In 2002, VCIL and the Department for Disabilities, Aging and Independent Living developed a survey in which many Vermonters participated. This survey asked about the need for and types of training preferred by people with significant disabilities who use personal assistants or attendants to maintain their independence. A majority of those surveyed felt training in attendant services management was an essential item in the quest for independent living.
And no wonder, since it is a real challenge to manage one’s own care. Those of us who do it are basically running a business. Since we are the employers in the attendant care relationship we have the same responsibilities as other employers. There are real skills to be learned in supervising and managing employees in any business. The challenges are even greater for those who manage workers who provide the most intimate and personal kind of care, and who have access to the most personal sides of our lives. Good communication and the ability to give clear direction are essential in this “business.” So the development of some tools to assist Vermont’s citizens who use attendant services was begun.
In January of 2003, surveys were sent to 335 Personal Attendant Services (PAS) users around the state. Of the 114 surveys returned, 61% of the respondents preferred self training materials (materials that could be used in their own home by themselves), and 69% wanted one on one training tailored to their needs (a peer would deliver the training). Group workshop training was preferred by only 18% of those surveyed; however, the team of developers believes this question needs to be revisited in light of information gained from focus groups. Do we really prefer individual training or is this just the method that we have become used to using? If it were a bit easier for us to get together, would we welcome the interaction and training with others who share our concerns and challenges? These are questions that still need to be addressed. What is wanted in our community in contrast to what is available?
Following the survey, VCIL received funding to partner with individuals who use attendant or personal assistance services to develop a “Toolkit” and training modules. We began gathering manuals, books, tapes and videos. These were reviewed by peers around the state. We gathered resources for the library and held two four-day intensive group trainings (one in Burlington and one in Rutland) for peers to see if we were on the right track. The end result of this first phase was that participants all agreed that development of a Toolkit was valuable and worth completing.
What We Have Now
We now have an introductory packet, including a “Quickstart Guide,” which we hope will improve user feedback. Three Self Training Modules available and the basics of the One on One Training and the Group Workshop have been developed. We consider this project still a pilot in its early developing phase and ask everyone who can, to help evaluate and assist us in order to develop a truly peer designed and peer delivered program for hiring and managing our personal attendants.
A Vision for the Future
We are trying to build on Vermont experience and knowledge and bring the best resources and wisdom from around the country into play in Vermont. That is the Vermont way: Work with the best of what has already been developed and make it the best it can be for Vermonters. We also recognize the importance of input from the caregivers, as they are such an intimate part of the success of this program. In order for this to be authentic, we need ongoing input from users of attendant services and PAS workers. Culling the resources, hearing the feedback, seeing what really works and what does not, always with the peer as the guiding force, will take some time.
The PAS Toolkit and Training Program are now maintained at VCIL. We will continue to maintain and upgrade the library and Toolkit materials. If funding is available, we also hope to coordinate different types of trainings and peer support services in response to the interests and needs of PAS users. We need your suggestions! Please share your ideas and interests as we continue to design and implement this valuable tool for independent living.