What We Learned About the Visit
and the Visitors
When asked what is the best part of the process?, service coordinators who responded often mentioned that it helped them get to know someone a little better. Some also stated that it helped open up lines of communication with families and/or service providers regarding quality-of-life issues (e.g., choice). While some felt that it was a duplication of their planning or social work efforts, others mentioned that it helped clarify issues and concerns and enriched the individual planning process.
In regard to suggestions for making the process better, a number of service coordinators mentioned the need for additional training for completing the LQA with individuals who do not use typical communication. Others stated that they had no training at all. Several stated that the process should be streamlined and the questions easier to understand. Again, some respondents indicated that the LQA process overlaps good social work and seems to be redundant. Several surveys referenced problems (e.g., confidentiality, developing a relationship with someone one has just met) with using visitors from outside the regional center.
When responding about accommodations that were necessary as a part of the process, many service coordinators emphasized the need to conduct the interview where people feel most comfortable (e.g., at home, day program). Others mentioned that it was very helpful to observe people in addition to the interview. A good number of respondents stated that the assistance of service providers and family members when needed (e.g., communication, additional information) was very important.
In response to what is the best part of the process?, while visitors often mentioned that they enjoyed learning more about someone, many also stated that they felt they were making a difference. That is, they were supporting people in moving towards a good, quality life. Others indicated that the process provided people with the opportunity to voice their ideas and concerns. Several also mentioned that it was gratifying to see people integrated into their communities and enjoying their lives.
In regard to suggestions for making the process better, outside visitors (like their regional center counterparts) also indicated the need for additional training regarding people with atypical communication as well as for creative ways of rephrasing the questions. Others suggested a need for additional support in writing up the summary and for regular meetings with other visitors.
Responding to the question about accommodations, visitors hired by contractors also mentioned the importance of service providers and family members in collecting life quality information. Others stated that language, location and prior knowledge about special issues and communication styles were important. One visitor had typed up the questions in large print so that someone with a vision impairment could read them more easily.
We asked visitors what difference, if any, being a visitor had made in their lives 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."
The figures in this chapter provide considerable information about visitors. From Table 4,
we know that the visitors who responded typically have a lot of experience (average of 30 visits)
and that the average time per visit is about one and a half hours.
We also know from Table 5 that visitors have attempted to use a variety of sources of information in completing the life quality assessment. In that regard, visitors identified as service coordinators appear to rely more on members of an individual's team than do those hired by a contractor.
Table 6 indicates that as visitors completed more assessments, their completion time decreased. In fact, visitors reached the average time (84 minutes) across all respondents at about ten visits.
We also know that in two small subgroups of respondents, visitors paid by the visit
complete their assessments on average in about forty fewer minutes than those paid by the hour. This
finding could appear for a variety of reasons. For example, visitors paid by the visit may have
completed more assessments and be more efficient or may complete them by assigned facility. Whatever
the reason, there is need for further discussion of how visitors are remunerated. That is, to make
sure that whatever system is used does not create a disincentive for collecting useful information
(e.g., observation, collateral interviews) when needed. For example, an approach used by one of
the regional centers was a payment system that included a basic per visit amount and
additional remuneration for additional work (e.g., collaborative contacts, extraordinary travel, use of
an interpreter, etc.).
What We Learned from Individuals and Others Who Were Visited
In addition to surveying those who completed visits, we also selected a list of 3-4 individuals at each regional center from the sample of those who had been visited 90 days or less prior to the site. The thought here was that these individuals would have the greatest recollection of a visit. While not randomly drawn, we attempted to see and talk to people in their own homes, as well as in community and health care licensed homes. When the individuals we visited were unable to communicate in ways we could understand, we tried to talk to someone who knew the person well. This was typically a service provider, family member or conservator.
What We Learned from Regional Center Staff and Contractors
Most of our survey, interview or focus group respondents stated that individuals visited were eager to talk to someone and enjoyed the experience. Some mentioned that they found the questions tough, and others said that the visitors asked questions that no one had ever asked before. It was very much a social experience, and for those socially isolated, very valuable. For some it provided hope. Though some individuals seemed to have an idea about why they were being asked questions about their lives, they did not know what happened to their answers. In other words, they did not know whether issues were being followed-up or not. Some were disinterested in the process, while other consumers did not want the information from the LQA shared with the Service Coordinator. Interestingly, this was not always because the findings from the LQA were negative.
A concern raised by a couple of survey respondents was that the individuals did not have a choice in visitors and in some instances, though they refused an interview, the visitor continued to call. One respondent very strongly stated "we would have preferred that individuals be given the same opportunity as non-disabled people to make choices. In other words, many were called and told they'd be involved in this process, rather than asked and many were contacted repeatedly, even after declining to be interviewed." On a positive note, this person went on to say "It did appear, however, that during the actual interview that individuals were really heard, and their opinions noted."
We noted that some of the service coordinators we interviewed shared stories about how they have made use of the conversation to facilitate an immediate change in services and supports or an IPP when necessary. Many of the actions they reported 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 had refused to be involved with the process. In both instances, the individuals received no regional center services other than occasional contact with a service coordinator. It is thought that they prefer to keep professionals at arm's length from their lives. There were other instances of refusal in most regional center areas with similar reasons or, in some situations, when a conservator refused the opportunity or a service provider made access to individuals difficult.
Contractors stated that visitors typically found the process personally enriching and that it was a learning experience that stretched them. It enabled them to see how people live and how services
and supports work. At one regional center, visitors said that the experience engenders "a passion for the population." That is, being with people with developmental disabilities and learning about their lives made "you feel good about yourself" and that for some it was "a whole new view of what it is like to be in someone else's shoes." Some service coordinators, who participated as visitors or who went through the process with the individuals they support, found the LQA process of value. They stated that it enabled them to get to know individuals in a different way. Some reported finding things out about people that they had not known, others did not.
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 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 (see Table 4 on page 61 for more information). 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.
We were told that about the first half-dozen interviews are the most difficult. At that point, visitors start to develop their own style and adapt 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.
There were varying responses regarding the benefits of visitors. Most respondents who saw a benefit, acknowledged the importance of having someone who was not part of the service system or known to the individual as having a fresh perspective. However, a repeated issue raised by some respondents was the problem of interviewer validity created by a lack of knowledge of individuals with developmental disabilities and/or the service system. Some of the problems in accuracy are said to be located with the LQA tool (e.g., difficulty for visitors in determining the strength of a feeling or perception). Others suggested, that in some situations, prior knowledge by the visitor might be important. That is, having prior knowledge of the person might reduce duplication of effort and the identification of inappropriate follow-up needs.
Acknowledging Individual Differences in the LQA Process
Most people who responded (through self-survey, focus groups and interviews) to this question indicated, that at some level individual differences were acknowledged and addressed by matching visitors and individuals on cultural background or language or by providing a person who could interpret. The individual differences that were mentioned were language; sign-language and in one case gender. Two respondents referred to geography as being a variable considered in matching visitors. For another regional center, it was the potential for visitors meeting informally with individuals outside of the LQA process. In another, traveling was a consideration.
Being aware of the individual differences of individuals has prompted several of the contractors to develop a pool of visitors that reflect the diversity within the community. One person "...developed a good pool (of people) of available languages and cultures. She also utilized surveyors with special nursing and service provider backgrounds to call on when assessing individuals with special health needs and accompanying challenges in self-help, communication etc. These visitors were already skilled and comfortable with a variety of methods to engage individuals in conversations, understanding their likes, dislikes and preferences, and understanding the function of a licensed health care environment." For those individuals who use nontypical communication, one contractor stated that visitors "spent additional time observing and interacting with those individuals to assess their reactions to services provided in their primary environments: residential and day programs."
In regional centers where service coordinators complete the life quality assessment as a part of the person-centered planning process, we heard varying degrees of interest and benefit. Some viewed it as redundant, others that it adversely impacting their workload while still others suggested that it made planning easier. A concern is that service coordinators may view the LQA process as yet another form to complete before the team meeting, whereas everyone should be trying to improve services by taking into account the presence (or absence) of valued outcomes.
A Summary of Major Advantages and Disadvantages of Visitors
From Inside and Outside of the Regional Center
There can be quicker feedback and follow-up (e.g., changes in services and supports, resource development) when needed.
If blended into the planning process, it may be seen as just another form to complete before the team meeting.
It can offer another perspective or new information about life quality or the substantiation of an already documented need for changes in services and supports.
Service coordinators may feel less connected to the process and feedback/follow-up
may not be viewed as credible.