Contributed to TLB by: Health Impact News and Medical Kidnap
Jeffrey and Elsie Golin have been fighting against the State of California and California’s San Andreas Regional Center (SARC) for nearly fifteen years to have their daughter returned to them. SARC is a community-based, private nonprofit corporation that is funded by the State of California to serve people with developmental disabilities and works with Stanford University. The Golins are fighting for their autistic daughter Nancy’s right to be able to return home to live with them, and fighting for the right to advocate for their daughter’s best interests.
A series of events led up to the day in November 2001 when the Palo Alto Police found Nancy wandering and took her against her will to be evaluated by doctors at Stanford University hospital. Using an allegedly phony Temporary Restraining Order, (TRO), signed by a Palo Alto police officer and not a judge, a TRO that was allegedly never actually filed in the court record, they successfully prevented Jeff and Elsie from having contact with their daughter Nancy for two weeks.
When the TRO expired without a hearing and a court ordered her to be released from the 5150 detention, Stanford allegedly violated the order and gave her to SARC to hide her in an undisclosed location without a court order for nine months, where her parents say she suffered a broken collarbone and was forced to take inappropriate psychotropic medications, supposedly for her autism. SARC’s psychiatrist allegedly said he thought he could make her able to talk by giving her Risperdal.
Constitutional Rights Violated?
According to their main attorney, Dave Beauvais, there are two main issues that lie at the heart of this ongoing case. The first is the issue of the Golin’s losing all rights to act in their own daughter Nancy’s best interests and the second is the issue of whether a person who is disabled has the same protection under the U.S. Constitution as a non-disabled person does.
The two issues the state brought as grounds for removing Nancy from their care were the fact that she wanders away and the fact that the Golins disagreed with the doctors at Stanford University about which medication was best to prevent Nancy’s seizures.
Autistic Daughter Wanders Away from Home and is Taken into Custody by the State
Wandering away from her parents was the catalyst for the state to take Nancy.
The events of November 15, 2001 began when Elsie left Nancy alone briefly in their apartment while using the rest room. Despite their continuous efforts to contain Nancy, her perseverant nature prevailed and she got out and wandered off.
Jeff Golin stated:
“No matter how vigilant we were, it was nearly impossible to prevent 100% of the time. But we kept it down to a minimum. When we were home, we always kept a padlock on the front door to our apartment to keep her inside with us. We adapted our living space in many ways to meet this challenge that other families with non affected children could not. Yet she still found amazing, clever and unforeseeable, even sometimes amusing ways of escaping to go out walking at any time of day or night. We learned from each experience how to better deal with it.”
After unsuccessfully looking for her for ten minutes, the Golins decided to enlist the efforts of the Palo Alto police. Nancy appeared seemingly by herself less than an hour later. Police officers told the Golins that they needed to take Nancy to Stanford University hospital for evaluation. The Golins were told they could come pick Nancy up later at the hospital. They allegedly said nothing to them about holding Nancy on a 5150 hold, or detaining her, so the Golins cooperated.
The Golins were not allowed to transport her to the hospital. When Nancy got to Stanford, she was placed in a psych ward as “gravely disabled,” and the Golins were not allowed to see her or speak to her doctors.
Wandering is very common among autistic patients as is reported in Austism Speaks:
“It’s important to see that the high frequency of wandering in affected children contrasts to relatively little wandering in their unaffected siblings,” says Autism Speaks Assistant Director of Public Health Research Amy Daniels, Ph.D. “This clearly communicates that wandering has little to do with parenting style and more to do with the nature of a child’s autism.” Dr. Daniels co-authored the study, which she helped conduct before coming to Autism Speaks this year. (See Dr. Daniel’s related blog here.)
Nancy allegedly continues to wander in the custody of the State.
Disagreement Over Which Doctor’s Advice to Take on Medication
The Golins followed their neurologist’s prescription agreeing Nancy should be taking Phenobarbital instead of Dilantin, and her mother says she always gave Nancy this medication as instructed. They agreed with Nancy’s neurologist that the best course of treatment was a higher dose of Phenobarbital as opposed to Dilantin because of the devastating side effect of bone loss.
Nevertheless, in 2000, an intern at Stanford Hospital ER allegedly reported the Golins to Adult Protective Services, claiming the prescription dosage was “wrong.” He allegedly said to the Golins:
“Either you’re not following doctor’s orders or the dosage is wrong.”
Even the doctors at Stanford allegedly disagreed with each other about which medication was best and at what dosage.
Now that Nancy has been on Dilantin for fourteen plus years her spine is bent over and she has had her teeth replaced more than once.
Dilantin drug precautions:
Dilantin: This drug can also increase your risk for developing osteomalacia (weakening and softening of bones) and Hodgkin lymphoma (cancer that begins in the lymph nodes). You may also experience swollen lymph nodes while taking Dilantin. You should discuss these risks with your physician. Dilantin may also cause swelling and bleeding of the gums and could increase your risk of gum damage. You should discuss proper ways to care for your teeth and gums while taking this drug. (Source.)
Nancy Cut Off from her Family – Placed in Psych Ward
When Nancy was taken away she was upright and happy. Today she is depressed, being housed in a group home somewhere 320 miles away from her family and the Golins are only allowed to see her in supervised visits once a week at a place that is not her residence. They are not allowed to talk to Nancy’s caregivers. Even Dave Beauvais, Nancy’s attorney, and Nancy’s court appointed guardian ad litem, Nancy Delancy, had to get a court order to be allowed to visit their client Nancy at her residence for one hour.
Nancy ended up being placed in a dangerous psych ward involuntarily among patients who were a danger to themselves and others. Initially she was placed under the Section 5150, pronounced “fifty-one-fifty,” of the California Welfare and Institutions Code (WIC) which authorizes a qualified officer or clinician to place a 72 hour involuntary hold on a person suspected to have a mental disorder that makes him or her a danger to him or herself, a danger to others, and/or is gravely disabled.
According to Jeffrey Golin, police used a “phony court order” and took her to be seen by a Stanford University psychiatrist who prescribed seizure medication that the Golins had researched and decided was not appropriate due to the long term effect of bone decay and tooth loss. The Golins were not allowed to know where Nancy was being held for 9 months.
Medical Malpractice in Administering Drugs?
In building their case against the Golins, Palo Alto Police, APS and SARC allegedly made the claim that a burn on Nancy’s foot was caused by her parents and was proof of their neglect. However, the parents claim that the third degree burn was caused by Stanford University medical staff in the hospital where they administered Dilantin (phenytoin) through her foot. According to the instructions given to nurses and pharmacists on the Massachusetts General Hospital website:
“Avoid administration via hand, wrist or foot. Use best access site possible (large bore vein). If unavailable, consider oral route, or another agent. Assessment of IV site is critical, particularly with the alkaline pH of Phenytoin. Avoid infusing Phenytoin via IV in the hand, wrist or foot.”
Disability Center Allegedly Admits to Violating Law
At the conservatorship trial that ensued, officials from the San Andreas Regional Center (SARC) allegedly stated that they knew that they had violated the law.
The trial lasted two months, from September 30 to October 17, 2003. Despite the alleged admissions of wrong doing by the San Andreas Regional Center director, the jury deliberated for one hour. The Golins have appealed and are waiting for the results of the appeal based on poorly administered jury instructions.
The Golin’s attorney Walter Pyle reportedly asked the director Kinderlehrer:
“How long did you think you could keep Nancy without a court order placing her with the agency?”
The adult protective services manager allegedly admitted that they had a bed ready for Nancy before they had a court order legally taking her into their custody. Nancy was kept in a group home initially where it was allegedly discovered they were using restraints to keep her bound so she couldn’t wander.
Discrimination Against People with Disabilities?
As a result of the time spent in the care of the state of California, it appears to many people associated with this story that Nancy was taken away from her parents not as the results of bad parenting by the Golins, but instead because of a stigma and an arrogance in this society that parents are not as qualified to care for disabled children as bureaucrats are.
Nancy allegedly continues to wander. She reportedly continues to have break through seizures on Dilantin. Her parents say that she is doubled over physically now because of the bone loss in her spine, and her teeth have had to be replaced. She sees her parents infrequently, and is reportedly depressed and is being forced to live away from them.
Nancy clearly is asking to go home with the Golins by taking their keys from them and trying to get into their car when they visit. For 31 years the Golins claim that they have made difficult choices for Nancy in her best interests with love and sacrifice as good parents do. Each time allegations were brought up against the Golins they were allegedly unfounded or unsubstantiated. Doctors disagreed about what dosage to put her on and what medications were best.
But as Jeff Golin says:
“Once you are accused you have to stay accused. They can’t be wrong. Stanford University has too much at stake to protect their preeminence in the world. Their prestigious reputation.”
A Gross Violation of Civil Rights?
The Lanterman Disabilities Services Act is a part of the California legislation protecting persons with developmental disabilities and guaranteeing their right to services that will enable them to live like people without disabilities. According to the Lanterman Act, Nancy has the right to live where she wants and has the right to choose with whom she wants to have relationships.
It is noteworthy to point out that the day program Nancy is now enrolled in is paid by the state $6000 a month. The Golins are billed for their supervised visits. The state has allegedly placed a lien on the Golins for $900,000.
Is Nancy Involved in Experimental Drug Trials?
The Golins allegedly have no right anymore to see Nancy’s medical records, but they suspect that she is in a medication trial.
One of the experts for SARC that testified at trial spoke about the benefits of electric shock therapy. Without knowing what exactly the state doctors are doing with Nancy, it is disconcerting to say the least to the Golins that they had an expert who is promoting electric shock therapy.
Family Wants a New Trial
Jeff Golin wants the world to know about their story and states:
“We had a two month trial this year, but for reasons we still are not certain about we lost. We have appealed and are on hold while we raise the money for the transcripts. Some of the assertions of unrestrained authority by opposing counsel were truly shocking to anyone calling themselves an American, and if they provide us with an accurate transcript it ought to be an outrage, but we aren’t getting much coverage.”
The family has put up a Facebook Page to support Nancy coming home.