Table of Contents
Preface
Brief Overview of the Quality Assurance System
Introduction
Recruitment of Visitors
Training
Scheduling and Coordination
Conversations with Individuals and Significant Others and Conversation Summaries
Feedback and Follow-Up
Concluding Thoughts
In a memorandum to six regional center directors, dated January 13, 1997, Eileen Cassidy, Deputy Director, Community Services Division, Department of Developmental Services, requested an interim visit by contractor Allen, Shea and Associates to gather some preliminary information regarding the life quality assessment process. These six regional centers were selected as representative of the different approaches to implementation (e.g., completed by the service coordinators, contracted out). These visits also provided the contractor with an opportunity to refine a workplan for a more complete evaluation of approaches at all twenty-one regional centers in late summer of 1997.
Through the generous cooperation of regional center staff and contractors, we were able to spend time with them as well as with visitors and people who have been visited. While this was not as an extensive look as we will make in the summer, we were able to find out a lot about how the process is working. The results of our visits are found in this preliminary review. It includes: (1) a brief overview of the quality assurance system for community-based, developmental services in California; (2) a summary of a recent survey (September, 1996) regarding regional center (all twenty-one) plans for implementation of the life quality assessment (titled Regional Center Survey: Life Quality Assessment, Monitoring, and Service Quality Enhancement); as well as (3) a compilation of observations and notes on best practices in six regional centers.
The report has been written to reflect the general themes of the life quality assessment process. That is, the recruitment of visitors, training, scheduling and coordination, conversations with individuals and significant others, conversation summaries, feedback to individuals, service coordinators and others, and follow-up.
We would like to thank everyone who accommodated our visits around the state. You made us feel at home and provided us with a wealth of stimulating information. (For a copy of the bound version, please call or write Anne Smith at (916) 654-2217.
Bill Allen
John Shea
Figure 1
California's
Quality Assurance System for Developmental Services
Introduction. The life quality assessment is one part of the quality assurance system (see Figure 1) used by each of the twenty one regional centers to assure quality services for people they support. The Department of Developmental Services describes the overall system below.
"As part of its continuing commitment to providing quality services to individuals with developmental disabilities, the Department of Developmental Services (Department) implemented a revised quality assurance (QA) system for both licensed and un-licensed community residential services and supports on July 1, 1996. This comprehensive QA system is designed to assure consumer's rights, health and well-being as well as identify opportunities for individuals to improve their life quality. The revised QA system includes continuation of the following regional center activities:
Individual Program Plan (IPP) Monitoring: Periodic review of services and supports to each individual to assure that services are being provided in accordance with the IPP and that the individual's health, living, and support needs are being met.
Program Monitoring: Regular review of facility or agency services to assure services are being provided in accordance with the program design or contract, and with all applicable statutes and regulations. Department review and follow-up on special incidents received from regional centers.
Corrective Actions and Sanctions: Application of corrective actions and imposition of sanctions in situations which constitute a potential risk to the consumer's health and safety, violation of rights, and failure to provide services as specified in the consumer's IPP, program design, applicable statute or regulation. Resulting actions may include a corrective action plan and/or emergency relocation of a consumer.
As an enhancement to these existing QA activities, the Department developed value-based life quality outcomes and a way to measure these outcomes based upon consumer and family satisfaction. These life quality outcomes focus on the individual and on the effects of services and supports for each individual. To that end, the following components were incorporated into the revised QA system:
Service Quality Enhancement: Increased emphasis on training and technical assistance to service providers. Service providers are given tools to conduct voluntary self-assessments to identify opportunities to increase their service excellence, thus enhancing overall service quality.
Outcome and Value-Based Assessment of Individual Life Quality: At least once every three years, completion of a life quality assessment in the areas of health and well-being, choice, relationships, lifestyle, rights, and satisfaction for all individuals receiving community residential services and supports. The assessments are completed by either regional center staff or independent contractors. Information gathered from those assessments is to be used in developing and reviewing each individual's IPP, and also summarized to identify overall training, technical assistance and resource development needs."
It is the last element of the quality assurance system that is the focus of this report. That is, the initial implementation of Looking at Life Quality in six regional centers.
CHOICE
1. Individuals identify their needs, wants, likes and dislikes.
2. Individuals make major life decisions.
3.Individuals make decisions regarding everyday matters.
4. Individuals have a major role in choosing the providers of their services and supports.
5. Individuals' services and supports change as wants, needs and preferences change.
RELATIONSHIPS
6. Individuals have friends and caring relationships.
7. Individuals build community supports which may include family, friends, service providers/professionals and other community members.
LIFESTYLE
8. Individuals are part of the mainstream of community life and live, work and play in integrated environments.
9. Individuals' lifestyles reflect their cultural preferences.
10. Individuals are independent and productive.
11.Individuals have stable living arrangements.
12. Individuals are comfortable where they live.
13. Children live in homes with families.
HEALTH and WELL-BEING
14. Individuals are safe.
15. Individuals have the best possible health.
16. Individuals know what to do in the event of threats to health, safety and well-being.
17. Individuals have access to needed health care.
RIGHTS
18. Individuals exercise rights and responsibilities.
19. Individuals are free from abuse, neglect and exploitation.
20. Individuals are treated with dignity and respect.
21. Individuals receive appropriate generic services and supports.
22. Individuals have advocates and/or access to advocacy services.
SATISFACTION
23. Individuals achieve personal goals.
24. Individuals are satisfied with services and supports.
25. Individuals are satisfied with their lives.
In order to look at the implementation of Looking at Life Quality in a systematic way, we have broken down the process into seven basic components (see Figure 2):
Recruitment of Visitors The development of a pool of paid or unpaid people used to collect information about life quality by contractors.
Training. Providing information and opportunities to practice facilitating a conversation and writing up a summary of the information collected.
Scheduling and Coordination. Identification of who is to be visited; locating individuals; and establishment of an agreed upon place and time for conversation(s) and/or observation(s).
Conversations with Individuals and Significant Others. Approaches to collecting information about life quality, including feedback on tools and processes.
Conversation Summaries. Writing a summary of the information collected during the conversation(s).
Feedback to Individuals, Service Coordinators and Others. Sharing the conversation summary with the individual and others as identified.
Follow-Up. Actions taken to provide additional information, resolve difficulties or change services and supports.
These are the major headings for the remainder of the report. Within each section, you will find our perspective on best practices (what we observed or noted as working well at the six regional centers we visited). Throughout the report, you will notice a number of insets which provide examples (altered to protect confidentiality) of actual information collected during life quality conversations as well as follow-up actions. At the end of the report, you will find our concluding thoughts.
Whether regional centers opted to complete all of the life quality assessments with staff or some portion of them with others (see Table 1 for a breakdown on implementation), there are a number of approaches for completing the assessments. They are completed by:
* Staff of the Quality Assurance Unit and additional volunteers when needed. Or, in some instances, new staff have been hired for this specific purpose.
* Service coordinators as a part of the individual planning process.
* Service coordinators outside of their usual work hours (primarily because of the size and rural nature of the area) and are reimbursed per assessment.
* A core group of service coordinators, paid visitors (e.g., graduate students), and volunteers (e.g., board members, parents, individuals served by the regional center, Best Buddies).
At least one regional center has successfully recruited and trained volunteers who have completed conversations and the life quality summary.
Twelve of the regional centers have contracted with others for all or a portion of the assessments. Again, a number of approaches have been noted:
* A single contractor for one regional center area.
* A single contractor for a number of regional centers.
* A number contractors within a regional center area.
Contractors typically have some background in developmental services (e.g., a former regional center director) and at least one has an university connection. One regional center has selected a contractor who also manages the total quality improvement element of its performance contract. Two regional centers have contracted with Area Boards to complete some or all of the assessments.
Several contractors intend to pay all visitors. Several others intend to recruit a core of visitors (paid) and volunteers (nonpaid). The number of visitors and/or volunteers will vary in size in relation to the numbers of assessments which much be completed in a given area. At this time, the size of the visitor/volunteer workforce ranges from three (full-time assessors) in a smaller geographic area to over fifty plus in an urban, multiple regional center area.
All regional centers have a plan for providing individuals a choice in the selection of a visitor. Some provide an array of options prior to the assessment (e.g., sending a list of trained volunteers, or a phone conversation and review of options) while others indicate that other visitors are available if requested at the start of the conversation. Individuals are also told that they can choose to end the conversation at any time and reschedule with the same or another visitor.
Of course, in regional centers which have decided to keep the work in-house, recruitment is not a concern. It is handled either by staff in a designated unit (e.g., Quality Assurance), or by service coordinators who complete the assessments with individuals they support. While workload might be an issue with service coordinators, representatives of the staff only regional center we visited did not express this concern. At least one service coordinator said that even though it took more time, it was value added to the planning process.
Among the three contractors we visited who are using paid visitors or volunteers, recruitment efforts are critical. According to the representatives of one of the contractors we interviewed, the primary criterion used in selecting visitors has been: "Is this person good at relating to individuals receiving services?" In their initial recruitment effort, they made a list of people they thought would be good, interested in this type of work and available. For example, people with previous regional center experience and parents who were known to them. (Note: Several mothers, but no fathers to date have been recruited. However, this follows the general demographics of visitors across all of the areas that we visited. That is, at present, they are mostly women.)
Additional recruitment has been accomplished through word of mouth (one contractor reported receiving about 5 inquiries per week in this way) and referral (e.g., regional center, another visitor). This method of recruitment has resulted primarily in visitors with some sort of relationship to the developmental service system (e.g., former service coordinators or other former regional center employees, relatives, parents, advocates). While the contractors we visited all had plans to recruit others (e.g., people with developmental disabilities, other community members) as volunteers or as paid visitors, it has not occurred to date.
In addition to those with parental or regional center backgrounds, visitors who have been recruited to date typically have relevant experience or expertise in human services (e.g., psychologists, independent living specialists, day program providers, job coaches). If visitors are currently employed within the service delivery system, contractors make sure that they are used in areas (geographic or programmatic) outside of where they work. None of the contractors have hired visitors who are currently employed by a regional center.
In areas where there is significant diversity in cultures and languages, the focus has been in recruiting visitors who can conduct the conversations in languages other than English. For example, one contractor currently reports the recruitment of 57 active visitors with the following ethnicity or race: 31 (54%) are White; 15 (26%) are African-American; 6 (11%) are Latino; and 5 (9%) are Asian. In terms of language, these visitors are currently fluent in Taiwanese, Vietnamese, Arabic, Korean, Armenian, Japanese, Cantonese, Spanish, Yiddish, Russian, Turkish, and American Sign Language. In addition, the contractor is looking for visitors who can communicate in Hungarian, Farsi, and several other languages.
Contractors noted that visitors might be attracted to the work for many different reasons: giving something back to the system; missing the people they once served; a way to earn some money, while pursuing an alternative career (e.g., art; music; writing; acting); doing something away from home (e.g., a mother); wanting to make a difference; wanting to see what community services look like these days; the association with former co-workers; and, wanting to be part of a group. All of the visitors we interviewed were excited about the work. None of the contractors indicated that recruitment of paid visitors was an issue (other than with retirees who do not want to be as involved as they thought). At this time, the focus is on on-going training and support.
Paid visitors are remunerated at anywhere from $9 to $20 per hour (depending on coordination or mentoring responsibilities) or $60 per assessment (including summary write-up). Some visitors schedule their own visits and some do not. Some visitors are reimbursed for travel and others are not. In both scheduling and travel, differences are attributable to the ways contractors have budgeted for expenses, and how far visitors need to travel.
We asked visitors what difference, if any, being a visitor had made in their lives &emdash; personally, or professionally. One parent stated that she felt strongly that "this work makes a difference." A day program director said it confirmed her resolve to focus on quality services. She said it was "one of the best things I've ever done." Several visitors stressed that they were happy to see the availability of good services. Another summed up by saying the "system works," and that it was his first chance to have one-on-one conversations with people which brought "tears of joy."
When asked to talk about "best practices," one contractor mentioned several things (this was confirmed by regional center liaisons as well) about the team of visitors assembled:
* the importance of having people who are "comfortable with adults with developmental disabilities, in and around the places where they live;"
* the usefulness of knowing the system and being creative, flexible, and knowledgeable as to how the system works;
* good to have someone from outside the regional center (e.g., greater objectivity, improved collaboration, more trusting of visitor motives);
* it's an advantage not knowing details about the person, so that visitors listen without preconceived impressions;
* training should deal with the sources of possible visitor bias (e.g., persons with whom the individual associates reading things into where the person lives, a person's reputation, one size fits all approach to services).
* monthly meetings with regional centers to discuss what has been learned and to get feedback about the process are helpful.
Additionally, we noted:
* diversity among the visitor workforce (e.g., ethnicity, disability, language, service provider, parent, people served) is a critical element in recruitment;
* there are advantages and disadvantages of both inside and contracted visitors and it may be that the best approach is a blend of both resources along with volunteers;
* while the visitors we interviewed were very enthusiastic, there is an expressed concern by some regional center management that service coordinators who are required to collect life quality information in addition to the requirements of their current workload may not all be as enthusiastic;
* it has been stated by several people involved in the assessment process, that it has the most impact on those more directly involved and for this reason if service coordinators are not visitors, every effort must be taken to keep them connected; and,
* integrating the life quality assessment into the person-centered planning process can reduce workload issues for service coordinators (e.g., planning can be easier with more information available), however, it may create other issues (e.g., service coordinators who do not have training in person-centered planning may view the process as just another form to complete before the team meeting).
The Department of Developmental Services developed a one-day, train-the trainer workshop for regional center staff who in turn trained service coordinators in the process. The one-day workshop agenda included: a discussion of life quality; an overview of the process; several videotaped conversations which highlighted alternative ways to facilitate a conversation; and, a variety of training activities which focused on different approaches to collecting the information as well as the development of the life quality summary. Almost three hundred people were trained in twenty workshops held in most of the 21 regional center areas (see Table 2). In addition, trainings were held for representatives of the Departments of Developmental and Health Services as well as provider organizations.
All regional centers (completing the work with regional center staff) have a plan for the ongoing training of new service coordinators (e.g., mentoring, workshops) as well as volunteers. Regional centers have also planned overview training for families and persons served, service providers, People First chapters, Consumer Advisory Committees, and volunteers. In addition, a number of regional centers mentioned that Looking at Service Quality (a self-assessment, companion piece to Looking at Life Quality) has been integrated into their orientations for new service providers.
The Department of Developmental Services also developed a two-day, train-the trainer workshop for contractors who in turn train the visitors they recruit in the process. The two-day workshop agenda included those elements listed above in the one-day format and, in addition: an overview on developmental disabilities and regional centers; facilitation techniques; information on confidentiality; and, guidelines regarding abuse reporting. Ninety people were trained in four contractor workshops which included representatives from contracting organizations, area board members, parents and university students. Both the one day and the two day workshops were activity oriented and workshop facilitators received positive feedback from participants throughout the state.
Once trained by the Department of Developmental Services, one regional center has used their program managers to complete the training of service coordinators. Since this regional center has integrated the life quality assessment into the planning process for all of the individuals they serve, they have also completed a variety of public information activities (e.g., overview trainings for residential service providers). In fact, they have developed a videotape which outlines the process, the major outcome areas and how the information will be used.
Contractors have adapted, revised and added to the training materials to fit the needs of the visitors they have recruited (e.g., a one-day training format). For example, one contractor has added to the training: at least one face-to-face conversation; a discussion of all of the outcomes; and, practice in conducting collateral interviews (by phone) where the visitor must rely on information from others about the quality of the person's life.
Typically, visitors observe a conversation with another visitor and then complete an interview or two (with or without a mentor depending on their previous experience) and then discuss their experiences and any additional training needs. For example, one contractor has noted that writing up the life quality summary has been difficult for some (e.g., problems with grammar, a visitor with a background in the medical field who consistently used the word patient). In addition to providing feedback for revisions, a mentor system has been put into place. That is, visitors can use a part of their reimbursement to purchase assistance from a project mentor in writing summaries. The contractor also plans: a session on writing; additional meetings to review documentation; a newsletter which will cover such matters; and, an 800 telephone number which can be used by visitors who need assistance with this or any part of the life quality assessment process.
One contractor spoke about training in terms of a salad analogy. That is, each salad has a variety of ingredients. People come to the work of the visitor with some ingredients, but not all. For example:
* professionals tend to understand the system, but may not be used to looking at things from the point of view of the individual; and,
* parents tend to understand the lives of people first hand, but may need support in separating the role of an advocate from the role of a visitor.
There are, of course, individual differences "in what people bring to the salad." The task is to provide support where needed, while using the experience of other visitors to problem-solve and to help each other (e.g., one contractor has used a group problem-solving approach to talk about good write-ups and scheduling).
The visitors we interviewed indicated:
* knowing something about people with developmental disabilities and the service system was helpful going into the training;
* interviewing techniques and social work dynamics were also thought to be useful as background;
* visitors were positive about their training experiences, and reported getting better at doing the work as time goes by.
In addition, we noted
* a variety of public information strategies (e.g., forums, workshops, brochures, newsletters) is important;
* using training opportunities to identify individual visitor needs (e.g., understanding the system, facilitating conversations, writing up summaries) facilitates the development of a quality core of visitors; and,
* support of paid and nonpaid visitors/volunteers through meetings, visits, teams, additional training appears to be both helpful and necessary.
The Department of Developmental Services has asked that regional centers complete the life quality assessment with all persons using community residential services and supports (including independent and supported living) over the next three years. Priority is to be given to people using services and supports from a supported living or family home agency. Given these parameters, regional centers reported using the following approaches to scheduling:
* an initial focus on people using supported living or family home agency services:
* priorities determined by birth month, people scheduled for an Individual Program Plan (IPP) within the next year, or people eager to be interviewed;
* using a sampling technique of all people using community residential services and supports or people within certain living arrangements (e.g., Community Care) or receiving services from certain agencies; and,
* determined by close proximity to a scheduled residential monitoring visit.
People responsible within the regional center for completing the work (whether by staff or outside contractor) are typically found within the Resource Development or Quality Assurance units (e.g., supervisors of those units). Several regional centers have created new positions (e.g., Life Quality Specialist). Other regional centers have identified the Chief of Case Management Services or a team of staff (e.g., Life Quality Survey Team) as responsible for implementation.
Regional centers who have contracted out the work have typically provided the names of individuals to be visited by a priority (e.g., supported living and family home agency) or, people who are within several months of their birth month and an IPP meeting. In this way, the information collected can be integrated into the planning process in a timely way.
In one regional center, service coordinators are encouraged to schedule the conversation within a month or two of the triannual IPP meeting. Coordination of the effort is managed by both the Supervisor of the Quality Assurance Unit (who reviews the summaries for follow-up activities and trends as well as resource development needs) and the Chief of Case Management Services (who assures implementation of the process and integration into the planning process).
One contractor reported the following general experience in scheduling:
* Since interviews have initially been concentrated by program, agency, or facility (based on the referrals from regional centers), it has been very important to try to enlist the cooperation (and support) of service providers. In conversations with service providers about the process, the contractor stresses that the assessment process is "not about moving people." The contractor reports that some providers do not seem to understand the process while others understand the rationale and are fully supportive. One regional center in her contract area sends out both a letter and booklet to all service providers.
* When working with large agencies, this contractor talks to the service provider first and asks: "How can we work together?" She also asks whether the provider would like to meet the visitors and shows them the list of people they have been asked to visit. She is typically assigned a representative of the agency with whom she coordinates the work of the visitors.
* When visiting several people in group living arrangements, the visitor is in a position to observe and talk with (or to staff about) a person more than once. This is especially important, if the visitor has to rely heavily on paid informants for information.
* At single six-person homes, either a regional center representative or the visitor will make the contact and try to establish a good working relationship.
* For people who have conservators, the practice has been to request permission to complete the visit. At one regional center in the contract area, only 3 out of 70 conservators initially responded to a letter by sending back a signed consent. At another regional center, they have had better response. Perhaps this is because an explanatory letter was sent out in advance. (Another contractor noted a variety of responses from conservators from refusing access to meeting with the conservatee alone.) Many conservators have requested and received materials about the life quality assessment process.
* As a practical matter, a certain amount of time is needed to get conversations scheduled, completed, and the information back to the regional center. One contractor indicated that it takes about two months from referral to the delivery of a summary to the regional center.
Several contractors require visitors to schedule their own visits with individuals and significant others. Another has hired a person who schedules for all visitors based on their availability and proximity to the individual.
We have noted the following:
* a liaison within the regional center to track down people who have changed addresses is very important;
* providing outreach information to individuals who will be visited, service providers, families and conservators prior to scheduling is important;
* in terms of responsibility within the regional center, it appears that a number of methods can work, but that placing the responsibility within one unit may work best.
At the time of the survey (September, 1996), only a few regonal centers had experience with completing conversations or life quality summaries and most had no information base on which to report. The life quality assessment process (using staff or contractors) was typically underway in late October or early November in most areas of the state.
The service coordinators we interviewed shared stories about how they have made use of the conversation and the summary to facilitate a change in services and supports or an IPP when necessary. Many of the actions they report as a result of the life quality assessment process are not likely to be recorded in any official way, but are nevertheless important (e.g., a change in respite to accommodate a family outing, discussions of special needs trusts, a change in the IPP to reflect choice, discussions of family and provider expectations, a greater understanding of educational needs, support for additional social activities, etc.).
One service coordinator noted that several individuals have refused to be involved with the process. In both instances, the individuals receive no regional center services other than occasional contact with a service coordinator. It is thought that they prefer to keep professionals at an arm's length from their lives.
The same regional center staff reported that, at this time, they typically hand write their conversation summaries from notes they take during the conversation. There are plans to provide access to a database version of the summary which will be available on the regional center server for those service coordinators who prefer to use a computer. This will also provide the Quality Assurance Unit an opportunity to develop occasional reports on trends and resource development needs.
One contractor indicated that it has worked well to treat the interview as an informal, social experience. Sometimes, the visitor and individual will go for a walk, or have a cup of coffee together. She also noted that many of the individuals that they have visited are excited about the conversation. For example, one person stated that the conversation was "about my life;" "about life quality;" and "the focus was on me."
Most of the individuals we interviewed who had been visited, indicated that they understood the purpose of the conversation (e.g., "to see how things were going for me"). Conversations tend to average about an hour and a half and range from 45 minutes to four hours. Of course, more time is needed when people are difficult to understand or when other people (e.g., family, service providers) need to be contacted as well. Several visitors reported that they needed to come back to finish the conversation because the person they were visiting appeared tired or had another commitment.
The conversations were generally conducted where the person lives, although some have been held in coffee shops, workshops and day programs. Several of the individuals we interviewed would have liked the conversation to have been longer. For example, one person said that he thought the visitor hadn't taken enough time to really understand his fear of going outside his apartment complex, especially at night.
More than one visitor has stated that opening questions such as "tell me about a good day," tend to work well. We were told that about the first half-dozen interviews are the most difficult. Visitors have adapted the materials for themselves (e.g., questions, note taking formats). One visitor (a former service coordinator) stated that having these conversations often reminds her of the reasons she came to this line of work in the first place.
One contractor and several regional center representatives discussed several issues with us:
* Additional information about how to use the categories "Okay at this time;" "Needs follow-up;" and "Suggestions that would make things better" would be helpful. One approach is to say that things are "okay at this time" unless they "need follow-up."
* There are instances where both should be checked. In part, this stems from a tension (in some instances) between a value and what the individual communicates. The individual, for example, may be completely satisfied with an aspect of his or her life, but that aspect may be inconsistent with the expressed outcome.
* The "suggestion that would make things better" is an invitation to a visitor to offer an idea, especially where the person says something is "okay," but what's happening seems inconsistent with values or with professional opinion. A regional center representative stressed the importance of being able to distinguish between what the person has communicated from what the visitor wishes to communicate in the written summary.
* The lifestyle value, Children live in homes with families, should be changed. An alternative phrasing might be "as family- or home-like as possible." It is possible that the value, expressed in its present form, will trouble many parents. The reason is that only parents of children living away from their family homes will be interviewed.
* Many of the people visited have expressed an interest in more contact with family or friends.
* The twenty-five categories could be collapsed into a briefer set, inasmuch as some questions are redundant.
* SSI issues have come up a number of times. For example, one person didn't want to earn more money at his job because, in part, his rent (under Section 8) would go up.
In terms of broad, systemic issues, one contractor stated that "rights" and "choices" are of considerable importance. The issues involve self-determination; having options; and, how choice relates to the Individual Program Plan. A regional center representative suggested that a third box should be available for systemic issues, and said that findings from the summaries regarding choices and options had pushed her regional center into doing more in this area. For example, the life quality focus group tape has been shown to the local Consumer Advisory Committee, which is going to do its own video tape and use it in public education efforts.
In several instances, we were told of individuals who did not want to share the information from the summary with their service coordinators or others. This is honored, by sending the summary to the regional center liaison with this clearly noted. Sometimes, the individual hasn't wanted certain information to go to the service coordinator, and in this case it can be excised, with the remaining material going to the service coordinator. From our visits, it appears that the procedure for sending a copy of the summary to individuals who ask for it has not been clearly worked out (e.g., when individuals cannot read it for themselves). The procedure for sharing the information with others is to send the summary, along with a signed consent, to whomever the individual has selected.
We have noted the following:
* starting the conversation with questions such as "what's a day look like for you right now" and branching into all areas of life quality is a good conversational technique;
* most visitors we interviewed used Conversation with a Friend (developed by people who use regional center services as an alternative to the format provided in the Visitor's Handbook) as the core set of questions;
* the visitors we interviewed adapt the conversation based on the communication skills of the individual;
* the alternative conversational formats (e.g., Conversation with A Family) have been successfully used and adapted;
* opportunities to observe, hold conversations with significant others, and service providers can be important (especially when individuals do not use typical communication);
* the conversation can be used to initiate discussions with family members and service providers about important service values (e.g., choice and decision-making);
* some service coordinators have integrated elements of the conversation into typical service coordination activities;
* it's important to have a contingency plan to accommodate the requests for people other than service coordinator or visitor (e.g., friend, relative) to complete the conversation;
* sharing information on ways to adapt the conversation and rephrase questions would be very helpful;
* it would make sense to develop protocol for completing the conversation more frequently than every three years (e.g., age or service and support transitions, health and safety);
* reimbursement methods for visitors should not preclude longer conversations (e.g., additional people, observation) when needed;
* the conversation can be adapted and used with all persons who use regional center services and supports;
* it's important to use all three sections of the summary (e.g., to include suggestions that would make things better);
* one regional center is working with a contractor on a way to fund (e.g., grant) the purchase of laptops for visitors who could complete their summaries from notes in a more efficient way;
* non-regional center visitors should continue to collect information only, allowing service coordinators to provide follow-up and resource development; and,
* the conversation summary is used to facilitate changes in Individual Program Plans, services and supports.
At the time of the survey (September, 1996), few regional centers had experience with feedback and follow-up and none had an information base on which to report. However, all had developed plans to move the information from summary to follow-up action (e.g., changes in services and supports, resource development) when needed. Here is a sample of a typical plan for completing the feedback/follow-up loop when regional center service coordinators collect the information:
* The life quality summary will go to a central file. One copy will go into the individual file and another will go to the quality of life survey team. This team will be looking at completed summaries to determine what needs follow-up, and what follow-up occurred. A summary report will be prepared by the team for the Resource Development and Training Unit for follow-up as needed. Depending on the type of follow-up required, a copy of the summary may also go to the client rights advocate, the nurse, or to someone else who is best positioned to bring about needed change.
Here is a sample of a typical plan for completing the feedback/follow-up loop when regional center staff (other than service coordinators) or visitors are used to collect the information:
* A copy of the life quality summary will go to the service coordinator, the individual, and anyone else designated by the individual, for use in the person-centered IPP process. Summaries will be used to identify individual needs and follow-up. It is anticipated that this will become a part of the regional center management information system as well. The summaries will also go to the Quality Assurance Coordinator and the Supervising Counselor who will be looking for trends (e.g., resource development, training and technical assistance needs).
Here is a sample of a typical plan for completing the feedback/follow-up loop when only contracted visitors are used to collect the information:
* Completed summaries will go directly to the individual's service coordinator. The service coordinator will incorporate what is learned into the person-centered planning process, and will provide any needed follow-up. The contractor will provide the regional center with an overview report by service provider which will allow staff to look at trends. This report will also go to the provider review team, which will develop a technical assistance plan, if needed.
One regional center we visited reported that a copy of the completed summary is sent to the Quality Assurance Unit for review. If there are follow-up activities that require resource development, they are noted and a plan of action is developed within the unit. The other copy of the summary is placed in the record of the individual for review in the planning process. Issues or concerns which surface during the assessment process are followed-up on by the service coordinator. Case management supervisors review the work of service coordinators to determine if the information from the life quality summary is reflected in actions taken (e.g., changes in the Individual Program Plan).
In all of the areas we visited where contractors are used to collect life quality information, we found that there are procedures for follow-up once the information is sent to the regional center. They typically include a review by a regional center staff member (e.g., resource developer, quality assurance specialist) and distribution to the service coordinator (and others depending on follow-up) along with a follow-up tracking form when needed. Samples of follow-up can be found throughout this report.
All three of the contractors we visited have developed coordinating committees/councils to help guide the effort. One contractor utilizes management staff from the regional centers represented in the contract area. The other two have recruited representatives of every group involved in the process (e.g., regional center, area board, people served, families, service providers). These committees/councils typically discuss recruitment efforts, consider systems issues, look at trends, and make recommendations to the contractor and the regional center(s). One of the committees has even developed subcommittees to focus on a vision for the future, recruitment of volunteers and the use of technology to support the work of the visitors.
We have noted the following:
* if service coordinators are not visitors, every effort must be taken to keep them connected to the process (for example, in one regional center, a liaison working within the regional center supports service coordinators with follow-up as needed once assessment summaries are received from visitors);
* service coordinators who are connected have typically had an experience where another set of eyes has helped confirm something for them and facilitated a change in services and supports;
* collaboration and compatibility between regional centers and contractors is critical and appears evident everywhere we visited;
* visitors should be (and are) considered mandated reporters;
* procedures and training for reporting health and safety emergencies must be clear and easy to use;
* a full-time liaison within the regional center seems to be quite effective;
* a method for follow-up tracking within the regional center must be in place;
* there should be a process for evaluating visitor's demeanor, attitude and facilitation skills whether regional center staff or contracted visitors;
* the visitors we interviewed seem to understand the difference between things that need follow-up and suggestions that would make things better;
* the visitors we interviewed seem to understand that they are collectors of information and not service coordinators or resource developers;
* the visitors we interviewed seem to understand the nature of health and safety issues, how to report them (and have done so appropriately);
* a method of feedback to visitors should be available when requested;
* an important element for success appears to be an oversight committee/council which includes all stakeholders and focuses on systems issues, training, recruitment;
* developing methods of providing aggregated feedback to service providers is critical and must be done within a context of technical assistance; and,
* Looking at Life Quality should be one element of a quality assurance system which includes training and technical assistance as well as monitoring.
On this initial review of implementation, we have seen considerable potential for the successful integration of Looking at Life Quality into the quality assurance system and that it can and does make a difference in people's lives. However, there is a critical need to encourage and facilitate the growth of the best practices that we have discovered in six regional center areas, throughout the state. We are hopeful that the Department of Developmental Services in collaboration with others can continue to implement strategies to promote the importance of life quality for Californians with developmental disabilities.
