Thursday, March 22, 2012

News from Virginia: Department of Justice defends Va. institutions settlement

A report this week out of Virginia in the online edition of The News Leader will be of interest to anyone following changes involving developmental centers, regional centers and group care for the developmentally disabled here in California.

from the article...

An agreement reached between the U.S. Department of Justice and Virginia over the state's care of people with intellectual disabilities does not require the closure of state institutions, federal attorneys argue in a court brief filed Friday.

Federal civil rights attorneys submitted the brief in opposition to a challenge on behalf of 13 families and guardians who have said their relatives are being well-cared for in the state's large institutions and closing them would be detrimental to their well-being.

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Department of Justice defends Va. institutions settlement, by Maria Longley, 3/20/2012, The News Leader

Correction to misquote in The Kenwood Press story on PHA March meeting

The March 10th legislative meeting was full to over flowing with concerned family and friends of Sonoma Developmental Center (SDC) residents. Jay Gamel wrote a story in the local Kenwood Press around the discussions that took place at the meeting. As usual Jay did a great job but there were a couple of misquotes that I would like to correct.

Budget cuts have happened along with down sizing at SDC but they have not resulted in “less expensive care givers” but in less care givers. When a staff person elects to leave or retire he or she is simply not replaced. Those care givers who do remain at SDC are doubly appreciated for the hard work and long hours they put in as professionals caring for our loved ones.

Kathleen Miller, PHA President

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Legislators hear SDC concerns, by Jay Gamel, in The Kenwood Press

Monday, March 19, 2012

High turnout for annual PHA 'Meet Your Legislators' meeting

It was standing room only at the Parent Hospital Association's March 10th general membership meeting when PHA hosted its annual legislative agenda. This yearly meeting is always an important opportunity for members and others in the SDC community to meet elected representatives and their staff, ask questions and voice concerns about the center.

In attendance this year were representatives from the offices of Mark Leno, Wes Chesbro, Noreen Evans, Jared Huffman and Michael Allen. Patricia Flannery also attended on behalf of the Department of Developmental Services in Sacramento.

Unfortunately, due to the high turnout and the number of people who wanted to speak, not everyone had a chance to make their statements or ask questions of the legislators' aides in attendance. A few people passed on their written letters or statements to PHA and have agreed to have them posted. We have posted three to date and you can find them here: Public Comments to Elected Representatives. More will be added as they become available.

Watch for a full report of the meeting in the next issue of The Eldridge Gazette, which will be mailed to members sometime in April. (You can also download issues of the Gazette here on the blog or from the Resources page on the main website. The next issue will be posted in mid-April.)

A reporter from The Kenwood Press attended the meeting. You can read his take on the proceedings here: Legislators hear SDC concerns, by Jay Gamel.

Public comments to elected representatives continued...

At the annual legislative general membership meeting in 2012, many members came with statements, concerns and questions for the legislators' aides in attendance.

Because not everyone had a chance to speak in person at the meeting, we are posting some letters and statements here. This page will be updated as more letters are made available. You will find the most recent additions at the top of the page.

Below are letters from PHA members Veta Drake (2) and Sue Donaldson:

* * *

March 9, 2012
Dale is a Person
by Sue Donaldson, his mother

The very upsetting recent one-sided news reports obviously had a specific agenda: close the Developmental Centers. If my non-verbal autistic son with severe behavior challenges were to be placed in the community, I fear for his overall well-being, even his life.

Dale has been a resident of Sonoma developmental Center (SDC) for 41 years – since he was 15 years old. Dale’s quality of life at SDC has far exceeded my expectations in 1970. A quality of life that, with any stretch of the imagination, can NOT be duplicated in a community home (e.g., behavior management, medical, dental, daily living skills, vocational, leisure and consistent, trained hands-on staff).

Before SDC there was first the frustrating task of finding out what was wrong. At age five, Dale’s final diagnosis was infantile autism and he was briefly allowed to attend a school for the mentally retarded.

From age 7 to 14 Dale was in a private treatment center: 2 years residential and 5 years day program, where there was slow but positive, progressive improvements in social and communicative skills.
The year he turned 14, Dale rapidly regressed into severe behaviors including aggression, self-injurious behavior and eloping in a flash. Dale put himself in physical danger by invading other people’s fenced property. Eventually, these behaviors sent him to the county hospital psychiatric wing where he was put on the drug thorazine, which turned him into a zombie.. Dale had never before taken any psychiatric medication.

Even though I preferred that dale be placed at Sonoma State Hospital (SSH), the county insisted on placing him in a “community” home where I had to call before visiting. Upon investigating the home’s license, I learned the home did not qualify for coverage by OCHAMPUS (military insurance). With the help of a military organization for special needs children, Dale was placed at SSH, now known as Sonoma Developmental Center.

At SDC, I quickly learned that the staff encouraged family participation. Two examples:
  1. Early on, at a program planning meeting, our opinion was requested regarding “weaning” Dale from thorazine. Other psychotropic drugs were tried without success. Since 1982, Dale has been free of psychiatric medication.
  2. Although Dale was placed in a locked unit with a high security fence and a diligent staff, he became an escape artist. After several ideas failed to discourage his elopements, his behavior modification program included visits home on weekends if he did not take off from unit or off-unit activities. If he left home premises, dale was returned to SDC immediately when found. This arrangement not only decreased elopements, it meant dale spent time with family on a regular basis – kind of like he was away at school.
Dale’s severe behaviors have not gone away. The most recent and most difficult to control is his obsession with and ingestion of anything he thinks contains alcohol. Staff familiar with dale’s mostly nonverbal method of communication (gestures, facial expressions, pictures) intervene and divert attention before a behavior escalates.

The SDC staff are creative in finding activities that will spark an interest in Dale. Going to a restaurant is one of his favorite off-campus activities. For years he has looked forward to on-campus special events such as SDC Art Show, Cinco de Mayo, Halloween Parade, Black and White Ball. He is also a member of the equestrian program. He greatly enjoys going to the Sonoma county Fair. Over the years, he has been on special outings such as snow trips, a ferry boat ride and Marine World.
Dale has had a job for many years, which greatly improved his self-esteem. His habit of stuffing foliage and garbage that he gathered into his pocket led to the staff’s innovative idea to try training him with the yard maintenance crew. Dale currently works with the recycling crew.

Last but not least, in 2010 Dale had a sudden onset of left-sided weakness. An alert staff took the necessary action to get Dale to Santa Rosa Memorial Hospital in time for treatment, preventing the debilitating effects of a stroke.

* * *

To the Honorable Mike Thompson:
and Honorables Noreen Evans, Michael Allen, Jared Huffman, Lynn Woolsey, Leyland Yee, Fiona Ma, Mark Leno and Wesley Chesbro

We are thankful that we have an action-oriented person to whom we can bring our concerns. Our concern that necessitates immediate and firm attention is the effort by a few self-serving politicians in local and state governments that wish to close the regional Developmental Centers, which harbor all ages and all levels of citizens afflicted with major development and social disorders, many not even able to speak, much less with the ability to make a choice. Our particular concern at this point is the Sonoma Developmental Center, located at 1500 Arnold Drive, in Eldridge, CA.

The developmental centers are a godsend to both the patients and to their families. Basically the folks that are condemning the centers are promoting their own agendas, with no concern of understanding of the contributions made by the centers. Their actions are somewhat like bullying socially incapacitated people, none of whom have the ability to defend themselves and cannot conceive what is happening and a high percentage that are completely mute. The bullies’ plan is to close the centers and send the patients out to individual homes or to a different type of facility.

Many of the patients of the developmental centers have never been exposed to the outside world, unable to perform the simple daily functions of getting dressed, normal food participation, or daily body functions without assistance. Think of yourself a never been out of your home, never walked somewhere by yourself, never driven a car, or located and used a toilet by yourself, or found an address of the place you were living. A minor comparison may be the first time you entered the U.S. Congressional Chamber as a new member. You would likely do well, but what if you could not find the podium? And when you did you were not able to speak, or if you could speak, you had no comprehension of the plan or the order in which your presentation would proceed, or of your background of procedure and protocol? This may be a simplified example, and if so try to realize what it would be like if it descended to the -10 level and no thoughts or memory were there to help you.

This is a simplified version of the status of most of the patients that utilize the developmental centers, but I am sure you know that greedy/unethical politicians focus their attack on the weaker or helpless agencies, i.e. the State parks, battered women and children’s homes, and the Fish and Game department. And there is always a monetary or vote involvement for the politicians that lead and support these positions. Congressman Thompson, we hope that we can count on you to ignore the radical cry and not close the legitimate and long-term usefulness of the care units and support their continuation.

And yes we have a daughter that has a long-term and a happy and productive experience in the Sonoma Developmental Center. It is imperative to her life and to our contentment that the center will remain open. Thank you for your consideration.

Yours truly,
Veta Drake

* * *

Dear Governor Brown:

This is another letter to you and several members of the legislature with a plea to try and get some help in the prevention of the future closure of the Sonoma Development Center in Eldridge, California. We have never received even a single response. I assume that you and your legislators are so fully involved in trying to get yourselves re-elected you do not have time to recognize the concern of your constituents. However, hoping that you may have a smitten of compassion left in yourselves, we are trying again to get your attention and consideration.

The Sonoma Development Center has a solid reputation for the treatment, care and protection of its disabled patients that is second to none. The facility is housed in a tranquil and idyllic setting for patients that are either mentally or physically incapable and cannot care for themselves. Some of the patients there have been at the facility since early childhood, and they have no reference to ever being in the outside world.

Our particular connection is a child 60-years-old, non-verbal, incontinent, severely retarded, who cannot defend herself or tell someone if she is hurt. She is happy where she is and would be totally lost outside this environment. She is where she belongs. She has lived at SDC for 54 years. It would be of interest to see how you or one of your legislators would react were you in this position with even one-half of these disabilities.

It is a foregone conclusion that if you close this facility due to costs of up-keep and repair, in essence such action would end the life of many of the patients and dramatically affect their families. In California we do not seem to be able to enact a death sentence of a convicted murderer, yet you are contemplating sentencing a mass of patients to a similar experience. As an elected representative of  “all the people”, surely you still have a smattering of compassion outside your political circle of friends and lobbyists.

Sincerely,
Veta I Drake,
Mother of Karen Lawler, who resides at SDC, Bently Cottage

* * *

Monday, March 5, 2012

PHA responds to story of death at SDC

In response to a story about the death of an SDC client several years ago, which was written by Ryan Gabrielson for California Watch on 2/24/2012, PHA board president Kathleen Miller has written a response in order to address the perceived bias and unfairness in Gabrielson's coverage.

Kathleen's response is provided in full below. You can find a list of Gabrielson's articles for California Watch by clicking here.

Dear Families and Friends,

In the more than the 12 years my son Danny has been a resident of Sonoma Developmental Center, I have witnessed that he and the other residents have received professional and specialized care. Despite that quality care Danny and other residents enjoy there is a recent news story criticizing the police response at California’s Developmental Centers. Although the article pretends to analyze only police response, it is, in fact, a thinly veiled attack on the Developmental Centers.

This story, reporting on events from 5 to 10 years ago or more, comes in an atmosphere where we at the Parent Hospital Association feel the California Department of Developmental Services is moving to close the state’s Developmental Centers.  This atmosphere is created by the refusal of DDS acknowledge publicly that closure is indeed the state’s goal and policy, when their actions on the ground can lead any reasonable person to see this is the direction they are heading.

I, and other family members, met with Ryan Gabrielson, the reporter responsible for the story, and shared our views and knowledge with him. I find it significant that Mr. Gabrielson chose not to include our sentiments, our praise for the care our loved ones receive, or any other comments we cared to make.

I personally worked at the Sonoma Developmental Center for 7-1/2 years as a LCSW. During my years there every injury or event with the potential to harm a resident was reported. Even the smallest scratch or bruise meant an incident report was completed and went up the line.  Some incidents were reported as abuse that would likely not be included as abuse at the other developmental centers or the community. Our licensing agency has strict standards for reporting; standards that are not uniform throughout the system. Further, I have inside information that the information cited in the news article is not even accurate.Comparing the number of incident reports, injuries, or abuse thus are useless because they mean different things at different centers. Rules for reporting in DSS licensed homes in the community are different still and DSS licensing does not get access to the information in most cases. Trying to make comparisons is not like comparing apples to oranges but apples to a cow.

Please understand, as with all of those who are dependent on others for life-giving care, mistakes are made. Some of those mistakes have had tragic results. However, at Sonoma Developmental Center any and all mistakes were and are reported and serious attempts within the facility are made to enact improvements wherever necessary. I do not know about the actions of our police but I know what happened on the units, and discussions were held and procedures were adjusted.

It is also difficult to understand the sole concentration of negative scrutiny within Mr Gabrielson’s story on the Developmental Centers. Recently there was a fire in a San Andreas Regional Center care home. Five of the six residents burned to death and the sixth went to ICU. The two care providers, who saved themselves, did not make attempts to save residents or call 911. I heard nothing of the fire on the news and had to go on line to find out the basic facts. Where was the outrage?

A related concern is the difficulty getting information from DDS. Sonoma Developmental Center may be an open book within the system but trying to get general information from DDS, information that should be available to the public, is a very different matter. In order to get information a Public Record Request is required. In the past those moving from the centers into alternative homes have not done well. Some have had had declining health, some have gone to jail, and many have died. I have made several such Public Record Requests about the deaths of the residents moved out of Agnews Developmental Center when it was closed by DDS, and the fate of Sonoma Developmental Center residents who have been placed in community settings.

The information is not forthcoming.

In some cases I am told DDS does not have the information, in others they stall. How can families, friends, and conservators of DDs consumers become part of solutions for our loved ones when we can’t gain access to basic information? How can the public know about problems if information is constantly withheld? In order to have meaningful dialogue stakeholders need to be equally informed.

This latest news report underscores the importance of caring family, friends, and conservators in overseeing the DDS system and the well being of those they love. Sonoma Developmental Center has traditionally empowered me and encouraged involvement in my son’s life. Under past leadership I was informed when things did not go well, I was included in decision making, and my input was both sought and valued. The result is that Danny, and others like him, enjoy meaningful and rich lives not available to them outside the Developmental Centers.

Families hope that Sonoma Developmental Center will always be an option for those who need it. Whatever happens in the future, DDS needs more transparency to those of us who are the public stakeholders. We also need more access to open communication with those who are making decisions that control the lives of our family members and loved ones.

Is it so much to ask the State of California for transparency, communication, and the ability for us to make informed choices about the care of those we love?

Sincerely,
Kathleen Miller-PHA President
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