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This post is an update of an article included in the most recent issue of The Eldridge Gazette. If you are on the mailing list, you will receive your copy soon -- or download a pdf copy by clicking The Eldridge Gazette, Nov/Dec 2013.
Idea 1: Establish a comprehensive medical resource center for the community
We heartily support this idea and the concept that a clinic be located on Sonoma Developmental Center land to serve center residents who move to alternative placements. We are also pleased that it can include supports for consumers living in other alternative community residential options, who have complex medical and behavioral needs as well as those individuals who are moving from developmental centers. We continue to support the idea that community services must: 1) include a range of options; 2) have access to stable funding; and 3) have available the necessary supports for individuals to live successfully outside developmental centers.
We also support the concept that a medical clinic be developed and maintained on Sonoma Developmental Center land that provides needed services to maintain the medically fragile individuals and behavior residents who are forced to move to alternative placements prior to them being moved. Those who are early movers must not be excluded from access to medical services simply because they were the first to move. Sonoma Developmental Center physicians should be given the option to work in medical clinics that serve these populations.
Idea 2: Use State Developmental Center land to develop community services, including a medical resource center and mixed use communities similar to Harbor Village
While we support the existing “Mixed-Use” Communities, such as Harbor Village, we do not support the expansion of such communities for current developmental center residents. We oppose the development of a large “Mixed-Use” Community on the Sonoma Developmental Center campus. Our reasons are as follow:
- The residents with behavioral issues who currently reside in Sonoma Developmental Center require residences that do not have common walls and many require residences with structural supports. Residents with behavioral issues also benefit from having ample space to take walks and de-escalate when it is necessary. They require an accepting environment that is safe and allows them to be in charge of their behavior when they need to do so. They benefit from the calm, beautiful grounds and a few residents spend the large part of their day outside paying occasional visits to the farm, or store , or simply wandering the natural setting that is SDC. Also, some residents with these issues may require a residence that is locked for a time. However, if this is the case then provisions should be made to be able to transition to unlocked residences as they are able to handle them safely. It would be best if these moves can be accommodated while maintaining most of the elements of their environment. Some residents have changing needs in this regard and provisions will need to be developed that enable those individuals to be able to transition in place within their community from locked to unlocked residences as needed. Such requirements place serious economic constraints on the type of housing that would meet their needs and calls into question whether they can benefit from the advantages of living in a “Mixed-Use” Community.
- We do not support the idea that community living is only possible in the company of non-disabled individuals. There are many examples of intentional communities, such as retirement communities, university campuses, housing arrangements for people with autism or other disabilities and developmental centers.” Community” is more than “Mixed-Use “housing which under current regulations means three nondisabled residences per disabled residence. ”Community” includes shared open space where people go to play, work, shop, eat, and celebrate life events together. Intentional communities for those with varied disabilities are often the first choice of consumers. Two such intentional community housing options currently exist in the Sonoma/Napa Counties in addition to SDC and both have wait lists.
- Local communities may want to decide how much and what types of development occurs in their neighborhood. Restrictions may currently exist on DC land. Economic realities must be included in the decision of whether a “Mixed-Use” community may be the best use for DC land. There may well be other locations that would better fit such a “Mixed-Use” living project other than developmental center campuses. Much of those considerations lie beyond the scope of this task force.
- We also feel it is important to point out that whatever else is on the DC land it will need to contain a crises program, a transition facility, a state facility for those whose needs are best met in state housing, and a medical clinic. We fully support the use of DC land for these uses first and foremost and these uses may not blend necessarily with a high density “Mixed-Use” Community.
- We support a public/private partnership to create half-way ICF homes for behavioral residents who may reside for a time in the state zero reject facility. These homes can create a bridge to help residents transition into community housing or may need to provide a more long term residence for those who present a higher risk to both themselves or to the community. These homes can coexist with a state zero reject facility on Sonoma Developmental Center land.
Idea 3: Serving Individuals with Enduring and Complex Medical Needs
We support the examination and use of mortality studies and mortality data and their recommendations before the forced relocation of medically fragile developmental center residents.
While we understand that there are models of care in the community that provide services to consumers with significant medical needs, we do not agree that they negate the need for state operated facilities. Until death data confirming that these services, and the transitions to them, do not cause the decline and unintended deaths of medically fragile DC clients, they should not be forced into other living options. Currently we do not have access to this data.
Following the closure of Agnews Developmental Center, there were studies to look at the success of the closure and subsequent moves. While there were studies commissioned by DDS at considerable expense, they neglected to provide data on the one issue of concern to our families of medically fragile DC residents -- the rate of deaths during the closure years in comparison to death rates prior to the closure process. When we attempted to obtain these data, we were given data that appeared to be inconsistent and incomplete. Attempts to get information on the rate of deaths during the current closure of Lanterman Developmental Center have yielded more inaccurate data or have been ignored.
Before we eliminate the safety net of the Developmental Centers for those with enduring and complex medical needs, we request that there be data collected on death rates. In the event that there is an increase in the rate of deaths during closures; we feel that needs to be addressed prior to any plan to move the remaining medically fragile individuals out. It is only reasonable that the DDS and anyone concerned about the safety and well being of these individuals would do this.
We also feel strongly that the clinic concept needs to be in place and ready to provide necessary medical support services before any medically fragile individuals transition to alternative homes. It is vital that they have access to enhanced medical services to maintain them in alternative settings.
Idea 4: Serving Individuals with Criminal Justice System Involvement
We support the state continuing to operate a secure treatment facility for those involved with the criminal justice system. We also support the continuation of Canyon Springs as a “step down” program for those leaving Porterville Developmental Center.
Idea 5: Individuals with Challenging Behaviors
We support state services for individuals with challenging behaviors including crises, stabilization and assessment, and residential services. Our reasons are as follows:
- Members of the Task Force understand and have stated that no model exists outside of the state facilities that can safely provide for some consumers with challenging behaviors. Closer examination of alternative housing reveals that what is best about an alternative housing model are the provision of enhanced staffing and access to behavior services. These models already exist in specialized housing arrangements with enhanced funding. These provisions have worked for some individuals, but have not worked for others who need even more services and supports. Adding increased restrictions on individual freedoms such as behavioral restraints and locking the homes, is not the answer. Without the intense oversight provided by layers of staffing and the many licensing requirements at the developmental centers there are too many opportunities for these restrictions to be misused. Locking the perimeter and/ or the building and mixing residents with different behavioral challenges, is very likely to lead to a dangerous situation. There is risk that such alternatives will not be safe much less therapeutic. The use of restrictive interventions should be used only with a high level of oversight.
- Developmental centers already have a process in place to ensure that consumers who are stable and ready to re-enter the community by selecting an appropriate living option, are able to do so. In fact, recent trailer bill language mandates that every single resident have a complete assessment to determine if they are able to make a move to the community. Any resident who expresses a desire to leave has immediate access to assistance from a Client Rights Advocate to assist them in realizing that wish. Without a mass forced relocation of the last remaining developmental centers of the challenging behavior residents, the DCs will continue to become smaller and leaner. What is needed now is not closure but restructuring to develop a state system to more cost-effectively serve this limited population
- Forcing those with intense behavioral challenges out of the developmental centers places them at unnecessary risk. We know from experience that this is a group of people that often suffer from all types of abuse, over or under medication, untoward police involvement, frequent evictions, a limited range of activities and other personal risks. For some people, the developmental centers have provided the only stable home they have ever known. We celebrate the stories of those who have gone to alternative homes and have been successful. Unfortunately, all too often, we families and friends are the only ones available when the community placement falls apart and the individual and the public are at risk. Too many families of behavior consumers have seen loved ones bounced from place to place due to the lack of necessary supports. Today, it is necessary to continue to have state residences to rely on so this will not happen.
- Crises services are lacking in for many regional center clients. They can end up in emergency rooms, acute psychiatric centers created for the general population, and even jails. We believe a crises center that can be accessed quickly for those who need it could be a service that should be located on Sonoma Developmental Center grounds and staffed by experienced and qualified state staff.
- A zero reject state facility, recommended by the task force, should be included in the services provided on the Sonoma Developmental Center site. There are current SDC residents who need to remain there for their safety and well being and this service needs to also be made available to behavior consumers who have been ejected from alternative residences.
- Sonoma Developmental Center land is an ideal location for a medical clinic recommended by the task force to provide much needed medical services to medically fragile and behavioral former SDC residents who have been required to move to alternative placements. Medical services need to also include dental, durable equipment maintenance, and mental health services for these vulnerable former SDC residents.
- Sonoma Developmental Center land is an ideal location for public/private partnership ICF homes. Some of these homes can serve as half way homes for behavior residents who are transitioning from the state facility to alternative homes outside Sonoma grounds. Additionally there could be ICF medical homes developed that serve the most medically fragile who would be at risk in other alternative placements. These ICF medical homes would be located near to the clinic to further insure that medical services are available as needed.
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