Governor and Legislators Urged to Save Sonoma Developmental Center

Supporters rally in support of Sonoma Developmental Center, on Saturday,
Sept. 14, 2013. (Alvin Jornada / The Press Democrat)

Over the past few months a group of Parent Hospital Association (PHA) members has been working to bring together the voices of the many who value Sonoma Developmental Center (SDC) and send a clear message to Sacramento that SDC must be saved.

The center piece of their efforts has been a petion drive on MoveOn.org. Members also lobbied legislators in Sacramento and testified before the Future of Developmental Centers Task Force.

In addition, earlier this month Sonoma's City Council unanimously passed a proclammation in support of the Center, and last week Mary O'Riordan delivered over 2,300 signatures, along with a message from PHA, to Sacramento, urging the Governor and state legislators to continue the services at Sonoma Developmental Center as an option -- and resource -- for the developmentally disabled citizens of California. She then reported on the progress of the petition drive to supporters at a rally on Sonoma Plaza on Saturday.

The following is the letter that was delivered along with the signatures to Governor Brown and legislators:

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September 12, 2013
Honorable Jerry Brown
Governor of California
State Capitol, Suite 1173
Sacramento, CA 95814

Secretary Diana Dooley
Health and Human Services Agency
1600 Ninth Street, Room 460
Sacramento, CA 95814

Dear Governor Brown and Secretary Dooley:

I represent the Parent Hospital Association (PHA) at the Sonoma Developmental Center.  Our organization advocates for high quality care and human rights for people with intellectual and developmental disabilities. On behalf of those we represent, we appreciate this opportunity to offer our perspective regarding the need for the continuation of the specialized services and supports provided at the Sonoma Developmental Center.

Many of the developmentally disabled people we represent at the Sonoma Developmental Center have profound developmental disabilities, including multiple physical disabilities, such as, blindness, deafness; many are medically fragile and/or experience dangerous behaviors. These individuals require round-the-clock care provided by the professionals who work at the Sonoma Developmental Center.

PHA members strongly believe that forced deinstitutionalization, without regard to individual need or preference, supported by community-only advocates and pursued by some policymakers as a cost savings strategy, results in predictable tragedies as the most medically fragile and disabled individuals are removed from their present home to less specialized, under-funded settings, in board and care and group homes.

We need to recognize that the needs of all developmentally disabled people are not the same. The human condition is not one-dimensional, so the cost to care for individuals must necessarily vary and be responsive to varying needs and degrees of disabilities. Person-centered supports must not be neglected or ignored when shifting from “institutional” care to board and care homes or group homes.  Please consider the following:

• Cost Comparisons:
  The myth that community care is less expensive than care at facilities such as Sonoma Developmental Center is misleading. When individuals are moved from a developmental center to a board and care home or group home, costs shift from the all-encompassing facility care budget to a community services budget that draws from multiple public funding sources - housing, food, transportation, emergency room visits, and health care and dental care costs. Differences in wages, which relate direction to the staff qualifications and quality of care, are also not considered. These costs are not factored into the figure presented for community care services by those who advocate for community care only. Community care costs are understated for these reasons and the true cost is not presented and is, therefore, a false claim of taxpayer savings.
  
  
• Differences in wages and qualifications for direct care workers:
  In some community settings, wages are so low that turnover in a year is as great as 200%. In contrast, the developmental centers enjoy relatively long tenures and receive ongoing training in medication dispensing, therapies, positioning, active treatment, infection control, nursing, injury and fall prevention, basic care needs (bathing, grooming, eating, etc.), behavioral management and more. The expected “savings,” if realized, is based on faulty cost comparisons and comes at a human price -- tragic outcomes.  
   
• Lack of access to specialized health care:
  The acute care hospital, now situated on SDC campus would lose all benefit of economies of scale inherent in triaged care in one location, and instead have to bear higher costs across scattered home settings in a community. Cost savings would only be realized if treatment was compromised – a dangerous proposition for any patient. Do cost comparisons take into account the difference in cost for a severely disabled person with multiple disabilities with those with less severe disabilities? As long as advocates perpetuate the myth that deinstitutionalization will save money, policymakers will persist and the suffering will continue.

We must consider an individual’s needs, often life-sustaining needs, as the foundation of successful planning. This will prevent falling for the short-sighted mantra of forced deinstitutionalization at any cost, for all levels of disability, without regard to individual need or preference. Federal and state licensed, specialized facilities are not the medieval “institution” portrayed by supporters of community based care for every individual – a position which harms those whose needs are the greatest.

• Olmstead requires individual choice: 

Despite claims to the contrary, the U.S Supreme Court decision of Olmstead v. L.C., 119 S. Ct. 2176, 2187 (1999) does not support the view that congregate settings are automatically discriminatory against people with disabilities and does not, even remotely, support forced deinstitutionalization when not warranted by individual choice or need. Rather, Olmstead supports individual choice. Justice Ginsburg was very clear:

“We emphasize that nothing in the ADA or its implementing regulations condones termination of institutional settings for persons unable to handle or benefit from community settings...Nor is there any federal requirement that community-based treatment is imposed on patients who do not desire it.” 119 S. Ct. at 2187 (emphasis added).

“As already observed by the majority, the ADA is not reasonably read to impel States to phase out institutions, placing patients in need of close care at risk... ‘Each disabled person is entitled to treatment in the most integrated setting possible for that person -- recognizing on a case-by-case basis, that setting may be an institution." Id.

Recommendations:

We, the members of PHA, are asking you to hire an independent, non-partisan, non-biased, consultant – one who is not influenced in any way by lobbyists or vendors, all of whom could benefit from the closure of SDC. We call on such consultant to -

• Scrutinize comparisons that suggest community care costs are vastly less expensive than costs in facility-based homes such as SDC, and claims that individuals will be better served if displaced from SDC.
  
  
• Undertake a true accounting of service setting costs that avoids common cost comparison myths and ensures accuracy.
  
  
• Consider costs associated with emergency room and hospitalization usage by community residents. We contend that good, safe care results in fewer medical problems and hospitalizations, and less costs.
  
  
• Look critically at the human and fiscal impact of forced deinstitutionalization, without regard to individual need or preference.
  
  
• Provide accurate information on the number of developmentally disabled people who are now in California prisons and how they are victimized.
  
  
• Provide data on the number of deaths of developmentally disabled individuals in privately run group homes across this state and the impact of widespread privatization of our delivery system.

We recognize and strongly support the need for expanded high quality community based support options, but do not feel this can be accomplished by closing specialized settings. Thus, we strongly object to forced deinstitutionalization based on ideology and not on individual choice or need.

Don’t repeat past failures and human tragedies: There is no question that deinstitutionalization failed the mentally ill and we all have seen the tragic results where mentally ill people are on the sidewalks of our towns and cities and in the prisons. Do not continue down this same road by closing the safety nets for our developmentally disabled loved ones. 

If you have any questions, please contact me at 415-927-0542 or maryoriordan12@yahoo.com

Thank you for your consideration of our request.

Sincerely,

Mary  O’Riordan
Past President, PHA

Cc:  Senator Noreen Evans
       Senator Leland Yee
       Assemblymember  Marc Levine
       Assemblymember Mariko Yamada

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[If you have not yet had a chance to sign the petition and would like to add your name to the list of those supporting Sonoma Developmental Center, you can do so by clicking petitions.moveon.org/sign/governor-brown-save-sonoma-developmental-center]