I. Introduction. The purpose of this report is to present the input gathered from a series of focus group meetings of stakeholders in the Philadelphia Mental Retardation System concerning the organization of registration and supports coordination services. Eleven meetings were held during September and October 2001: five with family members in different areas of the city, one with the consumer organization, Speaking for Ourselves, two with the Philadelphia Coalition of Community MH/MR Centers, one with the Philadelphia Alliance of Specialized MH/MR agencies, one with the staff of Philadelphia MRS and one with representatives of specialized case management services at Hall Mercer, PATH and Child Link.

The meetings were all conducted using the same format. Attendees were asked to review a one page description of the process and then the facilitators categorized the comments into one of the five issues identified in that handout, along with a sixth category for "other issues". The groups varied in knowledge about the "transformation process" and new requirements for registration and supports coordination, including the DPW requirement that these functions be separated from providers of service – the conflict free requirement. While the meetings did not specifically focus on the conflict free requirement, individuals familiar with it took this opportunity to express their opinions.

Not surprisingly, current BSU providers and some family members are quite supportive of the existing BSU based case management system. They feel that problems with the current system are related to the lack of resources, not affiliation with providers. They recommend that MRS oppose the conflict free requirement. There was also significant support for separation of these functions from providers of MR services. Consumers, independent providers and some family members believe that independence is important so that the supports coordinators see themselves as working for the family and the consumer (i.e. as true advocates).

While attendance at the meetings varied, overall we believe that we reached a broadly representative group of organizations and individuals interested in and/or affected by how Philadelphia MRS proceeds in this area. A copy of the handout and a list of meetings with number of attendees are attached to this report.

This report is organized to present first a brief summary of the major issues raised at the meetings which we also believe are critical elements in the redesign of registration and supports coordination. Then we present a discussion of each of the issues, designed to give Philadelphia MRS a flavor for the comments. Finally, we list issues we feel must be addressed as Philadelphia MRS transitions to a new structure for registration and supports coordination.

II. Major Issues

1. Neighborhood Base. There is overwhelming support for local access points for the community mental retardation system. Even if registration and supports coordination functions are consolidated in fewer agencies, there is a desire for at least as many access points as are available under the current system.
   
2. Separate registration functions from supports coordination functions. There is general support for a separation of the registration functions from the ongoing supports coordination functions. The need for a standardized, consumer/family/provider friendly system for establishing eligibility for services was repeated in many meetings. Once eligibility is established, this information should follow the individual and family throughout the system.

3. Standardization and simplification of structures, policies and procedures. This was a major theme in all the meetings. Even those who were not supportive of reorganization recognized the need for a simpler structure, standardized practices and consistent reliable information for consumers, families, and providers.

4. Recruitment and Retention. There is general understanding that the system cannot work unless there are sufficient numbers of well-qualified professionals who are competent, caring and committed to the values of Everyday Lives. Suggestions for accomplishing this objective include better pay, more reasonable caseloads and comprehensive, standardized training.

5. Caring relationship between supports coordinator and consumer/family. In addition to competence, many meetings raised the importance of a caring relationship between the supports coordinator and the consumer/family. Continuity was seen as important. At the same time, people recognized that specialty caseloads could enable more responsive supports coordination.

6. Consumer and Family Input. There was considerable support for the continuation of structures for consumer and family input in the design of the system. Structures established under FDSS and the Self Determination project were referenced.
   
7. Choice. Over and over the need for the consumer and family to have choice of supports coordination entities, providers and support services was emphasized. Critical to this is the need for comprehensive information to be available to supports coordinators, consumers and families and for resource development activities to increase the number of choices available.

8. Services to Children. There was general support for specialized supports coordination for children. There was a call for improved coordination with other child serving organizations, especially the schools.

9. Technology. There is general recognition that improved technology will be critical to the success of a reorganized registration/supports coordination system. Entities and individuals must be competent and comfortable with the technology requirements of a new system.

10. Role of MRS. MRS must be prepared to take a leadership role in the system. Better systems for communication and accountability, both internally and externally, will be critical to the success of any new system of registration and supports coordination.
    

III. Discussion

1. Neighborhood based access. The groups were almost unanimous in recommending that MRS retain a neighborhood base for access to MR services and for delivery of supports coordination. Reasons for this recommendation included convenience for families and consumers, likelihood that neighborhood based staff will know the local resources well, likelihood that neighborhood based staff will reflect the culture of the communities served and will be sensitive to cultural issues. There was also a sense that neighborhood based services will attract local residents as staff members, thus increasing the likelihood that the service will be responsive to local needs and interests. Some people felt that responsiveness to diversity in the neighborhoods was a strength of the current system, while others felt it needed to be improved. In general, it was felt that it is not reasonable to expect supports coordinators to know about resources all over the city.
   
2. Separation of registration functions from supports coordination functions. There was general support for making a distinction between the process of registering for mental retardation services and the delivery of supports coordination. BSU representatives felt that the blending of these two functions has led to overload on the case managers, with an increasing emphasis on paperwork rather than on delivery of support services to consumers and families.

It seemed relatively easy for people to conceptualize the registration process as a centralized one (albeit with local access) that follows very standardized procedures: standard information collected from consumers/families and standard information given to consumers/families. Included in this recommendation is the expectation that information will follow the person across the city. Once a person is registered, they should remain "open" in the system no matter where they live in the city and their "records" should follow them. Several groups expressed the hope that families will no longer have to tell their stories over and over!

The information requirements for establishing eligibility for MR services should be the same everywhere in the city. Several groups cited the need for an evaluation system for individuals who do not have the required documentation to establish mental retardation and, therefore, eligibility for services. The current process is viewed as too disorganized and burdensome for families who may be left on their own to try to obtain evaluations or documentation, often at significant cost. There should be a family friendly system for evaluation that is available at no cost to the family or consumer. At least one group suggested that MRS work with the special education system so that the educational assessments are consistent with the requirements to establish eligibility for MR services.

3. Standardization and simplification of structures, policies and procedures. Overall, there was support for uniformity in the processes for registration for MR services and delivery of supports coordination. In general, people felt there were too many differences across the catchment areas with individuals having very different experiences in the process.

Several groups referenced the need for the entities which provide supports coordination to have a clear sense of mission and values. A commitment to the individuals and families to be served in the spirit of Everyday Lives must permeate the organization. This was seen as critical to insuring quality and consistency across the system.

People also spoke of the need for fairness. The system should respond to people based on their needs, not to the "squeaky wheel". While people recognize that this will continue to happen, there is concern that individuals who are not assertive about their needs may be left behind on waiting lists! Linked to this ideal was the notion that the system should also be honest: don’t promise something that can’t be delivered! What is written in plans should be implemented.

In a variety of ways, people talked about the need to simplify the system. Families would like clear and direct information. People in a variety of roles raised problems with obtaining consistent, reliable information – from the BSUs and from the County Office. The process of establishing waiver eligibility should not take place in times of crisis. There is confusion about the roles of supports coordinators vs. service brokers vs. personal support workers. People in the Person Family Directed Supports Waiver have two "case managers", which results in confusion and redundancy. People in ICF/MRs receive relatively little supports coordination. Some MRS procedures are perceived as overly complicated and make life more difficult for supports coordinators, consumers and families.

4. Recruitment and Retention. Most of the meetings cited turnover among supports coordinators as a serious issue impeding the development of quality supports coordination services. Strategies for addressing turnover included raising salaries, lowering caseloads, creating more realistic expectations, and initiating a variety of quality enhancement activities.

The size of the caseloads, particularly with the BSU case managers, is seen as a major problem. Most people believe it is impossible for a single supports coordinator to deliver quality supports coordination services to a large number of people. Recommendations for a maximum caseload varied, with some suggesting 25 and others up to 50. Unless caseloads are reasonable, no amount of restructuring will improve the quality of the service.

Several groups pointed to the low salaries in the Base Service Units and the variation in compensation across the city as a major problem. Competition among the various providers of case management – the BSUs, MRS, ChildLink, and the Hall Mercer and PATH specialized units – is exacerbated because of the differences in salary offered. It is generally recommended that salaries be relatively the same across all entities – and significantly higher. It is also recognized that there are issues endemic to the human services labor force that lead to turnover.

People are very concerned about the inconsistency across the city in the competence and knowledge of supports coordinators. In general, people believe that the service of supports coordination in the "transformed system" will require more highly trained professionals than the current system does. People are concerned that there are many wonderful people working in the system who should be encouraged to stay. Excellent staff who may not have the requisite educational background should be grandfathered into any new system. (Mostly left unspoken was the opposite: there are individuals in the system who should not be doing this work!)

Several groups talked about the need for standardized training, perhaps a core curriculum, which could be required of all supports coordinators. Current requirements at Child Link and for Mental Health Intensive Case Management/Resource Coordination were offered as examples. Establishment of minimum experience and training requirements was also recommended, subject to the caveat about grandfathering in existing staff noted above.

Other strategies for improving the quality of the service included better supervision – establishing a ratio of supervisors to supports coordinators that is reasonable to allow for mentoring – and making sure that supervisors do not also carry caseloads. More opportunities for networking among supports coordinators and with other professionals was also seen as a way to enhance the competence of supports coordinators.

The general thrust of much of these discussions was that the new system will require supports coordinators who are well-trained, competent professionals and full members of the team. In order for them to be successful, they will need the training, experience and support to assume this role.

5. Caring Relationships. Another theme running through the discussion of supports coordinators was the need for individuals who really know and care about the consumers and families they support. Many family members were very pleased with the services they receive from the BSU case mangers, in spite of the problems with turnover. Consumers are looking for someone who will care about them and help them solve problems. The quality of the relationship between the supports coordinator and the consumer/family is viewed as one of the most important elements of good supports coordination.

The discussion of the importance of the relationship led to consideration of whether supports coordination should be organized around specialty caseloads, based on, for example, co-occurring issues such as medical complications or behavioral issues, involvement with criminal justice, or age. At some level, it does not seem reasonable to expect a supports coordinator to know about all the different resources/systems that might be appropriate for a consumer or family over time. On the other hand, with the possible exception of children, specialized caseloads were seen as exacerbating discontinuity for the family. One suggestion was to establish positions of resource developers/specialists who would be available to consult with supports coordinators. These individuals would not carry caseloads but would act as resources to the supports coordinators.

6. Importance of consumer and family input in system development/ monitoring. Many of the meetings referenced the value of the structures for consumer and family outreach, networking, support and input that have already been developed, primarily as a result of the Family Driven Family Support Projects and the Self Determination Project. However the system for registration and supports coordination is changed, there should continue to be structures for such input/oversight/etc. Suggestions included advisory committees, membership on the Board of any new entity, and development of a quality oversight committee.
   
7. Enhancement of choice for consumers and families. There was strong support for the principle that consumers and families should have choice of providers, of types of services and supports, and of supports coordination entities. This issue was often combined with the ideas that services need to be flexible and that families need to be supported in identifying natural supports and generic services in their communities. Implementing such a system will require that information about various services, providers and other resources is readily available to families and to supports coordinators. The Family Driven Support Services Program (FDSS) was often cited as a model.

In discussing the importance of choice, some meetings expressed concern that the system is overwhelmed: there are simply not enough resources for consumers and their families. More effort needs to go into developing new resources, both specialized and generic. Several meetings raised the problem of services for individuals with co-occurring mental illness. Resources for this group were seen as sorely lacking.

8. Specific Issues with Reference to Children. In spite of the potential for discontinuity, there was general support for a specialized approach to serving young children and their families. There should be a cadre of supports coordinators who are trained to work with children and families, and familiar with all the child serving systems.

A major theme throughout all the meetings was the need for vastly improved relationships between the mental retardation system and the schools. Good and bad experiences were recounted, but the bottom line is that the supports coordinators for children should have a thorough understanding of school policy, should support the family through the process and should be available to advocate, especially during thettransition from school to adult life. Entities providing supports coordination should develop relationships with neighborhood schools.

In addition to the schools, supports coordinators for children need to have a good understanding and relationship with other systems such as Philadelphia Department of Human Services, the Behavioral Health System and the general medical community. Frequent questions were raised about the role of BHS and the services available for children with both mental retardation and behavioral/emotional issues. The general sense is that there are not sufficient resources for this group. Concerns were expressed about the transition for children in the custody of DHS from DHS funding/case management to MRS funding/case management. The general sense is that it should be smoother. Finally, there was a call to improve the connection between ChildLink and MRS Registration/Supports Coordination.

9. Technology. Several groups raised concerns that if the new system is to work, supports coordinators will have to have ready access to technology – laptops, e-mail, voice mail, etc. People are concerned that the technology requirements not drive the system, while recognizing that the transformation process is based on significantly increased use of web-based technology. Providers more familiar with the plans raised concerns about confidentiality of a web-based system, compliance with HIPAA standards on security and privacy, monitoring the accuracy of data entry and the interface of the statewide system with provider systems.

It is clear the new system will require a major investment in technology. There is considerable variation across the current system in capacity, experience and comfort with technology. This must be addressed through training and technical assistance to agencies and staff. Both the State Office of Mental Retardation and Philadelphia MRS must make a commitment to ongoing funding and support in this area.

10. Role of MRS. Concerns were expressed that MRS itself needs to streamline, standardize and develop more accountability both internally and externally. Many of the criticisms of the current registration/supports coordination process were repeated about the MRS office. People report not getting answers to questions, getting different answers from different people, duplication of requests for information, lack of follow through on agreed upon activities. There was a recognition that the dispersal of staff has contributed to this problem. However, MRS needs to be able to assume a consistent leadership position as the transformation process goes forward.
    

IV. Specific Issues related to transition to a new system:

1. Feedback to interested parties. At almost every meeting, people were interested in knowing what the next steps would be. MRS should be mindful of the need to continue to involve all the stakeholders and keep them informed as the process goes forward. Information should be provided in simple, direct language and in a timely fashion. In particular, MRS should reach out and support families to minimize disruption as the process unfolds. At least one group suggested developing a structure for consumer/family input in the planning for any changes in the system.
   
2. Conceptualize the system without regard to fiscal constraints. Concern was expressed that MRS approach this process first from the point of view of the ideal system. Fiscal constraints should not be allowed to interfere with the design process. Rather, they should be addressed after there is agreement on the characteristics of the new system.

3. Address the "middle class" orientation of the system. Concern was expressed that the transformation process assumes a level of computer access and literacy that is problematic in Philadelphia. There is an assumption that consumers and families have a fairly sophisticated ability to evaluate information and make choices. Attention should be paid to insuring that individuals without computer access/competence/comfort have access to support and information to navigate the system.
   
4. Concern for non-waiver people. Many of the groups raised concerns about the people who will not qualify for the waiver, refuse to participate in the waiver, or fail to follow through with waiver processes. These concerns were often linked to concern about the continuation of Family Driven Support Services. People view this program as one that is important to retain because of its flexibility and widely recognized value to families who are waiting for other services.

5. Concern for people who are "in flux". Concern was expressed that people who are in the process of changing something in their plan/program not get lost in the transition. This would particularly include people who are on emergency lists and ready to enter new services

6. Respect the current BSU case managers. Several groups raised concerns about the impact of this process on the BSU case managers as people. There is recognition that many of them have been committed, hardworking individuals who should be supported as this process goes forward. Attention should be paid to continuity in employment benefits, if possible, and other strategies to encourage the good people to stay in the system
   

V. Conclusion. This report includes only those issues that were raised in the focus groups and which, in our opinion, constitute the major areas needing attention as MRS moves forward on the redesign of the Registration and Supports Coordination System. These issues have been presented in fairly general terms, with some illustrative details. More specific information obtained from the groups can be incorporated into future activities. In addition, other issues, not directly related to this process, were raised and these can be shared with MRS at another time. Finally, we do not suggest that every issue that needs to be addressed has been identified here. Our mission was to gather input. While we have made judgments about the presentation of those issues, we have not independently identified areas for consideration.

In closing, we would like to thank all those who participated in the focus groups and who provided written comments. We were impressed with the level of interest and commitment in assisting the Philadelphia mental retardation system to become more accountable and responsive to the consumers and families it supports and serves.

Attachment: Handout for Focus Group Meetings

Philadelphia Mental Retardation Services (MRS)

Registration and Supports Coordination Reorganization Project

Philadelphia MRS is undertaking a process to review and modify the structure for the provision of Intake (Registration) and Case Management (Supports Coordination). A change is needed because funding for mental retardation services now comes primarily through the Federal Waiver Programs. The increase in Waiver funding provides significant opportunities to expand services to persons who are underserved and to those on waiting lists. However, it requires strict accountability for determining eligibility, providing procedural safeguards, planning, coordinating and monitoring of services.

In order to participate fully in these new opportunities, Philadelphia MRS needs a system for Registration and Supports Coordination that is characterized by:

• Accessibility - geographically, culturally and programmatically
• Accountability to funders and to consumers and families
• Consistency in practices across the city
• Efficiency in the use of financial resources
• Promotion of consumer and family choice of services, supports, and providers
• Involvement of consumers and families in individual and system planning.

Currently, individuals and their families make application for services through one of the 12 Base Service Units. The Base Service Units provide Supports Coordination for individuals from their catchment area who are living with their family or independently. Hall Mercer provides city-wide Supports Coordination for individuals in residential services and PATH provides city-wide Supports Coordination for the conversion of individuals in vocational services to the Person/Family Directed Support Waiver. In order to meet the above stated goals, Philadelphia MRS will reorganize the system to reduce the number of entities providing the registration and supports coordination functions.

The first step in the reorganization plan is this process of obtaining input from all sectors of the mental retardation system: consumers, their families, providers and advocates. Philadelphia MRS is particularly interested in input in the following areas:

• What characteristics of the current system should be preserved?
• What characteristics of the current system should be changed?
• Are there any specific issues related to delivery of Supports Coordination to children vs adults?
• What outcomes should be expected of Supports Coordination?
• What issues need to be considered in the transition to a new system?

Attachment: Focus Group Attendance

Date Group Attendance

September 9 Philadelphia Alliance of Specialized MH/MR Agencies 9

September 17 Speaking for Ourselves 7

September 19 Philadelphia Coalition of MH/MR Centers (Executive
Directors and Mental Retardation Directors) 19

September 25 Philadelphia Coalition of MH/MR Centers
(Case Management Directors/Supervisors/Case Managers) 26

October 4 Center City Families (Vision for Equality) 21

October 4 North Philadelphia Families (Temple) 3

October 10 Germantown/Mount Airy Families (NW Library) 11

October 15 Philadelphia MRS Staff 17

October 16 West Philadelphia Families (West Phila. YMCA) 14

October 16 Northeast Families (JCC Klein Branch) 23

October 30 Specialized Case Management Units (ChildLink, Hall Mercer, PATH) 14

TOTAL ATTENDANCE 164 (72 consumers/family members)