In June of 1993, through the competitive bidding process and a subsequent contract with the California Department of Developmental Services, we were asked to: (1) develop a way to look at the outcomes of services used by people with developmental disabilities and their families; (2) work out a method to fit it into the current developmental service system; and, (3) complete a follow-up look to see how it's working and how it could be better. In the first two years and with the help of many others (e.g., Quality Assurance Advisory Group), we completed the first two tasks. This report represents the completion of the third and final aspect of that contract.
In early 1997, the Department of Developmental Services (DDS) requested support from all 21 regional centers for a site visit in order to collect the quantitative and qualitative information which you will find in this report. Our DDS contract liaisons assisted us in developing a protocol for our visits in the summer months of 1997. At each center, we completed the following activities: (1) reviewed a representative sample of life quality summaries and collected information on follow-up activities; (2) distributed surveys to visitors; (3) talked to individuals, family members and others who had been visited; (4) interviewed, surveyed or held a focus group of regional center staff; (5) interviewed regional center life quality assessment (LQA) coordinators or contractors; and, (6) collected a revised summary of related, regional center activities.
In this report, we have summarized what we have learned about: organizational differences; recruitment, selection and training of visitors; scheduling and coordination of life quality assessments; perspectives of visitors and the life quality assessment; thoughts about the tool and possible refinement or revision; follow-up needs and activities; the relationship between the LQA and other regional center activities; and, thoughts for the future. We also offer recommendations in each of the above areas, which we summarize for the short-term (this year) and the long-term (the third year and beyond).
Organizational Differences
1.While generating information for a variety of purposes is commendable, it's important that all regional centers and area boards adopt the same primary purpose for completing the life quality assessment process as recently written into law. That is, (1) collecting information on service quality, (2) protecting individual legal, civil and service rights, (3) providing input to the individual planning process; and, (4) identifying training and resource development needs. This new legislation will likely produce a difficult transition for many regional centers who have used the LQA process to largely monitor regional center performance, to assess aggregate satisfaction, or to learn about services at certain facilities or programs.
2.All regional centers and area boards should develop interagency working agreements which outline the process and indicate how the purposes of the LQA will be met. We foresee a variety of problems in mixing quality enhancement efforts with traditional enforcement and monitoring activities. If the LQA process is used primarily to protect rights, it may not produce information that will facilitate service quality for individuals and their families. In fact, it has the potential to exacerbate the adversarial relationships that exist in some places between local area boards and regional centers and/or service providers. Fear can lead to manipulation, masking information, and the like.
3.We would recommend that each regional center think about and formalize any purposes for the process beyond those recently written into law. These purposes may include assessing regional center or service provider performance, increasing community connections and personal advocacy, learning to listen better, and measuring personal satisfaction.
4.While it would be difficult to mandate, it seems critical that every regional center have a champion whether the LQA process is completed in-house or contracted out. It appears to us that without such a person, life quality assessments can easily lose credibility, and end up not making much difference in people's lives.
5. We would recommend the development of a local coordinating council. Whether newly created or as part of an existing body (e.g., Quality Assurance Committee), such a committee can provide a periodic review of the life quality assessment process as well as make recommendations in resource development and training. They also may serve an important role in the transition of the work from regional centers to area boards.
Recruitment
6. Recruitment efforts should result in a representation in visitors of the diversity (e.g., ethnicity, language) of the individuals in the area.
7. In the second year of implementation, it's important to build on successes and initiate a greater effort to recruit people with developmental disabilities and community members as visitors in each regional center area.
Training
8. In cooperation with the regional center, each area board should develop a brochure for dissemination to all interested persons. It should explain the purpose of the life quality assessment process and the uses of the information.
9. As a cooperative endeavor, regional centers and area boards (through interagency agreements), should plan for community trainings throughout the year which are committed in total or in part to the life quality assessment process and to the creative, responsive use of the information to improve services and supports. "Quality services and supports are everyone's business."
10. Regional centers should include elements of the life quality assessment process in training sessions for person-centered planning provided to service coordinators and others, so that each enriches the other.
11. The training package for visitors needs to be reviewed and revised where necessary (e.g., gathering information from people who do not communicate in typical ways). The work of the visitor requires a high level of general interviewing skills (and more with people for whom it is difficult to interview) as well as good writing skills (reporting what was learned and what could be better in a non-blaming way). It also requires an ability to develop a relationship with the individual, observe or talk to others when needed. Several contractors (especially one with a university affiliation) have refined and improved on the training and support package. We hope it will be widely shared.
12. The content outline of the core training curriculum should be included in both the state level and local versions of interagency agreements.
13. The training package should be strengthened by adding activities regarding the various sources of visitor bias (e.g., personal values, previous experience, personal style, passionate interests).
14. Once transitioned, each area board should schedule regular support and follow-up training meetings for visitors.
15. Once transitioned, each area board should schedule regular meetings with regional centers to discuss what has been learned and to get feedback about the process (e.g., visitors, summaries).
16. Once transitioned, each area board should develop a plan for training and supporting individuals with developmental disabilities who would like the opportunity to be a visitor.
Scheduling and Coordination
17. A liaison position within the regional center will be needed to support the scheduling and coordination efforts of the area board. This will likely have resource and workload implications for regional centers once the transition to area boards occurs.
18. Outreach information should be developed and disseminated to individuals who will be visited, service providers, families and conservators prior to scheduling.
19. The development of a procedural outline for scheduling and coordination efforts once the process is transitioned to the Area Board. This outline should include the basic elements of the assessment referral form (e.g., name, address, phone number, service provider, communication skill, potential barriers to completion of the interview, names and phone numbers of family and close friends, etc.).
The Visit
20. A payment or reimbursement plan for visitors should be developed in a way that balances the incentives for efficiency and for collateral interviews when needed.
The Tool
21. A work group of interested parties (e.g., visitors, contractors, and regional center staff) should be created to consider revisions to the assessment and summary. Whatever revisions are made must be evaluated using the criteria provided in recent legislation. That is, does the assessment produce information that: (a) describes service quality; (b) protects individual civil, legal and service rights; (c) provides useful information for the individual planning process; and, (d) identifies training and resource development needs.
22. Basic criteria should be established for when observation or collateral information should be gathered (e.g., when individuals use nontypical communication).
Follow-Up
23. Each regional center should have a plan for tracking follow-up activities and looking at general trends in follow-up from time to time. Again, this will likely have resource and workload implications for regional centers.
Thoughts on the Future
24. Near-term (Years II and III), innovation and refinement should be encouraged at all levels of the process.
25. The Department and Organization of Area Boards should look to successful contractors for assistance in the transition of the process from regional centers to local area boards.
26. We would recommend the option of area boards contracting with regional centers for all or part of the process. We saw several examples of how, with some adaptation (e.g., lottery system, separate unit, a tracking system which can be periodically evaluated), this would be doable and would produce a positive result.
27. In the longer term (beyond Year III), we would recommend placing funds for LQA into a pool accessed through statewide requests for proposal from regional centers (in cooperation with area boards) to improve the quality of services in their local areas. This would permit substantial variation in approach, reflecting local quality improvement efforts.
28. While the discussion of using an in-house or a contractor approach in completing the assessments may have ended for the moment (due to current legislation), it will likely continue as the transition to Area Boards is initiated. One way to deal with these issues is by carefully developing contracts or memorandums of understanding between the parties on both a statewide (DDS and the Organization of Area Boards) and local level (regional center and area board). Our review of existing agreements between regional centers and contractors suggests that the following major topics should be included in any agreement language regarding life quality assessments:
standard boilerplate language (e.g., terms of compensation, legal expenses, termination, nondiscrimination);
composition (e.g., diversity) of the visitor workforce;
training (e.g., outline of topics) and technical assistance capacity (e.g., regular meetings with visitors);
requirements for reporting and regularly scheduled meetings;
development of a local coordinating council;
a plan for honoring individual choice;
health and safety reporting requirements;
scheduling and coordination procedures;
a liaison for both the regional center and contractor; and,
specification of the number of assessments to be completed over the year.
standard boilerplate language (e.g., terms of compensation, legal expenses, termination, nondiscrimination);
composition (e.g., diversity) of the visitor workforce;
training (e.g., outline of topics) and technical assistance capacity (e.g., regular meetings with visitors);
requirements for reporting and regularly scheduled meetings;
development of a local coordinating council;
a plan for honoring individual choice;
health and safety reporting requirements;
scheduling and coordination procedures;
a liaison for both the regional center and contractor; and,
specification of the number of assessments to be completed over the year.
Concluding Thoughts
During our review of implementation, we saw considerable potential for the successful integration of Looking at Life Quality into the quality assurance system. We also saw that it can and does make a difference in some people's lives. At that time, we stated that there was a critical need to encourage and facilitate the growth of good ideas and practices in methods for improving life quality. We still see that need one year later and it will become even more critical as the effort is transitioned to area boards over the next year.
As to the question of which model of implementation might work best, we would answer that it depends. That is, it depends on the purpose(s) that the life quality assessment serves. If it were only a method to inform the individual planning process, it may not matter who completes it. In fact, in centers where service coordinators have extensive training in an adapted method of person-centered planning, it may be that the LQA is largely redundant. If the purposes are multiple - that is, in addition to input to the individual planning process it is used to provide an objective assessment of life quality, to protect individual legal, civil and service rights and to identify resource development and training needs (as current law suggests), it is most likely best to be completed by another set of eyes or someone other than the responsible service coordinator (whether within or outside of the regional center).
Finally, as LQA work is transitioned to area boards, we see two systemic issues that may need attention. First, the sheer volume of work may interfere with other valuable area board activities. Second, the advocacy work of area boards may drift increasingly toward regional center performance and away from generic services and other specialized supports (e.g., school, rehabilitation, other human services). We hope that these issues are kept in mind as the development of interagency agreements and transition is initiated over the next eight months.
For a complete copy of this report or Report 2 ( a more detailed account of how each regional center implemented the Life Quality assessment and other quality assurance activities, please call or write: