This has been the challenge for staff at Training Towards Self-Reliance (Sacramento, California) through the CAMS (Comprehensive Attendant Management Services) project, assisting and supporting people in learning about when to hold'em and when to fold'em. That is, how to find the best person possible for an attendant, make sure that they understand the work, maintain an employer/employee relationship, and terminate the service if all else fails. Sounds fairly straightforward, not!

Program Development Fund (PDF) Grant. Under a PDF grant of statewide significance from the Department of Developmental Services, TTSR had a opportunity to spend a year working out ways to make sure that people with developmental disabilities who use attendants for personal assistance services, or who may want to use attendants in the future, find and keep trustworthy attendants.

Project Overview. By providing a comprehensive plan of attendant management services, this project [sought to] interrupt or prevent cycles of abuse, exploitation, or abandonment of people with developmental disabilities who use paid attendants.

Scope of an Independent Evaluation. The primary duty of the independent evaluator was to conduct a survey of the people who participated in CAMS along with other who knew each person well. Surveys were developed as a way to find out more about relative change in the someone's security. The evaluator w[as] asked to assess each person's own sense of security and confidence in their relations with their attendants. The design and format of the evaluation was meant to be more qualitative than quantitative.

Data Inputs. In order to complete this qualitative evaluation, the following data sets were developed or collected: individual interviews with CAMS participants; an observation and interview of members of the attendant management night class; interviews with Community Support Facilitators; surveys of regional center case managers; surveys of primary attendants; and, a review of participant status reports prepared by agency staff.

Project Participants. Fourteen persons were provided with attendant management services through this project. Of those fourteen participants, twelve became the focus of this qualitative evaluation (the two other participants came into the project at about the time that individual and collaborative interviews were completed). All of the participants live in their own apartments and eleven of the twelve were interviewed about their current living arrangements and attendant management services at their homes (one person could not make the scheduled meeting and was interviewed by phone). By gender, eight of the participants were men and four were women.

Interview Methodology. All twelve participants agreed to the interview and signed a consent form which was forwarded to the evaluator. An individual interview protocol was drafted by the evaluator and reviewed by project staff management. Once completed, phone contact was made with each of the twelve participants and interview dates and times were established. Interviews were held at the homes of participants at times which fit into individual work, social or appointment schedules.

What we found out about security and autonomy. These were two of the guiding principles and goals of the project. First, to increase the sense of security that people have about their attendant services. At the same time, preserving the greatest degree of autonomy that people have in making their own decisions.

If you look at five questions in the individual interview, you can gauge a gross index of security for participants. Those questions are:

Have you had problems in the past with attendant services?;

Do you get support/help from TTSR in working with your attendant?;

Are you happy with your current attendant services?;

Do you have any worries about your current attendant services?; and,

If I have a problem with my attendant, I can call someone at TTSR?

The summary of responses from those questions is:

ten of twelve participants have had problems in the past with their personal assistance services ranging from poor attendance to robbery and assault;

all twelve participants stated that they are now receiving support or help in working with their attendant;

eleven of twelve are happy with their current attendant services;

four of twelve have some worries about those services, but report that TTSR is helping to resolve them; and,

eleven of twelve know that if they have a problem with their attendant(s), they can call someone at TTSR.

While there is little to suggest that anyone would ever have a high sense of security with attendant services (e.g., factors such as low pay, hard work produce high turnover), CAMS participants do appear to feel that someone is there to support and assist them when they need it. This assurance could only add to someone's sense of security regarding these services. As important, no one mentioned any current worries (e.g., need for extra help on weekends) that in any way compared to the significance of problems in the past.

In looking at the issue of autonomy, no participants suggested that staff make decisions about attendant services for them. Instead, participants talked about working on things together or getting advise from staff. It appears from talking both to staff and participants that the delicate balance between support/assistance/guidance and autonomy has been carefully considered.

Feelings about neighborhood safety. Any interesting aside has to do with the perception of safety that people have in their neighborhoods and their feelings about the people who live around them. That is, participants who like their neighborhoods typically state something positive about the people who live there and also state that they feel safe. Likewise, participants who don't like the people who live around them, typically don't feel safe in their neighborhoods. Since all of the participants stated feeling some degree of safety in their homes or apartments, it would seem that the security of your own place overrides anything you might experience running the gauntlet of the neighborhood.

More eyes and ears. It has been said recently that assuring quality services is everyone's business. The additional support provided by CAMS brings with it extra eyes and ears to look for problems and issues in attendant services as they arise. This proactive approach to attendant management services can only serve to decrease the frequency of traumatic experiences, some of which have been known to threaten basic health and safety.

As you recall, one of the expressed purposes of CAMS was to identify people who had a history of problems with attendant care or who might be at risk (e.g., first time users). When regional center case managers reported that five of the individuals they supported had no past problems (or left blank), it was important to look at both the individual and facilitator interviews of those persons. Information on four out of five of those individuals did, in fact, indicate past problems from spotty attendance to robbery and assault.

There are many possible explanations for this difference in reporting, e.g., the very high caseloads of case managers, the reluctance of people to report underreport problems which might jeopardize their independence. Whatever the reason (or reasons) may be, when people who need personal attendant services are vulnerable to the those who provide them, a support service such as CAMS can only be a helpful and practical way to go.

If you would like a copy of the complete evaluation, final report or would like to find out more about some of the materials they have generated for this project, please call or write:

Charles Galloway Training Towards Self Reliance 2755 Cottage Way, #15 Sacramento, CA 95825 (916) 483-3817