Time for a New Direction in Implementing the Settlement Agreement with Regard to Training Center Residents

We, the families and Authorized Representatives (ARs) of residents of Virginias Training Centers (TCs), are deeply concerned with the States lack of understanding of the complex needs of TC residents, the lack of necessary supports in the community for those residents, the underestimation of the true costs of transitioning them to the community, and the failure of the McDonnell administration to respect the choices of ARs. We, therefore, propose that Virginia take the following steps to devise a new, more humane and cost-effective plan for TC residents that is consistent with the Settlement Agreement: Suspend the present unrealistically rushed and arbitrary schedule for TC closures, and stop the endless coercion of families to discharge the residents into the unprepared community. Accurately characterize the extraordinary needs of the residents of the TCs as a basis for planning the supports and services they need to thrive in community placements. Identify the true costs of providing the needed supports and oversight in various settings. Expeditiously survey families in an objective manner about their placement preferences. Replace the existing Department of Behavioral Health and Developmental Services (DBHDS) plan with one that includes: A schedule of steps that are essential to create the community supports needed by TC residents, including the creation of sufficient high quality community Intermediate Care Facilities for Individuals with Intellectual Disabilities (ICFs/ID). A requirement that no one be moved from a TC into a community placement unless it provides equal or better supports and services than those offered at the TCs at the time of the Settlement Agreement. A requirement that any supports or services uniquely offered at any closing TC be taken up by another TC, so that the residents who depend upon those services and who choose continuing TC placements will have somewhere to go. A solicitation of TC public-private partnerships with compatible entities.

Current Unworkable Schedule to Close Training Centers While current efforts by the DBHDS to transition TC residents to the community have, so far, been primarily successful for discharged residents with less challenging conditions, the overall lack of appropriate capacity in each region demonstrates that the community remains unprepared to support the large number of more disabled residents who remain. There is much evidence to support this conclusion. Three DBHDS reports list the inadequacies of the current waivers for people with intellectual and developmental disabilities (ID/DD) who have complex conditions, including nearly all TC residents. The Independent Reviewers first report tabulated the significant percentage of residents discharged from TCs who did not get all the services prescribed in their support plans. Northern Virginia Community Services Boards (CSBs) and private providers have written to State officials several times indicating that there is insufficient capacity to meet the scheduled closure date for Northern Virginia Training Center (NVTC). Statewide, the inconsistency of community placement types offered to TC residents seems driven by expedient availability rather than resident need; for example, the high use of Sponsored Residences for those leaving Southwestern Virginia Training Center (SWVTC) versus numerous ICFs/ID for those leaving Southeastern Virginia Training Center (SEVTC). In addition, seven percent have been moved to nursing facilities, mostly from Southside Virginia Training Center (SVTC), which is blatantly counter to the intent of the Settlement Agreement. Residents of CVTCs five-star nursing facility have been offered inferior quality, non-ICF/ID nursing home placements, some extremely distant. Finally, SVTC and NVTC
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are scheduled to close before new higher waiver rates will be available. Under these circumstances, it would be dangerous and foolhardy to adhere to the current schedule. DBHDS Coercion of Authorized Representatives to Move Residents into an Unprepared Community against their Wishes The Settlement Agreement, in section IV(C)(10), provides that no resident of a Training Center shall be discharged from a Training Center to a setting other than a Training Center if he or his Authorized Representative chooses to continue receiving services in a Training Center. Whenever DBHDS ha s communicated this right to ARs, it has been buried in a lengthy letter containing a threat to move remaining residents to a distant TC far from family supports and, thus, is not understood by some ARs. Discharge planners and other staff continually offer inappropriate placements to ARs and incessantly contact ARs about discharge plans, without mentioning the option to stay in a TC. Despite enormous pressure, 400 out of the 741 ARs continue to choose TC care, with another 187 essentially undecided. These are the Departments own figures, based not on true AR choice but on TC social worker estimates of how malleable ARs are. Yet, despite the legal requirement under the Settlement Agreement to accommodate AR wishes, the DBHDS continues to insist that SEVTCs 75 beds will be sufficient to meet the demand. Virginia should engage an independent, non-ideological and competent entity to perform an objective survey of ARs to determine how many choose community placements and how many choose continued placement at their current TC, as well as how many would choose any TC over the community. It is only reasonable to learn the results of such a survey as a guide to ongoing planning efforts. Training Center Residents High Level of Special Needs For over a decade, DBHDS policy has been that TCs are the option of last resort when community supports are inadequate, while nearly all of those able and wishing to leave have found community placements. Hence, the vast majority of those remaining have diagnoses of severe or profound intellectual disability, and many have co-occurring mental illnesses or other disabling mental or physical conditions. They need assistance for nearly all aspects of self-care, cannot effectively communicate their desires, and/or are quite medically fragile or behaviorally challenged. Nearly all need 24 hour care for their health, safety, and survival. Their combined disabilities are linked to high risk for abuse, neglect, or even death. We believe it is essential that plans to meet resident needs be based upon their complete diagnoses and histories as well as their preferences, as outlined in their Individual Support Plans (ISPs), and that all necessary supports and services designated in their ISPs be in place in the community before residents are asked to consider moving there. Underestimation of the Real Costs of Community Care The DBHDS forecast of dramatic savings from transitioning TC residents into the community is demonstrably wrong. DBHDSs prior studies highlight the inadequate funding and missing supports necessary for many now living in the community, let alone the extraordinary needs of those now considering transitioning from TCs. In 2006, a national study by community advocate Charles Lakin showed that much higher wages are necessary to recruit and retain community Direct Care Professionals and to enable them to gain the skills to serve those with complex conditions. A simple analysis that assumes TCs hire nurses because they are needed shows that comparable duties in the community would consume 25% more of their time, just for travel, and would also necessitate hiring more nurses to serve a decentralized population. Chimes of Maryland provided group home supports during the closure of a Maryland Center, but Chimes costs are equivalent to Training Center costs in Virginia. Hence, Chimes will not expand operations in Virginia under the current waiver. In general,
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national trends are closing the gap between community and institutional costs, as the quality of services is improved for individuals with the most challenging needs. In a recent law review article by Sam Bagenstos, the Principal Deputy Assistant Attorney General in the Department of Justices Civil Rights Division from 2009-2011, he states, as deinstitutionalization advocates shifted their goals from rights to services, the cost gap between institutional and community services narrowed. Bagenstos identifies cost shifting, differences in staffing costs, and adequacy of services as cost factors which will cause the cost gap between institutions and community services to narrow further or even in some cases reverse. For TCs, by contrast, DBHDS overestimates costs, since it has burdened TCs with discharge planners salaries and other transition-related costs, resulting in expenses unrelated to the care of the residents, while making no plan for future efficiencies. Nonetheless, according to DBHDSs own budget for implementing the DOJ Settlement Agreement, even with optimistically low community costs, stopping all TC closures would essentially be budget neutral. Virginia should objectively estimate support costs for those with the most challenging conditions based upon their individual needs and preferences, considering community and TC support options, and should explore the possibilities of public-private partnerships with compatible interests to maintain the high quality Training Center option, contain costs, and maximize possibilities to serve others in need. Moreover, Virginia should not proceed with the current plan until HSRI, an independent entity hired by the State to study realistic future waiver costs, has completed its work, and Virginia has implemented a new waiver that funds all needed supports. Developing a Collaborative Plan for Integrated Supports Since there is inadequate capacity in the community for TC residents and far more ARs are choosing the TC option than estimated by DBHDS, it makes sense for Virginia to rethink how it will implement the provisions of the Settlement Agreement. A review of the unique services now provided by TCs reveals the value of preserving the regional TCs as a component in a comprehensive system of supports, yet even the Regional Community Support Center funding is not in the DBHDS budget for the Settlement Agreement. An integrated approach was laid out in considerable detail in the Northern Virginia Regional Plan, developed collaboratively by all of the community and NVTC stakeholders. Training Center families in other regions have proposed comparable plans to meet local needs, yet the DBHDS has refused to even consider them. It is time to revise the Settlement Agreement implementation plan before it is too late. A better plan would include equal or better local community placements for residents choosing to accept them, and modernized, efficient local TCs. Judith Korf, Co-President, Parents & Associates of NVTC, (571) 201-8428, r3n39ad3@gmail.com Jane Anthony, Co-President, Parents & Associates of NVTC, (703) 860-8652, janthonyjane@comcast.net Jane Powell, President, CVTC Families and Friends, (804) 262-1548, pashabean@verizon.net Wanda Robinson, President, Parent Advocacy & Advisory Council of Southwest VA, (276) 236-2122, theredhead@embarqmail.com Lorraine Koury, Co-President, Parents Organization of SVTC, (703) 352-9432, lmkoury@verizon.net Colleen Lynch, Co-President, Parents Organization of SVTC, (757) 508-4558, Colleenlynch96@gmail.com
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