Saturday, May 31, 2008

In Smalltown USA

Even in my little hometown stuff goes down around the exploitation and abuse of vulnerable people. I was just looking at the local paper online when I ran into a piece about residents being stolen from, and staff “advising” them not to contact the police. I tell you, it’s epidemic. From the Southampton Press...

Southampton Village

A resident of the Hamptons Center for Rehabilitation and Nursing told Village Police on May 22 that someone stole $61 from his room. The complainant also said the staff discouraged him from reporting the incident to police. A short time later, another resident reported money that she kept in her Bible inside her purse was stolen. The resident said $40 was taken about a week ago, but she did not report it. Later, a third resident reported that $420 had gone missing from her room in August last year, but she was advised by the staff not to call the police. She also alleged that $105 went missing in January. Police said the staff social worker at the center recorded reports of the missing money.

Another Fight

All over the country there seems to be a lot of arguing going on around the care of people with developmental disabilities. It is refreshing to see people standing up and taking a strong position for what they believe in. I wish I saw more of this going on; paritcularly here in Oregon. From the Times Picayune in New Orleans...

Bills aim to cut cost of home-based care programs

Medicaid services help elderly, disabled
Saturday, May 31, 2008
By Jan Moller

BATON ROUGE -- After years of trying to reduce the state's reliance on institutional care for the elderly and disabled, lawmakers this year are complaining about the spiraling costs of the home- and community-based programs designed to replace it.

With three weeks left before the Legislature adjourns, several bills are moving through the process that aim to impose new cost controls and slow the growth of a waiver program that serves the developmentally disabled.

The bills, which are backed by the nursing home industry, come amid warnings from legislative leaders and the state Department of Health and Hospitals that home-care programs could eventually bankrupt the Medicaid program and reduce or cancel such services.

"The growth in these programs is something I don't believe . . . we'll be able to maintain," House Speaker Jim Tucker, R-Algiers, who sponsored one of the bills, told a Senate committee this week.

But advocates for the disabled question whether some of the changes are needed, and are fighting legislation that would scale back an ambitious effort, begun last year, to reduce the waiting list for community services that can stretch a decade or more.

At issue are two programs, financed by federal and state Medicaid dollars, that are designed to let elderly people and those with developmental disabilities to live independently.

The long-term personal care services program provides home-care attendants to help with cooking, cleaning and other activities for low-income people who are medically qualified for nursing home care. The New Opportunities Waiver, meanwhile, provides a range of services -- from home modifications to specialized nursing care and specialized medical equipment -- to people with developmental disabilities.

The health department says the personal-care program has grown from about $30 million in 2004 to a projected $192 million in the fiscal year that starts July 1. The cost for the NOW waivers, meanwhile, has escalated from $200 million in 2002-03 to $631 million next year, with the cost of care to many recipients topping $100,000 a year.

Charles Castille, undersecretary of the Department of Health and Hospitals, said the NOW waiver is sometimes referred to as a "gold card" because there are few restrictions on the types of services a person can receive once they've been accepted into the program.

Sandee Winchell, executive director of the Louisiana Developmental Disabilities Council, said the cost of home-care service, while expensive in Louisiana compared to other states, is still lower than the $176,000 annual per-patient cost to run a state developmental center.

"There's so much concentration right now and so much talk about the waiver being too expensive, but the institutional care right now is way too expensive," Winchell said.

House Bill 1273, by Tucker, would require the health department to develop cost control mechanisms for both programs by January, but does not say what forms the controls should take. The bill cleared the Senate Health and Welfare Committee this week and awaits a vote on the Senate floor before going to Gov. Bobby Jindal's desk for a signature or veto.

More controversial is House Bill 914 by Rep. Jim Fannin, D-Jonesboro, which would scale back a 2007 law requiring 12 percent of any budget surplus, up to $50 million, be used to pay for new NOW waivers, thereby reducing the waiting list that stands at 11,287. Thanks to the new law, the state plans to add 2,025 waivers next year, which then will have to be paid for in subsequent years out of the state general fund.

Fannin's bill, which awaits a vote on the House floor, would allow the surplus dollars to finance existing services, not just new waiver slots.

While disability advocates say Fannin's bill will hurt their efforts to reduce the backlog of people waiting for services, Castille said it would be irresponsible for the state to use surplus money for new services that might later prove unaffordable.

Another Fight

I believe it's important to present both sides of a disagreement. I also believe ALL people have the right to live well in their community.

This story is about the closing of an institution that has served people with developmental disabilities in Tinley Park, which is a burb of Chicago. The fight is about whether or not it's the right thing to do. Draw your own conclusions. From

How bad is Howe?
Tinley Park- After the developmental canter's harsh review, a separate group is stepping up to defend the facility
May 31, 2008

By Carole Sharwarko, staff writer

Disability advocacy groups clashed Friday with family members of residents at Howe Developmental Center about the institution's fate.

A coalition of disability organizations, led by Equip for Equality, hosted a press conference where they presented a scathing report card for Howe, a state residential care facility in Tinley Park. The report detailed abuse and neglect suffered by residents, who have a wide range of developmental disabilities. The groups want Howe shuttered and its residents moved to community living.

Equip for Equality president Zena Naiditch reminded the crowd that Howe's federal funding was revoked after it failed to meet minimum standards. She recounted the grisly story of a blind, mentally disabled and mute woman with heart disease.

"She usually received anti-anxiety medication before medical procedures," Naiditch said. "But one day she had an unscheduled pap smear without medication. When she became very upset and began thrashing around, staff held down her arms and legs while the doctor conducted the pap smear. Within an hour, she collapsed and died."
Because of ongoing problems and the failure of rotating administrations at the center to bring change, Naiditch said Howe is beyond repair.

But representatives from the Howe Friends and Family Association who attended the press conference said the center serves their family members well. They admit it has problems but balked at closure as the only option.

"Howe is not perfect, but I have not seen the abuses you talk about," said Linda Brown, of North Aurora, whose daughter has lived at Howe for 19 years. "My daughter receives care 24 hours a day, seven days a week."

Brown and other residents' family members said community settings - in which small groups of disabled people live with assistance in neighborhoods - are lacking, and not always better options.

"I don't want to lose what I have on the chance that in five years there will be a better place for my daughter," Brown said.

Howe Family and Friends Association president Betty Turturillo, of Tinley Park, said she thinks the advocacy groups are exaggerating the situation at Howe to better make their point.

Equip for Equality abuse investigator Deborah Kennedy said Howe staffers might offer better treatment to residents whose family visits often. Turturillo said she sees no evidence of that.

"We've got some wonderful staff at Howe, and some who aren't as good," Turturillo said. "I don't think the people without family are treated any differently."
Kennedy said residents may be reluctant to voice dissent while they still live at Howe, fearing retaliation.

Friday, May 30, 2008

Survival of the Fittest

According to this article from the Associated Press, Oregon's DHS will allow ignorant red necks with guns decide where people with mental health issues live. NIMBY (Not In My Back Yard) has won out over the best interests of these folks. It amazes me that these sorts of Cro-Magnons have managed to survive in Fossil.

Community stops treatment center outside Fossil
5/30/2008, 1:17 a.m. PDT
The Associated Press

FOSSIL, Ore. (AP) — Community opposition has derailed plans to build a residential treatment center for mentally ill sex offenders near Fossil.

Morrow-Wheeler Behavioral Health, a private nonprofit, sought to build the treatment center three miles outside the Eastern Oregon town of less than 500 people. It received a $1.06 million Oregon Department of Human Services grant to develop the eight-bed facility.

Small-scale, secure residential treatment facilities are needed for the mentally ill, and nine are proposed for development in the 2007-09 biennium, said Ken Palke, a DHS spokesman in Salem.

Oregon isn't allowed to warehouse mentally ill patients in large institutions, and small, community-based facilities are "good for the patient and good for the patient families," he said.

But the prospect of mentally ill sex offenders living nearby made many residents uncomfortable, said Dan Robinson, 45, of Fossil. Some locals worried about the possibility of escapes and objected to plans for a therapy program that included patient outings, he said.

Caught in the storm of opposition were Wheeler County District Attorney Tom Cutsforth and Sheriff Dan Rouse. Both were appointed to the nonprofit's board because of their county positions.

Documents calling for Cutsforth's recall because of his participation in the project were submitted May 16 to the Oregon secretary of state's office. The same day, Rouse announced he was taking a leave of absence until Sept. 1.

The opposition peaked this month when a local man sent a threatening e-mail to state officials. The note said he intended to drive along the road and shoot sex offenders after the facility was built, Cutsforth said. At that point, local and state officials felt they couldn't justify investing in a place where patients wouldn't be safe, he said.

A selling point was the prospect of 15 jobs paying $30,000 a year plus a $60,000-a-year nursing job, Cutsforth said. The nonprofit hired an administrator, put down earnest money on the building site and broke ground before backing away from the project.

"I think Wheeler County has shot themselves in the foot here," Cutsforth said.
Robinson, however, said Fossil is too far from the nearest large hospital, and has inadequate law enforcement, ambulance and fire protection services. Putting mentally ill sex offenders "in a remote area like this without medical and fire protection seems to be a real harebrained idea," he said.
Information from: The Oregonian,

Wednesday, May 28, 2008

Are You Listening Yet?

I'm not going away until this problem is solved! From today's Oregonian...

Man gets 25 years for sexual attack
Foster home - The disabled victim was in the care of the Gresham 18-year-old's mother
Wednesday, May 28, 2008

The Oregonian Staff

An 18-year-old Gresham man who sexually attacked a 37-year-old developmentally disabled woman was sentenced Tuesday to 25 years in prison.

One investigator described John Jay Chapman as one of the "most troubling" sexual predators she's come across in many years.

In November, Chapman sexually attacked the woman, who has cerebral palsy and lived in his mother's state-licensed adult foster home. Chapman's mom, Marsha Chapman, called 9-1-1 after she found blood on the woman's sheets and the client refused to eat or drink. She was also running a temperature.

A surgeon removed an 11-inch toilet scrub handle from the woman's abdomen during surgery. He estimated it had been there for 24 to 48 hours. The woman's injuries caused a life-threatening infection.

Chapman was charged with first-degree rape, first-degree sexual abuse, first-degree unlawful sexual penetration and assault. He pleaded guilty to unlawful sexual penetration and assault two weeks ago in Multnomah County Circuit Court.

Twice since last month, Chapman, who shook uncontrollably during his court appearances, backed out of pleading guilty. But after saying he'd changed his mind for a second time, Judge Julie Frantz called him into chambers and Chapman returned to the courtroom a while later and pleaded guilty.

During Tuesday's sentencing hearing, Chapman declined to speak.

Frantz told Chapman that what he did will affect the victim for the rest of her life.

"This is a horrific crime and you are paying a significant price in terms of the sentence," Frantz said.

The Oregonian reported last year that about 20 people with developmental disabilities who live in the state's group and foster homes are sexually abused each year. At least one in five developmentally disabled adults in these state-licensed homes has been abused by caregivers since 2000, when the state finished moving to community-based care after closing the Fairview Training Center in Salem.
Chapman lived in the home with his mother and the client. His mother told police she received a foster-care license in 2003, but she'd cared for the victim for about 20 years.

Marsha Chapman told authorities she remembered waking up at about 3 a.m. one night in November to the sound of her client's bed banging against the wall. She paid no heed to the noise, figuring her client was "playing."

The next day, she noticed her client was wearing different sweat pants than she went to bed in, that she had a fever and that her stomach was bloated. She called 9-1-1 at about 12:30 p.m.

Gresham police investigated, and Chapman was arrested about two weeks later. He told investigators he drank a considerable amount of whiskey and beer the night of the attack.

Deputy district attorney Greg Moawad said he doesn't know how the woman has fared in her recovery, but she has since moved to a different care home.

Aimee Green:503-294-5119;

Tuesday, May 27, 2008

The Secret About Transparency

I received a forwarded email the other day regarding a website that the Department of Human Services has set up. It contains the names of individuals and agencies who have had substantiated complaint findings in nursing facilities, assisted living facilities, residential care facilities, and adult foster homesthat serve seniors & people with physical disabilities. The email originally was sent out by Mary Gear who is the Administrator, Office of Licensing and Quality Care, SPD DHS.

The document starts out by saying; “SPD has a long history of transparency and is a strong supporter of consumer information. I am pleased to announce that we have added to this history” A history of what?? Seniors and people with Disabilities is, and has been run in secrecy for a long time now. My personal experience with the clandestine way this organization operates goes back to 2003. That’s when I asked James Toewes (head of SPD)about the savings the state had seen by setting up brokerages for providing services to adults with developmental disabilities.

He was so reluctant and unwilling to tell me that a Senator had to intervene on my behalf months after I first asked. He didn’t want to fess up to the 29 million dollars saved. Of course this money was secretly shifted to other programs in the budget, but hey; that doesn’t count as non transparent, right?

Monday, May 26, 2008

A Case By Case Basis?

In 2002, then Oregon Governor John Kitzhaber, apologized to the developmental disability community for the forced sterilization of thousands of people in Oregon over the course of many years. There had been an effort in our state to take away the human right to give birth. Why? There’s a few different reasons. A big one was that the common belief was that people with developmental disabilities were incapable of parenting.

Fast forward to Florida in 2008.This story comes from the St. Petersburg (Fla.) Times. What strikes me is that there is no real mention of what her “aide”(s)’ responsibilities were. Apparently teaching her how to care for her babies wasn’t one of them. If you actually go to the article, you’ll see some interesting comments at the end.

Friday, May 23, 2008

Makes Me Want to Toss My Cookies

All over this country more and more stories of violence (this time sexual)toward people with developmental disabilities are being reported; largely because of the internet. The Berkshire Eagle printed the following story yesterday. It inolves a woman with a severe developmental disability, her criminal family, and boneheaded staff, hired to protect her.

Police: Workers missed sex abuse signs

Lee group home workers facing fines
By Jack Dew, Berkshire Eagle Staff

Thursday, May 22

LEE — Four employees of the Department of Mental Retardation face district court charges of failing to report a possible sexual assault of a disabled woman.

Police were informed three days after the fact that a 33-year-old, mentally retarded woman, who lives in the care of the Department of Mental Retardation, returned from a visit with her family showing potential signs of sexual abuse. Any physical evidence had likely been destroyed by then, police said, and they did not charge anyone with assault.

But the four employees — Jennifer A. Kergaravat, Shirley A. Edgerton, Barbara M. Symonds and Kathy T. Ragusa — could face a fine of up to $1,000 each if convicted of the failure-to-report charge. State law requires caregivers for disabled people to inform the state Disabled Persons Protection Commission immediately if they suspect abuse.

According to court documents and police reports, the alleged victim does not speak and communicates through simple sign language, gestures and by pointing at pictures. She has lived in the DMR's care for several years, since her brother was convicted in 2000 of sexually assaulting her. Kergaravat ran the home and reported to Edgerton, while Symonds and Ragusa worked with the residents.

Given her history, the group home workers had been warned to pay careful attention to the woman when she returned from family visits, including performing "body checks" to look for any signs of abuse.

In April 2007, she visited her mother and father, who live in Richmond. When her father brought the woman back to the home that evening, workers noticed that his pants zipper was down. Later, when Symonds was undressing the woman for her bath, she discovered the woman's bra was inside out and found a white fluid in the woman's soiled underwear.

Symonds showed both to Ragusa, according to police reports. She tried to call the worker who had dressed the woman that morning but was unable to reach her. In the meantime, she washed the woman's clothes, possibly erasing physical evidence of assault, police said.

Kergaravat was informed of the woman's condition, according to statements given to police, and she in turn notified Edgerton.

The four workers said they didn't report the abuse to the Disabled Persons Protection Commission because they were not certain that the woman had been sexually assaulted, according to court documents.

"I usually err on the side of caution," Edgerton said in a signed statement included in court records, "and I would (file) a report if something met the criteria. I felt that all I had was that (the woman's) father's fly was down. The (soiled underwear) is a common occurrence for (the woman). My staff sometimes mess up, and it could be they put (the woman's) bra on backwards. In my mind, I thought there was nothing to (file) on. There were no marks on (the woman) and her behavior was normal."

Three days after the woman's visit to her family, a part-time worker learned of the alleged abuse and called police. By then, however, the physical evidence had been destroyed, investigators said, and it was impossible to determine whether the woman had been sexually assaulted. Authorities did, however, impose a protective order that prevents the woman from visiting her family without a chaperone.

State police sought a criminal complaint against the four case workers, which was granted by a clerk magistrate in December. In March, Edgerton's attorney, Judith C. Knight of Great Barrington, filed a motion to dismiss the charges. Judge Paul M. Vrabel denied that motion on May 12, concluding there is probable cause to believe a crime occurred.

"At trial the defendants will be free to explain their subjective reasons for not making a report," Vrabel wrote.

Edgerton has been reassigned pending the outcome of the case, a Department of Mental Retardation spokeswoman said; the current status of the other three employees was not available yesterday.

Proactive Approach

I ran into a very cool resource on the internet this morning. With all the talk about the need for better training for direct care workers, there are already self study articles available. If these were made mandatory for ALL people working with folks who have developmental disabilities (yes, that would include administrators, managers, etc.) I think we might see less violence and exploitation perpetrated. The name of the website is...

Nursing Assistant Resources On The Web

May 22nd, 2008

Resources for CNA’s For Learning

Two resources for CNA’s and other direct care workers for learning.
Self study articles from the state of Oregon’s Community Nursing Tools site; these are all in PDF:
Challenging behaviors - Part 1
Challenging behaviors - Part 2
Documentation guidelines
Fall prevention
Infection control
Medical terminology - Part 1
Medical terminology - Part 2
Medication safety
Pain management
Quality care - without restraints
Your body - changes through the years

And this, ABUSE PREVENTION TRAININGS, again, in PDF. Facilitators Guides for each module are available as well.
Module 1: Person-Centered Care
Module 2: Identifying Potential Signs of Abuse & Neglect
Module 3: Abuse and Neglect – Defining & Reporting
Module 4: Stress Triggers and Trigger Busters – Life Influences
Module 5: Stress Triggers and Trigger Busters – Job Challenges
Module 6: Stress Triggers and Trigger Busters – Client Behaviors
Module 7: Stress Trigger Signals
Module 8: Active Listening
Module 9: De-escalation – Conflict Resolution
Module 10: De-escalation – Client Behaviors
Module 11: When Abuse Happens
Module 12: Active Communication – Learning Circle

» Posted by Heather / In the following categories: Educational, Nurse Aide In Service & Education Sites, Skills, Training

Tuesday, May 20, 2008

When It Rains It Pours (Not a Weather Report)

This story was forwarded to me for my blog, which focuses on the challenges people with developmental disabilities face. The report is from the Galveston Daily News. It blows me away that an actual protective services case manager would behave in this way.

Examiner Argues Man Was Dead For Days

By Sara McDonald
The Daily News

TEXAS CITY — The state is reviewing claims from an adult protective services caseworker who reported seeing and talking to a 21-year-old cerebral palsy patient on a day medical reports say he was dead.

The caseworker, whose name hasn’t been released, told her supervisor that Alfredo Garcia Jr. was talking and “doing fine” Monday.

On Tuesday, she went to the Sundance Apartments, 3404 Ninth Ave. N., and found him dead.

The caseworker told supervisors she also visited Garcia on May 9 as part of regular visits to the apartment.

Galveston County Medical Examiner Dr. Stephen Pustilnik told The Daily News on Friday that Garcia had been dead for at least three and a half days when found.

“It’s not possible (that it was less time,)” he said.

Initially, John Florence, the medical examiner’s office spokesman, said heat could have played a factor in the rate Garcia decomposed. Power to the apartment was shut off.

Pustilnik said even without air conditioning, Garcia would have had to be outside in 100-degree heat for that explanation to be possible.

Garcia wouldn’t have decomposed at four times the normal rate sitting inside on a living room chair where police found him, Pustilnik said.

Gwen Carter, the spokeswoman for the Region 6 division of the Texas Department of Family and Protective Services, said the caseworker had been taken off all her cases and given paperwork duties while the agency examines her claims.

The state is also reviewing the casework she provided about Garcia’s case.

The caseworker was tasked with monitoring 26 people, slightly more than average for the other adult protective services workers in Galveston County, Carter said.

Seven caseworkers are assigned to all of Galveston County and two ZIP codes in Harris County. They have from eight to 35 cases each, but average 21 cases, Carter said.

Adult protective services had monitored Garcia since November. The caseworker had recently suggested the state begin the process of taking custody of him.

He lived with his 46-year-old mother in a one-bedroom apartment, Texas City police Capt. Brian Goetschius said.

The mother, Thelma Garcia, stayed in the apartment with her dead son for days, police suspect. Neighbors said they saw her going in and out of the apartment in the days before her son’s body was found.

Preliminary autopsy reports ruled the death was natural, but results are pending toxicology results that can take up to three weeks, Pustilnik said.

Goetschius said police were still investigating the case. After police found the body, Thelma Garcia was admitted to the University of Texas Medical Branch at Galveston for a psychiatric evaluation, police said.

Monday, May 19, 2008

The Death of a 13 Year Old

Medical neglect is far too common among people with developmental disabilities. Of course, the more profound the disability, the more likely medical neglect will occur. I've seen several cases of medical neglect in my years of being around such folks; one leading to death. I found this story written a few days back in the Chicago Tribune.

Boy's Death Ruled Homicide

Bedsores 'bone-deep' despite 24-hour care by 2 licensed nurses

By Dan P. Blake and Mary Owen | Tribune reporters

Jaylen Brown needed round-the-clock care, and the 13-year-old developmentally disabled boy with cerebral palsy was supposed to have it. His mother had the help of two licensed practical nurses to care for her son seven days a week at their South Side home.

And yet the boy died Thursday of complications from "bone-deep bedsores" that the Cook County Public Guardian called a "a disgusting case of neglect" that a number of people should have seen before it was too late.

The boy's death has been ruled a homicide, with the cause being blood poisoning from neglected severe bedsores, according to the Cook County medical examiner's office.

Jaylen died at La Rabida Children's Hospital two months after doctors and nurses alerted authorities that he was suffering from neglect and malnourishment after his mother brought him in with a breathing problem.
The mother, Kesheia Phillips, 29, and two home health-care nurses, Morris Lee Brinkley, 73, and Loren Brown, 49, who is not related to the boy, were charged last month with felony neglect of a person with a disability and failure to report a neglected child, according to court records.

With Jaylen's death ruled a homicide, prosecutors are considering more serious charges against the three women, said Tandra Simonton, a spokeswoman for Cook County State's Atty. Richard Devine.

Law enforcement officials and state regulators were piecing together the tragic turns in Jaylen's life. Court records show an erratic history of hospital visits in recent months where his poor condition was noted, but Phillips never made the follow-up appointments doctors had requested.

"Somebody missed the entire picture over what this kid was going through, and there were enough people around that they should have seen something," Public Guardian Robert Harris said Friday.

"This kid's been sick his whole life, and there were two nurses that went to see him seven days a week," Harris said. "These folks should have had the experience or knowledge and training to know when a bedsore would have gotten so bad it would have caused a blood infection."

Illinois Department of Children and Family Services officials said they had no other "substantiated allegations or investigations into this family." They would not comment on whether there were previous inquiries regarding Jaylen's welfare.

Phillips, of the 8500 block of South Ogelsby Avenue, and Brown remain in custody from the neglect charges filed in early April. Brinkley posted bail and was released Sunday. Reached at her home in the 9100 block of South Paulina Street, Brinkley declined to comment Friday night.

A lawyer for the nurses' employer, Maxim Healthcare Services, said both women have been fired but it is unclear when.

Phillips took the boy to a hospital in August 2007 where doctors noted he had lost 20 pounds. Doctors asked to see him in four to six weeks, but Phillips never made a follow-up appointment, according to court records.

Jaylen's next contact with doctors was March 17, when he was taken to La Rabida for respiratory failure, according to court records. When hospital officials saw the extent of Jaylen's bedsores and the severity of his general condition, they alerted DCFS.

Prosecutors allege that after the nurses left for the evening about 7 p.m., Phillips was often out of the home and did not see her son, whose severe retardation left him with the mental capacity of an infant. His diapers often went unchanged at night, they alleged.

Phillips' other children, a 6-year-old boy and an 8-year-old girl, have been removed from the home and placed in a relative's custody during the investigation, said Kendall Marlowe, a spokesman for DCFS. Relatives said the children are being cared for by their grandmother.

Neighbor Elizabeth Hailey said the nurses complained that Phillips treated them like baby-sitters for her other children.

"I told her once, 'You have to watch your kids,' " Hailey said. "I'm not saying she didn't love her kids, but maybe it was too much for her."

Jaylen's uncle, Jerome Phillips, defended his sister, saying she was a single mother doing the best she could for her children.

Staff reporters Jeremy Gorner and David Heinzmann contributed to this report.

"Not Allowed" to Use the Internet?

After Lawrence Welk was over on Saturday night, I began channel surfing. The first show I ran into was "Truth Seekers", which is a show supposedly caring about what kind of science backs up born again claims regarding where the world is at these days. Though I question their "science", I've called in on this cable access show before.

When I tuned in, there was a woman who had to struggle to speak who was on the phone line. She was asking questions about heaven and hell. The 2 hosts asked her some questions about her thoughts; obviously not very experienced with disability issues. The guy with white hair decided she was living in a nursing home, and wasn't really too interested in what she had to say. His counter part was more patient, and seemed genuinely concerned with her situation.

She said that where she lived, she wasn't "allowed" to use the internet to research Biblical information. My ears perked up over this civil rights issue, and I called in after she hung up. I was able to get the woman’s contact information after the guy with white hair rebuked me for being off his task. His partner seemed to get that life is a holistic experience, and sometimes neither the Bible nor science can answer certain questions.

I called the woman, who lives in a foster care home with 2 other housemates. She told me that the owner of the home wouldn’t let these folks use the internet. She also told me that she feared getting into trouble for sharing this with me. I told her that I would do what I can to find out why she can’t have internet access if she wants it. She was very grateful, and impressed that I’d look into this for her. She was particularly impressed that I’m not even a Christian.

This morning I emailed my nephew’s case manager to see if she works with this home. She got back to me that she doesn’t, but let me know who does. This person is out of the office for the next few days, but I plan to talk with her about this situation. I’ll write more about it after that.
After Lawrence Welk was over on Saturday night, I began channel surfing. The first show I ran into was "Truth Seekers", which is a show supposedly caring about what kind of science backs up born again claims regarding where the world is at these days. Though I question their "science", I've called in on this cable access show before.

When I tuned in, there was a woman who had to struggle to speak who was on the phone line. She was asking questions about heaven and hell. The 2 hosts asked her some questions about her thoughts; obviously not very experienced with disability issues. The guy with white hair decided she was living in a nursing home, and wasn't really too interested in what she had to say. His counter part was more patient, and seemed genuinely concerned with her situation.

She said that where she lived, she wasn't "allowed" to use the internet to research Bible Information.

Saturday, May 17, 2008

The Bugs Are Gone

Credit where credit's due. They fixed the DHS website that folks can check for substantiated abuse/neglect cases yesterday.

Obama the Next MLK?

Today my wife and I went over to the Alberta Art Hop to kick off the street faire season. Beside the heat overwhelming us some, it was really great! One thing that disappointed us both was found at a pro Obama vendor. They were selling everything Obama, from buttons to bumper stickers. Then we saw it. A tee shirt comparing the presidential hopeful to the Reverand Doctor Martin Luther King Junior. In my opinion that is akin to Dan Quale comparing himself to John Kennedy some years back. It just doesn't make it.

What will we see next? Hillary's campaign comparing her to Mother Teresa around her healthcare agenda? McCain being compared to George Wasington around his Iraq agenda?
I just wish it was November...

Thursday, May 15, 2008

Oregon DHS Strikes Again

The Oregon Department of Human Services and their division of Seniors and People with Disabilities has come out with a Facility Compliance website which “allows consumers to get basic information about substantiated complaint findings in nursing facilities, assisted living facilities, residential care facilities, and adult foster homes that serve seniors & people with physical disabilities.”

We received a forwarded email from a friend which in part claims “SPD has a long history of transparency and is a strong supporter of consumer information.” I find this odd. DHS is well aware of our concern about the abuse/neglect crisis going on in our state. They also have our email address. They also know we have an adult child in their system. Yet, they couldn’t get it together to email us with this information?

The clincher in this whole thing is that it doesn’t even work. See for yourself. Here’s the entire email...

SPD has a long history of transparency and is a strong supporter of
consumer information. I am pleased to announce that we have added to
this history today with the launch of a Facility Compliance Website.
This website allows consumers to get basic information about
substantiated complaint findings in nursing facilities, assisted
living facilities, residential care facilities, and adult foster homes
that serve seniors & people with physical disabilities. This is the
first step toward a comprehensive quality reporting website for all
facilities that serve all SPD populations.

The website can be accessed at: or thru
SPD's licensed facilities site at

The website also allows consumers to request further information by
directing them to a unique e-mail address or,
the OLQC reception number of 1-800-232-3020, or the OLQC mailing
address of OLQC Public Records Custodian, 500 Summer Street NE, E-13,
Salem, 97301. We have staff who will be receiving these requests and
responding to them. Please direct any requests for further
information that you might receive to any of these 3 sources.

So, I am asking the following:
Please refer all media calls to Mary Gear at 503-945-5833.
Please direct requests for further complaint information to any of the
3 sources listed above.

This website was the result of much hard work by several people. I'd
especially like to thank Ivan Pointer, Aymie Olsen, and Judy Giggy for
their diligent work on this project.

If you have any questions about this, please let me know.
Thanks very much.

Tuesday, May 13, 2008

Old and Disabled? Here Come the Criminals

I know that many people get their news from the internet as opposed to TV, radio, or newspapers. This article can be found in today's Oregonian. Some people go well beyond cruel in the way they treat elderly and people with disabilities. The only thing I wish the paper had done, is to publish the names of these criminals.

The Woman Who Put a Face on Elder Abuse

Tuesday, May 13, 2008

Before the nightmare began, Amelia Lewis de Gremli had led a rich, exhilarating life.

The former actress had received a marvelous education. She had been a Rhodes Scholarship finalist. She had directed theaters and taught drama all over the world. And she had saved for her retirement and owned her home in Nevada.

In 1986, however, when de Gremli was 66, she suffered a crippling stroke and became the vulnerable victim of outrageous exploitation. Seven years later Oregon authorities found her -- ill, lonely, unable to walk or speak -- in a Bend foster care facility where she had been secreted by a married couple who had drained her assets.

Barely able to scratch her name on a piece of paper, de Gremli managed to draw attention to her plight by scrawling the word "help" on a postcard. Then she got an aide at the care facility to address it to a Nevada friend who didn't know what had become of de Gremli, and that touched off a remarkable chain of events.

De Gremli, who died Friday in Bend at the age of 88, left a legacy far greater than her colorful career on the stage. Her heroic plea for help caused ripples that ended up changing Oregon law and heightening awareness of a quiet crime known today as elder abuse.

Some victims suffer a physical form of this evil, but de Gremli's abuse was financial. It began soon after her stroke when a friend's grown son and his wife, who had been having money problems, offered to move into her home and look after her.

Soon they had her power of attorney. Then they moved her to the Bend area, not telling any of her friends where she'd been taken.

The couple quickly sold de Gremli's Nevada home and bought themselves a new one in Oregon. A year later they moved her out of the house and into a place for foster care.

They cashed her Social Security checks and spent more than $90,000 of her money on such things as a boat, a camper and a college education for their daughter. They refused to obtain the physical therapy de Gremli needed, telling the foster home they couldn't afford it.

In an astonishing 1993 ruling, a Deschutes County judge acquitted the couple of charges that they stole money from de Gremli. She later prevailed in a civil suit but received very little of the judgment because her abusers filed for bankruptcy and their only source of income, a government pension, could not be attached.

Inspired by this injustice, advocates for the disabled and elderly succeeded in changing that quirk in Oregon law. Best of all, the 2005 Legislature adopted several strong elder-abuse laws, including the Oregon Elder Abuse Prevention Act.

Those who suffer this abuse are usually helpless and without a voice. De Gremli, with her desperately scrawled postcard, did much to raise public awareness of this emerging field of crime.

Monday, May 12, 2008

Autism Goes to Court!

I wrote back in February about the ongoing fight between people who believe vaccines were a cause of Autism (I'm on that team) and those who say "uh-uh". Well now the argument is going to court. From CNN...
Families argue autism-vaccine link in special U.S. court

WASHINGTON (AP) -- The Institute of Medicine said in 2004 there was no credible evidence to show that vaccines containing the preservative thimerosal led to autism in children. But thousands of families have a different take based on personal experience.

Some of them are going to court Monday as attorneys will attempt to show that the mercury-based preservative triggers symptoms of autism.

Two 10-year-old boys from Portland, Oregon, will serve as test cases to determine whether many of the children and their families should be compensated. Attorneys for the boys will attempt to show the boys were happy, healthy and developing normally -- but, after being exposed to vaccines with thimerosal, they began to regress.

Thimerosal has been removed in recent years from standard childhood vaccines, except flu vaccines that are not packaged in single-doses. The Centers for Disease Control and Prevention says single-dose flu shots currently are available only in limited quantities. In 2004, a committee with the Institute of Medicine concluded there was no credible evidence that vaccines containing thimerosal caused autism.

Overall, nearly 4,900 families have filed claims with the U.S. Court of Claims alleging that vaccines caused autism and other neurological problems in their children. Lawyers for the families are presenting three different theories of how vaccines caused autism.

The Office of Special Masters of the claims court has instructed the plaintiffs to designate three test cases for each of the three theories -- nine cases in all -- and has assigned three special masters to handle the cases. Three cases in the first category were heard last year, but no decisions have been reached.

The two cases beginning Monday are among the three that focus on the second theory of causation: that thimerosal-containing vaccines alone cause autism. The plaintiff in the third case originally scheduled for hearing this month has withdrawn and lawyers and court officials are working to agree on substitute case.

Hearings in the test cases for the third theory of causation are scheduled in mid-September.

Lawyers for the petitioning families in the cases being heard this month say they will present evidence that injections with thimerosal deposit a form of mercury in the brain. That mercury excites certain brain cells that stay chronically activated trying to get rid of the intrusion.

"In some kids, there's enough of it that it sets off this chronic neuroinflammatory pattern that can lead to regressive autism," said attorney Mike Williams.
In the end, the families' attorneys hope to convince the special master hearing their case that thimerosal belongs on the list of causes for the inflammation that leads to regressive autism.

To win, the attorneys for the two boys, William Mead and Jordan King, will have to show that it's more likely than not that the vaccine actually caused the injury.
Many members of the medical community are skeptical of the families' claims. They worry that the claims about the dangers of vaccines could cause some people to forgo vaccines that prevent illness.

"I think that what's so endearing to me about the anti-vaccine people, is they're perfectly willing to go from one hypothesis to the next without a backward glance," said Dr. Paul Offit, director of the Vaccine Education Center at the Children's Hospital of Philadelphia, Pennsylvanina.

Autism is a developmental disability that typically appears during the first three years of life and affects a person's ability to communicate and interact with others. Dr. Andrew Gerber, a psychiatrist, said that medical experts don't have a comprehensive understanding of what causes autism, but they do know there is a strong hereditary component.

Toxins from the environment could play a role, but currently, data does not support that they do, Gerber said.

Arguments are scheduled to go on throughout the month. A final decision could take several more months. Claims that are successful would result in compensation taking into account lost earnings after age 18 and up to $250,000 for pain and suffering.
The families or the federal government can also appeal the decision of the special master to the Court of Federal Claims or to a federal appeals court.

The court Web site says more than 12,500 claims have been filed since creation of the program in 1987, including more than 5,300 autism cases, and more than $1.7 billion has been paid in claims. It says there is now more than $2.7 billion in a trust fund supported by an excise tax on each dose of vaccine covered by the program.

Sunday, May 11, 2008

Mothers Rule!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

To the nurturers of the world I say; "God bless you!" To the women who provide most of the care to our sick, disabled, and neediest I say, "thank you!" To those who eperience the pain of giving birth to our the babies, to those who teach us daily what compassion truly means, to those whos' feminine energy keeps us from destroying our planet, who lead the fight for justice, who give us unconditional love, who show us how to be truly human, I want to say; "I love you."



Thursday, May 08, 2008

Hard to Swallow

I used to work at a day program where some of the folks who came there were on what’s known as a soft mechanical diet. This basically means that any of the food these people eat needs to be pureed or liquefied before feeding it to them. Generally, the reason a person is put on such a diet by their Doctor is that they are at risk of choking or aspiration (food making its way into the lungs).

If memory serves me, all these people lived in either foster care or group homes. You wouldn’t believe what some of these folks would show up with for snacks we were expected to feed them. Ham sandwiches, peanut butter sandwiches, corn muffins, tortilla and potato chips, cookies; definitely not stuff that would even remotely be considered as soft mechanical.

If this isn’t a clear form of medical neglect, I don’t know what is. And even though management was aware of this, there was no repercussion. This is the sort of thing you consistently run into when you work with people having developmental disabilities.

Wednesday, May 07, 2008

A Serious Dilemma

I lost it last week with my brothers. It was right after I read the story I posted about the group home staff member who was shooting BBs at the folks he was supposed to take care of. I wrote an angry email saying they weren’t supporting my nephew (who has autism) well enough, and asking what they would do if I should suddenly die. A bit melodramatic, but at the time I was pretty upset.

People who live in these homes are often really vulnerable. That’s probably the number one reason so many people keep their loved one with a disability living at home. The “new” problem that is emerging for these folks who have made this choice is that they are getting too old to be able to handle caring for their adult children.

Maureen O’Hagan, who used to write for the Willamette Week newspaper here in Portland, recently wrote an excellent piece for the Seattle Times about this issue.

A Past Enveloped in Love, a Future That's Uncertain

James Jensen considers himself a "ladies' man," even though he's never been on a date.
He likes to say he's "retired," although he's never had a serious job. When a cashier asks for money, he responds, "You'll have to talk to my banker."

The banker in question is his mother, Delores Jensen, who's been his staunchest defender, his biggest fan and his loving caregiver for 47 years. And James, if it isn't clear by now, is a charmer.

He was diagnosed at birth with Down syndrome, a chromosomal disorder marked by impairments both physical and mental. James can handle some daily tasks alone, such as dressing and setting the table, but he can't count money or operate the oven or clearly articulate when something's wrong.

He's never lived on his own and doesn't want to. He enjoys the companionship and security provided by his parents in their Enumclaw home.

Thing is, Delores is 81; James' father, Allen, is 82, and over the past few years they've begun to show their age.

James probably has many years left. In fact, he is part of the first generation of people with developmental disabilities likely to outlive their parents in great numbers — a situation that, years ago, few would have predicted. State officials say 8,200 people older than age 40 are on the rolls of the Division of Developmental Disabilities. Experts say thousands more may be eligible.

Those numbers will only grow as baby boomers with disabilities continue to age.

Meanwhile, most caregivers are relatives, whose dedication saves the state untold millions.

Put these facts together and big questions loom: What happens when people like the Jensens can't do it any longer? And who's going to pay for it?

James and many thousands of others will need places to live, along with additional services and caregivers when their parents are gone. They're also likely to need extra help because they often show early signs of aging.

That's becoming increasingly evident with James, as the abilities he once had are starting to fade.

Sustained by Faith

The Jensens are a family that runs on the twin engines of faith and routine. Lunch is at noon sharp, on account of Allen's diabetes. James gets ice cream before bed every night. Medications — a few dozen among the three of them — are organized on Fridays; church is first thing Sunday morning.

Yet from James' birth in South Dakota, the family has been on the cutting edge of what some call a great civil-rights movement — the struggle, successful in many ways, by people with disabilities to be treated like everyone else. They joined that movement the day James was born, in March 1961.

One look at him and doctors knew he had Down syndrome. Before Delores could see her new son, a nurse whisked him away.

At that time, many kids born with Down's and other developmental or physical disabilities went straight from the hospital to an institution. "Just forget about him," parents were sometimes told. "Tell people he died."

Delores recalled: "One of the sisters came in and said, 'You don't want to take this child home.' "

Without thinking twice, she snapped, "I am not going to let you take this child."

For two months, James remained in the hospital, small enough to fit in the palm of Allen's hand, taking food through a tube until he was finally able to swallow. When doctors sent him home, they warned he might never learn to walk.

At that time, there were few programs the Jensens could turn to for help. Outright discrimination was everywhere. In fact, until the mid-1970s, some school districts, including Seattle, refused to accept many kids like James. Parents were told "retarded" kids couldn't learn, anyway. They certainly didn't belong with "normal" children.

The Jensen family, which also included daughter Linda, who is 12 years older than James, was pretty much left to figure things out for itself.

"We knew the Lord was going to tell us what to do and how far to go," Delores said.

Progress, and Problems

In 1964, Allen got a job as a school-bus mechanic in Auburn and they moved west, leaving a close extended family behind.

Delores remembers crying those first months, holding James close and watching as the rain came down in a dull and endless gray. She was so very lonely. James was her comfort.

Luckily, they landed somewhere with a school that didn't exclude kids with disabilities. From first grade until graduation at 21, James attended the Grandview School in Kent, a newfangled — and now defunct — program that served special-education kids from area districts.

The world learned along with the Jensens. Today, institutionalizing kids is rare. Although discrimination exists, people with developmental disabilities go to school and play sports and work like everyone else.

That's the good news. But along with the progress came new hurdles. Because institutions are no longer in favor, and because other housing options have limitations, about two-thirds of people with developmental disabilities live with parents or siblings, according to national experts. That has made parents the default long-term-care system, according to Linda Rolfe, head of the state Division of Developmental Disabilities.

"Most of us who have kids, we sort of launch them at some point in their lives," said Matthew Janicki, a researcher at the University of Illinois, Chicago, who studies aging and disabilities. Parents of children with disabilities, however, "stay with them for their lifetimes. We're talking about 40, 50 years of caregiving."

It is a strain on many families, but for a long time, that arrangement worked because the parents outlived the disabled child. But nowadays, people with Down syndrome often live into their 60s. People with other developmental disabilities live just about as long as everyone else, thanks, in part, to medical advances.

Some have jobs and will manage when their parents pass away. But for the rest, the future is uncertain.

A Second Family

The Jensens don't rely heavily on state services. Instead, they have family friend Mary Baker.

They tell the story of their meeting over and over.

James was around 8. His best buddy, Mike, who also had Down syndrome, had taken his little sister Mary to a Grandview dance. James approached Mary, then around 6, and bowed.

"Do you remember what you said, James?" Mary asked recently.

James smiled, but his face was blank. He couldn't quite remember.

"May I ... ," Mary prompted. Nothing.

"May I have ... ," she tried again.

"May I have this dance?" James said tentatively.

On that dance floor, he won Mary over. As the years have gone by, Mary has come to consider the Jensens a second family.

"She couldn't have been any closer to us had I borne her," Delores said.

"Anything for Mary," Allen said, beaming.

Mike died years ago of cancer, but the families remain close. Once a month, James spends the night with Mary and her family in Puyallup. Allen acted as chauffeur the day Mary married Bruce Baker. And now Bruce and Mary's three daughters are part of the Jensen family, too.

"They call me uncle," James said proudly.

He likes the sound of it so much he repeats it: "They call me uncle."

In the next half-hour, he says it again and again. To the Jensens, it is a sign their son has changed. There is the James of today — repeating himself, getting confused — and the James who once was.

A Change in James

The old James used to talk about the school dance all the time, acting it out and relishing every detail. He used to have beautiful penmanship. He used to love to go bowling or to the movies with friends he made through a parks department program. He used to be so happy-go-lucky.

Now he gets moody. He mopes around and says he just doesn't feel like going to the movies. He can barely write his name anymore. He sometimes gets halfway through setting the table and just stops.

He's clingy. Needy.

Delores whispers: Alzheimer's. Like many middle-aged people with Down syndrome, James is showing signs of early aging, including dementia. People with Down's also tend to develop early arthritis, prostate troubles and hearing loss. Other developmental disabilities come with their own ills: People with cerebral palsy often develop joint problems or chronic pain. Autism is associated with digestive disorders. Seizure medications can lead to osteoporosis.

For James, the dementia symptoms come and go. Every so often, the old James is back, smiling and joking, eager to vacuum, fold the laundry and do other tasks. "That's my job," he likes to say.

But Delores is afraid to leave him alone because he might wander. She helps him shower because he doesn't always remember what to do. She reminds him to use the bathroom.

"When he gets more involved and is more dependent on physical care, it's going to be harder and harder for them," said Janicki, the researcher.

James also has acid-reflux disease and ill-fitting dentures. He has arthritis in his hands. Then there's the prostate trouble that began a few months ago. Doctors were lucky to discover it, given that James couldn't describe what was wrong. He just told his parents he didn't feel well.

"She does just about everything," Allen said of his wife. "Brushes his teeth, makes sure his clothes are washed. Gives him his money and counts his money when he gets it back [from the movies]. Makes all the doctor's appointments and takes him."

At night, he added, "Jim has just got to moan a little bit and she's up like a shot to check on him."

Sometimes it's two, three, four times a night.

"I just sit there in his chair next to him," Delores said. "Sometimes he wants you to stay with him until he goes back to sleep."

Delores also takes care of Allen. Years ago, he loved tinkering with old cars. But he's become frail. He's survived cancer and heart surgery and now hobbles around with a cane. He has no feeling below the knees.

"I never leave the two of them alone except for Bible study once a month from 9 to noon," Delores said. "That's my only activity — that and going to get my hair done."

Since James was born, Delores and Allen have gone on a trip alone only once: for a weeklong cruise to celebrate their 50th wedding anniversary in 1997.

They will never say James is a burden; he is a blessing. It has something to do with David, their first son, who died at age 3. "I think that God knew we needed someone to enjoy in our old age who would be with us and who loves unconditionally," Delores said.

"And he certainly does."

Uncertain Future

Mary calls herself a planner. So she's been thinking a lot lately about what will happen when Delores slows down.

"She's the glue that keeps that family together," Mary said.

It's not hard to imagine the next step — for James and thousands of others like him.

"We're starting to hear about them now," said Kathleen Watson, who specializes in elder issues at the University of Washington's Center on Human Development and Disability. "Suddenly, this person is on the doorstep of the system. We expect that's going to be happening more and more."

The state might place someone like James in an adult family home, which costs an average of $75 a day. People who need more care might go into one of the state institutions, which can cost more than $500 a day.

Such costs haven't been built into the state budget. Even less expensive stopgaps, such as money for part-time respite care to give parents a break, are severely underfunded. About 11,000 families are on waiting lists for this service and others.

"It's bleak, in that society didn't plan and government didn't plan," said Nancy Meltzer, who helps aging families struggling with this issue at The Arc of King County.

"And for the most part, families didn't plan."

A Looming Choice

The flash of recognition came about two years ago. "We weren't getting any younger," Delores said.

Choosing a guardian to care for James after they were gone was the most straightforward part. They thought about James' sister, Linda, but quickly realized she wouldn't quite work. She lives in Arizona and has worries of her own. Mary was the logical choice. Mary and Bruce agreed, much to Delores and Allen's relief.

"As long as there's Mary, I'll never be worried about him," Delores said, her eyes tearing up.

Mary cares for James as if he were her own brother. They clearly enjoy each other's company.

On a recent visit, James was back to his old, buoyant self while he and Mary were out running errands.

"Ladies go first," he says with a sweep of the arm, as he held open the door to a party-supply store.

"My birthday is in March," he says again and again.

They stop at Starbucks, where he usually gets the same drink. But this time he can't remember what.

"Do you want something hot or something cold?" Mary prompts. "Vanilla or chocolate?"

She winds up ordering his vanilla Frappuccino for him.

She explained that the night before, James had stayed at their house and she reminded him to use the bathroom after dinner. He was in there so long Mary checked on him.

"I found he had taken his shirt off and was shaving," she said. Before bed, she reminded him once again and the same thing happened.

Every day, it gets harder for James to do the things he's done on his own for years.

Life is uncertain.

Initially, Mary considered having James live with her family when the time came. But now that he's showing signs of dementia, it doesn't seem possible.

"I can't do 24-hour care," Mary said apologetically. "I have three kids; I don't know if that's fair to them."

Mary has been planning. Maybe the Jensens could move into an assisted-living facility together. Maybe, in the meantime, Delores could sign up James for more state services, so the family could get help. Maybe, when Delores and Allen are gone, she could find a wonderful group home for James near her house.

When Mary brought all this up with Delores a few months ago, Delores began to cry.

"She doesn't want to talk about it," Mary says.

She sighs.

Delores' plan, she concludes, is to live forever.

Tuesday, May 06, 2008

The Unenviable Shrinking Man

This story clearly demonstrates medical neglect, which happens in group homes and foster care homes throughout our country. Are they all bad? Of course not. Some of these homes are wonderful. But there are far too many that are just plain awful.

BOUNTIFUL, Utah (ABC 4 News) - State investigators are looking into the death of a man who died at a group home in Bountiful.

Eric Hale was mentally challenged and had autism.

He died Wednesday at Lakeview hospital. And that’s where a long time friend went to visit him.

“He was such a skeleton and had not moved in so long that he was in a fetal position and his knees could not be pried apart,” said his friend Nancy who did not want her last name released.

Hospital staff won't release cause of death but Nancy said in her opinion it was obvious he'd been neglected.

"How did he go from 190 pounds and being healthy, able to walk to care for himself to 100 pounds, with a punctured bowel, vomiting feces and then resulting in dying,” she said.

And she said Hale, who was living at this group home in Bountiful was covered in bedsores and his body was locked in a fetal position.

"Its common sense if someone stops eating, its common sense if someone has severe deep bed sores all over his body that they are being neglected and not taken care for,” she said.

Nancy admits she had not seen Hale in over a year, but his condition at the hospital shocked her. And it appears to have shocked police as well. They asked the state to investigate his death.

“We just know that a man passed away in a facility and bountiful police asked us to look at it to see if there's any criminal issues here," said attorney general spokesman Paul Murphy.

REM of Utah owns several group homes including the one where Hale was living.

In a statement released by John Harbert, the state director of REM UTAH, it said “We are deeply saddened by the passing of an individual in our care and extend our deepest sympathies to all who loved him. Due to the on-going investigation into this matter, we can have no further comment at this time except to say that we are cooperating with the investigating authorities.”

The state agency which regulates them says Hale was checked on in early March.

“There had been ongoing concerns with health and (staff was) monitoring it as well as can be,” said Scott Kline of the Services for People with Disabilities. “There was concern with weight loss … they had checked with the providers to assure things were being addressed.” But when Nancy saw Hale at the hospital she believed someone didn't do their job.

Monday, May 05, 2008

A Texas Mess

The Dallas Morning News reports of some heavy duty abuse and neglect within its 10 State Hospitals. What I believe it really comes down to is a combination of a few things. People with disabilities are not valued by the general community as much as their non disabled counter parts. There is also an ongoing issue around educating the general community regarding the systemic challenges faced by the disability community. I hope I'm changing that, if only slightly.

Reports show systemic abuse at Texas' psychiatric hospitals

By EMILY RAMSHAW / The Dallas Morning News

AUSTIN – Patients with severe mental illness are committed to Texas' state psychiatric hospitals to be protected from themselves. Instead, some are suffering vicious abuse from the very caregivers hired to look after them.

Last year, one state mental hospital employee tackled an adolescent patient who was sobbing for his mother, dragging him across the floor by his wrists and hair.

The year before, another brought a female patient into a hospital bathroom and sexually abused her.

And dozens more have participated in brutal beatings at the psychiatric hospitals since 2005, employee disciplinary reports show – using chokeholds, headlocks and threats of violence to restrain the patients under their watch.

In all, 72 employees across Texas' 10 state mental hospitals have been fired in the last three years for allegations of physical abuse, according to a Dallas Morning News analysis of state personnel records. Hundreds more have been terminated for other violations, the records show, from sleeping on the job to over-medicating mentally ill patients.

State officials say there will always be some reports of abuse and neglect in an institutional setting. And they say they take any allegations of mistreatment seriously. But the records show that as in other state-run facilities, abuse and neglect are systemic.

The state's juvenile prisons, group homes for the disabled, and state schools for people with mental disabilities all came under fire last year for reports of widespread physical and sexual abuse. The state psychiatric hospitals, like other systems for vulnerable Texans, are chronically starved for cash, advocates of more state funding say, and services at the local level can't keep up.

"You get what you pay for," said Rep. Garnet Coleman, D-Houston, who has bipolar disorder. "When you financially dumb something down, you make services cheap, something's got to give. Unfortunately, it usually ends up being a mentally ill or disabled Texan."

Officials with the Department of State Health Services, the agency that runs the psychiatric hospitals, say abuse and neglect are "absolutely not" pervasive – and verified cases are actually dropping.

In the last two years, they confirmed 15 "Class I" cases – the most serious abuse. On average, investigators substantiate 5 percent of the more than 2,000 allegations they examine annually. And nearly 90 percent of patient deaths since 2005 were attributed to natural causes, agency spokesman Doug McBride said. Five were suicides, and none were the result of abuse.

"Keep in mind there are about 7,400 employees, 18,000 patient admissions and probably hundreds of thousands of staff-patient interactions in a year," Mr. McBride said.

State officials acknowledge that the psychiatric hospitals are stressful environments; there are times, Mr. McBride said, when employees "do not handle a situation appropriately." But they say the rules for reporting abuse and neglect are stringent – and confirmed cases of physical and sexual abuse are reported to police.
And they balk at the suggestion that conditions bear a resemblance to the state schools for people with mental disabilities, where the U.S. Justice Department has intervened twice in recent years.

The state psychiatric hospitals, which have about 2,500 patients daily, had 137 confirmed abuse cases in 2007. The state schools for people with disabilities, which have twice as many residents, have an average of 300 confirmed abuse cases per year.
But some advocates fear the mentally ill patients may face greater risks. Patients of the psychiatric hospitals are largely indigent, transient and not connected to their families, so they have few allies as they bounce through the mental health system.

"It's a population that's easy to abuse because they're not on the radar in any way," said Richard Hansen, a Texas mental health advocate who was chemically restrained, shackled and beaten to the point of broken ribs years ago while suffering from bipolar disorder in a New York mental hospital.

But there are few alternatives, advocates say, because smaller community-based services are as strapped as the state system.

Fired hospital workers

Among the allegations of abuse and neglect state hospital workers have been fired for since 2005:

• A worker at the North Texas State Hospital slammed a clipboard on a patient's head, dragged her by her feet and kicked her in the legs and buttocks.

• An employee at the Big Spring State Hospital failed to notice a patient who knotted her sheet and strung it around her neck. The patient was blue by the time staff found her.

• At the Austin State Hospital, a male employee brought a female patient into a private room for her to carry out a sexual act on him.

• An employee at the Austin hospital tackled a juvenile patient and pinned the patient's neck and head to the floor, bloodying his lips and face and breaking his glasses.

Other employees were punished for offensive treatment, from using racial slurs on patients to making verbal threats and sexual advances. Some ignored patients' cries for help while they watched TV, played video games and wrote text messages. Others stole state property and sold tobacco products to patients.

Mr. McBride said employees are carefully screened and are terminated the moment they're found unfit for their jobs.

Mr. Hansen said many employees are conscientious, but conditions vary from hospital to hospital and ward to ward. Some are simply warehouses, where patients are often overmedicated and ignored. In others, patients frequently turn up with unexplained injuries, he said.

Unexplained death

Jason Evans called 911 in November during a bipolar meltdown and was admitted to the Terrell State Hospital. Days later, the 34-year-old was dead – and his parents still don't know why.

State officials told the Kaufman couple that their son, who was severely mentally ill but in good physical condition, had been disruptive that evening, and records obtained by the family indicate hospital workers medicated him before sending him to sleep. Mr. Evans was apparently found hours later in his bed, and was no longer breathing.

Lynn Evans, his mother, said psychiatric hospital workers attributed the death to natural causes, and doctors said her son had lost oxygen to the brain. But she and Mr. Evans' father, a pharmacist, have been unable to get specific details about their son's death. They believe Jason was effectively overdosed by hospital workers trying to restrain him.

"It was a disease. Jason couldn't help it," said Mrs. Evans, choking back sobs. "In my heart, I will go to my grave knowing that hospital killed him."

Mr. McBride said that the agency is prohibited from confirming the identities of anyone in their care – but that any unexpected deaths are investigated by the Department of Family and Protective Services or by local law enforcement.

"There were no deaths among Terrell State Hospital patients last fall from anything other than natural causes," he said.

Experts say the troubles at state psychiatric hospitals are the same ones facing any institutionalized care facility. Employees are overworked and underpaid. Many entry-level workers have little education and training. And upper level managers battle high turnover rates while struggling to find qualified staff.

The problems are compounded by the fact that many psychiatric hospital patients don't have support networks. They've frequently alienated their families through a cycle of homelessness and incarceration. They often are sent to the hospital by a judge. And their length of stay – just over a month, on average – gives employees little time to build personal relationships and empathy for the patients in their care.

Aaryce Hayes, a mental health policy specialist with Advocacy Inc., said the Department of State Health Services is working to improve the state hospital system, from incorporating trauma-informed treatment into care regimens to increasing employee empathy training. It is also trying to reduce reliance on restraint and seclusion to keep control of patients.

"They get it," she said. "They want to see a culture change."
But it's hard to improve when the state hospital system is so overburdened, Ms. Hayes said. Right now, the state funds just 27 percent of mental health needs in the community – meaning everyone else rotates in and out of crisis care. There are more than 450,000 adult Texans with serious and persistent mental illness, everything from schizophrenia to major depression, Ms. Hayes said.

"If we said we were serving just 27 percent of people who had cancer, or diabetes, nobody would be comfortable with that," Ms. Hayes said.

Money is a persistent problem. In 2003, lawmakers stripped $100 million from the state's mental health budget, Mr. Coleman said – funding that has only partially been replaced.

The Legislature approved $82 million last year to improve community mental health crisis services, said Robin Peyson, executive director of the National Alliance on Mental Illness' Texas chapter. But Texas ranks 48th in the country in per capita funding for people with mental illness, so that money only begins to address the shortfall.

"There are not services at the community level and there are not enough beds in the system," she said. "If you have inadequate funding, you're just supporting this cycle, this revolving wheel."

Staff writer John Jordan in Austin contributed to this report.

Saturday, May 03, 2008

Domestic Violence and People with Disabilities

I realize this is short notice, but I just obtained permission to post it. I've been saying abuse and neglect is domestic violence for some time now. Apparently there are others who see it the same way.

Domestic Violence and People with Disabilities: What you should know

Join Jewish Women International in a 60-minute live teleconference presented by Nora J Baladerian, PhD, licensed clinical psychologist, licensed marriage and family therapist, certified sex therapist and board certified forensic examiner. Presently, Dr. Baladerian is the director of the Disability, Abuse and Personal Rights Project in Los Angeles, California.

Dr. Baladerian has worked in the area of abuse of people with disabilities since 1972and is an expert in conducting evaluations, and clinical interventions of suspected sexual abuse and assessments with children and adults with developmental disabilities. She consults with attorneys and law enforcement agencies providing expert witness consultation and provides training for law enforcement, protective services, therapists, and disability specialists regarding prevention and detection. Dr. Baladerian was awarded the 2008 National Crime Victims Service Award from the Department of Justice’s Office of Victims of Crime.

The live conference will take place:

Thursday, May 8, 2008
12:00 – 1:00 p.m. Eastern Time


Pre-registration is necessary to participate in the call. Please note that while Jewish Women International pays for the bridge fee for the call, each participant is responsible for their individual long distance charges.