XXIV. Willowbrook CCO/HH Guidance

The Willowbrook Permanent Injunction (PI), which was signed in 1993 replaced the 1972 Willowbrook Consent Decree. The PI outlines the court ordered entitlements for all members of the Willowbrook Class. OPWDD is responsible for ensuring certain community-based integrated services are provided in the least restrictive setting and regardless of any Willowbrook Class Member’s inability or failure to pay a fee or a Willowbrook class member’s ineligibility for Medicaid. Information on Willowbrook requirements and the Willowbrook class action litigation, including New York State’s expectations for delivery of services to Willowbrook class members can be found on the OPWDD Willowbrook page.

If a class member is not able to or does not choose to advocate on their own behalf, they are to have a correspondent also referred to as an active representative as defined in the PI. The Willowbrook PI provides for active representation as follows:

1. Appendix H defines active representation for class members as participation with the Care Planning Team in planning and evaluating the individual development plan and/or visits between the correspondent and the individual class member at least annually. Merely signing consent forms sent through the mail or receiving phone calls initiated by facility staff with no other involvement does not constitute active representation.
2. Paragraph 7 of the PI states the Consumer Advisory Board (CAB) provides necessary and appropriate representation and advocacy services on an individual basis for all Willowbrook class members who do not have correspondents, as long as any class member lives. CAB can also act as co-representative or advocate for class members who do not have a correspondent. Therefore, for class members who do not self-advocate, the correspondent would be their parent, involved family member, or the CAB. 

Further information can be found in the PI under paragraph 7 and Appendix H. Additionally, Active Representation Training is offered multiple times per year and hosted by OPWDD. Registration is in SLMS.

There are three types of Care Management services (listed below) available to Willowbrook class members. Care Managers shall fulfill the role as defined in Appendix I of the Willowbrook Permanent Injunction regardless of the type of care management service provided. 

1. Comprehensive Care Management
2. Non-Medicaid Care Management:
   • Willowbrook Case Services for those residing in an Intermediate Care Facility for Individuals with Intellectual or Developmental Disabilities (ICF/IID).
     • If a class member is permanently in an ICF/IDD, the CCO Care Manager is responsible for adhering to appendix I. The development of the Comprehensive Functional Assessment (CFA) is completed by the ICF. The CCO Care Manager should be involved in the development and review of the CFA and receive a copy of the plan and any updates. Care Managers do not have to complete the DDP2 and LCED for Willowbrook class members in ICFs. Although the DDP2 and LCED is required for those in an ICF, the ICF staff complete the DDP2, LCED, and the ICF Comprehensive Functional Assessment
     • If a class member is temporarily in an ICF the CCO/HH Care Manager remains responsible for monitoring and updating the Life Plan.
3. Willowbrook Service Coordination for those residing in a Nursing Home or other non-qualifying setting
   • If a class member is permanently living in a nursing home or other non-qualifying setting, the CCO/HH Care Manager is responsible for adhering to appendix I. The service setting is responsible for the development of the care plan. The Care Manager should be involved in the development and review of the care plan and receive a copy of the plan and any updates. Care Managers do not have to complete a DDP2 for those permanently living in a nursing home or other ineligible OPWDD settings.
   • If a class member is temporarily in a nursing home or other non-qualifying setting the CCO/HH Care Manager remains responsible for monitoring and updating the Life Plan.

For more information see Non-Medicaid Care Management.

Care Managers serving members of the Willowbrook class either through CCO/HH or Non-Medicaid care management are critical to successful implementation of the Willowbrook entitlements and shall engage in advocacy to protect and uphold the rights and entitlements of the class members in all spheres of the Class Member’s life. These rights and entitlements are established by Federal law and regulations and by Class Membership under the Willowbrook Permanent Injunction. Responsibilities specific to Care Management functions can be found in Appendix I of the PI.

When a Willowbrook Class Member enrolls or disenrolls regardless of the care management service provided by the CCO/HH (HH or state paid), CCO/HHs must establish communications, as necessary, to comply with the requirements of the PI including that all Willowbrook representatives will receive copies of all notices or other communications.

In addition, CCO/HHs are required to adhere to the PI requirements, including that all notices and communications regarding Willowbrook Class Members will be shared with CAB. 

Care Managers who have even one (1) member of the Willowbrook class on their caseload must have an equivalent of no more than a 1:20 ratio. Members who reside in an ICF are weighted as .5, and when calculating caseload size these members receive Willowbrook Case Services (WCS) from the Care Manager. For people living in any other living environment, they are weighted as 1. The “Model 1: Tier 4 Caseload” would be used for Care Managers who have a member of the Willowbrook class on their caseload.  

CCO/HHs shall deliver Health Home core services in a manner that comports with the following provisions:

1. Care Managers shall be a Qualified Intellectual Developmental Professional (QIDP) as that term currently is defined in federal rules 42 CFR 483.430
2. Care Managers shall lead the Care Planning Team.
3. A Care Manager’s caseload shall be no greater than a 1:20 ratio.
4. Care Managers shall have at least a monthly face-to-face contact with each Willowbrook class member on the Care Manager’s caseload.
5. The Care Manager shall prepare monthly case notes that conform with Care Management requirements and reflect visits and progress. Face-to-face contacts must be made at either the residence or day service location. There is discretion as to the location, but a class member must be seen at both locations each three-month quarter of a calendar year.
6. Care Managers shall participate in Willowbrook-specific Care Management Training provided by OPWDD, as well as all other required Care Coordination Training (more information below).
7. Care Managers shall make every effort to ensure that all appropriate parties, including the class member, the correspondent, the Mental Hygiene Legal Services (MHLS) and the CAB are invited and in attendance at all care planning meetings. The care planning team must be given timely and reasonable notice (10 days) of the planned date for the meeting and must be offered the opportunity to participate. The Care Manager must provide this notice and flexible dates when there are conflicts.
8. Care Managers shall ensure that no Willowbrook class member will be subjected to any aversive conditioning and/or behavioral research or experimentation without approval as specified under Behavior Modification (paragraph 13 in Appendix J) in the Willowbrook Permanent Injunction (see Behavior Modification, paragraph 13 in Appendix J of the PI). 

The Care Management Activity Plan is required for all class members. Care Managers must prepare sections two (2) and three (3) of the Life Plan to comport with the requirements of a Care Manager Activity Plan (CMAP) form. The CMAP must be reviewed and updated at least every six months. New activities that the person with developmental disabilities would like to occur may be added at any time. This review should be documented in the Care Management notes.

The CMAP must:

1. be integrated into the person’s Life Plan or the CMAP form;
2. describe certain short-term care management activities that will effectuate the goals that are most important to the person.
3. track activities to achieve valued outcomes or other objectives 

Care Managers must prepare the “Care Manager Observation Report” (CMOR). The CMOR is required for Willowbrook Class Members who receive Care Management and live in an OPWDD certified residence, including Family Care homes, IRAs, SOICFs, VOICFs, CRs.

1. The CMOR is NOT required for Willowbrook class members who live in nursing facilities or non-certified OPWDD residences.
2. The CMOR must be completed anytime the Care Manager observes a significant issue in the home related to health, safety, or the environment.
3. The CMOR is required to be completed by the Care Manager at least two times in a calendar year even if no serious problem is found. The CMOR should not be completed in consecutive calendar quarters. Care Managers should establish either a 1^st and 3^rd, or 2^nd and 4^th quarter cycle for completing the mandatory CMOR.
4. Care Managers will participate in a collaborative CMOR visit with the local CAB program associate once annually when CAB is involved on behalf of the class member.
5. Care Manager should always have a form when they make a visit to a home where a CMOR is required.  

CCO/HH will identify the person’s status as a Willowbrook class member in its Electronic Health Record (EHR) system.

The Active Representation status for all Willowbrook class members must be reflected in the EHR. The Care Manager will ensure that Active Representation is being reviewed on an ongoing basis including at Plan review meetings and must make referrals to the CAB for full or co representation when necessary. 

A copy of the Willowbrook class member’s Notice of Rights will be retained in the class member’s record in the EHR. This Notice of Rights will be provided to all service providers that deliver services to the Willowbrook class member.

The names and contact information for the parties involved in the Willowbrook case (Plaintiff’s Counsel for the Willowbrook Class: the New York Civil Liberties Union and New York Lawyers for Public Interest, the Executive Director of the Consumer Advisory Board (CAB), and the Independent Evaluator in the case of Willowbrook class members who remain as noted in Attachment 1 of the PI, in addition the OPWDD Administrative Liaison, the OPWDD Office of Counsel, and the OPWDD Statewide Willowbrook Liaison), shall be identified in the EHR.

The appropriate representatives shall receive copies of all notices or other communications, including but not limited to due process notices, incident reports and death notices, as dictated by the Willowbrook Permanent Injunction and OPWDD guidance and Administrative Directives on these matters.

The reporting guidelines (also known as the cheat sheets) for Willowbrook Residential Notifications and Required Willowbrook Incident Notifications can be found at:

• Guidelines for Willowbrook Residential Notification
• Guidelines for Willowbrook Incident Reporting 

CCO/HHs, regardless of the care management service provided (HH or state paid) to the class member, are required to lead, from start to finish, all Due Process actions as outlined within the PI as well as all Community Placement Procedures.

Additionally, the Guidelines for Willowbrook Residential Notification (green cheat sheet) is a reference tool for CCO/HHs to utilize and ensure timely reporting of all situations as outlined on the cheat sheet. 

CCO/HH services provided to Willowbrook class members must comply with requirements for reporting, investigation, implementation of preventative actions, and other needed follow-up on incidents which pose a risk to the health and safety of the class member as per the PI, and as described in CCO/HH policy guidance. This includes provision of required Willowbrook Incident Notifications. The required Willowbrook Incident Notifications cheat sheet can be accessed here.  

All CCO/HHs who serve a member of the Willowbrook class must ensure that Care Manager Supervisors and Care Managers providing care management services to Willowbrook class members, regardless of funding stream (Medicaid or state paid), must adhere to all training obligations and be knowledgeable of all obligations under the PI.

The “Overview of Services for Willowbrook Class Members” is hosted by OPWDD and MUST be taken by Care Manager Supervisors and Care Managers prior to serving a class member or supervising a Care Manager with a class member on their caseload. OPWDD highly recommends it be taken annually thereafter. 

The “Overview of Services for Willowbrook Class Members” is offered multiple times per year and registration can be found on OPWDDs Statewide Learning Management System (SLMS). Additionally, throughout the year, there are trainings offered that provide detailed training and information on targeted topics specific to supporting class members. It is best practice for Care Manager Supervisors and Care Managers to attend at least annually.

Note, if it is determined that a Care Manager Supervisor or Care Manager has demonstrated a need for re-training, they will be required to do so. If a Care Manager Supervisor or Care Manager need this training before the scheduled statewide training the CCO can work with the Statewide Willowbrook Liaison and/or local OPWDD Regional Office Willowbrook Liaison to schedule.