Monday, April 22, 2013

Serving the "least among us"

Earlier this month, PHA Past President Mary O'Riordan, along with SDC staff psychologist Markley Stevens Sutton, received special recognition from PHA for her years of dedication to those with developmental disabilities. Mary received her plaque at the annual 'Heroes With Heart' dinner.

For anyone who was unable to attend the event, we're posting below the short speech Mary gave in accepting the award. In her remarks she touched on some of the history of Sonoma Developmental Center, which we think helps to put the important work that PHA continues to do on behalf of SDC residents in perspective.

Ireland by Jan Farthing on flickr


Thank you all so much for this honor -- I love these plaques and will cherish it the rest of my life. I can’t think of anything I would rather be honored for than for my involvement with PHA and the wonderful people I have worked with and the dedicated staff I have known, loved and admired throughout the years.

I would just like to say a few words about my feelings about Sonoma Developmental Center. First of all: I think SDC is unique and special. There was good reason why two women -- two parents -- established the Sonoma Developmental Center over one hundred years ago so that their developmentally disabled children and others who are developmentally disabled could have a place to live out their lives in a safe and charming environment. And I want to mention, when it was first established, it was a private home, but then these families saw the tremendous need that existed and they were overwhelmed with requests for assistance, so they approached the legislators and lobbied and in time got the governments involved so that these services became part of the system and this vulnerable population were rightfully represented and they would have a steady flow of funds to continue to serve those who needed these services. This type of facility with all the needed services centralized established continuity, licensing requirements and regulations and stringent oversight and quality assurance – and that is what was needed at the time and is still needed today.

We thank those families for choosing the beautiful setting at Sonoma Developmental Center. It is an absolutely beautiful campus and as someone who visited it once commented “this is a place of healing”.

Wednesday, April 17, 2013

The True Believers

by Kathleen Miller, PHA President

Last Thursday I attended a senate budget hearing that I was told was to follow up on the improvements that have taken place over the last months at Sonoma Developmental Center. I was happy that I had good news to report and went armed with the Eldridge paper that had listed all the new hires. I was even able to give specific information about changes in the day programs on ICF [intermediate care facility]. I need not have bothered. One member of the senate budget committee had clearly made up his mind and played to the crowd of protesters demanding the closure for the centers. He joined with the mob calling for the closure of Sonoma and failed to really hear concerned voices who raised issues around that. (Please take a moment to view the stories presented in the news about the rally and hearing.)

ABC 7 News – KGO Bay Area
http://abclocal.go.com/kgo/story?section=news/local/north_bay&id=9062195

CBS 13 News – KOVR Sacramento
Members of disable community rally at capitol to shut down abusive care centers

Capital Public Radio – Sacramento
Disability advocates call for closure of state-run residential centers 

California Watch
Lawmakers mull next steps for developmental centers

California Watch
Independent oversight proposed for developmental centers

The many individuals with signs calling for closure and demanding that the residents of the developmental centers be “freed” both saddened and interested me. When I attempted to ask them why they did not support the choices of those who lived in Sonoma they became irate. Some resorted to calling me names. It was clear to me that they did not have a real understanding of Sonoma, or the residents, or the families who love them. When I spoke to one woman she asked me if my son was verbal. When I told her he was she asked if I ever visited. When I told her I was at Sonoma on a weekly basis she seemed skeptical. It would not have mattered no matter what I said. She was s in it to fight the good fight. Her prize was not 72 virgins but the closure of all the evil centers. Those of us who support the centers are evil as well. Led by ARC, paid providers, and paid advocates this was a group of true believers.

Those of us with loved ones living in Sonoma are concerned about the fate of our loved ones in the event of closure. Most of us worry about the gaps in community services for folks like ours. We worry about limited oversight and who will care, much less investigate, when our family members are abused in community homes. We worry about whether our sons and daughters with behaviors might end up in acute psych centers or jail. We worry that they will never again be able to take a walk on their own or have the many freedoms they enjoy with life in Sonoma if it closes. We even worry that they will not survive closure or a move to an outside placement.

Of course the providers who have come with their minions will testify that they are able to provide the same care for a fraction of the cost. That is just what the legislators want to hear. Who can blame them? With the reduction in the number of residents in the centers the cost per resident is high. True believers do not confuse the issue by noting that community care costs do not include much of the real costs associated with these difficult to serve folks in other settings. No one really has that information anyway, just as no one seems to know how much the death rate increases for developmental center resident increases during closure or what happens to behavior clients already living outside the centers. A little collateral damage is necessary when making these sweeping changes. True believers get this and accept it.

Also ignored is the fact that any resident of a developmental center has the right to ask to live else where, outside of the developmental center. This choice is law and based on a legal process called a writ. All any resident of a developmental center has to do is say they want to move and their wish must be heard and granted. Some true believers complain that it can takes months for regional centers to find anyone willing or able to take on difficult center residents. Of course they never mention the fact that it is only in developmental centers that clients have this right. Once they move into a community home they can be miserable and they have no legal process like the writ to ask for a change of placement. Choice may no longer be an option. So basically it is only fancy words that choice is important to true believers. The one setting where choice is mandatory in the law is the same setting they know must be eliminated as an option-even for those who are able to clearly state that is where they want to be.

And really, has not the press has been writing for months about the abuses that have occurred at Sonoma? Nine years ago one resident did become pregnant although it unclear who or when. Some behavior clients were subjected to tasering. The fact the hundreds of individuals who are abused in community homes does not get much press is not the issue. The press wants the big story, the large demonstration, the red meat. I do have sympathy. It is very difficult to really know what happens in the board and care with two staff or the supported living that may have only one. It is impossible to get access to information. Regional Centers are not subject to the public records act and DDS [Department of Developmental Services] simply does not appear to have it. (I know - I have tried.) Even if a story of abuse in the community does get so bad that it hits the paper it is a blip, and then it is gone. It certainly does not have the staying power of Sonoma.

I must give credit to last week’s demonstrators. They do tend to make visits to Sacramento a regular outing. I have trouble getting my parents to accept we are in danger of losing Sonoma. However they do not count on the fever of the true believers. The believers have found a cause and do not want to be confronted by the facts, the potential for harm their actions may have, or by the feelings of those with the most to lose. They do not want to hear about options or the right to choose. They do not want to listen to any truth but their own. Such is the nature of the true believer.

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Comments and feedback welcomed. Please leave your comments below, visit our Facebook page to share your views, or email the Parent Hospital Association at info@parenthospitalassociation.org.

Rep. Mike Thompson Recognizes Mary O'Riordan

Each year at its annual fundraising dinner, the Parent Hospital Association singles out one or two people who have made outstanding contributions to the lives of the disabled and PHA's efforts on behalf of Sonoma Developmental Center. The honorees at this year's Heroes With Heart event this past Saturday were Markley Stevens Sutton, licensed psychologist with Sonoma Developmental Center, and Mary O'Riordan, previous PHA President and longtime advocate for the developmentally disabled.

Congratulations and heartfelt thanks go out to both of this year's honorees from all of the PHA membership.

Mary O'Riordan
Mary O'Riordan was also recognized this month in Sacramento by Rep. Mike Thompson for her work on behalf of PHA and her advocacy over the years. From his proclamation:
Ms. O'Riordan dedicated her life to serving persons with developmental disabilities. As President of PHA, she was in constant contact with state legislators in Sacramento and federal representatives in Washington, DC, traveling multiple times to both capitals to advocate on behalf of association members. She also served six years on the board of directors of VOR, the national advocacy group for persons with developmental disabilities.

Ms. O'Riordon's advocacy is rooted in her personal experience. Michael, the second of her four sons, was severally disabled and lived at Sonoma Developmental Center (SDC) until his death in January 2011. It was his experiences at SDC, the place he called home, that led her to champion the institution, its staff and its residents.

Ms. O'Riordon was passionate about her calling, stating, "I look forward to the day when every family--those who have a developmentally disabled child and those who do not--are equally involved, engaged and concerned about the special needs of our developmentally disabled citizens and to the day when all legislators have their needs on the top of their list of priorities.''

You can read the entire proclamation here: Honoring Mary O'Riordan, Parent Hospital Association, County of Sonoma.

Tuesday, April 16, 2013

Local Officials and Nonprofits Making Moves to Secure SDC Land

Old apple orchard above Sonoma Developmental Center / Sonoma Ecology Center

The Kenwood Press is reporting on moves by Sonoma County officials, Valley ecologists and other interested parties to safeguard the open space contained on the Sonoma Developmental Center campus in the event of the Center's closure.

From the article:

"While nothing about the Center’s future is certain today, the 1977 Lanterman Act continues to set the policy of moving developmentally disabled people from institutional settings to smaller community residences. The huge centers dotted around the state are being de-populated and shuttered, with the lands they occupy being declared surplus and put up for sale. San Jose’s Agnews Developmental Center has been completely closed since 2010 and its 86-acres in the middle of Silicon Valley are on the market for $60 million. The state Department of General Services is drawing up requests for proposals from the general market, according to a spokesperson. The 300-acre Lanterman Developmental Center in Pomona is also in the process of winding down and will probably be on the market by 2014. No price has been set.

"While a lot of effort continues to be put into preserving the SDC by the parents and guardians of the 500 or so severely developmentally disabled still living there, other people and groups are concerned about what will happen if the SDC is closed and its lands declared surplus by the state.

(...)

"The parents and guardians of the residents who remain at SDC will continue to fight to keep the communal living situation. While the existing buildings and grounds need a lot of very expensive maintenance and rehabilitation or even replacement, patient advocates hope that some form of high level living and care facilities can be maintained on the property to provide the same level of care residents now receive.

"The SDC’s situation has not been lost on county officials or nonprofits that protect and preserve local land for parks and wildlife."

You can read the entire article online at The Kenwood Press web site: SDC - Looking ahead


Community Home for Developmentally Disabled Met With Protests

A small group home for four developmentally disabled women proposed for a residential neighborhood in San Gabriel, CA, has been plagued by controversy since first being proposed back in December 2010. The women are set to move in soon, however, protests are still being lodged against the home.

This from the Pasadena Star-News:

A home for four mentally disabled women that has stirred controversy in a San Gabriel neighborhood has been completed and approved by the city, and residents are scheduled to move in soon.

The house, in the 600 block of De Sales Street, was purchased by nonprofit group Key Community Housing in December 2010 and since then has been remodeled to fit the needs of the four women, who suffer from developmental disabilities, including autism and Down syndrome. But since the house was purchased, a neighborhood group calling itself "Protect the Neighborhood" has held regular protests against what they say is a "business" moving onto their residential street.

At a lively council meeting last January, dozens of community members and disability rights activists argued with concerned neighbors about the house. The city has continued to say that it has no power to prohibit the four women and their caretakers from moving in.

"We are required by law to treat it the same as any other single-family home," City Planner Mark Gallatin said.

Stephen Smith, spokesman for Protect the Neighborhood, said he and his neighbors continue to object to the house, and will continue to picket two or three times a month in front of the home and in front of the residence of the Key Community Housing board member who signed the deed purchasing the house.

Smith emphasized that the group has no objection to the developmentally disabled living in the neighborhood, but opposes the use of tax dollars to create these community homes and the parking and traffic issues associated with the 24-hour care at the facility, The group also supports the family members that would prefer their loved ones be housed at a large institution.

"There's a lot of nuance to it," Smith said, adding that the group also plans to protest similar homes in other areas.

read more...

Friday, April 12, 2013

Escape Artist

The following story is by a PHA family member. In it she looks back on her time caring for her autistic daughter at home. Stephanie now lives at Sonoma Developmental Center.

If you would like to share your story on the web site, you can email it to info@parenthospitalassociation.org or send it by regular mail to Parent Hospital Association, P.O. Box 237, Eldridge, CA 95431.

* * *

Adventure must start with running away from home.
~William Bolitho

"Sally, why was your sister in my back yard this morning, naked?" asked Margie, our little five-year-old neighbor. It was mid afternoon and all the kindergarteners had just arrived home from school. Everyone knew each other in our small neighborhood, so Margie was comfortable walking over to our house. She stood in the doorway waiting for an answer.

It had been a pretty typical morning. At around seven o'clock on this lovely spring day, when all six of my children were waking up and getting ready for school, Sally's sister, Stephanie, made her escape. Stephanie never wanted to be encumbered by clothes but preferred to run freely without them, which created a struggle when I tried to dress her. She was getting bigger, stronger and more difficult. She looked like a typical, healthy eight-year-old, but Stephanie was autistic. She could not communicate well, but that didn't take away from her incredible determination to get what she wanted. She would steal a French fry right off your plate even though you told her she couldn't have one.

I used to think motherhood would be orderly. When Stephanie was born, I had visions of dressing up my new baby and pushing her around in a stroller. This didn't last long because Stephanie soon learned to climb out of the stroller and run away. She has been running away ever since.

At least we lived in a safe neighborhood for a child who liked running away. The neighbors always kept an eye out for Stephanie.

Our white stucco house with the red tiled roof looked standard on our block, but there was one big difference -- we had a more extensive lock system than any of the other families. For some unknown reason the front door was not secured on this day, and Stephanie got away, running down the block naked.

I thought that Stephanie was downstairs. When I realized that she was gone, I panicked. Eight years old and fleet as a deer, she could disappear quickly, and I wouldn't be able to find her. It didn't even faze me that Stephanie would run around the block naked; I just wanted to make sure she was safe. She was not careful about crossing the street, and I was afraid she would get hit by a car.

I was reminded of the time Stephanie ran away the year before. The police had brought her back to us after she dashed across Sir Francis Drake Boulevard, a main road in our town, and ended up at the local high school.

As I ran down the street looking for my naked girl, frantic thoughts were running through my mind. Stephanie could have run off with a stranger. Maybe that wasn't likely, but it felt like something to be afraid of at that moment. If Stephanie went into someone else's house, I wouldn't be able to see her or know where to look for her.

Even though I was a wreck, shaking with fear, Stephanie's siblings did not get upset. They just helped look for her before moving on with their day.

This was a typical reaction of Stephanie's siblings to their autistic sister -- just deal with the problem at hand and then move on with your plans. She was just one of us, a sister to be accepted, loved and protected.

I was still running down the street searching when I saw Margie's mother in the Chan's yard. "Erin, here we are," Maxine Chan called to me, holding Stephanie's hand. Steph as as happy as could be without a stitch of clothes on. As they walked out of the Chan's yard, she looked at me and smiled bigger than she had ever smiled when she was bogged down with clothes.

Because Stephanie couldn't talk, we had to learn to look at her face. That's all we really went by most of the time because there was no conversation. One of Stephanie's most telling expressions was when she would shiver with joy.

At that moment, maybe she was just cold because she was naked, but I think she was shivering with joy. As her mouth spread so wide that you could see every one of her teeth, she tightened her arms to her sides, her face turned a shade redder and her torso and head quivered back and forth so quickly that you could barely see the movement.

The tension drained from my body. The neighbors always took care of Stephanie. Everyone knew why Stephanie was the way she was. It made me feel like my neighbors were an extended family.

I met a woman who lived in an apartment in San Francisco with an autistic son similar to Stephanie. She told me all of her neighbors acted as though her son was some weird kid and never reached out to her. We were so fortunate to have our neighbors, since the people surrounding Stephanie made all the difference. My life and Stephanie's life would have been drastically different without them.

Not fazed in the least by Margie's question, Sally responded, "Oh, she got away from my mother when she was trying to dress her this morning." These two little girls had more important business at hand; Margie had come down to our house after kindergarten to play with Barbie dolls.

~Erin O'Donoghue Thompson

Wednesday, April 10, 2013

Budget Hearings on Developmental Services Thursday in Sacramento

The Senate Budget Subcommittee #3 on Health and Human Services has a hearing scheduled Thursday morning, April 11th, which will focus on several items including the Department of Developmental Services (DDS).

No action is expected at Thursday's hearing on any major issues.

Highlights:
  • The Department of Developmental Services oversees the operations of the 4 remaining State owned and operated developmental centers and contracts with the 21 non-profit regional centers who coordinate and fund community-based services and supports to over 260,000 children and adults with developmental disabilities.
  • For the first time in over a decade, no major cuts are proposed to the developmental services budget, and the Governor is proposing that the existing 1.25% payment reduction to most regional center providers and regional center operations end on June 30, 2013.
  • The subcommittee will hear updates on the closure process of Lanterman Developmental Center in Pomona, and also an update on the licensing and related issues at Sonoma Developmental Center in Eldridge that has drawn some controversy in previous months.  
  • One issue of that has sparked some concern among advocates – especially among families with children with autism spectrum and related disorders, is the issue of reimbursement of certain health insurance co-payments. The Governor’s budget includes increases of $15 million in State general funds in the 2012-2013 State Budget and $9.9 million in State general funds for the 2013-2014 State Budget to fund payments by regional centers of health insurance copays for services identified as necessary in the consumer’s Individual Program Plan (IPP)
  • The Department of Developmental Services estimates that these costs include both “co-pays” that are payments made by the insured directly to a health care provider for each service or visit, as well as what is known as “co-insurance” and refers to a balance of costs for services above and beyond what is covered by the health insurance.
  • The Brown Administration, regarding this issue, also proposed in February, budget related language to specify the conditions under which regional centers would be authorized to make such co-payments when necessary to ensure that the person with developmental disabilities receives the service or support, when health insurance covers the service in whole or in part, when the person (or family if the person is under the age of 18) has income that does not exceed 400% of the federal poverty level (FPL), and when there is no third party who is liable to pay for the cost.
  • The Department of Developmental Services estimates that roughly 50% of persons with developmental disabilities receiving services or families, have incomes below 400% of the Federal Poverty level.
  • The proposed budget related (trailer bill) language also includes provisions that would provide flexibility for regional centers to cover co-pays for consumers or families with income above 400% of the Federal Poverty Level under extraordinary circumstances when needed to successfully maintain the child at home or adult with developmental disabilities receiving services in the least restrictive setting. The proposed legislative language would also prohibit payment by regional centers of insurance deductibles (the amount the insured must spend on his/her own before insurance benefits can be utilized).

Wednesday, April 3, 2013

"An Evening in Wine Country" PHA Event Less than Two Weeks Away


This year's annual Parent Hospital Association (PHA) fundraising event is just a week and a half away -- on Saturday, April 13, 2013, at the Vintner's Inn Event Center in Santa Rosa. If you act quickly you may still be able to reserve your place at the table!

www.brownpapertickets.com/event/345692

Last year was PHA's first at Vintner's Inn and the evening was so enjoyable and such a great success that we decided to return there again this year. If you can, we would love to have you join us for a champagne reception, entertainment by the Rowan Brothers, silent and live auction, and dinner by John Ash & Co. Executive Chef Thomas Schmidt.

This year's special honorees are Markley Stevens Sutton, Ph. D., Licensed Psychologist with the Sonoma Developmental Center, and Mary O'Riordan, previous PHA President.

Reserve your ticket now using the Brown Paper Tickets link above, or contact event coordinator Judy Groverman Walker for more information. judy [at] jgwevents [dot] com.

Hope to see you next Saturday!
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