Submitted by Area IV Board on Developmental Disabilities
The 1996 Presidential election is a good opportunity to encourage and support people who have disabilities, their families and friends to get involved in shaping the life quality of their local communities by voting,
The political landscape is changing! Elected representatives in local and statewide offices will be increasingly important as the impact of budget cuts and block grants begins to be felt. Block grants will mean more local control as federal mandates are scaled back. These changes provide an opportunity to elect local representatives who will build a system and structure that is responsive to the needs of people who have disabilities and their families.
So what can you do to support people to become informed and involved voters? Here are some ideas:
However you support people to vote, you can make sure your activities remain ethical and nonpartisan by: 1) not making any statement in support of or opposition to a particular candidate or party; 2) not wearing a button with a candidate's or party name; 3) not driving people in a car with bumper stickers with the name of a candidate or party; and, 4) not posting signs with name of a candidate or party. Besides the potential for unduly influencing someone, engaging in partisan activities while supporting people could jeopardize an agency's nonprofit status.
Finally, throughout the year, help people call or
write their elected officials to let them know how their decisions
affect people who have disabilities.
United Cerebral Palsy Association
Governmental Activities Department
1660 L Street, NW Suite 700
Washington, DC 20036
(202) 973-7197 TDD
(202) 776-0414 FAX
UCPA's Word from Washington, A Nonpartisan Guide to Voting has good information about organizing voter education and registration projects.
Americans with Disabilities Vote
4215 12th Street, NE
Washington DC 20017
(202) 529-6747 FAX
A non-partisan organization focused on empowering people with disabilities through the electoral process. They have posters, buttons, and a Nonpartisan Voting Guide. no charge; donations accepted.
Unique People's Voting Project
40 Brooks Avenue #2
Venice, CA 90291
Web Site: http://members.aol.com/upvote/up.htm.
Unique People's Voting Project conducts voter education and registration. The "Take 5" packet encourages people who have disabilities to register 5 of their friends or family members to vote.
League of Women Voters
926 J Street, Suite 1000
Sacramento, CA 95814
(916) 442-7362 FAX
The Voters Handbook ($2) explains the meaning and procedure of voting. The Voters Service Handbook ($5.50) is a guide for organizations to define and implement their voter service activities. Your local League of Women Voters can tell you about candidate forums in your area. Check the phone book for your local League.
Project Vote Smart
Project Vote Smart is a free service that provides information about elected officials. Congress members' voting records in key issue areas, past campaign position statements, and more. Publications include Voter's Self&endash;Defense Manual and U.S. Government Owner's Manual (both free).
As we move towards individualizing services and supports through person-centered planning, it becomes even more important to collect information directly from individuals and those who know him or her best. The adapted excerpt below summarizes some of the issues faced by interviewers and includes some suggestions for increasing the chances of a successful conversation. This article was adapted and excerpted without permission from Are You Retarded? No, I'm Catholic: Qualitative Methods in the Study of People with Severe Handicaps by Sari Knopp Biklen, Syracuse University and Charles R. Moseley, Syracuse University and Vermont Division of Mental Retardation. It was first published in the Journal of The Association for Persons with Severe Handicaps, 1988, Vol.13, No. 3, 155-162.
I. Six Common Concerns
Interviewer: How are supervisors different than counselors?
Paul: Oh, I like it.
Interviewer: How are they different?
Paul: Pretty good.
Interviewer: Are they the same?
Paul: Oh yeah.
Interviewer: They do the same jobs?
Interviewer: Or, do they do different jobs?
Interviewer: What does the supervisor do?
Paul: Well, they have to clean up the stuff.
The interviewer was finally able to determine how the jobs differed by asking Pete to describe first his supervisor's job and then that of his counselor. Pete was not able to bring the supervisor and counselor together to compare them. One strategy used to overcome these difficulties, then, is to ask about people, things, and activities separately, rather than asking the individual to provide a comparison or analysis.
Some misunderstandings require repetition and honesty to overcome. During one conversation, an interviewer repeated his preference several times while developing rapport with Pat, who lives in a group home.
Pat: Doug, would you like a nice cold coke? Doug, a coke on ice?
Doug: Thanks, but you know, I'd rather have water if you have it.
Pat: Coke, Doug? Want a nice cold coke, Doug? A coke on ice?
Doug:(smiles) No thanks, but I'd love a cold glass of water.
Pat: No coke, Doug?
Doug: No thanks, but I'd love water.
Pat: Water it is, Doug.
The interviewer's honesty heightened their communication and revealed Pat's ability as a flexible and gracious hostess.
Taping interviews may help interviewers to better understand the individual's pronunciation. One interviewer found it easier to understand language when he listened to the tapes than when he was in the actual interview situation. Taping the interviews also enabled him to replay sections when desired.
Open-Ended Questions. Most interviewers ask open-ended questions so that individuals can frame answers from their own perspectives. Sometimes, however, such questions may become more confusing than clarifying. When one interviewer asked questions such as "Tell me about your work" or "What do you think about what you are doing?", he received answers such as "It's okay," "All right," or sometimes no response at all other than a smile or a stare.
It's important to break requests for information into parts and ask separate questions about each. One interviewer, for example, broke down the original question "What did you do before you worked here?" to "When did you start working here?" "What were you doing the day before you started here?" "Were you going to school, or were you in a workshop, or just at home?" This process may elicit richer responses and answers to other questions as well. You can obtain a response to questions involving more complex concepts if you can determine the right form to use.
In order to get past difficult spots and find this form, you can ask the individual questions which can be answered by "yes" or "no" or by giving a short answer. It is helpful to view this process as temporary rather than routine, however, because there are problems with it as well. For example, short answer questions may represent the concerns of the interviewer rather than those of the person being interviewed.
The Interview Environment. Effective interviews need to occur in situations where the individual feels comfortable. Interviewers often talk about building "rapport" and interviewing people in settings where they feel most natural. For example, an individual living in a group home expressed great anxiety when she thought she would be interviewed in the group home office and requested that the living room be used.
The "Same Answer" Problem. What do people mean when they use the same phrase over and over again in response to different questions? One interviewer found, for example, that one respondent frequently repeated "What I like to do is do all my work and get the job done, and that is what I like best." Perhaps the individual added this statement to many of his answers to reassure the interviewer that he was a good worker, or perhaps just to have something to say. As an interviewer you can use these repetitions as signals that respondents may not know the answer to your question (but will not say so), that you may not be asking questions that they find important, or that they may not understand the question.
Phrases may also be repeated because the individual is preoccupied by a particular concern or problem which is unsolved. In response to virtually any open-ended question, for example, one woman said something like "Oh, I don't want to work at the recycling company, I want to go out. Do you think they will let me? I don't think they will." She repeated this basic statement again and again. In this situation, the interviewer attempted to reflect the problem back to the individual and would ask "Well, what are you going to do about it?" or "What do you think you could have done in that situation?" Asking questions that encouraged respondents to think of other options seemed to help them concentrate on what they could do and moved the conversation along.
Pleasing the Interviewer. All interviewers worry about the extent to which the individual says what the interviewer wants to hear. This concern can be especially apparent when the person being interviewed is not sure who the interviewer is and may think that this is someone who has some kind of control over his or her services and supports. In these situations, people will not likely express what is really on their minds. It's important to clearly identify who you are and how you are connected to his or her life, services and supports.
Significant Others. One strategy for working with people who do not use words or whose communication is extremely difficult is to interview important people in his or her life. There are both advantages and disadvantages to this approach. One advantage is clear. The friend, parent, or advocate frequently has spent considerable time with the individual and has a better understanding of the his or her language and methods of communication. In addition, these friends or family members often know specific dates or events that the individual may not remember.
This approach has clear drawbacks as well, the most serious being that the friend, advocate, or parent may act, not just as a translator, but as a filter as well. In fact, it is almost impossible not to get the perspective of the other person. The influence of that perspective on the conversation often depends on what stake this significant other has in the life of the individual. When there is a need to rely on others for information, it becomes important to have more than one source.
II. Use of Observation
Introduction. Interviewers should seek opportunities to get unfiltered responses; so, observations play a key role in collecting information, especially when individuals do not use words or signs to communicate. The goal of observation is to discover the meaning that individuals make of their world.
Observe Over a Period of Time in Varied Settings. Observation is a labor-intensive effort, but the effort can be used to sustain insights from interviews. Most of us will talk and act differently, depending on the environment in which we find ourselves. So, it's important to observe people in a number of different life experiences and over time.
Get to Know the Person. One way to get to know individual in their natural environment is by spending time with them. You get to know their preferences, their habits, and their modes of interacting. Getting to know someone well allows you to see the person empathically.
Use Significant Others. Significant others are as important in observing as they are in interviewing. Although there are some concerns in depending on advocates, friends, or parents to interpret meaning, there are benefits as well. Ideally, the interviewer would want to compare information collected about an individual's life with the person's perspective. If this is impossible to achieve, the interviewer can depend on others who know the person well to help. The best way to judge the importance of information from significant others is by the quality of the information that they give. Rich information, full of examples, given about a variety of situations over time is extremely useful.
Conclusion. It is important for the interviewer who wants to learn about the world of another individual to supplement information received through discussion with observations in the places where they live and work. Interviewers enter natural environments to find out what meanings people make of their life situations, as well as to provide a framework in which to place these meanings and to help explain conflicting perspectives.
The Big Picture*
4 Ways to Help Make Sure That Californians with Developmental Disabilities
Have the Services and Supports They Need and Want
* Adapted from materials provided by the Department of Developmental Services.
1. Look at each person's life quality.
How? Individuals have a chance to talk with someone about their life and the services and supports that they use where they live. This person is called a visitor. The visitor might also talk to others who know and care about the individual. They might also spend time with someone to see what kinds of things they do each day. After visiting, the visitor writes down some notes about the visit and about things that would make someone's life better. How often is this visit? Every three years or more often if asked. Who makes the visits? Visitors can be regional center staff, people with developmental disabilities, family members, friends, volunteers, professionals and other interested people. What happens with what visitors learn about individuals? Individuals can choose who to share the information with after the visit. It can be used to help someone's team write an individual program plan (IPP). It can also be used to help the team who assists the individual with services and supports do even a better job. If a visitor finds out something that can be dangerous to an individual, the regional center needs to know about it and will help figure out what to do next.
2. Look at the services and supports that each person gets.
How? The individual, someone from the regional center, and possibly others get together to see what has been working and what could be better. How often? People get together to talk about the IPP and services and supports about every six months (or more often if needed). Who? The regional center service coordinator makes sure that the IPP review takes place. What happens after the meeting? If things are going well, that's great! If things could be better, then the team decides if the IPP should be changed or if the services and supports should be changed.
3. Look at the agencies that provide people with services and supports.
How? People from the regional center and state agencies (like licensing) visit programs to see what they are doing. How often? At least once a year and sometimes more often if needed. Who? People from the regional center or licensing. What happens after the visit? The person from the regional center or licensing writes up a report about what the program is doing well and what could be better. When things need to be better, a plan is written up that tells what needs to be done and by what date. If things don't get better then the regional center or licensing can take some action, including contracting with another provider for services and supports.
4. Help everyone get better at providing services and supports.
How? Regional centers can help by sharing information on things that individuals, families and service agencies want to know. A way for providers to help themselves is to use something called the Looking at Service Quality Handbook. This book gives service agencies a way to look at what they do and to figure out what they do well and what they could do better. How Often? Whenever it is needed.
GET INVOLVED! is a pamphlet developed by the Area IV Board on Developmental Disabilities. It provides easy-to-understand information on the federal, state and local governments. It also has a great section on voting which includes: Why Vote?, Who Can Vote?, How Do I Register to Vote?, Where Do I Vote?, and If You Need Help. For free copies of this great resource, call or write:
Area IV Board on Developmental Disabilities
236 Georgia Street, S. 201
Vallejo, CA 94590-5930 (707) 648-4073