July 9, 2013 The Honorable Robert F. McDonnell Office of the Governor Patrick Henry Building, 3 rd Floor 1111 East Broad Street Richmond, VA 23219 Dear Governor McDonnell: This letter is to implore you to take the necessary steps to ensure that the residents of Virginia s Training Centers for individuals with intellectual disabilities (ID) are afforded their rights to make free and unpressured choices with respect to residential placement pursuant to the Settlement Agreement between Virginia and the U.S. Department of Justice. As you know, section IV(b)(10) of the Settlement Agreement permits individuals, or their Authorized Representatives (ARs) on their behalf, to choose to remain in a state-run Training Center; 1 and section 12 VAC 35-105-115 of the Virginia Administrative Code affords ARs the right to make their placement decisions free from duress or coercion by the Department of Behavioral Health and Developmental Services (DBHDS) or other state employees. 2 We are concerned that a number of actions by the Commonwealth are denying ARs the ability to make legally consensual choices. We call on you to protect the legal rights of ARs to make these critical decisions about their loved ones futures. Specifically, we believe the following actions, among others, violate the spirit and, in many cases, the letter of the Settlement Agreement. Establishing a fixed closure schedule, rather than one tied to community readiness and AR choice, too often forces ARs to make hurried decisions between placement in a community that is not equipped to meet their needs or seeing the DBHDS move their loved ones more than a hundred miles away from their family and local community: Letters early in 2012 from the DBHDS to the ARs of the four Training Centers identified for closure indicated specific dates, with no qualifiers, on which their Centers will close. 1 Nothing in this Agreement shall prevent the Commonwealth from closing its Training Centers or transferring residents from one Training Center to another, provided that, in accordance with Virginia Code 37.2-837(A)(3), for as long as it remains effective, 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. 2 The Code section defines consent as the voluntary agreement of an individual or that individual's authorized representative to specific services. Consent must be given freely and without undue inducement, any element of force, fraud, deceit, or duress, or any form of constraint or coercion. (emphasis added) 1
Surveys of the ARs show that the DBHDS plan to retain just the 75-bed capacity of Southeastern Virginia Training Center (SEVTC) for those who wish to remain in a Training Center is inadequate to house all of those who will continue to choose Training Center placements, and SEVTC does not offer all services needed by those currently residing at other Centers. o Closure dates for Southside Virginia Training Center (SVTC) and Northern Virginia Training Center (NVTC) and perhaps other Centers occur before the community will be prepared to accept Training Center residents with complex conditions. o Two DBHDS reports explain why the current ID waiver is insufficient to support those with complex conditions. Negotiating a new waiver is a complex task with significant budget implications. Thus, it is unlikely that a new waiver will be negotiated and funded before SVTC and NVTC are scheduled to close. o The local Northern Virginia Community Services Boards (CSBs) have indicated that they cannot provide the necessary community residences on the DBHDS timetable under today s inadequate waiver rates and provisions. o The area served by Southwestern Virginia Training Center has only one type of residential alternative, that of sponsored homes, which many ARs consider too risky. o Statewide, the number of community Intermediate Care Facilities (ICFs), which offer more intensive services, regulations and oversight, is grossly inadequate. Many CSBs offer no ICF placements. o The DBHDS promised to improve oversight of community placements, but it still has a track record of lax enforcement of community licensing violations that render oversight largely ineffective. o Skilled nursing care, currently offered at Central Virginia Training Center s (CVTC) 5-star nursing facility, is not included in the DBHDS plan, leaving the 75 individuals in that facility with inferior, unsafe, and inappropriately unsupported options. Commissioner Stewart stated in his September 27, 2012 letter to ARs that, if after all attempts to engage an individual and his or her authorized representative in discharge planning are not successful, and a community home is not chosen (before the scheduled closure date), such residents would be moved to another Training Center over a hundred miles away, again regardless of other considerations. Secretary Hazel has stated his unwillingness to consider more flexible timetables for closure, despite the situations described above. Placing excessive discharge pressure upon Authorized Representatives and on discharge coordinators risks causing poor judgments with harmful outcomes, while failure to keep buildings up to safety codes and pressure on staff to find other jobs risks the safety and health of remaining residents: 2
Many ARs have found that long-term diagnoses for their residents have been eliminated from their records or changed to ones that would require fewer supports, and now the DBHDS says that discharge planning will be based only on the last year s Individual Service Plan (ISP), eliminating resident histories. Some critical information, such as recent onset medical conditions and surgeries, has been withheld from case managers. Minimum Data Set information, federally required by nursing homes receiving funding from Medicare or Medicaid, has routinely been withheld from CVTC residents case managers. Letters from the DBHDS to ARs indicated tentative dates for their residents to leave the Center and move into the community, without qualification that there are adequate placements available in the community. The ISP documents fail to disclose the right of ARs to refuse discharge and remain in a Training Center. The DBHDS has failed to inform ARs of their right to choose a community Intermediate Care Facility for Individuals with Intellectual Disabilities (ICF/IID) placement, and to explain the differences between ICF/IID and waiver placements. The DBHDS has issued directives that require social workers to call ARs frequently to ask them if they have decided on a community placement, even in situations where the ARs have told them they continue to choose a Training Center placement and have asked them to stop calling for that purpose. The DBHDS has put pressure on staff to encourage ARs to move their residents into the community, which undermines the ability of ARs to trust staff to provide honest analyses of the ability to move individuals into the community successfully. Several people have been told by Training Center employees that they had better move their residents while there are still good placements, in violation of the Agreement s requirement that no one must move until appropriate supports are in place in the community. The failure to make necessary safety code renovations and laying off staff jeopardizes the health, wellbeing and quality of life of Training Center residents. Presenting incomplete and flawed information to the General Assembly has discouraged it from playing the role anticipated in the Settlement Agreement and could lead to costly mistakes in policy for serving those with Intellectual or Developmental Disabilities: Your letter to all members of the General Assembly on January 26, 2012, the day the agreement was signed, told them the Federal Government has intervened and required Virginia to accelerate our efforts (towards a system of community-based care). The letter went on to provide a specific timeframe for closure of four of Virginia s Training Centers. Further, it stated that Virginia is required to provide a plan to the Chairmen of the House of Delegates Appropriations and Senate Finance Committees, without mentioning the Agreement s requirement that the plan be developed in consultation with the identified Chairmen. The letter also did not mention that the Agreement calls only for the submission of a plan, 3
leaving the General Assembly free to implement it or not, and does not require closure of any Training Center. As a result of these misleading statements, most members believed and some still believe today that they had no choice but to agree to closures. The DBHDS has publicized cost conclusions that claim significant savings from moving people into the community that have not been supported by information to address subsequent analyses showing that the community costs are grossly understated and key data have not been disclosed if even considered. Among other key failures, DBHDS figures place undue reliance on the current costs of care for the less severely disabled individuals who have already moved rather than on the higher costs for those who remain in the Centers and do not include costs that would be shifted to other state agencies costs that the citizens of the Commonwealth would still have to bear. Such cost shifting is not cost savings. Case Managers and DBHDS licensing specialists are unable to fulfill their oversight obligations under the Settlement Agreement due to inadequate staffing, even at this early stage of implementation, and case managers are even attempting to renegotiate oversight terms with the DOJ. The DBHDS refuses to survey the ARs of the Training Centers to determine whether they would prefer to remain in their present Centers or move into the local community. If a significant percentage of the over 800 residents of Centers wish to remain where they are, this would suggest that the Commonwealth should alter its closure plan, to respect AR choice. The unwillingness of the DBHDS to consider and cost regional plans to rightsize local Training Centers as part of a strategy to increase community options has denied the ARs and the General Assembly other options that might be more cost effective and better meet the needs of the residents. At least one of these plans was developed in consultation with all interested parties, including local providers and the local Arc. In general, the Commonwealth s approach of presenting members of the General Assembly and the parents and relatives of the residents of the Training Centers with a fait accompli of Training Center closures circumvents engaging in a serious dialogue about their wishes and the costs and implications of closures for both them and people on the urgent waiting list. We, the undersigned heads of the family groups at the four Training Centers scheduled for closure request that you take the following actions to remedy these violations of our rights to make free, uncoerced choices: 1. Immediately stop all efforts to coerce ARs into accepting community placements for their residents. 2. Make sure all assessment documents accurately reflect resident needs. 3. Make sure ARs are informed in all communications about placement options of their legal right to make an informed choice of residences, including the option to continue to receive care in a Training Center. 4
4. Qualify the current closure schedule to establish a policy of adequate preparation of the community before closing a Training Center, allowing extensions of time if the community is not ready to properly serve Training Center residents with complex needs. 5. Prevent any administratively-driven transfer of a Training Center resident out of the Training Center when the community is not ready to provide necessary supports. 6. Immediately conduct an independent survey of all ARs to determine whether they wish for their residents to remain in their Training Center or another or move into the local community. If a significant number of ARs elect for their residents to remain where they are, consider appropriate and cost-effective adjustments to the closure plan, including the option of retaining each such Training Center in a right-sized footprint. 7. Secure an independent analysis of the DBHDS cost figures and those presented by other sources and require a presentation of the findings to you, the General Assembly and all interested parties within 6 months. This approach is the only means of obtaining reliable cost data upon which the Commonwealth can make informed budget decisions, given the current fragmentation of the data sets and distortions arising from ideological accounting. We believe that respecting the rights of the ARs to make free choices is not only the legally correct thing to do but also the morally correct one, as it will result in better living arrangements for the residents of the Training Centers. Moreover, given the decades-long implications of the decisions we are now making, a few months of effort to obtain better data should repay the effort many times over. To responsibly protect lives and obtain the benefits from the Settlement Agreement, a policy shift from arbitrary administrative scheduling to one of acting when quality community supports are in place would be more reasonable and would yield much better results for our most vulnerable citizens. We stand ready to work with you on this vital matter and with all interested parties to help devise the best possible plan to implement the Settlement Agreement to improve living options for all people in Virginia with intellectual disabilities. Sincerely, Jane Anthony, Co-President Parents and Associates, NVTC (703) 860-8652 janthonyjane@comcast.net Judith Korf, Co-President (571) 201-8428 r3n39ad3@gmail.com Jane Powell, President CVTC Families and Friends (804) 262-1548 pashabean@verizon.net Lorraine Koury, Treasurer Parents Organization of SVTC (703) 352-9432 lmkoury@verizon.net Wanda Robinson, President Parent Advocacy & Advisory Council of Southwest VA (276) 236-2122 theredhead@embarqmail.com 5
cc: The Honorable John A. Gibney, Jr., U.S. District Court for the Eastern District of Virginia Donald J. Fletcher, Independent Reviewer Benjamin O. Tayloe, Jr., Civil Rights Division, U.S. Department of Justice Aaron B. Zisser, Civil Rights Division, U.S. Department of Justice Kyle Smiddie, Civil Rights Division, U.S. Department of Justice William A. Hazel, Jr., Secretary, Health and Human Resources, Virginia James W. Stewart, III, Commissioner, Virginia Department of Behavioral Health and here we Developmental Services Heidi R. Dix, Office of the Settlement Agreement Executive Advisor, Virginia Department we of Behavioral Health and Developmental Services 6