

Blue day tomorrow, Memorial Day at Aptos beach? Hope so. Nice day for a backyard barbacue? Hope so. Remember what Memorial Day is all about.

Remember to keep faith with those who died in Flanders Field, World War I.

“In Flanders field, the poppies blow…

Take up our quarrel with the foe:
To you from failing hands we throw
The torch; be yours to hold it high.

If ye break faith with us who die
We shall not sleep, though poppies blow
In Flanders Field.

A lot of young people have died to keep America safe and the world safe from terrorists. How best to keep faith with them?

Currently, 1 in 150 children in the U.S. are diagnosed with an autistic spectrum disorder (autism, pervasive developmental disorder, asperger’s disorder). Uhah’s rate is 1 in 133 children. Why so much higher? Beats me. The quality of life lead by adults with ASD is higher in Utah. Why? I suspect that family connections and social connections are tighter in Utah compared to a state such as California.

Father designs Internet game in memory of daughter
By John Sammon
Posted: 04/26/2009

APTOS – Dave Wardle, in struggling to come to grips with the loss of a beloved daughter to a rare cancer-like disease, thought he could best serve her memory by designing a free online computer game that would spread awareness of hystocytosis and raise money to fight it.

“Sofia passed away six months ago,” Wardle said. “This is a rare disease, with 1,500 cases a year reported in the U.S. It’s like cancer, and it’s a blood-born illness produced in the bone marrow.”

“Wardle, 39, a computer programmer originally from England, moved to Aptos after meeting his wife Rebecca in 1992.

Doctors first diagnosed Sofia’s illness as leukemia. It would later appear to be in remission, but instead develop into histiocytosis.

“It started on the skin,” Wardle recalled. “Sofia developed these huge lesions, and they were very painful. She had them on her feet and couldn’t walk around.”

“Up until then, she had been a normal first-grader, a loving child who embraced life, a big sister and friend to her classmates at Rio del Mar Elementary School. A curly-headed child, she played the usual games, dress-up, stickers, music and dancing. She could hip-hop dance, too.

“But that ideal world shattered. “Just before Christmas of 2003, Sofia developed a fever, and her stomach was distended and firm to the touch,” Wardle said. “We took her to the doctor and were immediately sent to Dominican Hospital for blood tests. That was the beginning of our ordeal.”
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“Only 2 years old, she was one of the youngest patients at the Lucile Packard Children’s Hospital in Palo Alto. She would be ill for five years.

“The disease progressed slowly, and during the treatments there seemed to be successes. “It was a rollercoaster for us,” Wardle said. “At one point in 2008, the skin symptoms were getting better, or they seemed to be. But the disease was attacking other parts of her body.”

“The parents had insurance. However, the medical bills ran into the thousands of dollars as the child had to undergo an agonizing round of treatments, including chemotherapy and radiation. Though the pain at times was enough for her to cry out, her father said she bore it with courage and determination. She wanted to get dressed up for school, and go back and be with her classmates. Toward the end of her life, she was planning to become a singer, and had an iPod filled with her favorites: Hannah Montana, Hilary Duff and music from the theatre production, High School Musical.

“It’s amazing how much courage she had, and with good humor,” Wardle said of his daughter. “She taught us the meaning of bravery.”

Sofia was 7 at the time of her death. Her parents have a son Quinn, 5.

Wardle said the loss of his daughter was a blow that had him searching for a way to not only remember her, but to do something to try to find a cure for the disease so future children would not have to experience it. “I had to take an extended sabbatical from work,” he said.

Wardle called being Sofia’s father both a blessing and a tragedy, a struggle full of love and heartache. But, he noted, his daughter will always be an inspiration for him.

He created a Web site in Sofia’s memory called “Sofia Maze.”

An interactive challenge, the game involves helping Sofia navigate a multi-stage picture maze, from her home in Aptos, to the Lucile Packard Children’s Hospital. The game combines beautiful images, with jokes, visual humor and whimsical distractions.

“Low-tech gaming can be just as compelling as the latest offering from Sony or Nintendo,” Wardle said.

The game created by Sofia and her dad went live Friday. The site will promote sponsorships and raise funding through donations to fight histiocytosis, the money going to the Histiocytosis Association of America and Jacob’s Heart Children’s Cancer Support Services.

People wishing to donate to fight histiocytosis can call Sofia’s father at (831) 332-1021 or visit sofiamaze.com Sofia’s Maze.